Science for Salein theAutism Wars

Foreword

Medically necessary autism tr eatment,
the court battle for health insurance andwhy health technology academics are
enemy number one

Sabrina Fr eeman Ph.D.
For eword by: Gary S. MayersoniScience for Sale in the Autism Wars

Foreword

Copyright © 2003 by SKF Books USA, Inc. All rights reserved.
No part of this book may be reproduced in any form orby any means without the prior written permission of the
publisher.

Contents

Any errors and omissions are the responsibility of the
Library of Congress Control Number: 2003092216
National Library of Canada Cataloguing in Publication Data

Foreword by Gary Mayerson .......................................................................... v
Introduction .......................................................................................................... 1
Part I: BCOHTA’s Attempt To Discredit Lovaas Autism Treatment

Freeman, Sabrina Karen, 1958Science for sale in the autism wars : medically necessary autism treatment, the court battle
for health insurance and why health technology academics are enemy number one / Sabrina K.
Freeman.

Chapter 1: What is the B.C. Office of Health Technology Assessment• B.C. Office of Health Technology Assessment: Independent or agentof government? ....................................................................................... 8• What’s Their True Mission? ...................................................................... 10• BCOHTA is Dependent on Government Funding .................................... 11• Health Technology in Over Their Heads with Autism ........................... 12

Includes bibliographical references and index.
ISBN 0-9657565-3-X

Chapter 2: When Academics Go Bad: Bias in Health Technology Research• University of British Columbia Does Government Advocacy Research
for Court ................................................................................................. 20• Setting up the Strawman: ‘cure’ vs. loss of autism diagnosis ................ 22• Spotlight on Lovaas Only: BCOHTA ignores all other treatments ....... 28• The Double Standard: ABA is okay but Lovaas is experimental ............. 31• Exclude What Hurts: BCOHTA falls far short of exhaustive
research ....................................................................................................... 34

1. Autism in children--Treatment--British Columbia. 2. Medical care--British Columbia--Needs
assessment. 3. Medical technology--British Columbia--Evaluation. I. Title.
RJ506.A9F73 2003		
362.1’98928982’009711		
C2003-910550-4
Co-published by:
SKF Books, Inc.,
20641 46th Ave.,
Langley, B.C. V3A 3H8
SKF Books USA, Inc.,
413B 19th St. #322,
Lynden, WA 98264
Printed in the United States of America
First Editionii

Chapter 3: How Health Technology’s Attack on Lovaas Autism Treatment Fails
The Charge Lovaas Didn’t Compare Different Approaches to Treatment . 39
• How Children Were Grouped in Lovaas’s Autism Research ................. 40• Is It Ethical to Deny Treatment to Children? ......................................... 49• The Claim That Lovaas Does Not Measure ‘real life’ Data .................... 50• Psychological Assessment of Children in Lovaas’ Research ................. 52• Did Lovaas Provide Enough Details On How the Treatment Is•
Implemented? .......................................................................................... 54
Is the Treatment Still Effective Over Time? ............................................ 59• Have Other Replicated the Success of Lovaas Treatment? ..................... 66• The Classic Aversives Ruse ..................................................................... 68•
Chapter 4: BCOHTA’s Deceptive Use of Research
State of the Science in Autism .................................................................. 72• Do Children with Autism Do Well Without Treatment? .......................... 73• Is Day-care Good Enough to Treat Autism? ............................................ 75• Do We Need to Ration Autism Diagnoses? ............................................. 77• Questionable Use of Other Scholars’ Research ...................................... 79iii

Science for Sale in the Autism Wars

Foreword• BCOHTA and the American Psychological Association ........................ 81•
Chapter 5: BCOHTA and Provincial Policy
Parents and Daycare Workers as Autism Therapists? ............................. 86• Diagnosis Control .................................................................................... 91• Are Generic Supports Effective for Autism? .......................................... 92• Are Parents Naive Consumers? ................................................................. 93• Lovaas Labelled as Experimental ........................................................ 95•
Chapter 6: Clinicians versus Health Policy Technocrats: In Defense of the New
York Department of Health Report
BCOHTA’s Selective Analysis of the New York State Autism• Report ............................................................................................... 99
Natural Competitors? Health Technology Assessment vs. 		
• Clinical Guidelines ................................................................................. 101
Chapter 7: Academic Rivalry in the Field of Autism Research
Dr. Sally Rogers .................................................................................... 106• Drs. Schopler and Mesibov ................................................................... 107• BCOHTA Reliance on Dr. Gresham ..................................................... 108• 		Part II: What Happened in the Supreme Court of British Columbia?
Chapter 8: B.C. Supreme Court’s Landmark Ruling
Highlights of Justice Allan’s Judgment on Autism Treatment .............. 116
Chapter• 9: BCOHTA On the StandThe Office of Health Technology On the Stand .................................... 126
BCOHTA’s Government Links ............................................................. 126• BCOHTA’s “Made for Court” Advocacy Analysis ............................... 138• BCOHTA Embraces Unsubstantiated Autism Programs and 		• Research ................................................................................................ 158• Double Standard: Lovaas Studies Meet BCOHTA Criteria
for Attack............................................................................................... 164• BCOHTA’s Report Excludes Relevant Articles That Support 		LovaasTreatment .................................................................................. 165• Analysis of BCOHTA Critique of Lovaas Treatment Research ........... 175
What Happened After BCOHTA Report Ruled Biased ........................ 208•
Afterword•.......................................................................................................... 215
Endnotes ................................................................................................................. 219
References .............................................................................................................. 231
Index ....................................................................................................................... 239

iv*

Science for Sale in the Autism Wars is a story crying out to be told. Dr.
Sabrina Freeman, author of the popular “Teach Me Language” series,
expertly describes in her direct, no-holds-barred fashion precisely howhealth technology science was hijacked and distorted by British Columbia
government ministries and their supporters, all in an effort to deprive children
with autism of a “medically necessary” autism intervention that would appear
to be the intervention. Dr. Freeman pulls no punches in naming names.
She exposes how and why government functionaries placed in charge ofprotecting children with autism have breached the public trust and why they
continue to do so, despite multiple adverse court rulings.
The autism intervention in question—intensive one-to-one Applied
Behavior Analysis (“ABA”)— is not some experimental or unproven fad
treatment. To the contrary, as Dr. Freeman explains, decades of research
published in respected, peer-review journals have supported intensive,
one-to-one ABA as the singular autism intervention that has the capacity
to significantly remediate autism’s devastating impact.

*Gary Mayerson is the founder of Mayerson & Associates, a law practice in Manhattan

dedicated almost exclusively to the representation of children and adolescents diagnosed
with autism spectrum disorders. Mr. Mayerson has testified before the United States Houseof Representatives on the subject of autism-related litigation brought under federal law. His
chapter, “Notes From the Front, The Current Wave in ABA Litigation” appears in Dr. Lovaas’
most recent book, Teaching Children With Developmental Delays (Pro-Ed 2003).

v

Science for Sale in the Autism Wars

In the most well known of the published studies, first published in
1987, Dr. Ivar Lovaas and his colleagues at UCLA reported that approximately
47% of young children in an experimental group receiving 40 hours per
week of 1:1 ABA interventions for 2-3 years were succeeding in mainstream
educational settings and passing as “indistinguishable.” While theremaining 53% of the children in the experimental group did not become“indistinguishable,” they still improved markedly. Even today, there is no
outcome data that rivals the outcomes reported in Dr. Lovaas’ 1987 study—astudy that the Surgeon General of the United States has blessed as a “welldesigned study.” No longer does the diagnosis of autism necessarily have tobe the equivalent of a death sentence.
The story behind the now famous Auton court case—a case that the
government lost at the Supreme Court level as well as on appeal to the British
Columbia Court of Appeal, presents a pitched battle that has been waged for
centuries. Ever since Galileo was hauled before the Inquisition, fact-based
science has been forced to fight orthodoxy and the institutional status quo. As
Robert Ingersoll wrote in 1877, “every science has been an outcast.” Intensive
ABA has been no exception, ostensibly because of its initial financial cost.
What makes the Auton case different from the prior confrontations,however, is that the government spent a tidy fortune hiring a phalanx of socalled “experts.” These experts, holding themselves out as scientists, werecompensated handsomely by the government to offer the opinion that the
ABA intervention is not “medically necessary.” The government’s experts
offered excuse after excuse and pretext after pretext as to why the publishedresearch supporting the efficacy of ABA is imperfect, and not to be relied upon.
Stephen Jay Gould, the late evolutionary biologist and paleontologist,
wrote “The essence of science is intelligent sampling, not sitting in a single
place and trying to get every last one.”* The “intelligent sampling” approach,however, was lost on the government’s witnesses. The government’s experts
demanded a level of “sampling” perfection that has, to date, still not beenachieved by any scientist in the world studying the efficacy of intensive ABAinterventions. Since every child with an autism spectrum disorder will present
differently, it would be difficult, if not impossible, to conduct subject selection*vi

Forewordsampling any better than Dr. Lovaas and his colleagues did. Significantly,
none of the government’s witnesses ever conducted subject selection
sampling (for autism) at the level they insist Dr. Lovaas should have adheredto. Hence, the origin of Dr. Freeman’s chapter, “When Academics Go Bad.”As Dr. Freeman explains, the Auton case turned into a case essentiallypitting science against pseudoscience or non-science. Everyone may beentitled to their own beliefs, but certainly no one is entitled to their own“facts.” Fortunately, the British Columbia Supreme Court and a unanimous
British Columbia Court of Appeal saw through the government’s hollow
evidentiary presentation. Both courts held that intensive ABA is “medicallynecessary.” Undaunted, the Government of British Columbia is continuing
to press an appeal to the Supreme Court of Canada. Undoubtedly, one day,someone will quantify the extent of the fortune the government continues
to spend trying to prove that intensive ABA is not “medically necessary.” Itgoes without saying that these public funds could be put to a more noble use.
Dr. Freeman, a skilled and articulate advocate, performs theinvestigatory equivalent of an autopsy, wielding a razor-sharp scalpel. With
the reported incidence of autism clearly on the rise, Dr. Freeman’s analysis of
the Auton case has profound implications for a whole generation of young
children (and their families) very much at risk. Dr. Freeman sends a powerful
message about the search for truth, and how that search is being distorted
and corrupted by handsomely compensated health technology scientists
who are allowing their integrity to be compromised. These academics andscientists would be well served to adhere to the first commandment in the
Hippocratic Oath: “First, do no harm.”											

Gary S. Mayerson
New York, New York

Gould, S. J. Dinosaur In A Haystack. New York: Harmony Books, 1995, p. 153.

vii

Science for Sale in the Autism Wars

viii

Introduction

Introduction
Science for Sale in the Autism Wars is a book about a very important part of theAutism Wars in Canada — the role played by government funded academics
against parents, in the difficult struggle to provide children with publicly
funded health care insurance for medically necessary autism treatmentthat is their constitutional right. Science for Sale in the Autism Wars takes aclose, hard look at the Health Technology Assessment movement throughthe lens of what amounts to a rare case study opportunity — the Auton etal. v. British Columbia court case, which attempted to gain publicly funded
autism treatment for children. The case study shows that health technology
has become a biased enterprise conducted by academics who seem to view
themselves as the guardians of Medicare, the publicly funded health caresystem in Canada. This book exposes advocacy research from an academic
group that is not accustomed to the limelight of scrutiny. One usually does
not hear much about them, but they have the close ear of government andhave tremendous influence regarding what gets into — and is kept out of— the health care system. In that sense, exposing the government’s autism
wars agenda exposes the health technology movement as a whole and acts
as an inoculation kit against biased, anti-autism treatment advocacy researchof the Health Technology movement. Science for Sale in the Autism Warsis also dedicated to helping those in need of expensive autism health-care
who are fighting to have that treatment covered, whether by government
or private health insurance. Although the group of academics discussed
here are situated in Canada, there are health technologists everywhere. So
work done in Canada has grave implications for parents of children in the
United States and the rest of the world. American insurance companies

1Science for Sale in the Autism Wars

Part II of Science for Sale in the Autism Wars describes the outcome of the B.C.
Supreme Court case and the scathing rejection by the court of the BCOHTA
report. In addition, the book documents the rejectionist and arrogant
conduct of the BCOHTA subsequent to the court ruling on Lovaas treatment
and the biased health technology research paper.
Throughout Science for Sale in the Autism Wars, we use the term Lovaas
Autism Treatment as a convenient shorthand for the ground breaking
behavioral treatment method pioneered by Dr. Lovaas and colleagues in thelate 1960s and refined during 30 years of research to become widely known
as Early Intensive Behavioural Intervention (EIBI). Aside from reducing along name to a more conventional short one, is the need to differentiate thetreatment protocol developed by Dr. Lovaas and colleagues from generic
Applied Behavior Analysis or ABA, which is a very large field with only a small
fraction of the research applied to autism and pervasive developmental
disorders. More recently, this type of autism treatment has been referred toas science-based Intensive Behavioral Intervention (IBI). It is considered to bescience-based insofar as it is based on decades of sound, generally accepted
research, the foundations of which were originally formed by Dr. Lovaas andcarried forward for decades by academics who followed. Lovaas’ treatment
protocol is often referred to as Early Intensive Behavioral Intervention because
it is ideally a treatment that should begin from the moment of diagnosis,
preferably as early as age two and is delivered “intensively,” meaning
approaching or exceeding 40 hours per week of treatment. Research has
shown that although children of any age benefit from intensive behaviouralintervention, the youngest children make the most remarkable gains.
Although some academics may be mildly troubled by the term “Lovaas Autism
Treatment,” for a parent, this is the most direct way, specifically, to refer to whatparents of children with autism are in fact demanding for their children andwhat the community of professionals recommend as medically necessary,
best practice treatment for autism spectrum disorders. Therefore, for clarity
and to help differentiate the “genuine article” from terms often deliberately
used to obfuscate and generate confusion, the term Lovaas Autism Treatment
is used throughout Science for Sale in the Autism Wars, as it was used in the
B.C. Supreme Court case against the government of British Columbia and is
still used in health technology literature today.
There is an afterword that documents findings of the B.C. Court of Appeal
which heard the Government of British Columbia’s appeal of the Auton2

Introduction

and physician journals have already incorporated the autism report writtenby health technologists in Canada into their web-sites as justification for
not funding or supporting intensive behavioral treatment for children with
autism. Damage the health technology movement has done in the aftermathof their far-reaching report is discussed in some detail in the book.
Parents of children with autism fighting for their children’s rights to medicallynecessary health care for autistic disorder have been at the sharp endof the Health Technology Assessment stick for only one reason: HealthTechnology tried to convince the courts, at the behest of government, thatthe science-based standard for autism treatments, Dr. I.O. Lovaas’“Intensive
Behavioral Treatment” (autism treatment), is a purportedly experimental,
unsubstantiated therapy, unworthy of health insurance coverage. This healthtechnology argument, rejected by superior courts of British Columbia, is still
being made by this group of health policy academics.
Part I of Science for Sale in the Autism Wars provides an in-depth analysisof the British Columbia Office of Health Technology Assessment (BCOHTA)
report on Intensive Behavioural Treatment, also referred to as Lovaas Autism
Treatment. The BCOHTA report, entitled Autism and Lovaas Treatment: asystematic review of effectiveness evidence, was produced at the requestof the B.C. Ministry of Health for specific use by government lawyers inlegal defense of the government in British Columbia Supreme Court. Thiscase pitted children with autism against the government of the thirdlargest province in Canada, and one of the most affluent G-8 nations in theworld. The BCOHTA was brought in by government essentially as academic
mercenaries to convince the court that government does not have a legal
obligation to fund science-based treatment for autism because according
to government’s beholden health technology academics, there is no provenautism treatment at this time. As academics affiliated with the Universityof British Columbia, BCOHTA researchers were expected to use science todiscredit the Lovaas Autism Treatment Protocol and the favourable economic
consultant’s cost-benefit analysis presented by families in court. Part I details
the techniques used by the BCOHTA to distort and misrepresent the state of
the science in autism treatment to discredit legitimate research underlying
Intensive Behavioral Treatment pioneered by Lovaas and colleagues; as ofthis publication, the Lovaas protocol is the only proven treatment for the
intractable disorder of autism.

3

Science for Sale in the Autism Warscase. After a second legal defeat and continued refusal to fund medicallynecessary autism treatment, the Government of British Columbia applied to
the Supreme Court of Canada for a final opportunity to appeal the landmark
Auton decision on medically necessary autism treatment. Now that theSupreme Court of Canada has chosen to hear this case, it is possible children
with autism across Canada will finally be welcomed into the national medicare
system on equal terms with those who suffer from physical ailments. The

4

Chapter 1: What is the BC Office of Health Technology Assessment?

Part IBCOHTA’s Attempt To
Discredit Lovaas Autism
Treatment
Chapters in Part I

1 What is the B.C. Office of HealthTechnology Assessment?
2 When Academics Go Bad: Bias inHealthTechnology Research
3 How Health Technology’s Attack on Lovaas Autism TreatmentFails
4 BCOHTA’s Deceptive Use of Research
5 BCOHTA and Provincial Policy
6 Clinicians vs. HealthPolicy Technocrats: In Defence of theNew York Department of HealthR eport
7 Academic Rivalry inthe Fieldof Autism R esearch

5Part I: BCOHTA’s Attempt To Discredit Lovaas Autism Treatment

Part I presents an analysis of the Lovaas Treatment report the British Columbia Officeof Health Technology Assessment (BCOHTA) introduced into B.C. Supreme Court in
the Auton case. The report has been dissected, point by point, because it is primarily
in the details where the BCOHTA agenda is laid bare. Due to the complexity of theanalysis, summaries of each section are provided in the margins of each page. In thisway, the highlights of the analysis can be read quickly, but the entire analysis is also
provided for readers interested in the details.
The highlights of this analysis have been summarized using a thematic approach to
expose the variety of techniques the BCOHTA uses to discredit Lovaas. Although theirreport was written to discredit the work of Dr. Lovaas and colleagues in a court case,the same techniques can be used by unscrupulous academics to produce advocacy
research on other topics. The tool box is generic.
The analysis is divided into seven sections that present information on who the
BCOHTA is and how it attempted to discredit the entire field of Early Intensive
Behavioral Intervention.

6

Chapter 1: What is the BC Office of Health Technology Assessment?

Chapter 1
What is the B.C. Office of
Health Technology
Assessment
In This Chapter
B.C. Office of HealthTechnolgy Assessment: Independent or agent of government?
What’s the TrueMission?
BCOHTA is Dependent on Government Funding
Health Technolgy in Over Their Heads withAutism

7Part I: BCOHTA’s Attempt To Discredit Lovaas Autism Treatment“The assessment request reflects particular issues raisedin legal proceeding filed against the Government of BC”(emphasis added).4
Office analysts admit that the government’s request for research is basedon the issues that flow from the lawsuit that parents launched against the
government. In other words, the BCOHTA’s desire to study Lovaas was a
direct result of a court case against the government that is the sole sourceof the BCOHTA’s funding.
The BCOHTA sees its role as promoting:
The BCOHTA’s desire
to study Lovaas wasa direct result of acourt case against
the government thatis the source of the
BCOHTA’s funding.

...the use of health technology assessment research
appropriate to issues of policy planning, and utilization atgovernmental operational, and clinical levels5 (emphasis
added).
The Report goes on to state that its“primary purpose” is “to examine scientific evidence on theeffectiveness of current and developing health technologies[so BCOHTA can] identify the best use of limited resources...”6(emphasis added).
Put simply, the BCOHTA receives Ministry of Health money to advise
government on how best to make health care resource allocation decisions.
The BCOHTA gives government the “academic” legitimacy to support what
can amount to a restrictive policy on the developing health technologies
deemed to be expensive and ineffective, and therefore, a threat to thesustainability of the health care system.
The BCOHTA researchers also see themselves as close advisors to the Ministryof Health. Their web site states that the Office’s ability to identify “the bestuse of limited resources...” provides “valuable assistance to both public andprivate sectors in their policy and development planning” 7 (emphasis added).
In other words, they understand their role as the “gate keepers” to Canada’s
Medicare system as well as to U.S. health insurance companies.

8

Chapter 1: What is the BC Office of Health Technology Assessment?

A thorough analysis of the British Columbia Office of Technology Assessment(BCOHTA) report on Lovaas Treatment must include a discussion about thenature of the BCOHTA as an organization. An examination of the BCOHTA isnecessary because this government funded “research” organization is cloakedin academic legitimacy and claims to be unbiased, yet its works has beenfound by the Supreme Court of British Columbia to be, “obviously biased.”

B.C. Office of Health Technology Assessment: Independent or agentsof government?
The BCOHTA gives
government the“academic” legitimacy
to support what
can amount to a
restrictive policy on
developing healthtechnologies.

Although physically located at the University of British Columbia, from afinancial and functional standpoint, the Centre for Health Services andPolicy Research (CHSPR) appears more closely tied to provincial government
than to the University. The Centre was officially opened by the Minister of
Health in 1991. Funding supporting the research work at the Centre comesfrom the province, through a, “Sustaining grant to the center from the B.C.
Ministry of Health and Ministry Responsible for Seniors.”1 According to the
B.C. Comptroller General, the Ministry of Health grant to the University in
1998-1999 was nearly 8 million dollars.2 The BCOHTA is part of the CHSPR
and receives funding from the Ministry of Health through the Centre.
Since the BCOHTA relies upon Ministry of Health funding, the Office cannot
be looked upon as a center of independent, disinterested scholars. There is avery real possibility that the money received by the Office from the Ministry of
Health serves to bias the research agenda as well as the outcome of research
conducted by the Office analysts. The BCOHTA research on Lovaas Treatment
is a case in point. The research agenda was set by government Ministries
in late 1999 when the government called upon the Office to help defendthem in court to discredit the autism treatment developed by Lovaas andcolleagues. The Report states that:Three BC government Ministries... jointly requested the BC
Office of Health Technology Assessment (BCOHTA) to assess
the effectiveness evidence regarding a program of intensive
behavioural therapy known as “Lovaas treatment.”3
The Report also states that:

9Part I: BCOHTA’s Attempt To Discredit Lovaas Autism Treatment

BCOHTA is an organization funded by the B.C. Government to help themevaluate new health technologies and treatments, including a cost-benefit
perspective, so as to save limited public health care dollars which support
Medicare.
Consistent with its mission, the BCOHTA was enlisted to fight the Autism
War for government and used every weapon at its disposal to undermine
the credibility of the research done by Dr. Lovaas and colleagues in the areaof intensive behavioural treatment for children with autism. Based on the
BCOHTA report, the B.C. Government argued in court that the treatment
was experimental and therefore undeserving of public health care funding.
In short, a claimof unbiased,
objective scientificenquiry in whichthese purportedly
disinterested
academics work
to add to the bodyof knowledge is
deceptive.

BCOHTA is Dependent on Government Funding
All accredited universities have ethical rules or guidelines which researchersat the institution must follow. The University of British Columbia (UBC) is no
exception. In fact, the University has very clear conflict of interest guidelines
which all affiliated researchers must honor. UBC’s Policy Number 97, entitled
Conflict of Interest, states that:
The University is a forum for critical discussion and debate
and a locus of unbiased enquiry.” It is responsible foradvancing and disseminating knowledge. It is important toretain the public’s trust and confidence in order to play sucha role”13 (emphasis added).
The UBC policy also states:
The university expects each of its members - faculty andstaff - to act ethically and with integrity. Among theseobligations, members acting on the University’s behalf, must
avoid ethical, legal, financial or other conflicts of interest.”14(emphasis added).
The U.B.C. policy defines conflict of interest as:a breach of an obligation to the University that has theeffect or intention of advancing one’s own interest or the10

Chapter 1: What is the BC Office of Health Technology Assessment?

B.C. Government dependence upon the Centre (CHSPR) and the Office(BCOHTA) is in some ways similar to the relationship deputy ministers andsenior bureaucrats enjoy. Meetings between the government and seniorCentre employees happen on a regular basis to give policy advice andsupport. This relationship was described in some detail on the Centre’s web
site in 1999.

The Centre for Health
Sciences Policy
Research (CHSPR)
and the B.C. Office of
Health Technology
Assessment (BCOHTA)
are breaking
University ethicalguidelines andpolicies.

According to the Centre, CHSPR analysts, “regularly present relevant researchfindings to [health] ministry staff.”8 They also show that the Center “is a sourceof advice and assistance to external agencies, both governmental and nongovernmental organizations in B.C., Canada and abroad”9 (emphasis added).
In addition, the Center is “engaged in a number of endeavors designed todisseminate research results [including] participation in health policy-related
committees”10 (emphasis added). Their research agenda is clearly influenced
by the B.C. Government, based on the fact that “continuous communication
with provincial and federal governmental bodies assures that the research
agenda is both relevant and timely”11 (emphasis added). The Centre’s web
site in 1999 included the following description of its Director:[The Director] of the Centre for Health Services and Policy
Research at UBC... and was in 1998 one of five external (nongovernment) members of the Advisory Committee on HealthServices, which reports to the Federal/Provincial/Territorial
Conference of Deputy Ministers of Health12 (emphasis added).
The Centre’s financial dependency on government money and their close
relationship with the B.C. Government shows that the research agenda of the
BCOHTA is largely set by the agenda of government, rather than the interestsof science and academe. Consequently, at the outset, the agenda of the
Office regarding research of Lovaas Treatment is the agenda of government
facing a lawsuit by parents seeking publicly funded autism treatment.
In short, a claim of unbiased, objective scientific enquiry in which these
purportedly disinterested academics work to add to the body of knowledge
is deceptive in the extreme.

What’s The True Mission?
Who is the BCOHTA and what does it do? As previously mentioned, the11Part I: BCOHTA’s Attempt To Discredit Lovaas Autism Treatment

strikingly absent amongst BCOHTA faculty and staff. The first author of the
BCOHTA report on Lovaas Treatment is Dr. Ken Bassett, an Assistant Professor
in the Department of Family Practice. His current research interests are intechnology assessment theory and health policy related to genetic testingof diverse cultural groups. The senior author is also the chair of the Drug
Assessment Work Group of the Therapeutics Initiative, in the Departmentof Pharmacology and Therapeutics. His department conducts systematic
reviews for government of all drugs licensed for sale in British Columbia.

The Office had at
the very least an
apparent financial
conflict of interest
when it undertook to
do the Lovaas reportfor the court case.

The Associate Director of the Center for Health Services and Policy Research,and the third author of the report is Dr. Arminee Kazanjian, the founding chairof the B.C. Office of Health Technology Assessment. Dr. Kazanjian holds a
Masters of Arts Degree in Sociology from the University of Toronto and a
Doctor of Philosophy in Sociology from the Sorbonne.
The second author of the BCOHTA report on Lovaas Treatment, Ms. Carolyn
Green, is a research coordinator at the BCOHTA. She has been project leader
on “technology assessment” projects including pharmaceutical, diagnostic
and screening technology, and complementary therapy. Ms. Green’s researchinterests also include research update in health policy and planning andthe dissemination of technology assessment findings. She has a Masters of
Science degree in Health Care and Epidemiology and a Bachelor of Health
Science in Physiotherapy.
In short, none of the three analysts who wrote the Report on Lovaas
Effectiveness have any expertise, training or experience in autism diagnosis,
research or treatment. The authors of the BCOHTA report admit they do nothave the necessary expertise in autism research, when they state that:
While it is outside the expertise of BCOHTA researchers tointerpret the validity of this critique or the responses by
Lovaas et al. these comments are included because they raise
important issues regarding the base line characteristics ofthe study population17 (emphasis added).
The BCOHTA authors further expose their lack of knowledge and autism
expertise when they state that:
Several authors discussed the relative merits of various

12Chapter 1: What is the BC Office of Health Technology Assessment?

interests of others in a way detrimental to the interests or
potentially harmful to the integrity or fundamental missionof the University”15 (emphasis added).
The UBC policy regarding conflict of interest goes on to state that:
Conflict of interest in the conduct and reporting of research/creative/professional work can take many forms. In addition,
the University’s commitment to liaise with industry andtransfer technology will often result in arrangements which
are potential conflicts of interest.”16
None of the three
analysts who wrote
the Report on
Lovaas Effectivenesshave any expertise,training orexperience in autism
diagnosis, research ortreatment.

In the same way that outside funding from industry can result in potential
conflicts of interest, it is also true that funding from government can resultin potential conflicts of interests. The BCOHTA is particularly susceptible
to a conflict of interest when the Ministry of Health’s research agenda isdetermined by its legal defense needs before the Supreme Court of British
Columbia. UBC’s participation in the Auton case is a pure example of conflictof interest.
As previously mentioned, the Centre, which funds the BCOHTA, regularly
receives millions of dollars from the B.C. Government through a sustaining
grant from the B.C. Ministry of Health. The existence of the Centre that
operates the Office is dependent upon funding from the government. At
the time the Report on Lovaas was written, this same government was beingsued in the Supreme Court of British Columbia by parents of children with
autism seeking Lovaas Autism Treatment. The Office had at the very leastan apparent financial conflict of interest when it undertook to do the Lovaas
report for the court case. As a result, it is suggested that the BCOHTA Report
does not meet the test of disinterested, impartial scientific enquiry. It’s for
the University of British Columbia to determine what penalties should apply
for violation of its conflict of interests rules.

Health Technology in Over Their Heads With Autism
The authors of the BCOHTA report on Lovaas Treatment lack expertise indisciplines related to autism. Specifically, expertise in psychology, neurology,
psychiatry, neuropsychology, pediatrics, or applied behavioral analysis is13

Part I: BCOHTA’s Attempt To Discredit Lovaas Autism Treatment

Evidence
on Craniosacral Therapy• Tibet: The Final Frontier• Utilization of Lipid Lowering Drugs in B.C.
See the BCOHTA web-site (www.chspr.ubc.ca/bcohta) for the complete
articles.

Based on thequalifications ofanalysts at the
BCOHTA and thecontent of theirreports, it is apparent
that there is a bias,
albeit perhaps
unintended, awayfrom the analysis oftechnologies relating
to neurologicaldisorders, such as
autism.

Highlighting the lack of autism expertise is the striking absence of BCOHTA
research in the fields of mental health, child development, neurology or
psychiatry. Although there is no expectation that Health Technologists
be experts in the field of autism, they should have enough knowledge
to understand the debates from the literature before they present reportconclusions harmful to children with autism. Autism research and treatment
has simply never been an area of focus or health research priority for the B.C.
Office of Health Technology Assessment. Such a restricted view of humanhealth and a lack of BCOHTA autism expertise are important issues when
considering the Office’s analysis of Lovaas Autism Treatment. These issues
suggest that Office analysts may have, in effect, “bitten off more than they
could chew” when attempting to evaluate psychosocial autism treatment.
Apparent expertise in pharmaceutical interventions does not qualify anorganization to evaluate autism treatment.
The lack of expertise in neurological disorders on the part of the BCOHTA
is not surprising and certainly not uncommon. In the United States, where
health insurance is largely detached from government, the health technology
assessment industry primarily works for the private health insurance industry.
The physical versus neurological research bias that characterizes healthtechnology assessment in the U.S. is a component of health insurance
practices that often discriminate against mental disabilities in terms offunding policies for treatments. The American Federal Government andseveral state governments have responded to this widespread discrimination
by enacting Mental Health Parity legislation. In several U.S. States, it is now
required that health insurance fund mental health treatments on the same
basis as physical treatments.
The American Psychological Association states that:Discrimination in insurance for mental health services mustend if all Americans are to receive truly fair and equitable

14Chapter 1: What is the BC Office of Health Technology Assessment?

tests of psychosocial development. Again, these issues arebeyond the expertise of BCOHTA researchers...18 (emphasis
added).
Most scholars and outside observers would agree that an in-depth
understanding of psychosocial intervention is crucial for researchers who
publish a report analyzing effectiveness of behavioural autism treatment.
The BCOHTA report on Lovaas Treatment fails terribly in this regard.

The physical versus
neurologicalresearch bias thatcharacterizes
health technology
assessment in the
U.S. is a componentof health insurance
practices that
often discriminate
against mental
disabilities in termsof funding policies
for treatments.

Based on the qualifications of analysts at the BCOHTA and the content of
their reports, it is apparent that there is a bias, albeit perhaps unintended,away from the analysis of technologies relating to neurological disorders,such as autism. Below is the complete list of BCOHTA Projects appearing on
the Office web site at the time of the Lovaas Report’s publication:• Acupuncture in the Treatment of Drug and Alcohol Dependency• British Columbia Prostate Cancer Trends and Service Utilization in
the Post PSA Era• Effectiveness of Coronary Stents: Update• Cholesterol Testing and Treatment in Women• Does Famciclovir Cause Post-Herpetic Neuralgia?
• Effectiveness of Lipid Lowering Drugs in Women and the Elderly• Endovascular Graft Treatment of Infrarenal Aortic Aneurysms• Health Policy and the New Genetics• Hearing Screening• Hereditary Cancer Screening• Hip Replacement Surgery: A Briefing Paper• Lipid Lowering Therapy• ‘Normal’ Bone Mass, Aging Bodies, Marketing of Fear
• The Predictive Value of Methods for Assessing Fracture Risk
• Relative Efficacy and Safety of Low Molecular Weight Heparin
Preparations for Non-Hospital Prophylaxis and Treatment of
VenousThrombo-Embolic Disease• Review of Triple Marker Screening in British Columbia• The Role of Clinical Practice Guidelines in Health Policy• Rules of Scientific Inquiry and Clinical Trials: Improvement is Needed• Strategic Framework for Public Health Nursing• A Systematic Review and Critical Appraisal of the Scientific

15Part I: BCOHTA’s Attempt To Discredit Lovaas Autism Treatment

The California bill is a good example of legislation enacted to contend withbias of health care insurance plans against mental disabilities. California Law(Assembly Bill no. 88) states that:...this bill would require a health care service plan contract ordisability insurance policy issues, amended, or renewed on
or after July 1, 2000, to provide coverage for the diagnosis
and medically necessary treatment of severe mental illnesses,
as defined, of a person of any age, and of serious emotional
disturbances of a child, under the same terms and conditions
applied to other medical conditions23 (emphasis added).
The B.C. Government finds itself in an
awkward position as it
functions in both therole of the only healthinsurance “company”
as well as the sole
regulator of that B.C.
health insurance company; clearly a conflictof interest.

The California mental health parity legislation defines ‘‘severe mental illnesses’’
to include:(1) Schizophrenia(2) Schizo-affective disorder(3) Bipolar disorder (manic-depressive illness)(4) Major depressive disorders(5) Panic disorder(6) Obsessive-compulsive disorder(7) Pervasive developmental disorder or autism(8) Anorexia nervosa(9) Bulimia nervosa24 (emphasis added).
In contrast to the United States, in British Columbia (as in the rest of Canada),
health insurance is owned and operated by provincial governments. There is,in practice, only one insurance “company” per province. The need for mental
health parity protection in British Columbia is comparable to the need in the
U.S. However, the B.C. Government finds itself in an awkward position as it
functions in both the role of the only health insurance “company” as well as
the sole regulator of that B.C. health insurance company; clearly a conflict ofinterest. In B.C., the need for government regulation to protect the healthinsurance rights of the neurologically disabled, competes with the needs ofrunning a health insurance agency that is cost effective. The BCOHTA andthe Ministry of Health typically concern themselves with saving money rather
than protecting the individual’s right to treatment.
This is a structural problem that will likely persist, in large measure due to a
profound lack of transparency and accountability in B.C.’s government-run
health care system. The public has no means (and regrettably no sanctioned

16

Chapter 1: What is the BC Office of Health Technology Assessment?

health care. Indeed, public outcry for fairness in mental
health insurance coverage has led to laws requiring fairer
coverage for these services. Maryland, Minnesota, Maine,
New Hampshire, and Rhode Island, among other states,
have enacted laws to require that coverage for mental illness
services be on a par with services for physical health. Several
other states are considering similar legislation.19

The BCOHTA and theMinistry of Healthtypically concern
themselves withsaving money rather
than protecting theindividual’s right totreatment.

The U.S. Congress has also acted. In 1996, Congress passed the Mental
Health Parity Act. This landmark legislation prohibits insurers from imposing
lifetime and annual benefit limits on mental health services that insurers do
not impose on services for physical health.20 In other words, under U.S. law,health insurance companies are not allowed to discriminate against children
with autism when it comes to coverage for autism treatment.
The U.S. National Institute of Mental Health also recognizes that thisdiscriminatory practice is widespread. It states that:
In general, Americans find that the level of services for theirmental illnesses is less than that for other illnesses suchas cancer, diabetes, or heart disease. An American with
Parkinson’s disease, one kind of brain disease affecting theneurotransmitter dopamine, might have full coverage, while
another with schizophrenia, a brain disease that also affects
dopamine, might have none. The bottom line of this reality
is that many Americans with mental disorders do not receive
treatment. Even those who do have access to treatment
might not have appropriate or high quality care.21
In addition to U.S. Federal legislation, Mental Health Parity Act of 1996, thefollowing U.S. States have enacted mental health parity legislation:...Arkansas, California, Colorado, Connecticut, Delaware,
Florida, Georgia, Hawaii, Indiana, Louisiana, Maine, Maryland,
Minnesota, Missouri, Montana, Nebraska, New Hampshire,
New Jersey, North Carolina, Oklahoma, Rhode Island, South
Dakota, Tennessee, Texas, Vermont and Virginia.22

17

Part I: BCOHTA’s Attempt To Discredit Lovaas Autism Treatmentright) to peer into government’s health policy committee process along themodel of public affairs windows such as C-SPAN (U.S.) or CPAC (Canada). Vitally
important decisions on health insurance policy in B.C. are routinely madewithout public knowledge or input. Those who wield the disproportionate
influence are an elite club of university health policy technocrats who are

18

Chapter 2: When Academics Go Bad: Bias in Health Technology Research

Chapter 2
When Academics Go Bad:
Bias in Health Technology
Research
In This Chapter
University of B ritishColumbia Does Government Advocacy Research for Court
Strawmanof Autism Cure vs. Loss of Autism Diagnosis
Spotlight on Lovaas Only: BCOHTA ignores all other treatments
The Double Standard: ABA is okay but L ovaas is experimental
Exclude What Hurts: B COHTA falls far short of exhaustive research

19Chapter 2: When Academics Go Bad: Bias in Health Technology ResearchPart I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

It is useful for this discussion to broadly categorize research into three types:

justify denial of treatment funds.

BCOHTA researchers
use “selective
analysis” in the
conduct of theiradvocacy research.

• Exclusive Spotlight on Lovaas: Office analysts frame theirquestion narrowly and examine only Lovaas Treatment. A BCOHTA
analysis of the scientific validity of alternate so-called “treatment”
options, including those currently funded by the BC government,
is conspicuously absent. This selective and restricted purpose also
serves to avoid a thorough examination of autism treatment “bestpractices.” If they do not compare all other autism interventions,they will not leave themselves open to arrive at the uncomfortableconclusion that Lovaas and colleagues may present the mostcompelling data regarding bona fide, effective autism treatment.
• The double standard: BCOHTA researchers accept, without question,
the science behind Applied Behavioral Analysis, which is very closely
linked to the work of Lovaas and colleagues. In addition, they do
not perform a rigorous analysis of the Treatment and Education ofAutistic and related Communication-handicapped Children protocol(TEACCH) (a competitor) which they introduce in a perfunctory way
only. Further, they accept the research conducted by Jocelyn et al.
(another Canadian competitor) as “ground breaking,” despite a lackof significant successful treatment outcome. Only with the Lovaas
landmark study do they perform a detailed and highly critical analysis
that ultimately rejects the science behind the treatment protocol
developed by Lovaas. The research agenda of the BCOHTA authored
Lovaas report is clearly determined by the legal imperative of thegovernment to defend itself in court, and not to add to the body ofknowledge.
• Exclude what hurts: Despite a supposedly exhaustive literaturesearch, the BCOHTA study did not include articles that hurt the
advocacy objective of the research. The failings of the BCOHTA reportin this regard does not appear to result from research incompetence;
the research bias may instead be explained by the advocacy natureof the report and the litigation context.

20(1) clinical/scientific,(2) academic, or(3) research intended for advocacy — “advocacy research.”

Office analysts
incorrectly present
Lovaas Treatment as
a purported “cure”
for autism, andinaccurately define
legal claims in B.C.
as based upon the
supposed “curative
claim.”

According to this typology (Hanson, 1998), a person using a clinical approachgathers and reviews comprehensive data, and then makes a decision
regarding the content of the data. The person using the academic approachgathers data and makes a statement based on its synthesis, often times
disregarding the political/socioeconomic consequences of a given issue.
The person using the advocacy approach pushes for the model solution;
the research contains all the information necessary to sway policy in theirdirection only.

University of British Columbia Does Government Advocacy
Research for Court
Based on the evidence presented throughout this chapter, research
conducted by the BCOHTA falls into the third category — a researchorientation that advocates, in this case, for current B.C. Government policy
regarding children with autism. In keeping with the research orientationof advocacy, Office researchers elected to conduct an analysis of Lovaas
Treatment using only the information necessary to sway the court opinion
in favour of their funding source and the same organization that requested
and paid for the autism study — the B.C. Government.
Broadly speaking, BCOHTA researchers use “selective analysis” in the conductof their advocacy research. Their report appears to use four “selective analysis”
techniques which are summarized here, and analyzed in more detail laterin this chapter:• Building the straw-man of a “cure”: The Office sets out to determine
whether or not the UCLA protocol (Lovaas Treatment) “cures” children
with autism. This selective and overly restrictive research purpose
excludes a thorough examination of overall autism treatment“effectiveness” or “best practices.” If they can provide evidence thatshows Lovaas did not “cure” autism, then this finding can be used to21

Chapter 2: When Academics Go Bad: Bias in Health Technology ResearchPart I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

research outcomes as “essentially a cure” amounts to the construction of aneasy target to discredit with advocacy research. Such a narrow, inaccurate
definition of the Lovaas Treatment protocol also serves a second, important
advocacy purpose — to divert attention from the principle of “best practice”
and the growing consensus that intensive behavioural treatment currently
constitutes “best practice” in autism intervention.

Strawman of Autism Cure Versus Loss of Diagnosis
Setting up the Straw Man
From the first page of their report, Office analysts incorrectly ascribe an“autism-cure” claim to Dr. Lovaas, and inaccurately define legal claims in B.C.
as based upon the supposed “curative claim.”

BCOHTA researchers misrepresent Lovaas when they state, as a given, that
Lovaas and colleagues claim to have cured autism:

Defining successful
Lovaas researchoutcomes as“essentially a cure”
amounts to theconstruction ofan easy target
to discredit withadvocacy research.

The published literature on autism contains only one report,
from a controlled clinical trial, in which the authors claim that
their treatment normalized or cured children with autism(Lovaas 1987, with McEachin 1993)3 (emphasis added).
Again, there is nothing in the Lovaas Treatment literature to support the
Office’s view that Lovaas researchers have claimed to “cure” autism. Theirreport has no evidence from Lovaas’ articles to support this view. As has beenargued above, the BCOHTA researchers are not experts in autism treatment.
However, it appears they did accept and adopt the arguments of anotherexpert retained by the B.C. government in the litigation: Dr. Frank Gresham.
Dr. Gresham has been an ardent critic and academic rival of Dr. Lovaas, andhe is known to have attributed the “cure claim” to Dr. Lovaas. The following
passage from Dr. Lovaas illustrates this point:
An issue which surfaces periodically is the assertion that
the UCLA project claimed to “cure” autism. Gresham andMacMillan (1997) report: “We argue in this article that the(UCLA project) is far from providing a cure for autism. With
the exception of (studies from UCLA) none claim to have acure (of ) autism.” They go on to cite Rutter (1996) to backup their accusation that the UCLA project has claimed a“cure.” Referring to the Lovaas (1987) and McEachin, Smith,& Lovaas (1993) studies, Rutter (1996) argues that one of
the reasons for being cautious about the acceptance of the“strong claims” of these articles are based on “ the claims ofcure.” Rutter argues that the claims of cure run “counter toboth clinical experience and what might be expected on thebasis of prevailing theories.”4

22

BCOHTA researchers state:
Dr. Gresham has
been an ardent critic
and academic rivalof Dr. Lovaas, andhe is known to haveattributed the “cureclaim” to Dr. Lovaas.

This systematic review examined whether early, intensive
behavioural therapy for children with autism results in normal
functioning, or essentially a cure. The scientific validity of thiscurative claim is central, both to legal proceedings brought
on behalf of several children in British Columbia against
the Province seeking an intensive behavioural program;and to cost-benefit analyses and clinical guidelines used forplanning autism treatment programs 1 (emphasis added).
They further state:
At issue in this report, however, is the stronger assertion,
conceivably also to be inferred from the Autism Action
statement, that scientific evidence supports behavioral
therapy as a means to alter beneficially the natural courseof the condition, or all the symptoms of the conditions, andas a result a substantial number of children will achieve‘recovery’ or ‘cure’ 2 (emphasis added).
Dr. Lovaas has never referred to Intensive Behavioral Treatment as a “cure;”
nor has this claim ever been made by bona fide researchers in the fieldor by families seeking legal redress in British Columbia. It can be argued
that framing the BCOHTA Lovaas Autism Treatment analysis as a search for“scientific validity of this curative claim,” is in fact, a purposefully selective
research goal with a predetermined outcome. In other words, it is generally
accepted that at this time there is no known cause or cure for autism. No
scholar, researcher or clinician has made that claim in the autism case thatwas before the B.C. Supreme Court. Therefore, defining successful Lovaas
23Chapter 2: When Academics Go Bad: Bias in Health Technology ResearchPart I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

The UCLA project has never claimed to cure autism. The term
“cure” implies removal of the original cause of the problem.
Because this cause of autism is unknown, claiming a curewould certainly be unjustified and unethical. In contrast, it
is possible to enable a child with autism to achieve normal
functioning without finding a cure for autism, just as it
is possible for a physician to recover patients to normal
functioning without having found a cure for their illness.
Hodgkin’s disease is a case in point. It can only undermine
parent’s and professional’s confidence in the UCLA projectto imply that we have made unethical claims.5

It is only possible to ignore a large range of significant treatment-based
improvements in autism if one frames the debate as cure versus no cure. The“all-or-nothing” position taken by Office analysts in adopting the “curative
claim” premise is a severe flaw in their analysis. The flaw is as simple as it
is obvious: BCOHTA researchers have excluded a significant proportionof children from the analysis — those children who achieved significantly
improved outcomes along a continuum, which spanned a range up to themost successful outcome of normal functioning.

The “all-or-nothing”
position taken by
Office analysts
in adopting the“curative claim”
premise is a severe
flaw in their analysis.

Instead of exclusively focusing on the 47% of children whose outcome
rendered them indistinguishable from their peers in the landmark 1987
Lovaas study, it is obvious that an unbiased analysis of Lovaas Treatment
should also have discussed the considerable degree to which another 43%
improved — but this was ignored by health technology academics at UBC.
Even children who were classified as retarded and autistic made significant
gains with Lovaas Treatment in Smith et al., 1997. As discussed above, theMinistry of Health and British Columbia’s medicare system both widely fundtreatments that improve the condition of several disorders so as to improve
quality of life, without “curing” the disorder. Treatments are not accepted or
rejected by B.C. physicians based on this “all-or-nothing” criterion. In fact,patients often receive drug or surgical interventions that may not always
achieve the optimal outcomes seen in research. Often there may be a full
expectation of near-term death, yet significant publicly funded treatments areadministered nonetheless. Simply because some patients may not respondto treatment does not mean that all patients should be denied treatment.
Chemotherapy, surgery and radiation treatment are regularly delivered tocancer patients, at considerable public expense, yet some of these patients
do not recover, or even improve.
The BCOHTA placed strong emphasis on the “curative claim” argument against
public funding for Lovaas Treatment. It is true there is no proven cure for
autism, yet there are many costly health care programs for conditions thatcannot be cured, even terminal illness. For example, there is public funding
for palliative care and the Ministry of Health has a generous program ofindividualized funding where no expectation exists that the patient willbe “cured.” The Choices in Independent Community Living (CICL) programprovides individualized funding for in-home palliative or longer term nursing
care so that patients are able to stay in their homes for the rest of their lives.

24

It is obvious that an
unbiased analysis
of Lovaas Treatment
should also havediscussed theconsiderable degree
to which another
43% improved —but this was ignored.

In other words, Lovaas’ research has shown that it is possible to treat a childwith autism to the point where the child is functionally normal, despite
not having been cured of the underlying cause of the condition. There areparallels in physical medicine other than Hodgkin’s disease, where physicians
treat patients to the point where they are functionally normal without
having been “cured.” Other examples include publicly funded treatments
for Parkinson’s, diabetes and AIDS, where significant health care dollars are
expended by physicians, and the Medicare system as a whole, to improve
the quality of life of patients, even though there is no known “cure” for theunderlying disorder.
The BCOHTA cites another critic of Lovaas, Gary Mesibov, to support theirview that Lovaas makes a curative claim. BCOHTA researchers state:
Mesibov raises the principal concern with this approach:“..readers might jump to the conclusion that the children
have been cured. This has been an unfortunate consequenceof other presentations and studies published by theseauthors.”6 (emphasis added).
Ironically, it is not casual “readers” who have jumped to the conclusion ofcure, but rather, it is sophisticated Office researchers themselves who have
jumped to conclusions that Lovaas Treatment protocol makes curative claims.
A thorough review of the original Lovaas literature confirms that no curative
claim has ever been made. Again, this may reveal the advocacy nature of
the BCOHTA study.

25

Chapter 2: When Academics Go Bad: Bias in Health Technology ResearchPart I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

The spouse is entrusted with management of a $36,000 annual budget tohire nursing and other support staff. Of note is that the CICL program is
not means tested as applied to palliative care, and is not “cure” dependent.”
In the case of childhood autism, the Office apparently sees no contradiction
or moral issue with withholding public funding — in the absence of a cure
— for best practice autism treatment that has been shown to significantly
improve the quality of life for children with autism.

is not enough evidence to support children achieving “normal functioning.”9
The Office sets out two different research questions: (1) improved overalloutcome, and (2) normal functioning. These cannot be used interchangeably
since they are very different questions. It is notable that, conspicuously,neither research question mentions “cure.”
BCOHTA researchers ask:

In addition, it isnoteworthy thatthe BCOHTA is
so dismissive of
the “publishedliterature” despite
the fact that thisliterature is peerreviewed.

What is the effectiveness evidence that early, intensive
behavioural treatment programs for preschool children with
autism results in improved overall outcome versus alternative
management strategies?10 (emphasis added).
Their conclusion answers a different research question:
The Lovaas et al (1987) and McEachin (1993) study, while
methodologically stronger than published reports ofalternate comprehensive therapies, is inadequate to establish
the degree to which this form of therapy results in children
achieving ‘normal’ functioning, however defined11 (emphasis
added).
The Report toggles between “cure” and “improved outcome” on a regularbasis. At the outset, the BCOHTA analysis appears to have a different andcontradictory focus — that of “cure” rather than “improved overall outcome”
or “normal functioning.”
At issue in this report, however, is the stronger assertion...
that scientific evidence supports behavioural therapy as ameans to [improve autism or its symptoms] and as a result
a substantial number of children will achieve “recovery” or“cure” 12 (emphasis added).
Then, the BCOHTA further contradicts the curative “issue” above with the
improvement in overall function “issue” below:
At issue in this review are comprehensive behavioural
treatment programs designed to alter the outcome in autism,and improve the overall function of affected individuals13

26This undisciplined“wiffle waffle”
illustrates that the
Office’s report on
Lovaas does notmeet the mostbasic test of wellconducted research:it does not containclear and consistentresearch questions
and answers.

Competent delivery of Lovaas Autism Treatment can make children
indistinguishable from their peers in the best case scenario. However, those
who may still have symptoms of autism after treatment have been shownto achieve a substantially higher quality of life. Whether they make large ormodest gains, the treatment is nonetheless beneficial.
Autism is a behavioural diagnosis. As result, when a child no longer
demonstrates the symptoms associated with the condition, the condition is
no longer apparent. Where all the symptoms are controlled or extinguished,
the child becomes “functionally normal.” Yet the BCOHTA researchers appear
to misunderstand or misinterpret the nature of autism diagnosis when theystate:
However, Lovaas and his research colleagues have not limited
their effectiveness claims to achieving developmental gains.
Instead, they have permitted and even fostered the premisethat appears throughout the published literature, associating
their therapy with a notion of achieving ‘normal functioning’
for as many as half a given population of children with
autism.7
In addition, it is noteworthy that the BCOHTA is so dismissive of the “publishedliterature” despite the fact that this literature is peer-reviewed.
When Office Analysts Wish to Appear Balanced, They Exclude the“Curative Claim” and Refer to “Functioning.”
There is notable inconsistency in the BCOHTA report. The research question
the BCOHTA report posits is not the research question they answer in their
Lovaas treatment report. They seek evidence for “improved overall outcome
versus alternative management strategies,”8 whereas they conclude that there27

Chapter 2: When Academics Go Bad: Bias in Health Technology ResearchPart I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment(emphasis added).

may be aware they are “exposed” in this area, i.e. conducting a purposefully
narrow, government-petitioned review of Lovaas only. Possibly to rectify thisacademic vacuum, the Office (at the time of this publication) collaborated with
The Canadian Coordinating Council Office of Health Technology Assessment(CCOHTA) to produce a more comprehensive report on autism treatment. The
CCOHTA web site cited the following autism study with BCOHTA collaboration
at the time of the court hearing (April 2000):

This undisciplined “wiffle waffle” illustrates that the Office’s report on Lovaas
does not meet the most basic test of well conducted research: it does notcontain clear and consistent research questions and answers. This could
be due to the conflicting practices and goals of advocacy versus academic
research. This inconsistency is likely agenda-based rather than an issue of
research competence.

Treatment and Support for Children with Autism
In collaboration with researchers at BCOHTA.
This bias in how
the research isframed completely
undermines the
Office’s ability
to scientificallyevaluate healthtechnologies froma comparative,
relative effectivenessstandpoint forvarious autism
treatments.

Project Team: Lynda McGahan (CCOHTA);Ken Bassett (BCOHTA);
Carolyn Green (BCOHTA)
Status: Ongoing 14 (emphasis added).
The obvious question raised by the autism collaboration between the BCOHTA
and the CCOHTA is, “why were all major “Treatment and Support” options
purposely excluded by BCOHTA researchers in the case before the Supreme
Court in July 2000?” After all, the issue of effectiveness in terms of autism
treatments is at the heart of the action: parents and a significant number ofmental health care professionals did not view the existing government autism
services as adequate or effective. It must be stressed that all government
service providers and contractees were conveniently excluded from the
BCOHTA analysis. In other words, the Office had no intention of looking forany evidence to support the autism intervention and management practices
government contractors used on B.C.’s children at the time of the legal action
against the government. Not surprisingly, ineffective B.C. Government funded
and approved special needs services, proportedly intended for children with
autism, were spared the critical eye of Office researchers in the context of thecourt case on autism treatment.
If the BCOHTA were truly an independent body of impartial university
researchers, it would have conducted a broader review at the outset. Perhaps
it would have done so approaching the comprehensive nature of the review
published by the New York State Department of Health. Instead, the Office
only shines the spotlight on the work of Lovaas. If BCOHTA researchers
were pressed to share the spotlight and impartially analyze all that currently

28

Spotlight on Lovaas Only: BCOHTA ignores all other treatments
In other words,
the Office had nointention of looking
for any evidence
to support theautism intervention
and management
practices
government
contractees used
on B.C.’s children at
the time of the legal
action against the
government.

At the outset of the BCOHTA report, Office researchers acknowledge the BC
Government approached BCOHTA to request an efficacy study on Lovaas
Treatment. These researchers further acknowledge that the research request
was in the context of legal action against several B.C. Government Ministries.
According to the B.C. Office of Health Technology Assessment, the researchquestion has been narrowly defined by government, and consequently by
the BCOHTA, to spotlight only the Lovaas Treatment protocol for evidence as
to its effectiveness. They completely neglected to conduct a review — evena rudimentary one — of research evidence for the large number of alternate
autism interventions, management strategies and “support” options.
In short, all the scientific evidence supporting or refuting major so-called
treatment options is excluded from the BCOHTA analysis. This bias in how the
research is framed completely undermines the Office’s ability to scientificallyevaluate health technologies from a comparative, relative effectivenessstandpoint for various autism treatments. This is particularly important in afield where dozens of competing, scientifically unsubstantiated, treatments
are offered. Of particular note is that the Office did not evaluate any of thegovernment-funded autism services for their real-world effectiveness.
The government sponsored BCOHTA report attempts to dilute the exclusive
attention paid to Lovaas Treatment by conducting an arbitrarily narrowcomparison between a method referred to as TEACCH (popular withmany school districts due to perceived economy) and Lovaas. However,the discussion of TEACCH falls far short of “exhaustive” because BCOHTA
researchers fail to conduct even a basic literature search on TEACCH, as well as
the many alternative autism treatment and management options. The Office29

Chapter 2: When Academics Go Bad: Bias in Health Technology ResearchPart I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

constitutes B.C. Government intervention services for children with autism,
they may have had to agree with the New York Department of Health inconcluding that:
1) intensive behavioural treatment is the intervention of choice, and
2) Lovaas’ research on intensive behavioural treatment is the most
methodologically sound and has the most compelling outcome data of any
other autism research conducted to date.15

treatment programs designed to alter the outcome in autism,and improve the overall function of affected individuals(emphasis added).19
If, as BCOHTA researchers state, Lovaas Treatment has value as an effective
early, intensive and comprehensive treatment program “in achieving
significant developmental gains,” then one is left to wonder why the treatment
is not recommended by the Office.

The Double Standard: ABA’s okay but Lovaas is experimental
Office analysts
cannot ignore
the fact that work
by Lovaas andcolleagues has
influenced the entire
field.

Lovaas Treatment is partially based upon, and is an outgrowth of, thediscipline of Applied Behaviour Analysis (commonly known as ABA). Whilecritical of Lovaas’ research, BCOHTA analysts had to tread lightly on Applied
Behavioural Analysis because of the vast literature on the subject. The Officepresents the following disclaimer at the outset of the report:
This systematic review does not consider the literature
on focal treatments directed either at reducing specificbehavioural problems associated with autism, such as
sleep disturbances and escape behaviours; or at increasing
behavioural successes such as social interaction with peers
and symbolic play.20
They also state:
Matson et al. draw similar limited conclusions in favour of
behavioural therapy for children with autism. The authors
describe 271 published studies evaluating behavioral
techniques directed at target behaviors, which are divided
into categories of aberrant behaviour, social skills, language,
daily living skills, and academic skills.21
Unfortunately, BCOHTA researchers fail to state that the 271 publishedstudies on ABA use primarily single-subject case designs which would fail the
BCOHTA efficacy criteria because they did not “involve random assignment
to different treatment conditions.” Simply stated, the majority of ABA studies
do not employ a control group, yet are apparently accepted at face valueby BCOHTA analysts. Designs without a control group (also referred to as

30

While critical of
Lovaas’ research,
BCOHTA analysts
had to tread
lightly on Applied
Behavioural Analysis
because of the vast
literature on thesubject.

BCOHTA researchers have not adequately contended with the autism
treatment “best practices” issue. They cannot ignore the fact that work by
Lovaas and colleagues has influenced the entire field. Undaunted, for its
advocacy research in the B.C. Government’s court battle, the BCOHTA exploits
the systematic review conducted by Gina Green, which is supportive of
Lovaas’ work. They quote Gina Green, Ph.D.:
Green, in the systematic review that conducted the least
critical appraisal, draws the strongest conclusions in favourof Lovaas treatment. She states that “applied behaviouralanalysis is the treatment of choice...”16
BCOHTA researchers cite Green as a scholar who considers Lovaas Treatment
as the “treatment of choice” (the Best Practices argument). In apparent
agreement, BCOHTA states:
The absence of corroborative evidence of ‘recovery fromautism’ does not devalue the effectiveness of early, intensive
and comprehensive treatment programs in achieving
significant developmental gains (emphasis added).17
The above BCOHTA opinion is contradicted by BCOHTA discussion below:
The Lovaas et al (1987) and McEachin (1993) study, while
methodologically stronger than published reports ofalternate comprehensive therapies, is inadequate toestablish the degree to which this form of therapy results inchildren achieving “normal” functioning, however defined(emphasis added).18
At issue in this review are comprehensive behavioural
31

Chapter 2: When Academics Go Bad: Bias in Health Technology ResearchPart I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment“within subject” designs) do have their place in science; however, the BCOHTA
uncritically accepts the ABA studies where typically no control group exists,
yet has serious “research” concerns with Lovaas studies that do use control
groups. Again, this serves to illustrate the advocacy-focus of their report.

controlled studies of treatment programs were identified that reported overalloutcome for children...” 22 (emphasis added).

The Office must
either reject
ABA researchmethodology as
it does not meetstandards BCOHTA
has put forth for
Lovaas Treatment,or BCOHTA must
accept Lovaas
research, since
it builds upon
the same ABA
research Officeanalysts accept
indiscriminately atthe outset of theirreport.

It is telling that in the “exhaustive” BCOHTA literature search, only 150 autism
articles were worth retrieving. Of the 150 articles retrieved, a mere 4 articles
met the Office criteria for controlled treatment studies with overall outcome
for children. From this select group of autism treatment studies — 4 of 150 —chosen by the BCOHTA as acceptable research, it is highly relevant that threewere either Lovaas or attempted Lovaas replication studies. It is important
to note that no studies encompassing the autism treatment, management or
support practices of the BC government, or its special needs contractors, havebeen cited by the B.C. Office of Health Technology Assessment as meetingits ‘minimum’ selection criteria for research articles. In other words, BCOHTA
found no research evidence that meets its scientific criteria to support the
BC government’s claim that “things are working well,” and that public dollars
currently spent on autism services produce successful outcomes in autism
intervention. Aside from the three Lovaas Treatment studies or replications
that met the Office criteria for good research, the fourth is a study of the
TEACCH philosophy of autism intervention which is irrelevant since there
were no government funded TEACCH classrooms in B.C. at the time of thelegal proceedings.
In short, the BCOHTA find themselves in a bit of a quandary. They haveadopted very stringent criteria which Lovaas’ study does meet on the whole.
Yet they have uncritically accepted the vast literature of applied behaviouralanalysis which, strictly speaking, does not meet the NIH criteria which BCOHTA
is using to evaluate Lovaas’ research. Specifically, ABA research which the
Office uncritically accepts, wholesale, does not meet BCOHTA criteria in thefollowing areas:
1) They do not compare various approaches to treatment; thesestudies generally are designed to treat, then withdraw and treat
again.
2) They do not involve random assignment to different treatment
conditions; these are within-subject designs which compare thechild to himself at several different intervals.
3) They do not represent a cross section of children with autism as
the BCOHTA researchers require.23

32

Another possible explanation for this inconsistency is a simple lack ofknowledge and expertise regarding research in the field of autism. Either
possibility should give rise to concern if this is how decisions about healthcare resources are to be made.

From a select groupof autism treatment
studies — 4 of
150 — chosen by
the BCOHTA as
acceptable research,
it is highly relevantthat three were
either Lovaas orattempted Lovaas
replication studies.

The academic reality, perhaps unintentionally overlooked by the Office, isthat Lovaas is, in fact, part of the ABA “universe.” The Lovaas protocol is built
upon the past successes of hundreds of ABA studies. Lovaas employed manyof the Applied Behaviour Analytic techniques methodically developed in the
ABA literature and unconditionally accepted by the Office analysts. Lovaas
combined established ABA techniques into a comprehensive prototype ofautism intervention. Following decades of follow-up success in studies andin the real world, the protocol is now widely known as intensive behavioural
treatment or the Lovaas Autism Treatment protocol. What sets Dr. Lovaas
apart from other ABA researchers is his compelling protocol and research
design. Lovaas employed an experimental and control group — a research
design commonly accepted as comparatively more robust or stronger whenstudying many different elements.
It is difficult for BCOHTA researchers to have it both ways. On the one hand,
they cannot accept the vast body of ABA research that does not meet thecriteria they have laid out for Lovaas’ research and, on the other hand, apply
stringent standards to the singular researcher in autism treatment research —Lovaas — who has tested ABA principles (accepted at face value by BCOHTA)
in a comprehensive and controlled manner.
Put simply, the Office must either reject ABA research methodology as it
does not meet standards BCOHTA has put forth for Lovaas Treatment, or
BCOHTA must accept Lovaas research, since it builds upon the same ABA
research Office analysts accept indiscriminately at the outset of their report.
Moreover, when BCOHTA researchers conducted a literature review, theyreported the following, “... Approximately 150 articles met the minimum[BCOHTA] inclusion criteria and were retrieved... However, only four33

Chapter 2: When Academics Go Bad: Bias in Health Technology ResearchPart I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

in adolescence found that nearly half the experimental groupbut almost none of the children in the matched control
group were able to participate in regular schooling. Up tothis point, a number of other research groups have provided
at least a partial replication of the Lovaas model (see Rogers,
1998)25 (emphasis added).

Exclude What Hurts: BCOHTA falls far short of exhaustive
research
The BCOHTA researchers pride themselves on the ability to conduct“exhaustive research” and in their ability to find not only published literature,
but also “fugitive” literature.
The BCOHTA states:
It is, therefore, morethan a little surprising
to find highly
relevant autism
articles, reports
and books missing
from the BCOHTA“exhaustive” search.

Health Technology Assessment projects are conductedby faculty and staff (including medical consultants) who
are expert in systematic review methodology. Electronic
bibliographic databases and fugitive literature (that is,literature not indexed or distributed publicly) are searchedusing predefined inclusion and exclusion criteria based ona specific search strategy.24
The Office devotes five pages in their report to provide readers withmeticulous detail regarding their exhaustive search vis-à-vis autism treatment.
It is, therefore, more than a little surprising to find highly relevant autism
articles, reports and books missing from the BCOHTA “exhaustive” search.

Eaves and Ho findthat no children
with autism in
B.C. improvewith available
government
services. Exclusionof this study fromthe so-called
exhaustive researchof the BCOHTA
further points to the
advocacy nature of
the report.

Another notable omission from the BCOHTA report is a book which details
the “mechanics” of the Lovaas home-based early, intensive intervention
programs. Based on the Lovaas Treatment protocol, Drs. Leaf and McEachin
have authored a significant autism treatment publication entitled A Work In
Progress. The book is a detailed blueprint of the Lovaas Treatment protocol
and additionally illustrates how much Lovaas Treatment has advanced fromthe original The ME Book written by Lovaas in 1981. Although Leaf andMcEachin (1999) is not an outcome study, it should most certainly have been
included by the Office since both The ME book by Lovaas and BehaviouralIntervention for Young Children with Autism by Maurice, were included in
the “exhaustive” BCOHTA literature search.
Under the category of “Exclude what hurts,” it is highly significant to note that
Office researchers omitted a very relevant article by Eaves and Ho (1996).
This BC-based study conducted by Sunnyhill Hospital researchers, looks atoutcomes of children with autism who have “gone through the system” in B.C.

Most notable of the reports the BCOHTA omitted from its analysis of Lovaas
Treatment, is a seminal report entitled Mental Health: A Report of the [U.S.]
Surgeon General. In this report, Dr. David Satcher, M.D., Ph.D., U.S. Surgeon
General, discusses Lovaas’ work. Dr. Satcher states:
Thirty years of research demonstrated the efficacy of applied
behavioral methods in reducing inappropriate behavior
and in increasing communication, learning and appropriatesocial behavior. A well-designed study of a psychosocial
intervention was carried out by Lovaas and colleagues(Lovaas, 1987; McEachin et al., 1993). Nineteen children with
autism were treated intensively with behavior therapy for 2
years and compared with two control groups. Follow-up of
the experimental group in first grade, in late childhood, and34

35

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

36Chapter 3: How Health Technology’s Attack on Lovaas Treatment Fails

Chapter 3
How Health Technology’s
Attack on Lovaas Autism
Treatment Fails
In This Chapter
The Charge L ovaas Didn't Compare DifferentApproaches to Treatment
How Children Were Grouped inL ovaas’ Autism R esearch
Is It Ethical to Deny Treatmentto Children?
The Claim That L ovaas Does Not Measure ‘real life’ Data
Psychological Assessment of Children inL ovaas’ Research
DidL ovaas Provide EnoughDetails OnHow the Treatmentis Implemented?
Is the TreatmentStill Effective Over Time?
Have Others Replicated the Success of Lovaas Treatment?
The Classic Aversives Ruse

37

Chapter 3: How Health Technology’s Attack on Lovaas Treatment Fails

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

Treatment

The BC Office of Health Technology Assessment accepts, without question,
various criticisms made by academic rivals of Dr. Ivar Lovaas. Essentially, themost vicious critics view the favourable research results achieved by Lovaas
as “too good to be true.” Rival autism intervention researchers have notbeen able to achieve anything approaching outcomes of the Lovaas autism
intervention protocol. A few have become outspoken critics of Lovaas, inessence claiming, “it’s just not possible... autism is a lifelong, intractablecondition.” Therefore, the assumption is that Lovaas’ outcomes must be
exaggerated, likely based on poor research design, or simply fraudulent.

The BCOHTA criticizes Lovaas’ experiment because they claim that:
Lovaas did not compare two different therapies, but
only compares two levels of intensity in a single form of
behavioral intervention. There were insufficient details
provided from the second control group to determine what
therapies were applied.2

The most vicious
critics view thefavourable research
results achieved by
Lovaas as “too good
to be true.”

This criticism is problematic for historical reasons. When Lovaas began his
groundbreaking research in autism treatment, there were no competingtherapies that could lay claim to any academic legitimacy. In the era
when Dr. Lovaas began his research (the mid sixties and early seventies),
institutionalization was the typical “medical model” for children sufferingwith autism. Those children less afflicted by Autistic Disorder and fortunate
enough to avoid institutionalization, were offered what are generically known
as “support services” and special education classes. For a severe, lifelong
condition with no known cause and no effective treatment, a system ofsocial services supports evolved. Even when the Auton court case was heard(April 2000), the support (versus treatment) model for autism was the prime
intervention strategy used by the B.C. Government.
For his time, Dr. Lovaas did something that was genuinely groundbreaking:he introduced scientific rigor into the field of autism research. Much to his
credit, he did not merely establish one control group for his study, but rather,
he created two control groups so that he could test intensity of treatment
received, as well as the alternatives received by children in the community. It
is generally recognized that the “alternatives” in the community were simply
traditional special education rather than specifically defined treatment
interventions. Lovaas states:
Lovaas (1987) compared intensive behavioral treatment
to minimal behavioral treatment and placement in special
education. These interventions were provided to theexperimental group, Control Group 1, and Control Group2, respectively.3
BCOHTA criticism regarding Lovaas’ groundbreaking autism research, for38

When Lovaas began
his groundbreaking
research in autism
treatment, there
were no competingtherapies that could
lay claim to any
academic legitimacy.

Lovaas et al. (1989) address the question of “believability” regarding reported
outcomes of their behavioural treatment research. Lovaas states:
Three aspects of our intervention may account for thefavorable outcome we reported: First, our intervention
was very intensive; children were in a one-to-one teachingsituation for most of their waking hours for several years.
Second, it contained many empirically derived teaching
techniques, including some that other investigators havenot made full use of such as discrimination training andcontingent aversives. And third, it improved on previous
treatment programs (e.g., Lovaas, Koegel, Simmons, &Long, 1973) by emphasizing early intervention, by involving
parents more extensively, by being conducted in children’s
homes instead of clinical settings, and by explicitly teaching
children to learn from and interact with “normal” peers innormal settings, such as school.”1 (emphasis added).
Despite sound rationale for Lovaas’ autism treatment success, there remainardent critics of his work. This chapter will discuss these critiques in greater
detail. Of note is that Office researchers have accepted, seemingly on awholesale basis, these critiques without applying the rigorous, exhaustive
analysis to these papers that supposedly is a hallmark of the BCOHTA.
Following is a discussion of BCOHTA’s critique of Lovaas autism treatment
research, organized along the same research guidelines used in its reportsubmitted to the B.C. Supreme Court in the defence of government against
families of children with autism.

The Charge Lovaas Didn’t Compare Different Approaches to39

Chapter 3: How Health Technology’s Attack on Lovaas Treatment Fails

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

example “Lovaas did not compare two different therapies,” suggests the
BCOHTA’s complete ignorance with respect to the field of autism and thevacuum that constituted autism “intervention” for children at the time of
Lovaas’ research. Indeed, at that time, the notion that uncaring, “refrigerator”
mothers cause autism (a theory proposed by Bettelheim) had only recently
been challenged and discredited.

Baer states:
Besides, it is typical of many of us in the science community
to suspend the rules and impose our judgment in their placewhen we do not like the outcome of following the rules ofcompetent design. Perhaps some of the audience who will
dismiss these [Lovaas] results because subject assignment
was not pristinely random are actually dismissing theprocedures that produced these results and the theory that
produced these procedures...4
Lovaas utilized
an assortmentof recognizedpsychometricmeasures toevaluate prospective
study subjects, andthereby ensured
that all children
accepted into thestudy were closely
matched.

Dr. Baer has a profound understanding of the political nature characterizing
the autism treatment field. He gives us valuable insight into the motivation
driving critics of Lovaas’ Treatment. With respect to matching of subjects inthe landmark Lovaas study, Baer is satisfied that the groups are the same atintake because most subjects were simply assigned on the basis of therapist
availability. Moreover, the rigor of Lovaas’ study design is rooted in theuse of no less than eight different psychological measures to ensure close
matching of groups. Collectively, due to the result of subject matchingbased on such a large number of well regarded measures, Dr. Baer regards
the groups in the Lovaas study as “functionally random” and therefore valid
from a research standpoint.5
The heavy emphasis on pure random assignment by BCOHTA may be
explained by the researchers’ bias towards physical sciences researchassessment (e.g., drugs, medical devices) as opposed to psychologicalresearch involving children in particular. Pure random assignment in that
context cannot be supported on ethical grounds. The lack of appreciation ofthis context is a flaw in the BCOHTA report and serves as a major stumbling
block to accurate assessment of the Lovaas study.
Baer also indicates that on possible predictors of “best” outcome children, thepsychometric measures are very similar amongst all children in the landmark
Lovaas study. Baer states:
The experimental and control subjects [in the Lovaas study]
had strikingly similar averages on most of those, and thoseon which they differed somewhat do not strike me as

40

How Children Were Grouped in Lovaas’ Autism Research
Moreover, the rigour
of Lovaas’ study
design is rooted in
the use of no lessthan eight different
psychologicalmeasures to ensure
close matching ofgroups.

Following is a discussion surrounding the spurious “random assignment”
critique raised by Office analysts against Lovaas autism treatment research.
Fundamentally, at question regarding group assignment, is whether
groups in the Lovaas (1987) study were the same or different at the outsetof the study. When researchers use the true random method of assigning
subjects to conditions in an experiment, researchers and readers have ahigh degree of confidence that the groups are identical. When true, or pure,random assignment is not possible for various reasons — such as ethicalconsiderations documented by Lovaas — other valid, recognized measures
must be used to ensure that groups have essentially the same characteristics
at study intake. In the landmark Lovaas study, pure “random” assignment
was not used due to an outcry from parent groups against its use. In place oftrue random assignment, and with the approval of the U.S. National Instituteof Mental Health (the granting agency supporting the Lovaas study), an
alternate assignment method was decided upon. This method is known asquasi or “functional” random assignment. Lovaas utilized an assortment ofrecognized psychometric measures to evaluate prospective study subjects,
and thereby ensured that all children accepted into the study were closely
matched.
Quasi-random or Functional Random Assignment
Professor Donald Baer (1993), a highly regarded academic and consideredby many to be the father of Applied Behaviour Analysis, is given only passing
reference in the BCOHTA report regarding his opinion on the report’s main
criticism — lack of true random assignment. However, the remarks of Dr.
Baer (1993) are highly relevant to sorting out the important issue of whether
groups in the Lovaas study were identical at intake. Baer’s analysis is quoted
correctly, albeit narrowly, by the Office.
41

Chapter 3: How Health Technology’s Attack on Lovaas Treatment Fails

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

predictors of treatment success...6 (emphasis added).

of control for stage of research is relevant to the issue of group similarity.

In other words, all children in the Lovaas study were functionally the sameaccording to generally accepted psychometric measures, particularly thosemeasures relevant to autism.

Regarding the BCOHTA’s critique that “family factors” could possibly degrade
the study design, McEachin suggests that this argument is unfounded.
McEachin describes the families:

By contrast, the Office states:

Subjects’ families ranged from high to low socioeconomic
status, and, on average, they did not differ from the general
population (Lovaas, 1987). Thus, although our treatment
required extensive family participation, a diverse group offamilies was apparently able to meet this requirement.8
All children in the
Lovaas study werefunctionally thesame according to
generally accepted
psychometricmeasures,particularly thosemeasures relevant to
autism.

Subject Selection Bias
Office analysts argue that there was selection bias in the Lovaas study,
implying that Lovaas deliberately selected higher functioning children withpossibly better prospects for treatment success for the intensive treatmentgroup. However, there is no support for this allegation.
The BCOHTA researchers state:
Lovaas only included children between 40-46 months ifthey had echolalia, “a symptom widely recognized (also by
Lovaas, 1981) as a characteristic of autistic children with abetter prognosis.”9They appear not to have taken Lovaas’ explanation into account. Lovaasstates:Schopler et al. (1989) claim that our selection criteria wereintended to produce a biased sample. In fact, the purposeof these criteria was twofold: First, to ensure that our
subjects were reliably diagnosed, we excluded children
with low PMA scores (equivalent to a deviation IQ below30) because it is difficult to differentiate autistic children
with such low IQs from other profoundly retarded children(Wing, 1981). Second, we extended the age limit from 40 to
46 months for echolalic children. Eight of our 38 subjects (4in the experimental group and 4 in the control group) were42

Office analysts
argue that there
was selection bias
in the Lovaas study,
implying that
Lovaas deliberately
selected higher
functioning children
with possibly
better prospects fortreatment successfor the intensive
treatment group.

However, support for unbiased group assignment isnegated by Lovaas and his colleagues who admit that groupassignment was also based on family factors, geographic
location and stage of research.7
This criticism further confuses the issue of random assignment. Family factors
and geographic location are random by their very nature. They clearly haveno bearing on how well children with autism will respond to treatment.
Although children who lived far away were not randomly assigned, from afunctional standpoint, their place of residence is a random issue unrelated
to severity of autism.
Two children in the Lovaas study lived over an hour from the clinic which
made it unfeasible for the child to receive intensive intervention. Therefore,
the child was excluded from the experimental group receiving intensive
treatment (forty hours per week). We would expect BCOHTA researchers toagree that an hour’s drive from UCLA does not make an autistic child higher
or lower functioning. Consequently, assignment of that child to the Lovaas
study control group, although not truly random, is nonetheless a functionallyrandom assignment, because place of residence is not a psychometricvariable and cannot be manipulated by the researchers. Assertion to thecontrary is indeed a spurious allegation.
Another mistaken BCOHTA criticism is that the Lovaas study did not control
the variable of “stage of research.” In other words, all the children in the study
did not start treatment at the same time. The Lovaas study accepted children
into the study as they contacted the UCLA clinic. Although this was not true
random assignment, it meets the test of functional random assignment
because researchers did not have any control over who contacted the clinic,
or when they contacted the clinic. This random event is clearly unrelated toseverity of autism, which again casts doubt on the BCOHTA critique that lack43

Chapter 3: How Health Technology’s Attack on Lovaas Treatment Fails

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

included by this criterion. We thought that, because wewould not need to establish speech in these children, we
might still have enough time to prepare them for regularpreschool (a central goal in our program). We found that we
did not bias the outcome by doing this because only 1 of
the 4 experimental group subjects included by the echolalia
criterion attained normal functioning.10

predictors of prognosis in children with autism. It is simply not possible forcompetent researchers to successfully argue that “the control group had
fewer higher functioning clients” than the experimental group insofar as no
statistically significant differences occurred in the key psychometric measuresused to match the groups. Such measures include: prorated mental age;sum pathology; abnormal speech; self-stimulatory behavior; appropriate
toy play; any recognizable words. Measures such as these would havediffered significantly had the groups not been matched correctly. In short,
Lovaas utilized a variety of measures generally recognized as part of highly
competent research design, even by present day standards.
Office analysts makeanother argument
which suggests that
Lovaas “creamed”
subjects for theexperimental groupbut not for thecontrol group.

In addition, the BCOHTA selectively state that, “In the case of 5 children,
assessment was conducted in conjunction with the children’s parents.”14
Lovaas describes exactly what happened as “Five subjects were judged to beuntestable (3 in the experimental group and 2 in Control Group 1).”15 Thosechildren with autism deemed “untestable,” typically might be behaviorally
out-of-control to the extent that they are unable to sit in one spot and comply
with testing. Other children with autism may be so withdrawn into their own
world that they are functionally oblivious to what goes on around them.
By having three “untestable” children in the experimental group and two inControl Group 1, if there were any advantage given — which is debatablein itself — Lovaas may have given a slight advantage to the control group.
In this context it is useful to highlight an important study16 that only included
children with severe autism and mental retardation. Smith et al. 1997
found that even for this most severely affected group of autistic children,
the experimental group achieved positive outcome, i.e., severely retarded,
autistic children who received Lovaas Treatment made significant gains.
Smith et al. state:
At follow-up, children in the experimental group obtained ahigher mean IQ and evinced more expressive speech than
did those in the comparison group. Behavior problems
diminished in both groups. Results indicate that intensively
treated children achieved clinically meaningful gains relative
to the comparison group but remained quite delayed.17
The I.Q. scores of the children changed significantly:

44

No statisticallysignificant
differences
occurred in the
key psychometricmeasures used tomatch the groups.

With respect to prorated mental age and the exclusion of profoundly retarded
children from the study, it is correct that Lovaas excluded children whom
he suspected of suffering not only from autism but also severe mental
retardation. However, such exclusion was not an attempt to “cream” highfunctioning autistic children. As part of competent study design, Lovaas
acted to ensure the subject pool was comprised of children who suffer only
from autism. In all, only 15% of the children were excluded from Lovaas’
landmark study.11
Office analysts make another argument which suggests that Lovaas“creamed” subjects for the experimental group but not for the control group.
In a discussion of scientific validity, the BCOHTA states:
Any treatment will appear effective or perhaps curative if
it is applied to the (relatively small) subset of children who
will do well regardless of specific treatment. The appearanceof treatment effect will be further enhanced if, at the sametime as children likely to benefit are assigned to receive
treatment, children with poorer prognosis are assigned toa “matched” control group.12
BCOHTA also states:... (b) the control group had fewer higher functioning clients
than one would expect in groups of this size: typically,
20% to 30% of people with autism are higher functioning,irrespective of the services that they receive... 13
There is no support for this contention. The variables used to match groups
in the Lovaas study are widely considered in psychology as the most likely

45

Chapter 3: How Health Technology’s Attack on Lovaas Treatment Fails

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

Lovaas, by excluding severely retarded children, may have also eliminatedthe relationship between the variable of sex and I.Q.
Boyd also states:

The mean IQ of the experimental group increased from 28
at intake to 36 (SD = 13.14) at follow-up. By contrast, themean IQ of the comparison group decreased from 27 to 24(SD = 8.23).18

Certainly the fact that significant improvement occurred
for a group of autistic children is noteworthy, potentiallysignificant, and deserving of further study. Moreover, thisresearch group [Lovaas researchers] should be commended
for engaging in a long-term follow-up treatment study
that employed a control group, a rare occurrence in autism
research.21
The most
challenging
group of children,
children withboth autism andmental retardation,
significantly
improved using
Lovaas’ treatment
protocol.

Boyd further discusses the relevance of the sex difference in particular. He
states:
While seeming group inequivalence along sex may not
negate the power of the treatment, it might temper our
judgment of which autistic children would benefit from its
use.22
Boyd can certainly be challenged on this point since two of the three girls
in the experimental group achieved best outcome. In other words, since
two thirds of the girls achieved the most favourable outcome from Lovaas
Treatment, it is clear the treatment works extremely well for girls. If it can be
confirmed that girls, in the aggregate, are more severely impacted cognitively
than boys — still a contentious issue — then clearly the girls in this study did
not follow that model. The outcome of the study suggests that it would beunjustified to give this treatment to boys and not girls, because the girls in
the experimental group benefitted significantly.
Is Random Assignment of Children to Treatment and Control Groups“Feasible and Ethical”
The BCOHTA has indicated that it sees no ethical problems with random
assignment of autistic children to experimental and control groups forthe purpose of replicating and reaffirming the effectiveness of Intensive
Behavioural Treatment. BCOHTA researchers state:
Random assignment of children to treatment and control

46

The outcome ofthe study suggeststhat it would beunjustified to givethis treatment toboys and not girls,
because the girls in
the experimentalgroup benefitted
significantly.

These results are statistically significant (p < .05). In short, even the mostchallenging group of children, children with both autism and mental
retardation, significantly improved using Lovaas’ treatment protocol.
Although this study was included in the BCOHTA references, it is not analyzed
or discussed in the body of the report despite (or perhaps because of ) its
importance in addressing the subject selection bias issue.
Sex Differences Between Experimental and Control Group
The B.C. Office of Health Technology Assessment researchers cite Boyd (1987)
in its report to argue that the sex inequivalencies between the experimentalgroup and the control group account for most of the difference between thetwo groups (rather than the treatment). Yet in a perplexing omission, Officeanalysts then omitted Boyd’s key opinion regarding the Lovaas study. Dr.
Boyd states, “in Control group 2, the sex ratios were well within the accepted
range.”19
It is an interesting hypothesis that sex differences partially account for thedifferences between groups. However, Lovaas’ original study matched for I.Q.
and there were no statistically significant differences in I.Q. between groups.20
In addition, if two of the three girls in the treatment group of Lovaas’ study
achieved best outcome, and they were “functionally” randomly assigned, as
Baer confirms, then perhaps the original studies which made the claim that
autistic girls have lower I.Q. than autistic boys need further replication. It is
important to keep in mind that Lovaas did attempt to exclude all girls andboys with severe mental retardation from his study so he could keep children
with non-autism issues from clouding conclusions about treatment efficacy.
One variable that may account for apparently lower I.Q. for autistic girls is thefollowing: some girls with a lower I.Q. relative to boys may suffer from Rett’s
Syndrome which is characterized by very low I.Q. and only occurs in girls. This
may not have been adequately screened out in the various studies cited by
Boyd since Rett’s Syndrome can look very much like autism at a young age.

47

Chapter 3: How Health Technology’s Attack on Lovaas Treatment Fails

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatmentgroups has been recently shown by Jocelyn et al. to be bothfeasible and ethical in Canada, the most relevant context
for this review.23

Report, withholding EIBI is actually harmful to the child (New York Report,
pages 1-10). Therefore, pure random assignment is in fact unethical, unlessresearchers are prepared to provide all children the EIBI and then randomly
assign them to experimental and control groups to test some other type oftherapy.

Pure random assignment of children for study of a treatment protocol
regarded as best practice is most certainly not ethical. Presumably if we know
an autism treatment works in the United States, then, in Canada, it would
be morally repugnant to assign children to a control group (the group that
does not get the treatment).

It is also highly noteworthy that the study highlighted by BCOHTA, Jocelyn
et al. (1998), actually did not produce any meaningful success in outcomes.
In order to get around this inconvenient conclusion, BCOHTA states:

The British Columbia
Government’s Officeof Health Technology
Assessment has
indicated they itsees no ethicalproblems withrandom assignmentof autistic children
to experimental andcontrol groups for the
purpose of replicating
and reaffirming theeffectiveness ofIntensive Behavioural
Treatment.

While their study is ground-breaking in this area of research,
it was, as the authors note, too short to determine ultimate
treatment effect.27
In view of the fact that intensive behavioural treatment is currently considered“best practice” for autism by the New York State Department of Health, andthe U.S. Surgeon General recommends it as the treatment of choice forchildren with autism, BCOHTA support for random assignment would appear
to be a breach UBC ethics in human subject research. University of British
Columbia Policy states:
It is the purpose of the University to ensure that where ahuman subject is involved in a research or other study: thesafety, welfare, and rights of the subject are adequately
protected; ...28
The parents of disabled children are entitled to give informed consent whenvolunteering their children for human subject research. It is the solemn
responsibility of university researchers to fully inform those parents as tobest practices, so that parents can protect their children’s best interests.
Based on our current knowledge about intensive behavioural treatment,
any proposal for autism research incorporating pure random assignment
would clearly be unethical.

Is It Ethical to Deny Treatment to Children?
As seen above, the BCOHTA report supports pure random assignment despite

48

Those familiar withthe field of autism,such as psychiatrists
and psychologists,are fully aware of theefficacy of intensive
behavioural treatment
and would likely notconsider pure random
assignment as ethicalresearch practice.

The second ethical problem with random assignment in any future autism
treatment research concerns the ground-breaking report from the New York
Department of Health (conveniently side stepped by the BCOHTA). According
to the New York Report on clinical best practices in autism treatment, theentire Jocelyn et al. study, highly touted by the BCOHTA, can be deemed as
unethical since it did not include twenty hours of behavioral treatment. The
New York Report makes this quite clear in three of its recommendations:1) It is recommended that principles of applied behavior
analysis (ABA) and behavior intervention strategies be
included as an important element of any intervention
program for your children with autism.242) It is recommended that intensive behavioral programs
include as a minimum, approximately 20 hours per weekof individualized behavioral intervention using applied
behavioral analysis techniques (not including time spentby parents).25
3) While not explicitly stated in these sections, the panel
considered use of an ineffective assessment or intervention
method as a type of indirect harm if its use supplants aneffective assessment or intervention method that the childmight have otherwise received.26
In other words, by not informing and educating parents regarding early,
intensive behavioral intervention (EIBI), Jocelyn et al. (1998) actually kept
the possibility of EIBI treatment from autistic children in her study because
many of the parents might have opted for EIBI if they knew about it (andcould afford it). According to the New York State Department of Health49

Chapter 3: How Health Technology’s Attack on Lovaas Treatment Fails

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

Based on ourcurrent knowledge
about intensive
behavioural
treatment, any
proposal for
autism research
incorporating purerandom assignment,
would be “unethical.”Once BCOHTA offers Lovaas perfunctory credit, it then goes about qualifying
the praise. Office analysts state:

the ethical problems with this approach. In fact, BCOHTA goes as far as sayingthat pure random assignment is necessary:

It should be noted, however, that while criterion 3 is clearly
met [the study should use standard intervention protocols
that capture a wide range of skills and symptoms, underboth laboratory and ‘real life’ situations], criterion 6 (detailsof the application of that method) is not”32 (emphasis added).

Randomized trials of alternative early intensive treatment
programs are ethical and feasible to advance researchknowledge, and absolutely necessary if resource utilization
is to be justified in this area29 (emphasis added).

This is a misleading statement. Details of the Lovaas treatment protocol arevery clearly set out, particularly in his publication, Teaching Developmentally
Disabled Children: The Me Book (Lovaas, 1981). In addition, A Work in
Progress (Leaf and McEachin, 1999), further sets out details of the intensive
behavioural treatment protocol. Although the BCOHTA perceives itself as agroup of researchers who conduct so-called “exhaustive” research, it is indeed
unfortunate that they did not review the work of Leaf and McEachin, cited
above. This would have given the Office greater insight into what constitutes
bona fide intensive behavioural treatment based on the Lovaas protocol.
Moreover, the BCOHTA failed to acknowledge, perhaps deliberately, that
Lovaas researchers were scrupulous in taking detailed data on the programof each child in the study. This surely satisfies their requirement for “detailsof the application of that method.”33 which BCOHTA researchers misleadingly
claim Lovaas’ landmark study lacks. The voluminous data taken for eachindividual child’s program has not been published by Lovaas, because thisis not customary and would serve no purpose. It should be noted thattreatment staff in every well-run Lovaas Treatment program today continue
to follow the protocol established by Lovaas — they take detailed data oneach child they treat. A minimal knowledge of Lovaas’ autism treatment workand the numerous replication sites around the world would have avoided
the BCOHTA’s embarrassing error in asserting that Lovaas did not provide
details of the application of his treatment method.
In short, the BCOHTA criticism regarding criterion 6 [details of theapplication of the method] is unfounded. It shows either a profound lackof understanding on the part of Office analysts regarding what constitutes
the Lovaas Treatment protocol, or an attempt to confuse the judge about
generally recognized and well defined parameters of Lovaas’ treatment
protocol.

50

Lovaas’ research canbe greatly credited
for removing children
with autism from theclinics and institutions
and delivering
intensive treatmentin their own homes,
under their parents
watchful eyes.

In short, Office analysts use the lack of “pure random assignment,” asan apparent justification to deny publicly funded intensive behavioural
treatment for children with autism. Following through to the logicalconclusion of this circular argument is that children with autism can neverreceive publicly funded behavioural treatment until we get more purely
randomized studies. However, that kind of research can never happen
because it is no longer ethical. So, according to this health technology
argument, in the meantime no public spending on autism can be justified.

The Claim That Lovaas Does Not Measure ‘Real Life’ Data
By their own admission, the Office recognizes that the Lovaas landmark study
has done much to use standard intervention protocols which capture a wide
range of skills and symptoms, under both laboratory and “real life” situations.
The BCOHTA indicates that the Lovaas treatment protocol can be creditedwith “moving therapy beyond the clinic and laboratory into real life settings
such as home and community.”30 Indeed, the Lovaas treatment protocol sets
an autism research “gold standard” in this regard.
No other autism interventions or therapies have a similar commitment to“moving therapy beyond the clinic and laboratory into real life .”31 Lovaas’
research can be greatly credited for removing children with autism fromthe clinics and institutions and delivering intensive treatment in their own
homes, under their parents’ watchful eyes.

51

Chapter 3: How Health Technology’s Attack on Lovaas Treatment Fails

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

too noncompliant to complete tests of intellectual functioning.”36
Lovaas did the next best thing — he used a Vineland Social Maturity Scalewith a parent. Other scholars are also of the opinion that Lovaas did an
outstanding job in the use of at intake. Rogers (1998), whom BCOHTA
researchers rely upon extensively in their critique of Lovaas, describes Lovaas’
procedure at intake as follows:

Academic honesty
dictates researchers
from the BCOHTA
should have gone tothe source material
to investigate what
actually happened.

Children in all three groups were diagnosed by independent
clinicians, and virtually all the children came from the samelarge diagnostic clinic in the Psychiatry Department at the
University of California, Los Angeles from faculty members
recognized internationally for their expertise in autism37(emphasis added).
In terms of outcome measures at the beginning of school entry, BCOHTA
researchers acknowledge that independent evaluators were used fortesting, but emphasize the point of Gresham and McMillan’s that, “school
performance and behavior was reported by parents and teachers, not by.” It is an obvious contradiction on the part of Office to state that teachers
are not , i.e., not outside the study. Moreover, teachers most certainly areexpert evaluators of children in terms of what constitutes typical, acceptablein-class behaviour and classroom performance.
Here it is valuable to reference the description that Lovaas gives regarding
school placement. Lovaas states:
All children who successfully completed normal kindergarten
successfully completed first grade and subsequent normal
grades. Children who were observed to be experiencing
educational and psychological problems received theirschool placement through Individualized Educational Plan
(IEP) staffings (attended by educators and psychologists) inaccordance with the Education For All Handicapped Children
Act of 1975.38
Lovaas goes on to explain why the educational system is a good outcome
measure:52

Psychological Assessment of Children in Lovaas’ Research

Five children weredeemed untestable.
A subset of autistic
children areuntestable. This is aconcept familiar toanyone with even alimited backgroundin autism.

The BCOHTA regard Lovaas’ use of outside evaluators at intake and at school
entry as flawed. It is significant to note that Office researchers may not haveanalyzed the evaluation procedure in the Lovaas study because they do notdescribe the evaluation at intake. What Office analysts have done, however,is describe the intake procedure through a secondary source — Gresham
and McMillan — rather than conducting what is customary in academe, areview of the primary source. BCOHTA quotes from this secondary source,“5 children were not evaluated by , but by the parents.”34
Academic honesty dictates researchers from the BCOHTA should have goneto the source material to investigate what actually happened. It is notapparent from the report that such primary research was done.
In reference to the use of at intake, Lovaas states:
Testing was carried out by graduate students in psychology
who worked under the supervision of clinical psychologists
at UCLA or licensed Ph.D. psychologists at other agencies.
The examiner chose the test that would best accommodate
each subject’s developmental level, and this decision wasreached independently of the project staff. Five subjects
were judged to be untestable (3 in the experimental groupand 2 in the Control Group 1). Instead, the Vineland Social
Maturity Scale (Doll, 1953) was used to estimate the MAs(with the mother as informant). To adjust for variations in
MA scores as a function of the subject’s CA at the time oftest administration, PMA scores were calculated for a CA at
30 months (MA/CA x 30).35
The central point here is that were used for all but five children. As discussed
previously in this section, those five children were deemed untestable.
A subset of autistic children are untestable. This is a concept familiar toanyone with even a limited background in autism. In reference to the fivechildren, Lovaas states, “these interviews were given for children who were53

Chapter 3: How Health Technology’s Attack on Lovaas Treatment Fails

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

These children then entered normal first grade classes on
their own merits. They remained there without any special
intervention and were passed from grade to grade using thesame criteria applied to all other children in such classes.
This is significant because schools in Los Angeles conduct
extensive, independent assessments on all exceptionalchildren, and they virtually always place children whom they
identify as autistic in special education classes39 (emphasis
added).

elements and how much of the therapeutic intervention
individual children received.40
The BCOHTA further states:
Clearly -defined treatment activities are essential if treatment
effect is to be distinguished from extraneous variables
influencing the outcome of children with autism.41

In the realm of regulareducation, successful,
unsupported progressof an autistic childis a salient measurefrom highly relevant“outside evaluators”— regular educationteachers in the realworld.

The study did have high compliance with the defined treatment protocol,
based on the operations manual that Lovaas published, as well as the tightsupervision of the therapists by the research team. Rogers (1998), uponwhom BCOHTA relies heavily, states:
There was tight control of the treatment delivery by those
who had developed the treatment program.42
The BCOHTA critique further points to a profound lack of knowledge
regarding the intractable nature of autism and how extraneous variables do
not have enough power to influence the outcome of children with autism
to substantively change manifestations of the condition. It is significant
to note that Office analysts have adopted this critique from Gresham andMacMillan as their own.
Gresham and MacMillan state:
Some treatments, particularly those delivered by different
therapists, may be effective not because of the efficacyof the treatment per se, but rather because of therapist’s
characteristics (e.g., rapport, warmth, encouragement).43
The Gresham and MacMillan critique appears to be a cousin of Bettelheim’s
discredited theory that autism is caused by cold “refrigerator” mothers. Most
competent autism professionals have moved away from the “rapport andwarmth” school of autism etiology. It is most unfortunate, therefore, that
Gresham and MacMillan, as well as BCOHTA researchers, perpetuate the“refrigerator mother” myth and unwittingly lend credence to the academic
descendants of Bettelheim’s lineage.

54

The study did havehigh compliancewith the definedtreatment protocol,
based on theoperations manualthat Lovaas
published, as well as
the tight supervisionof the therapists by
the research team.

Those familiar with autism would agree that untreated children with autism
who are a) assigned to a regular classroom and b) have no front line support,
are highly unlikely to progress and advance through the regular educational
system. When such progress occurs in regular classrooms, it indeed functions
as a true indicator of success in overcoming autism. In the realm of regulareducation, successful, unsupported progress of an autistic child is a salient
measure from highly relevant “” — regular education teachers in the realworld.
BCOHTA misrepresentation of the outcome evaluation of Lovaas’ study
further suggests a profound lack of knowledge on the part of Officeresearchers regarding autism. It also reflects the Office’s bias to uncritically
accept opinions put forth by Lovaas’ academic rivals. This further supports
the claim that the BCOHTA review of Lovaas Treatment is little more thanadvocacy research clearly influenced by the litigation context in which it
was created.

Did Lovaas Provide Enough Details On How the Treatment is
Implemented?
It is clear, even to the uninitiated reader, that the BCOHTA unfairly favours
any argument that supports its position without critically evaluating theargument itself. A case in point: the Report uncritically presented theinternal validity argument that Gresham and McMillan provide, by stating:
BCOHTA researchers concur with Gresham and MacMillan. In
neither the Lovaas 1987 study report, nor in the subsequentdiscussions do Lovaas et al. provide details of which
55

Chapter 3: How Health Technology’s Attack on Lovaas Treatment Fails

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

BCOHTA researchers. This is an implicit accusation that Lovaas has not beenhonest and forthcoming in reporting his study methodology — the Officesuggestion is that Lovaas may have withheld methodology information.

The Gresham
and MacMillan
critique appears
to be a cousinof Bettelheim’s
discredited theory
that autism is causedby cold “refrigerator”
mothers.

The autism expertise vacuum within the Office comes into sharp focus when
discussing drug interventions to treat autistic disorder. Pharmaceutical
options for children with autism, at the time of Lovaas’ study (1970’s 1980’s) were crude and ineffective. Even today, most B.C. children in Lovaas
Treatment programs are not given drugs for the simple reason that there
are no drugs that effectively treat autism on a global level; some drugs
administered to autistic children also have unwelcome side-effects. Dr. E.J.
Garland, M.D., F.R.C.P.(C) a British Columbia psychiatrist well aware of thepharmaceutical options for children with autism, states:
it is my opinion that it is unacceptable to withhold funding
for intensive early intervention with a program which clearlyworks when we do not have any other effective treatment
for Autistic Disorder.47
The BCOHTA report also puts forth its contention regarding the purported
difficulty of administering Lovaas Treatment. Office researchers argue that
Lovaas treatment is a complex autism treatment protocol.
Replication of the Lovaas (1987) treatment benefit requires
replication of the comprehensive treatment model including
parents, therapists and pre-school institutions. This could
be extremely problematic.48
Indeed, the Lovaas Treatment protocol is complex. It is not an easy treatment
to design or administer. However, to say that delivery of a complex
treatment model is “extremely problematic”49 is simply not the case. Today,
the treatment protocol is being replicated throughout British Columbia,
with many children and with tremendous success. However, a complex,
comprehensive treatment protocol cannot be designed and implemented byunqualified professionals. To be effective, an intensive behavioural treatment
program must be designed and implemented by competent, experienced
Lovaas Treatment consultants.

56

Lovaas speaks to Gresham and MacMillan’s contention that “rapport, warmth,
encouragement” are effective in autism treatment. Lovaas states:

The autism expertisevacuum within
the Office comes
into sharp focus
when discussing
drug interventions
to treat autistic
disorder.
Pharmaceutical
options for children
with autism, at thetime of Lovaas’ study(1970’s - 1980’s)
were crude andineffective.

The idea [e.g., rapport, warmth, encouragement] is the basis
for many treatment programs for children with autism,
including psychoanalysis, Gentle Teaching, Holding Therapy,
Options, Theraplay, and other “relationship therapies.”
Nevertheless, it has fared extremely poorly in research, asmuch evidence indicates that children with autism derive
no particular benefit from attention and may be harmed
by it under many circumstances (Lovaas et al., 1989; Smith,1993). To put this another way, attention, warmth, and so on
are probably necessary components of treatment, but they
are not sufficient to help children with autism.”44 (emphasis
added).
BCOHTA researchers make an additional criticism regarding the possible useof prescription drugs in the Lovaas landmark study as a possible reason forimprovement amongst the children. The report states:
Also omitted are details of the type and amount ofalternative (perhaps pharmaceutical) therapies received by
the experimental group.45
The criticism exposes a “drug and physical-medicine bias” of the Office
towards the treatment of illness, in this case applied to autism. This BCOHTA
bias once again constitutes an expertise blind spot that blocks necessary
understanding of psychosocial treatments for autism.
Speaking directly to the BCOHTA pharmaceutical criticism, it can be said
there is no reason that the experimental group in the Lovaas study would
have received more or less pharmaceuticals than the control group. Because
Lovaas did not study pharmaceuticals, if any drugs were unknowingly inuse, most impartial observers would agree that such pharmaceutical use
would be evenly distributed amongst children in all groups. To suggestthat “alternative (perhaps pharmaceutical) therapies [were] received by
the experimental group,” 46 and selectively not administered to the control
group, is a most serious allegation that should not be made lightly by57

Chapter 3: How Health Technology’s Attack on Lovaas Treatment Fails

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

Perhaps due to an ignorance about autism and the privately funded autism
treatment reality in British Columbia, BCOHTA researchers hold the incorrect
view that it is simply parents, therapists and preschool institutions thatmust attempt to “replicate” Lovaas Treatment success. In fact, parents who
desire bona fide Lovaas Treatment, currently import — of necessity and at
private expense — highly qualified U.S. Lovaas Treatment consultants to
set up and customize autism treatment programs for their children. The
process of replicating the treatment protocol utilized in Lovaas’ 1987 article
is costly for British Columbia families, but can hardly be viewed as “extremely
problematic” by any knowledgeable, disinterested observer.

in the treatment procedures so that treatment could takeplace for almost all of the subject’s waking hours 365 daysa year. A detailed presentation of the treatment procedure
has been presented in a teaching manual.52
Regarding the treatment integrity, Lovaas states:

Indeed, the Lovaas
Treatment protocol
is complex. It is notan easy treatment todesign or administer.
However, to saythat delivery of acomplex treatment
model is “extremely
problematic”55 issimply not the case.

We documented treatment integrity in the mannerrecommended by the investigators cited by Gresham
and MacMillan (Johnston & Pennypacker, 1980). These
investigators have contended that the best way to knowwhat aspects of a treatment make it work is to study
individual components of the treatment separately before
performing an outcome study (see also Johnston, 1988).
This is what we did (see Newsom & Rincover, 1989, for one
review).53
In short, it is disturbingly apparent that Office researchers have once again
elected to adopt, as their own, the critique of Lovaas’ most scathing academic
rivals — Gresham and MacMillan. Unfortunately, BCOHTA researchers
elected to exclude from their purportedly “exhaustive” review, Lovaas’significant reply to the critique of Gresham and MacMillan (1997), as well as
Schopler et al. (1989). Such is the nature of advocacy research.

Is the Treatment Still Effective Over Time?
The BCOHTA admits that the Lovaas 1987 study uses longitudinal designs
that evaluate treatment effects, both during the treatment itself, and at set
points after the intervention. However, they fault the study based on thecriticism of Schopler et al., 1989, in stating that classroom placement and
IQ measures are used excessively by Lovaas (this criticism has already beenaddressed). In terms of IQ measures, Office analysts present the points ofseveral critics regarding I.Q., i.e., Schopler, et al., 1989; Mesibov, 1997; Mundy,
1997, and Gresham and MacMillan, 1997. In typical advocacy research
fashion, BCOHTA researchers elected to exclude from their report Lovaas’
responses to I.Q. as an outcome measure. This shortcoming in the Officereport is addressed below:

58

It is disturbingly
apparent that Officeresearchers haveonce again electedto adopt, as theirown, the critique of
Lovaas’ most scathing
academic rivals— Gresham andMacMillan.

The BCOHTA concludes by stating:In summary, despite the detailed material regarding the
Lovaas method, the research reports provide virtually no
details regarding the actual application of that material. In
fact, the absence of description of the amount, quality, andconsistency of the applied behavioral analysis techniques is
one of the most striking aspects of Lovaas and McEachin’swork.50
Gresham and MacMillan had already made this point in their critiques of
Lovaas. Lovaas replies, in terms of amount of treatment:
On the contrary, we specified that all children received
an average of 40 hours per week (Lovaas, 1987), and we
provided data on the time between the end of treatment
and follow-up (McEachin et al., 1993). We might add that,
because of holidays, illnesses, and so forth, the number oftreatment hours fell below 40 in some weeks, but we madeup missed sessions to maintain the average of 40 hours.51
In terms of treatment quality, Lovaas describes:
Each subject in the experimental group was assigned
several well trained student therapists who worked (parttime) with the subject in the subject’s home, school andcommunity for an average of 40 hr per week for 2 or more
years. The parents worked as part of the treatment teamthroughout the intervention; they were extensively trained59

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Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

BCOHTA states:

The BCOHTA’s further reliance on Mesibov’s critique of Lovaas states:

Schopler et al. also note that “Improvement on IQ measures
may reflect improvement in compliance rather than incognitive function. Higher scores on follow up IQ tests willthen reflect improved test-taking skill rather than improved
intellectual functioning.54

Mesibov similarly notes that “Many skills required fornormal functioning have not been measured by McEachin
et al (1993). They did not report on the student’s social
interactions, friendships, conceptual abilities, and social
communication skills, skills likely to differentiate children
with autism from their peers without handicaps.56

Lovaas neutralizes the BCOHTA critique via his response to Schopler:

The BCOHTA report also presents Mundy’s critique, which is similar to
Mesibov’s. Smith and Lovaas (1997) respond to this as well. They state:
In typical advocacy
research fashion,
BCOHTA researchers
elected to exclude
from their report
Lovaas’ responses to
I.Q. as an outcome
measure.

...while two measures were used at the age 7 follow-up(i.e. IQ and school placement), 33 were used at the age 12
follow-up. Gresham and MacMillan discuss only 1 of these
33 measures (full scale IQ) in their critique. Plainly, this is asevere shortcoming in their analysis.57
In addition, McEachin et al. (1993) state:
A wide range of measures was administered, avoiding overreliance on intelligence tests, which have limitations if used
in isolation (e.g., bias resulting from teaching to the test,
selecting a test that would yield especially favorable results,
failing to assess other aspects of functioning such as social
competence or school performance) (Spitz, 1986: Zigler &Trickett, 1978).58
As discussed previously, the following points must be raised:
1) When Lovaas-treated children are deemed “indistinguishable
from their peers,” based on evaluation by psychologists trained todiagnose autism,2) They are functioning independently at school, and
3) They cannot be identified at school as autistic, then we mostcertainly have a valid measure of successful autism treatment
outcome. Moreover, this outcome is a valid indicator that thesechildren no longer meet the criteria for autism. It is understandable
that rival autism academics, who have yet to achieve similar

60

Lovaas found a
20-point gain in
posttreatment IQ
in his experimentalgroup as a wholeand a 37-point
gain (to thenormal range) in
the 9 children heclassified as normal
functioning.

Schopler et al. (1989) question our IQ data. Yet, we reported
a very conservative estimate of IQ increase (using a ratio
pre-treatment IQ rather than a deviation IQ because ratio
scores tend to be higher). We also optimized the children’s
performance on pretreatment IQ tests by reinforcing
compliant behavior, a deviation from standard test
administration procedures that is commonly used with
autistic children (Freeman, 1976). Nevertheless, we found a
20-point gain in posttreatment IQ in our experimental groupas a whole and a 37-point gain (to the normal range) in the 9children we classified as normal functioning. The improved
functioning occurred with strict adherence to standardized
test administration procedures at follow-up. Schopler et al.,however, suggest that the normal IQs obtained at follow-up
were indicative of the children’s true intelligence and thatthe retarded IQs obtained at intake were underestimates
resulting from the children’ uncooperativeness. The notionthat autistic children actually have a normal intelligenceand that their disturbances present them from showing it
was widely held in the 1940s and 1950s. It was abandoned
when numerous studies showed that autistic children havesevere intellectual deficits no matter how cooperative theyare (Rutter, 1983). For example, mute children (like half ofour subjects at intake) or children who repeat others but
have little or no communicative speech (like the remainder ofour subjects at intake) score low on IQ tests mainly because
they lack language, not because they refuse to do tasks.55

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outcomes, may find such “school success” outcomes troubling.
However, academic rivalry, no matter how heated, does not degrade
the significance of a valid outcome measure.

deviation IQs in Bayley (1969) or the supplemental tables
by Naglieri (1981). These tables contain deviation IQs forchildren with chronological ages up to 30 months. Because
most of our children were a few months older than this, weused PMA to estimate what they would have scored at 30
months so that we could obtain a deviation IQ for them.
Statement: Lovaas (1987) presented no data concerning theCA (means or) ranges (at intake) in any of the three groups.
(p. 189).
Office staff stillchoose to include ananalysis they openly
admit they do notunderstand.

Answer: Means appear in the second and third column ofTable 1 (Lovaas, 1987) and the range is presented in Table
2 of this article.
Statement: We simply do not know how to interpret the
posttest IQ results given that posttest measures primarily
were scaled as deviation IQs . . . and pretest scores werebased on PMA (p. 189).
Answer: This issue is discussed at length by Lovaas andSmith (1988) and somewhat more briefly by Lovaas andcolleagues (1989). To summarize, we presented deviation IQ
at intake in addition to PMA (Lovaas et al., 1989). If we had
used deviation IQs throughout (as Gresham and MacMillan
apparently advocate), our estimates of IQ gains would
have been much larger than what we presented (29 points
rather than 20 at the age 7 follow-up). We chose to be moreconservative.
Statement: Lovaas and his colleagues (1989) reported thatexperimental group and Control Group 1 children’s IQ scoresat pretest were optimized by reinforcing compliant behavior... [but] do not describe how this compliant behavior was
reinforced (p. 190).
Answer: On the contrary, we cited a journal article thatdetailed the procedure we used (Freeman, 1976). This

62

Rather than viewing
Gresham andMacMillan’s critiquethrough the BCOHTA
advocacy filter, theentire discussion
between Smith
and Lovaas, 1997
and Gresham andMacMillan, 1997
makes it apparent
that Lovaas is
a competentresearcher.

The BCOHTA mentions Gresham and MacMillan’s critique regarding
measurement instruments used by Lovaas 1987 at baseline. To their
credit, Office analysts acknowledge they do not understand the criticism,presumably owing to their lack of expertise in psychology and autism.
However, in the BCOHTA report, Office staff still choose to include an analysis
they openly admit they do not understand. Typical to advocacy research,
the BCOHTA excludes Lovaas’ defense, which again supports the contention
that the review was primarily motivated by the desire to defeat the parents’claims in the B.C. litigation.
Instead of simply viewing Gresham and MacMillan’s critique through the
advocacy filter of the BCOHTA, it is most telling and impartial to review
the entire discussion between Smith and Lovaas, 1997 and Gresham andMacMillan, 1997. Based on the exchange between these academics, it isapparent that Lovaas is a competent researcher. Below is the complete
dialog between these academics. The statements are made by Gresham
and MacMillan and the answers are made by Lovaas and Smith.59
Statement: The EIP made use of a psychometricallyquestionable scaling procedure Lovaas (1987) called theprorated mental age (PMA) (p. 189).
Answer: If Gresham and MacMillan do not like this statistic,
they are free to use the ratio or deviation IQ, each of which
we also reported (Lovaas et al., 1989) and which could, inany case, have been readily calculated from the prorated
mental age.
Statement: How Lovaas (1987) was able to derive deviation
IQ scores from the PMA formula is unknown, since theformula is based on the ratio IQ formula (p. 189).
Answer: Basically, what the PMA score did was translate
children’s performance into a score that could either be
converted to a ratio IQ or looked up in the norms tables for63

Chapter 3: How Health Technology’s Attack on Lovaas Treatment Fails

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

procedure is standard in the testing of children with autism(e.g., Marcus, Lansing, & Schopler, 1993), many of whomwould be untestable if standard administration procedures
were employed.

Answer: As we have previously noted, this old psychoanalytic
notion has been overwhelmingly refuted by research (Rutter,1983), including studies by Schopler and colleagues, thathave failed to obtain IQ increases with treatment (Lord &Schopler, 1988).

“Gresham andMacMillan (1997)
contradict theirown assertion
that the results areuninterpretable,
as they offer many
interpretations insubsequent sectionsof their article.”Statement: IQ test results were “influenced to an unknown
degree by the so-called Flynn effect,” (p. 190) which refers
to the gradual improvement that has occurred in theperformance of children on intelligence tests over time in
the United States and elsewhere.
Answer: On the contrary, the influence of the is knownwith some precision from the manuals for the tests used
for the large majority of the children in our study at intake(Bayley, 1993, Table 6.10) and the age 7 and age 12 followups (Wechsler, 1993, Table 6.9). Table 1 in this article
presents intake and follow-up scores with and without
Flynn corrections. Flynn-corrected scores are presented as
ranges rather than precise numbers, in keeping with theformat used by Bayley (1993) and Wechsler (1993). They are
extrapolated from the tables because Flynn corrections were
presented not for each possible score, but for each 5-point(Bayley, 1993) or 15-point (Wechsler, 1993) increment in IQ.
Plainly, Flynn corrections have only a trivial influence on theinterpretation of the results. For example, without Flynncorrections, we reported that the mean deviation IQ of theexperimental group rose from 54 at intake to 83 at age 7 and85 at age 12. As shown in the first row of Table 1, with Flynncorrections the ranges at each assessment are 46-55, 76-80,
and 78-82, respectively.60
When one carefully examines the above discourse between Gresham andMacMillan, and Smith and Lovaas published in the Journal of Behavioral
Disorders (1997), it is evident that Smith and Lovaas have a credible defense
to every allegation. It is clearly unjustified on the part of BCOHTA researchers
to arrive at the conclusion that “the studies by Lovaas (1987) and McEachin(1993) suffer from several major methodological limitations.”61 In every
study there is likely room for improvement, but many practitioners, reviews,

64“As we havepreviously
noted, this old
psychoanalytic
notion[Improvement on
IQ measures may
reflect improvement
in compliance rather
than in cognitive
functions]has been
overwhelmingly
refuted by research.”

Statement: Lovaas and his colleagues reported that strict
adherence to standardized test administration procedures
was achieved at follow-up (p. 190). Hence, pre- and posttreatment evaluations were conducted “under completely
different experimental conditions” (p. 190). As a result, theresults are “uninterpretable” but “might be expected to havea conservative bias” (p. 190).
Answer: Obviously, results cannot be both “uninterpretable”
and “conservatively biased.” Which is right? As notedby Lovaas and colleagues (1989), optimizing scores atintake but not follow-up yields a conservative estimate of
improvement. Gresham and MacMillan (1997) contradict
their own assertion that the results are uninterpretable, as
they offer many interpretations in subsequent sections of
their article.
Statement: Schopler, Short, and Mesibov (1989) suggested
that improved test scores could reflect increased“compliance”
and “test-taking skills” (p. 190) rather than enhanced
intellectual functioning.
Answer: This effect occurs in children from impoverishedfamilies (as noted by Gresham and MacMillan), but not inchildren with autism (Freeman, Ritvo, Needleman, & Yokota,
1985; Lord & Schopler, 1988; Rutter & Bartak, 1973; see Rutter,1983), as we pointed out already in answer to Schopler andcolleagues (1989: Lovaas et al., 1989). Moreover, the effectis much smaller than the gain we obtained (typically about
10 points for a maximum of 4 years, not 20 points over a 10
year period, including many years without treatment, as wereported).
Statement: As Schopler and colleagues (1989) pointed out,
“Improvement on IQ measures may reflect improvement
in compliance rather than in cognitive functions” (p. 190).

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Chapter 3: How Health Technology’s Attack on Lovaas Treatment Fails

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

and organizations, such as the U.S. Surgeon General and the New YorkState Department of Health, do not hold the view espoused by BCOHTA
researchers. The opposite is true. Any organization or academic that is
disinterested and thinking purely about the role of science in developing
effective treatments for autism, considers the work of Lovaas and colleagues
as groundbreaking, of high quality and a landmark achievement in the fieldof autism treatment.

They report that, after 24 months, 4 of the 9 treated children
had non-verbal IQs of 89 or higher; the language levels of
the treated group doubled that of controls.63
The BCOHTA also reports that in Sheinkopf and Siegal (1998):
The treatment group had a mean IQ 25 points higher thanthe control group (mean of 90 versus mean of 64; p = .01).
All 10 children in the treatment group with outcome data
improved on IQ measures, usually by 20 or more points.64

Have Others Replicated the Success of Lovaas Treatment?
Many practitioners,
reviews, andorganizations, suchas the U.S. Surgeon
General and the
New York State
Department of
Health, do not holdthe view espoused
by BCOHTA
researchers.

The BCOHTA report tends to discount or omit relevant information flowing
from research designed to replicate Lovaas’ original research. Office analysts
evaluate the work of Birnbauer and Leach (1993) and Sheinkopf and Siegal(1998) and conclude that due to the poor quality of these studies, “it is
impossible to determine any causal inference relating to the limited gains
reported for these children.”62
In fact, there are two other studies that BCOHTA researchers omitted fromtheir report, despite the fact that their “exhaustive” literature search did
uncover those studies (Smith et al., 1997; Anderson et al., 1987). These twostudies are discussed here because they offer additional evidence as to theefficacy of the Lovaas autism treatment protocol.
In their report on Lovaas Autism Treatment, Office analysts have tightly
framed the debate such that if evidence cannot be found that a given
percentage of children are “cured,” then the treatment protocol has failed.
The “straw man of cure” (versus loss of diagnosis) has been discussed
previously; in this section, the highly relevant yet neglected issue is that inevery Lovaas Treatment study done, autistic children significantly improved.
This remains true whether the study was well done and strictly controlled,
such as Lovaas, 1987, McEachin et al, 1993, or Smith et al, 1997, or loosely orcompletely unaffiliated with U.C.L.A., such as Birnbauer and Leach (1993), andSheinkopf and Siegel (1998). The fact remains that autistic children improved
significantly with behavioural treatment based on the Lovaas model.
BCOHTA does state that:66

The BCOHTA reporttends to discountor omit relevant
information flowing
from research
designed to replicate
Lovaas’ original
research.

In Smith et al., 1997, a study done with severely autistic, mentally retarded
subjects, the children made substantial gains subsequent to Lovaas
treatment. Smith et al. state:
At the follow-up evaluation, the intensively treated children
achieved a higher mean IQ (36 vs. 24) and demonstrated
more expressive speech than did the minimally treatedchildren. Ten of the 11 intensively treated children spoke inwords and used them to label objects and express needs atfollow-up, whereas only 2 of 10 minimally treated children
did so.65
In the Anderson et al, 1987 study, outcome was as follows:
Most of the 14 children who participated in the study
demonstrated significant gains in their language, self-care,social, and academic development, as evidence by the resultsof standardized assessments and individual treatment data.”(Anderson et al., 1987: 352). Of note, is that these children
received only 20 hours of treatment a week over a two year
period. At the end of the study, most children remained in
special education. They describe the school placement asfollows: “The results of school placement ratings indicatethat only one child (n=11) participated in socially integrated
school placement at the time of her admission into theprogram. At the end of one year of participation in the
program, 23% of the children (n=13) were integrated atleast two hours a week. This percentage had increased to67

Chapter 3: How Health Technology’s Attack on Lovaas Treatment Fails

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

31% (n=13) by the time the study had been completed.
Nevertheless, all children continued to require specialized
services and none were mainstreamed full-time in a regularkindergarten or first grade classroom.66

The fact remainsthat autistic
children improved
significantlywith behavioural
treatment based on
the Lovaas model.

What is apparent from these various studies is that the Lovaas treatment
protocol is robust to the extent that even when insufficient training oroversight of research staff (therapists) occurs, the children still make verysignificant gains. Given that autism is a severe and historically intractablecondition, such favourable results are very encouraging and clearly support
the efficacy of the treatment protocol. The various studies cited above canbe viewed as instantiations of the original Lovaas study insofar as children
made significant gains. They also teach us another very important lesson.
These studies, which were run without sufficient oversight and trainingof staff, strongly show that the Lovaas protocol, although robust, must be
delivered in a disciplined and competent manner if outcomes approaching
the U.C.L.A. young autism project are to be equalled. This strongly supports
the view that “good enough” is not good enough to overcome or adequately
ameliorate the condition of autism. Effective behavioural autism treatment
programs require close supervision by highly qualified, trained professionals.

The Classic Aversives Ruse
A favorite tool in the anti-Lovaas “kit-bag” is to exploit the spurious issue ofaversives. Office analysts do not hesitate to exploit this easy, push-button
topic to manipulate with fear. Below is a discussion surrounding the topic
of aversives the BCOHTA raises.
The BCOHTA suggests that without the use of physical aversives, the Lovaas
treatment protocol may not be effective. In the original study, four of thechildren were subjected to one aversive procedure, which was a slap on thethigh. The BCOHTA states:
On the other hand, they recommend excluding certain
aspects of the initial Lovaas treatment program that havebecome socially unacceptable. For example, the authors
recommend against use of physical aversives as part of the68

applied behavioural analysis program, but without notingthat this may have been an essential component of the initial
Lovaas (1987) treatment success.67
Smith and Lovaas (1997) dispense with this BCOHTA critique through a reply
to Gresham and MacMillan. Smith and Lovaas state:

A favorite tool in
the anti-Lovaas“kit-bag” is to
exploit the spurious
issue of aversives.
Office analysts do
not hesitate to
exploit this easy,
push-button topic
to manipulate withfear.

This was true in Lovaas (1987) [the use of physical punishment
to decrease inappropriate behaviors], but it is not true of thecurrent UCLA project because we believe research advances
since the time the study began (the 1970s) have renderedsuch procedures unnecessary. Hence, it is incorrect to saythat “physical punishment is used” in the UCLA project. Sucha statement needlessly deters other sites from adopting
the UCLA treatment model, and it gives the erroneous
impression that the treatment has not evolved over time as
research has progressed.68
Moreover, in none of the replication studies, such as Birnbauer and Leach,
1993; Scheinkopf and Siegal, 1998; and Anderson, et al., 1987, were physicalaversives used; yet the results for the treatment groups were still significant
and impressive.
Office analysts present the elimination of physical aversives as a consequenceof the lack of social acceptance of this procedure. There are methodologicalreasons Lovaas abandoned physical aversives. In an interview with theCanadian Broadcast Corporation’s Nature of Things program, Lovaas
describes the problem of “satiation” with physical aversives. The basic conceptof satiation is this: if a small physical aversive is given to a child with autism,
the first time, it may be effective. With subsequent use of the aversive, thechild may not respond because it is no longer aversive. The child has satiatedon a low level. As one increases the level incrementally, the child satiates on
the aversive incrementally. Clearly one cannot continually increase the levelof the aversive. Therefore, if only from a research standpoint, it is preferable
not to use physical aversives at all.
A child that is continually positively reinforced in treatment is being rewarded

69

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

70

Chapter 4: BCOHTA’s Deceptive Use of Research

Chapter 4
BCOHTA’s Deceptive Useof Research
In This Chapter
State of the Science in Autism
Do Children withAutism Do Well WithoutTreatment?
Is Daycare Good Enough to Treat Autism?
A Strategy to RationAutism Diagnoses?
Questionable Use of Other Scholars’ R esearch
BCOHTA and theAmerican Psychological Association

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Chapter 4: BCOHTA’s Deceptive Use of ResearchPart I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

In addition, the NIH researchers state:
It is also clear that persons of all ages and levels of ability
can benefit from access to consistently available, proventreatment. It is also known, however, that treatment
response is not uniform within the population. Althoughmany children may be brought to the point of near-normal
functioning, others are much less responsive to social/
behavioral intervention programs3 (emphasis added).
The BCOHTA devote
a very small amountof “analysis” anddiscussion for
significant evidence
that supports a “bestpractices” argumentfor Lovaas Treatment.

The position of the U.S. NIH is strikingly different from that which BCOHTA
researchers portray. The BCOHTA citation is, therefore, highly misleading.
The BCOHTA omission of key NIH citations may therefore be interpreted as
further evidence that BCOHTA functions for, and is devoted to, advocacy
research on behalf of the B.C. Government.

Do Children With Autism Do Well Without Treatment?
The next area BCOHTA researchers address concerns the notion of
spontaneous “recovery” from autism. Office analysts present a researchcitation to suggest there are a significant number of children with autism that
do well on their own, without any autism treatment. This builds a foundation
for a later BCOHTA argument that Lovaas may have “creamed” from such apool of children, and hence, achieved remarkable outcomes. Remarkable
outcomes can be called into question if an argument can be made that thosesubjects came from a subset of children who would have “recovered” or donevery well anyway.
Again, BCOHTA relies upon the strategic, selective use of research citations
such as Howlin, 1997, and Nordin and Gilberg, 1998, to support the claim ofsupposedly spontaneous “recovery” from autism. BCOHTA researchers state:
Howlin concludes that: “over the years, there has been
improvement in the levels of functioning attained bypeople with autism.” While the majority of individuals
are ranked as “fair” or “poor,” 10%-20% of people in the72

The BCOHTA
omission of key NIH
citations can only
be interpreted as
further evidence that
BCOHTA functions
for, and is devoted
to, advocacy
research on behalfof the provincial
government.

The BCOHTA study is replete with references and scholarly citations, giving
the appearance of a sophisticated and well researched report. However, it
is important to note that BCOHTA was highly selective in its use of citations.
Specifically, the authors identify quotations from the literature which
support their argument, and present the quotations out of context. In thismanner, they avoid presentation of a balanced view regarding what the citedresearchers have actually written about the Lovaas protocol. In addition,
BCOHTA researchers choose to highlight topics with little relevance to theissues, such as discussion on the tiny percentage of children who do wellwithout treatment, or highlighting a study with very poor outcome data. On
the flip side, they devote a very small amount of “analysis” and discussion
for significant evidence that supports a “best practices” argument for Lovaas
Treatment — their superficial evaluation of the New York Report being aprime example.

State of the Science in Autism
The first major example concerns the article written by Bristol, et al., 1996. In
this work, the entire state of the science in autism is reviewed and organized
into working groups for diagnosis, epidemiology, pathophysiology, brain
mechanisms, communication/social/emotional development, medical
intervention, and social and behavioral intervention. Office analysts utilize
the misleading citation below to make the following claim:
The weaknesses of current knowledge are documented
in the report “The state of the Science in Autism” by the
US National Institutes of Health, which notes that “Only a
few longitudinal studies of children with autism have been
conducted.”1
However, the BCOHTA study fails to note that the same organization, theNIH, also concluded:
Although there is no cure, autism is treatable througheducational interventions of various types. Early intervention
may be particularly effective, presumably because of theplasticity of the neural systems at that time 2 (emphasis
added).
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Chapter 4: BCOHTA’s Deceptive Use of ResearchPart I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

latter years are in their own homes and in work. Howlin
qualifies the conclusions by noting the “direct comparisons
between studies are complicated, because of differences inmethodology, in the subjects involved, and in data analysis.”4(33,39) but towards the end of the 1960’s Michael Rutter
and his colleagues conducted a detailed follow-up of 63
autistic individuals initially diagnosed during the 1950’s
and 1960’s. Amongst those who had reached adulthood,over half were in long stay hospitals, eleven were still livingwith their parents and three were placed in special autistic
communities; only three were in paid employment (87, 137,
138)6 (emphasis added).

The BCOHTA reportclaim that suggests
10%-20% of autistic
adults spontaneously
fall into the “paidemployment”
category.

The position of Howlin regarding “spontaneous recovery” is strikingly different
from that which Office analysts portray. The BCOHTA citation is, therefore,
misleading. Howlin’s findings are more in line with the generally held view
amongst psychologists and psychiatrists, that autism is an intractable
disorder that, if left untreated, severely compromises the independence andquality of life of autistic adults.
Howlin’s work shows that a mere 4.8% of the autistic people researchers
followed into adult life were sufficiently independent and teachable so as
to be gainfully employed. This sharply contradicts the BCOHTA report claimthat suggests 10%-20% of autistic adults spontaneously fall into the paid
employment category.
Regarding behavioral treatment, Howlin’s view is strategically excluded fromthe BCOHTA analysis. Howlin states:
There is little doubt that the use of behavioural procedures
has resulted in major improvements in the education,
management and treatment of children with autism overthe last three decades7 (emphasis added).
Office analysts therefore appear to have misrepresented the arguments andfindings of Howlin to support the BCOHTA advocacy position.

Is Day-Care Good Enough to Treat Autism?
In order to inject Canadian content into the discussion, and come up witha Canadian solution, the researchers at the BCOHTA present the Jocelyn

74

What is excluded, however, by BCOHTA’s selective citation is Howlin’s
reasoning for the improvements in the levels of functioning attained bypeople with autism. Howlin suggests that some of the change may be due
to better treatment and education, although she admits the statistics are
misleadingly strong, due to the deinstitutionalization movement. Howlin
states:
Office analysts
appear to havemisrepresented
the arguments andfindings of Howlin to
support the BCOHTA
advocacy position.

Obviously, these changes cannot be directly attributed tobetter treatment and education - the decrease in hospitalcare, for example, is mostly due to the widespread closureof large institutions - but they are encouraging.”5(emphasis
added).
An additional statistic BCOHTA researchers elect to highlight is Kanner’s
findings regarding purportedly positive outcomes for people with autism.
Kanner claims that 11% to 12% of adult autistics are “doing well.” This finding
is problematic because, according to Howlin, early reports — of which Kanner
was the earliest — are not representative of autistic persons followed into
adulthood. Significantly, we do not know what “doing well” is because
the term is not defined by any explicit, recognized measures. Presumably
BCOHTA researchers do not know what constitutes “doing well” either. There
are two reasons for this:1) Office analysts acknowledge they are unfamiliar with psychology
and do not possess expertise in psychosocial treatment and2) the BCOHTA appears to have relied exclusively on secondary
source material. The bibliography does not even include the Kannerarticle they rely upon in their analysis. Instead, they have quoted
Kanner through a secondary source (Howlin); Kanner’s findings werereported and interpreted by Howlin.
Howlin offers the following conclusion regarding the issue of spontaneousrecovery from autism:
Early reports of adults with autism were largely anecdotal
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Chapter 4: BCOHTA’s Deceptive Use of ResearchPart I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

et al. 1998 study as a supposedly “groundbreaking” study. They claim thestudy is groundbreaking due to the use of random assignment of subjects
to experimental and control groups. They describe the study as follows:

above preschool as an “intensive community-based integrated treatment
program.”11 Such misleading and inappropriate use of the term “intensive”
can only be attributed either to a profound lack of knowledge regarding
psychosocial treatment, or a deliberate attempt to mislead the reader about
the true nature of work conducted by Jocelyn et al.

Such misleading
and inappropriate
use of the term
“intensive” canonly be attributed
either to a profoundlack of knowledge
regarding
psychosocial
treatment, or adeliberate attempt tomislead the reader.

The intervention reported by Jocelyn et. al, can in no way be regarded as“intensive,” nor can it be described as “treatment” because the intervention
was “directed primarily at the parents and day-care staff rather than thechild.”12 (emphasis added). Moreover, after spending 15 hours learning
about various topics relevant to autism, a child-care worker hardly qualifies
to deliver science-based treatment for a complex neurological disorder. It
is central to note that nowhere does the BCOHTA report describe exactly
what child-care workers did with the children (from a specific operational
standpoint) that could constitute “treatment” in the Jocelyn et al. study.
In addition, the BCOHTA researchers appear to take on the role of apologists
for the Jocelyn et al. study which they consider “ground-breaking.” Jocelyn
et al. has virtually no statistically significant child outcome results aside froma statistically significant language improvement (5.3 months acquisition of
language in 3 months — a 2.3 month improvement). A well-designed study
would presumably have used outcome measures with sufficient sensitivity todetect improvement in the other six areas that were measured. In contrast,
every program in the Lovaas treatment protocol uses data collection
techniques which enable progress to be observed daily.
In short, the BCOHTA elevates the Jocelyn et al. study to a level of importancethat is clearly not warranted by the insignificant outcome achieved in the
study.

Do We Need to Ration Autism Diagnoses?
BCOHTA researchers introduce a discussion regarding the costs and benefitsof early screening. They then describe Lord (1995), Cox et al. (1999) andStone et al. (1999) who test early diagnostic tools. Based on this discussion,
they conclude:
Support for “early” therapy should therefore be directed
76This study, although only 12 weeks in duration, is particularly
relevant because it shows randomization is suitable for
empirical validation of an early (24-72), intensive communitybased integrated treatment program. While their study
is ground-breaking in this area of research, it was, as theauthors note, too short to determine ultimate treatment
effect.8
In short, the BCOHTA
elevates the Jocelyn
et al. study to a levelof importance that isclearly not warrantedby the insignificant
outcome achieved in
the study.

BCOHTA researchers attempt to mislead the reader regarding Jocelyn et al.
in terms of the study’s intensity and treatment outcomes. At this point, it isimportant to briefly describe the Jocelyn et al. study.
First, the children in both the experimental and control group attended preschool for an average of 21.4 hours a week (4.28 hours a day). Each childwas given a child-care worker who attended the preschool with the child.
The program upon which the Jocelyn et al. study is based is not intensive
and does not constitute treatment delivered by competent, qualified autism
treatment personnel. Jocelyn et al. describe the supposed “intervention:”Intervention was directed primarily at the parents and daycare staff rather than the child. In this model, caregivers
were helped to develop understanding and empathy for thechild’s view of the world, as a means of predicting behavior,understanding its communicative aspects, and enhancing
mutual enjoyment of interactions. They were taught how
to perform a functional analysis of behavior and to planand evaluate strategies for changing behavior. Facilitating
language and social development as a proactive approachto enabling the child to meet his needs and function
appropriately in his or her environment was given priority
over targeting “problem behaviors.” Inclusion of the family as
active team members was emphasized.9 (emphasis added).
According to Jocelyn et al., these child care workers attended only a total of“five weekly 3-hour classes.”10 Despite this, Office analysts have defined the77Chapter 4: BCOHTA’s Deceptive Use of ResearchPart I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

toward early treatment of children known to have autism,and not toward therapy of children receiving an “early”
diagnosis.13

Stone et al. state:
Taken together, these results suggest two conclusions: (1)the identification of an autism spectrum disorder can bemade reliably in children below the age of 3; and (2) the
specific diagnosis of autism can be made reliably in children
under 3 years, as long as the diagnosticians have experienceevaluating young children.17

The Office takes
Rogers’ quote outof context. Dr.
Rogers’ point is thatreports of increased
treatment successwith younger
children havesignificant treatment
implications.

Unlike Office analysts, the researchers cited above are concerned about false
negatives, i.e., they strive not to miss a diagnosis of an Autism Spectrum
Disorder in a young child. However, the BCOHTA appears to be concerned
about false positives that may cost the government money.

Questionable Use of Other Scholars’ Research
BCOHTA researchers claim there is a lack of support for Lovaas treatment
effectiveness claims in the literature.
For example, BCOHTA researchers quote Rogers:(Studies) did not demonstrate the level of improvement in
multiple areas of functioning or the sustained long-term
effects of the treatment that Lovaas reported. The field
awaits a full, independent replication of the Lovaas study
26 (p. 176).18
However, Rogers also states:
There are several methodological strengths of this study [theLovaas study]. Group sizes, although not large, were notunduly small. There was a treatment manual that outlined
both the treatment techniques and the actual content of
the treatment. Treatment givers were all trained by the core
staff and supervised closely. Children were diagnosed byprofessionals outside of the treatment team prior to referral
and the first set of follow-up data were gathered by outside78

The BCOHTA further state:

The BCOHTA appears
to be concerned
about false positives
that may cost the
government money.

The published effectiveness evidence does not include any
studies which examined overall outcome following early
diagnosis using a screening manoeuvre. That is, studies todate have not followed a population of children diagnosed“early” in the natural history of the condition to determine
both the benefits from early treatment and the costs
associated with false positive and false negative diagnostic
labelling.14
Office analysts claim Rogers has come to a similar conclusion:
Rogers similarly concludes, “The hypothesis that age atstart of treatment is an important variable in determining
outcome has tremendous implications for the fieldand needs to be tested with methodologically rigorous
designs.”15 (emphasis added).
However, the Office takes Rogers’ quote out of context. Dr. Rogers’ pointis that reports of increased treatment success with younger children havesignificant treatment implications.
Rogers states:
Whereas there were a variety of methodological problems
in this study [Fenske et al., 1995], other converging evidence
also speaks to the potential importance of the age variable.16
BCOHTA’s focus on false positive or negative diagnostic labeling may be
explained by its cost-savings implications; however, Lord (1995), Cox etal. (1999) and Stone et al. (1999) are not concerned with cost savings bydiagnosing children late. The opposite is true. These researchers are finding
that, on the whole, a diagnosis at two years of age is quite reliable.

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implication of the Lovaas study stands in marked contrast to the view
espoused by BCOHTA researchers.

BCOHTA and the American Psychological Association
It is apparent the U.S.
Surgeon General’sview regarding
the quality andimplication of the
Lovaas study stands
in marked contrast to
the view espoused by
BCOHTA researchers.

With respect to the American Psychological Association Task Force, theBCOHTA select the following citation to make it appear as though the APA
does not support the concept of therapy for children with autism. The
BCOHTA says that the American Psychological Association Task Force hasstated:With regarding [sic] Lovaas therapy, they state that thisprogram of therapy has not been established as efficacious
according to their [APA] criteria. “To date, no comprehensive
integrated intervention for autism has sufficient support toachieve either well-established or probably efficacious status
partially because of concerns and problems with conducting
randomized assignment group designs and a lack of strong
replication studies.”21
BCOHTA researchers contend the APA citation is “With regarding [sic] Lovaas
therapy...” . This is not the case — the citation is not specific to Lovaas but
applies to all top comprehensive treatment packages. More importantly,
BCOHTA researchers strategically exclude the APA position regarding “bestpractices.” The APA Task Force grapples with the dilemma of withholding
treatment for patients until the research is flawless.
The APA states:“The existing treatment outcome literature [regarding
psychosocial intervention ], despite its flaws, does provide
guidance for how to proceed with clinical practice... Given
the choice between using an intervention proven effective

80

The Office displays anastonishing degreeof elitism when it
completely dismisses
clinical guideline
experts and clinicians
as unable to establish
recommendations
consistent withresearch evidence.

professionals blind to treatment status. Interrater reliability
was reported for pretreatment behavioral measures.
Outcome variables at second follow-up included several
different kinds of measures, well chosen to document current
levels of functioning in areas that are generally significantly
affected by autism: IQ, adaptive behavior measures, school
placement, and behavioral measures. Follow-up was carriedout for many years after the treatment was delivered, so that
long-term effect of the treatment could be examined. The
two control groups allowed for examination of two different
treatment conditions, one of which represented typicalcommunity programs and the other representing both
typical community treatment and some level of behavioral
interventions. Thus, one control group could be considered
to be allowing for comparison with nonspecific treatment.
A very important finding was that in the treated group,
outcome was predicted by pre-treatment mental ages19(emphasis added).
Rogers makes a valid point, as does Lovaas, that Lovaas’ study should be
replicated and that there is always room to improve. No scholar would deny
that; indeed, Lovaas has received considerable grant resources from the
U.S. National Institutes of Health and has had a multi-site replication study
in progress for more than a decade (150 children across 14 sites).
The BCOHTA report makes no mention of the U.S. Surgeon General’s reporton mental health. U.S. Surgeon General’s report states:
Thirty years of research demonstrated the efficacy of applied
behaviour analysis methods in reducing inappropriate
behavior and increasing communication, learning, andappropriate social behavior. A well designed study of a
psychosocial intervention was carried out by Lovaas andColleagues (Lovaas, 1987; McEachin et al., 1993)20 (emphasis
added).
It is apparent the U.S. Surgeon General’s view regarding the quality and81

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

for children similar to ones seen in a clinical setting or using
a treatment that has not been subject to this test (or worse,
demonstrated to be ineffective), it seems that a best guess for
effectiveness would be the treatment that works for a related
problem or population (e.g., a less severe manifestation of
the disorder or problem)22 (emphasis added).
In short, doing nothing about autism treatment is a policy that is clearly
not supported by the American Psychological Association, regardless of the
Office analysts’ interpretation to the contrary.
Dr. Ken Bassett, firstauthor of the BCOHTA
report, in an article
originally authoredfor colleagues in the
Health Technology
Assessment field,
states: “...avoid CPG[Clinical Practice
Guidelines] likeswampland — they
are!”26

Chapter 4: BCOHTA’s Deceptive Use of Research

like swampland — they are!”25 Dr. Bassett is referring to the “damage” Clinical
Practice Guidelines cause the Health Technology Assessment movement’s
battle against drug companies. However, the point is the same; clinicalpractice guidelines tend to compete with the power and authority of the
Health Technology Assessment movement including the BCOHTA.
A dangerous implication of the highly selective and deceptive use of citations
is the fact that it is both difficult and time consuming to uncover and expose
the bias. However, the biased BCOHTA report on Lovaas Treatment is a clear

Moreover, the citation above indicates the APA does not share the BCOHTA’sopinion regarding the entire clinical guideline movement. The Office displays
an astonishing degree of elitism when it completely dismisses clinicalguideline experts and clinicians as unable to establish recommendations
consistent with research evidence. The BCOHTA Report states:
while acknowledging the limitations of the clinicaleffectiveness evidence, they tend to make recommendations
that extend far beyond what that evidence will support.23
It could be argued that members of the B.C. Guidelines and Protocols Advisory
Committee, under Medical Services Commission, likely take a different view
regarding clinical practice guidelines, especially since they have issued 28
clinical practice guidelines currently in place for British Columbia.24
The New York Autism Clinical Guidelines were based upon therecommendations of an impressive “best in class” group of autism academics
who recommended Early Intensive Behavioral Intervention, and relied very
heavily on the landmark research of Lovaas and colleagues to establish
those guidelines. Perhaps the BCOHTA had to dismiss the clinical guideline
movement in order to minimize the impact of the New York Guidelines in
the litigation. However, the APA task force, which Office analysts rely upon,
supports the use of clinical guidelines for autism treatment.
The wholesale discounting of clinical practice guidelines is not unique tothis analysis. The BCOHTA may see clinical guidelines as a threat to its ability
to identify treatments as experimental. Dr. Ken Bassett, first author of the
BCOHTA report, in an article originally authored for colleagues in the HealthTechnology Assessment field, states: “...avoid CPG [Clinical Practice Guidelines]

82

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84

Chapter 5: BCOHTA and Provincial Policy

Chapter 5
BCOHTA and Provincial
PolicyIn This Chapter
Parents and Daycare Workers asAutism Therapists?
Diagnosis Control
Are Generic Supports Effective for Autism?
Are Parents Naive Consumers?
L ovaas Labelled as Experimental

85

Chapter 5: BCOHTA and Provincial Policy

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

The BCOHTA analysis of Lovaas Treatment presents several arguments thatprovide academic legitimacy for, and support of, provincial special needs
policies for young children with autism. This section’s purpose is to take acloser look at the relationship between current provincial autism policy andthe BCOHTA analysis.

extent of Jocelyn et al.’s supposed “autism training” to equal a formal
university education and experience in psychosocial treatment. Yet it isprecisely this caliber of professional credentials autistic children require if
the terms “intensive autism treatment” are to be used legitimately.

What occurred at
the preschool —minimally trained
child care workers
interacting withchildren — would
not be considered“treatment” by any
definition recognized
by impartial
psychologists
with expertisein psychosocial
treatment.

In the Jocelyn et al. study, a child-care worker with 15 hours of “training”
accompanied an autistic child to a half-day of preschool. The study results
showed that the children with autism in the special program did not
significantly improve, relative to the children with autism who were notaccompanied with a child-care worker with 15 hours training. Despite thelack of significant successful outcome data, as described above, BCOHTA
researchers support Jocelyn et al., not because children with autism received
quality treatment, but because Jocelyn et al. supports the policy that parents
and support workers could somehow be trained to purportedly “do” earlyintervention. Training unqualified amateurs is far less costly than funding
bona fide, one-on-one, intensive behavioural treatment delivered bycompetent and credentialed autism treatment professionals.
In short, an important component of the provincial special needs policy
therefore appears to be to utilize existing “community-based” resources toadminister generic early intervention.
BCOHTA’s analysis supports provincial policy described above with thefollowing assertion:
But this therapeutic approach, in contrast to behaviouralmodification, is regarded as requiring intensive trainingby specialist therapists. Behavioural therapy on the other
hand is more adapted for training parents and teachers to
be part, often the primary providers, of the therapy itself2(emphasis added).
However, the BCOHTA report does not discuss whether it is reasonable toexpect parents to somehow become autism intervention specialists, with
only a perfunctory introduction to autism? Office analysts fail to provide
compelling research evidence that parents are qualified to deliver bona fide
treatment for the highly complex neurological disorder of autism.
Instead, researchers at the BCOHTA appear to believe that autism can be

86

Specifically, there are five recurring themes in the provincial policy agenda:
parents and daycare workers as autism therapists; diagnosis control; genericsupports; naive consumers; experimental nature of Lovaas.

Training unqualified
amateurs is far
less costly thanfunding bonafide, one-on-one,
intensive behavioural
treatment deliveredby competentand credentialed
autism treatment
professionals.

Parents and Daycare Workers as Autism Therapists?
The provincial autism policy has emphasized the role of parents (as opposed
to highly qualified professionals) in administering “treatment” to their own
autistic children. Indeed, government contractors did not work directly withchildren. Instead, the task appears to have been to help parents cope with
their disabled child.
Office analysts appear to use autism literature to support this provincial
policy. The reliance on the Jocelyn et al. (1998) report has already been noted.
BCOHTA researchers state:This study, [Jocelyn et al., 1998] although only 12 weeks
in duration, is particularly relevant because it shows
randomization is suitable for empirical validation of an early(24-72 months), intensive community-based integrated
treatment program.1 (emphasis added).
As stated previously, work conducted with autistic children in Jocelyn, et al.
(1998) can hardly be viewed as “intensive.” What occurred at the preschool— minimally trained child care workers interacting with children — would
not be considered “treatment” by any definition recognized by impartial
psychologists with expertise in psychosocial treatment.
Over a 15-hour training period, the Jocelyn et al. study delivered small
amounts of education to parents and child-care workers regarding autism.
Although certainly of some value, psychologists would not consider the87

Chapter 5: BCOHTA and Provincial Policy

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

adequately treated by parents and paraprofessionals. The vast majority ofparents have no formal autism treatment qualifications, yet BCOHTA inferredthat minimal training and qualifications are all that is required to deliver
effective treatment for autism. In a perplexing determination, BCOHTA
views behaviour therapy as “more adapted for training parents...”3 rather
than a therapy to be delivered to the children themselves.

The initial phase of treatment was delivered largely in thehomes, with parents also trained and carrying out thetreatment.5
Although parents are trained in some aspects of the Lovaas treatment
protocol, and are usually in-home supervisors of their child’s treatment
program, they do not typically function as the primary therapists. They are,however, expected to “follow through” with Lovaas protocol techniques toprovide continuity during their child’s every waking hour. Lovaas discusses
the problems with parents doing therapy. He states:
The vast majorityof parents haveno formal autism
treatment
qualifications, yet
BCOHTA views
parents as candidates
for “primary
providers” of autism
therapy.

Not all parents of autistic children can be taught to become
effective teachers or therapists for their children. This is truein cases where the parents are divorced and the mother has
to work for financial reasons...6
Lovaas further elaborates on the role of parents as part of the therapy team:In the introduction to this paper we discussed that the
primary reason for involving the parents of the autistic childin the treatment program as explicitly trained cotherapists
concerned efforts to generalize the treatment gains toall of the child’s environments, and to protect his gains
from relapse once formal therapy is terminated. It wasalso pointed out that since autistic children have such a
profound deficiency, nothing short of a major therapeuticeducational effort, necessitating one-to-one treatment
on an all-day basis, could be considered sufficient. For
all practical purposes such a plan must involve the child’s
parents7 (emphasis added).
The central point is that parents must be as involved as possible; however,
Lovaas at no time suggests that the parents perform the primary treatment
function. Their job is to follow through when the therapists leave, or when
the child no longer requires intensive therapy.

88

Parents’ job is tofollow through when
the therapists leave,or when the childno longer requires
intensive therapy.

Some U.S. jurisdictions take a very different view. For example, California
and Florida have certification laws for behavioural consultants and therapists.
Rigorous criteria are set out for behavioral consultants and therapists
before they may legally “treat” children who suffer from autism. Had
BCOHTA researchers reviewed these U.S. certification laws in the course of
their exhaustive literature search, perhaps they would have come to theconclusion that parents and daycare workers (e.g., Jocelyn et al.) do not meetthe minimum standards for even junior therapist classification in Florida or
California.
It is apparent that these U.S. jurisdictions deem behavioural therapy as abona fide, powerful treatment that must be regulated to protect patientsafflicted with autism. These U.S. state legislatures have taken steps to ensurethat high standards of health care are delivered.
The Office further supports the policy of classifying “parents as therapists,”
when they cite 271 published studies from academic literature regarding
behavioral therapy (Applied Behavior Analysis) in the following manner:
It may be noted that among the techniques included ishome-based, parent-mediated therapy - of particular interest
here as one of a variety of parent-mediated therapies.4
However, none of this research is subjected to the BCOHTA’s validity analysis
that was applied to Lovaas’ research.
Perhaps in order to further support the policy of “parents as therapists,”
BCOHTA suggests that the Lovaas protocol relies on parents as therapists.
BCOHTA states:

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Chapter 5: BCOHTA and Provincial Policy

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

Office analysts also evaluate an alternative home-based therapy to Lovaas,
developed out of the TEACCH program. TEACCH may have been selected
because it is considered “cost-effective” and because parents perform thetherapy. BCOHTA states:

the provincial government had discriminated against the children in thelandmark Auton lawsuit.

Diagnosis Control
The BCOHTA report also discusses diagnosis of autism although this does
not seem to fall within the stated research question.

The home program involved 10 treatment sessions, in theclinic and home, designed to assist parents in becoming
co-therapists.8

BCOHTA states:

Once again, theBCOHTA researchers
apply inconsistent
application ofevaluative standards.

A more recent problem has emerged in relation to estimatesof the incidence of autism. It appears that, at least in the
BC context, problems with the diagnosis of autism may notsimply be due to problems in the application of validated
diagnostic criteria. The possibility arises that children withother pervasive development disorders may nonethelessbe diagnosed with autism in order to gain access to services
linked to that diagnosis. The extent of this phenomenon or
its influence on incidence estimates remains unknown.11
In the above citation, Office analysts support the tight definition of autism toseparate it from “other pervasive development disorders.”12 In addition, they
imply that parents and professionals may have been “massaging” the system
in order to receive government benefits for children who would otherwise
be ineligible. This is not only offensive, it is also inaccurate:(1) at the time of the BCOHTA report, there were no bona fide autism
treatment services universally available for children with autism in
B.C. so there was little utility in obtaining a diagnosis(2) The U.S. National Institutes of Health (NIH), views the widespreadincrease in autism diagnoses as genuine. Dr. Marie Bristol-Power,of the National Institute of Child Health and Human Development
and coordinator of autism research at the NIH, states with respect
to increases in diagnoses: “I don’t think it’s just better diagnosis, orthat autism or PDD is the disease du jour... there is something elsegoing on, and we are hoping to solve this problem.”13

90

BCOHTA goes on to state:
BCOHTA imply
that parents andprofessionals
may have been“massaging” thesystem in order toreceive government
benefits.

The BCOHTA authors agreed that this study is worth
considering because, although the intervention period isonly 10 - 12 weeks and it suffers from many methodologicalflaws, it is a prospective controlled trial using overalloutcomes that studied an intensive, home-based treatment
alternative to Lovaas therapy.9
Once again, the BCOHTA researchers apply inconsistent application ofevaluative standards. They evaluate the TEACCH home program applying
the NIH criteria leniently, as opposed to a far more aggressive application ofstandards to evaluate Lovaas’ study using the same NIH criteria. The BCOHTA
actually views TEACCH as a viable alternative to Lovaas, despite TEACCH
research violating the NIH criteria.
BCOHTA states:
The controlled study by Ozonoff, although short andsmall-scale, provides at least some evidence that alternate,home-based programs, in this instance emphasizing parent
teaching as opposed to applied behavioral analysis, needfurther evaluation both independently and in comparison
with Lovaas treatment.10(emphasis added).
Competent delivery of best practices health care for a very complex disorder,
such as autism, cannot be delivered by unqualified, under qualified or
poorly trained personnel, no matter how loving and caring the workers. It
was the failure to fund effective treatment that led to the conclusion that91

Chapter 5: BCOHTA and Provincial Policy

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

result in successful outcomes for children with autism.

By contrast, the BCOHTA supports the hypothesis that no genuine increasein the incidence of autism exists.

BCOHTA states:

The BCOHTA
apparently does notwish to acknowledge
that children
with pervasive
developmental
disorder nototherwise specified(PDD-NOS) needtherapy in thesame manner as
do children with socalled “full-blown”
autism.

Also not examined are the challenges of sustaining
standardized services across widely-dispersed geographic
areas, such as the province of British Columbia, other thanto acknowledge, as the involvement of three government
ministries in developing an Autism Action Plan suggests, thata wide range of specialists and special services are requiredin this field; and that the demands placed on these resources
are likely to be increased by the need to integrate the Autism
Action Plan with government commitments to other special
needs children and their families.16
BCOHTA also states:
Specific behavioural therapies, shown effective, need to bematched to local needs and the abilities of local therapists.17

Are Parents Naive Consumers?
Parents across Canada are currently funding Lovaas Treatment for theirchildren at considerable personal financial cost. These parents are portrayed
as “naive consumers” by a paternalistic BCOHTA.
BCOHTA states:
In the case of autism, the human drama of the popularpress can be especially compelling. If a specific therapy or
program holding out hope of ‘cure’ is presented to families
facing daunting challenges, the impact on them is likely to
be significant.18
It is unquestionably true that parents are confronted, on a regular basis, withunsubstantiated autism intervention options that claim to improve or “cure”
autism. Parents of newly diagnosed children have much to sort through.

92

BCOHTA states:
Support for “early” therapy should therefore be directed
toward early treatment of children known to have autism,and not toward therapy of children receiving an “early”
diagnosis.14
These health policy
technocrats portrayparents as naive
consumers, somehow
duped by media
hype, into spending
significant sums ofmoney on a treatmentthat BCOHTA claims issuspect.

Another indication that Office analysts do not have a firm grasp on autism
issues is exemplified by their implicit, and perplexing, rejection of the Autism
Spectrum Disorder classification.
BCOHTA states:
For example, there may be significant problems associatedwith labeling children specifically with a diagnosis of autism,as opposed to other pervasive development disorders.
Children so labeled may have preferential service accessnot available to those with other diagnoses, thereby raisingpotential for an exaggerated incidence of autism diagnosis(see 1.6 below) [The Autism Action Plan].”15
The BCOHTA apparently does not wish to acknowledge that children with
pervasive developmental disorder not otherwise specified (PDD-NOS) needtherapy in the same manner as do children with so called “full-blown” autism.
Lovaas treatment is vital for a range of children on the autism spectrum, notjust children with classic autism.

Are Generic Supports Effective for Autism?
Office analysts appear to support the provision of generic supports forchildren with autism. However, they fail to provide any research evidence
from the literature to support the claim that generic special needs services
93Chapter 5: BCOHTA and Provincial Policy

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

However, it is unfair and unjustified to suggest that parents are so naive as tosolely base treatment strategy for their children on mass media information.
There are many other opinions parents consider before taking such animportant decision. In particular, they consider the professional opinionsof psychiatrists, psychologists and pediatricians. Interestingly, while the
BCOHTA report refers to media reports, it does not discuss the impact of court
decisions granting parents the right to publicly funded Lovaas Treatment.

action, but the same scientific evidence is inadequate toprovide any guidance on how to proceed.21
The BCOHTA further states:

To suggest thatthe professional
community ofmental health anddevelopmental
clinicians has failed
to “see the light”
concerning Lovaas
Treatment, shows
striking evidence ofintellectual elitism
amongst a selfanointed cadre ofsocial engineers.

Because of the major methodological flaws, however,the findings of these researchers cannot be regarded asconclusive. Rather, their contribution might have been
expected to fuel further hypothesis generation. While
this has occurred to some degree, the work has not been
sufficient to bring the science to what might be described
as an authoritative level.22
Yet, the BCOHTA report also appears to embrace measures insignificant to
autism treatment. For example, it relies on parental satisfaction as a relevantmeasure for the Jocelyn study.
In connection with this study, BCOHTA analysts state:
Effectiveness need not be measured in terms of measurable
changes on rigorously administered IQ tests. Equally valid
are a whole range of effects including parent involvement,satisfaction and quality of life23 (emphasis added).
In other words, if parents are satisfied with an intervention but no quantifiableimprovement shows in the child’s condition, that is valid outcome for the
BCOHTA.
Further inconsistency in evaluation standards, in terms of research efficacy,
is demonstrated by the ever changing standards of evaluation. An example
is the Report’s recommendation of treatment programs reviewed by Dawson
and Osterling (aside from the Lovaas’ study). The BCOHTA-recommended
programs a) have much less rigorous standards relative to the Lovaas study
design and protocol, and b) simply do not exist in British Columbia.

Instead, the BCOHTA maintains a remarkably elitist stance:

According to Officeanalysts, if parents
are satisfied withan intervention
but no quantifiableimprovementshows in the child’s
condition, that is
valid outcome for
BCOHTA researchers.

Perhaps the most striking feature of the published literatureon the treatment of autism is its power, on so small a basis inevidence to sway a section of the professional community,
parents and payment agencies toward the Lovaas formof therapy. Seldom can so much importance have been
assigned to such extraordinary effectiveness claims fromsuch a small, quasi-experimental study uncorroborated
through independent research.19
This paragraph is entirely consistent with the provincial policy in that itsupports the view that Lovaas Treatment is “experimental.” The BCOHTA goes
further to imply that psychiatrists, pediatricians and psychologists are simply
not as well informed as BCOHTA researchers because these professionals
have been swayed by Lovaas’ research.20
Put simply, in producing advocacy research in the context of litigation,
BCOHTA researchers have attempted to:1) discredit the science behind decades of Dr. Lovaas’ research,
2) discount the exhaustive review and analysis of the New York State
Department of Health Report on “best practices,” and3) strategically exclude the U.S. Surgeon General’s Report on Mental
Health from their purportedly “exhaustive” literature search.

Lovaas Labelled as Experimental
The BCOHTA concluded that Lovaas is “experimental.” The BCOHTA states:
A scientific claim of effectiveness is being used to force

94

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Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

BCOHTA analysts state:
Based on expert opinion and survey results they identify
several key elements shared by all “nationally known models
or programs” as “earliest possible start to intervention;individualization of services for children and families;
systematic playful teaching, specialized curriculum; intensityof engagement; and family involvement.24

What BCOHTA
researchers exclude
from their analysis
is that of the eightprograms reviewed
by Dawson andOsterling, three
are intensive
behaviouralintervention
programs.

However, reliance on Dawson and Osterling (1997) is problematic. Most of
the programs Dawson and Osterling review do not meet the NIH criteria uponwhich Office analysts base their analysis of Lovaas. Dawson and Osterlingfind that the early intervention program with the best results from one of themost rigorously designed and implemented program, is the Lovaas Autism
Treatment protocol. None of the other treatment programs reviewed by
Dawson and Osterling have experimental and control groups; nor do theyuse comparable, rigorous outcome measures as used by Lovaas. Yet, theBCOHTA apparently perceive no conflict in accepting features which the
majority of the Dawson and Osterling (1997) programs seem to share.
The BCOHTA researchers state:
Ultimately, new programs may contain many of the featuresof US programs described by Dawson and Osterling. Theynote that regardless of divergent philosophies of therapy,
eight independent programs have developed around acommon model of early, intensive therapy for children
with autism, which include parental involvement. These‘elements of effective programs’ were further defined anddescribed in a prospective study, funded by the Officeof Special Education, U.S. Department of Education.25(emphasis added).
What BCOHTA researchers exclude from their analysis is that of the eightprograms reviewed by Dawson and Osterling, three are intensive behaviouralintervention programs: the UCLA Young Autism Project, the Princeton Child
Development Institute, and the Douglas Developmental Center. However,of particular significance to children with autism in British Columbia is thefact that, at the time of the report, there was no provincial funding for any

96

Chapter 6: Clinicians vs. Health Technocrats: In defense of the N.Y. Department of Health Report

Chapter 6
Cliniciansvs.HealthPolicy
Technocrats: In Defenceof the New York
Department of Health
In This Chapter
BCOHTA’s SelectiveAnalysis of the New York StateAutism R eport
Natural Competitors? Health TechnolgyAssessment vs. Clinical Guidelines97

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

Chapter 6: Clinicians vs. Health Technocrats: In defense of the N.Y. Department of Health Report

Although B.C. Office of Health Technology Assessment researchers lacktraining and education in psychology, psychiatry or autism treatment, they
nonetheless appear to believe they have academic competence to discountthe collective opinion of the community of mental health professionals.
These clinicians are charged with the task to contend with the severe, chronic
developmental disorder of autism, which results in significant lifelong
disability.

far beyond what that evidence will support.2
This section addresses the BCOHTA criticisms regarding the New York Reportand relationship of the BCOHTA to the Clinical Guideline Movement.

Selective Analysis of the New York Autism Report

The BCOHTA appear
to believe they
have academic
competence
to discount thecollective opinionof the communityof mental healthprofessionals.

The New York State Department of Health report is academically rigorous andstrictly adheres to science-based evaluation of all major autism treatment
options. Despite this, Office analysts describe the New York report as
uncritical in its evaluation of autism treatments.
BCOHTA analysts state:
Shortcomings of planning decisions made on this basis are
exemplified by the New York State Department of Health,Clinical Practice Guidelines, which show how readily thedilemma may be worsened by a consensus process that
uncritically applies effectiveness claims.3
Researchers and academics who authored the New York report did, in fact,
use an evidence-based scientific process. A panel of sixty-two (62) peer
reviewers, who are experts in autism, were enlisted to ensure an objective
and meaningful analysis of current autism treatments. In marked contrast
to the report presented in B.C. Supreme Court by BCOHTA analysts, the New
York Report is not a product of a closed-door, court-based process. Unlike
the BCOHTA analysis, the New York Report was produced in a transparent
fashion, according to recognized principles of clinical practice guidelines
development. A large number of experts in the field of autism oversaw thisreport.
Authors of the New York Report state:This guideline was developed by an independent
multidisciplinary panel convened by the New York
Department of Health (DOH) under the direction of the Early
Intervention Program. The panel employed a systematic
process to review the scientific evidence, where evidence was98

In marked contrast to
the report presented
in B.C. Supreme Court
by BCOHTA analysts,
the New York Report
is not a product of aclosed-door, courtbased process.

The growing consensus in the community of professionals referenced aboveis that intensive behavioural intervention based on the work of psychologist
O.I. Lovaas currently constitutes “best practice” in the treatment of Autism
Spectrum Disorder. Prominent examples of this consensus amongst experts
and professionals are:1) the report issued by the New York State Department of Health on
autism clinical practice guidelines;2) the Mental Health report of the U.S. Surgeon General, and
3) in British Columbia, Canada, Sixty-Three Licensed Psychiatrists
have formally endorsed Lovaas Treatment as medically necessary.
However, despite the depth and breadth of education, expertise andexperience of clinicians in the management and treatment of autism, Officeanalysts severely discount the collective opinion of clinicians regarding theeffectiveness of Lovaas Treatment as a “best practice” autism treatment.
BCOHTA states:
Perhaps the most striking feature of the published literatureon the treatment of autism is its power, on so small a basis inevidence, to sway a section of the professional community...1
The BCOHTA Report goes on to discount the New York report and the general
concept of clinical guidelines:
This is not to direct particular criticism at the NY Clinical
Practice Guidelines. In fact, they are similar to mostguidelines developed by clinical experts, in that while
acknowledging the limitations of the clinical effectivenessevidence, they tend to make recommendations that extend

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Chapter 6: Clinicians vs. Health Technocrats: In defense of the N.Y. Department of Health Reportavailable, and combined this with expert clinical judgment
to develop evidence-based guideline recommendations on
assessment and intervention of young children with autism4(emphasis added).

BCOHTA then stated:
To review and evaluate the process used in developing
clinical practice guidelines, and to determine the extent
to which the guidelines were “evidence-based”, BCOHTA
used a set of 15 appraisal criteria derived from work doneby the Institute of Medicine and the Agency for Health Care
Policy and Research. comprehensive list of these criteria ispresented in Table 1.8
The New York reportrelied upon themethodology usedby the Agency of
Health Care Policy
and Research(AHCPR), a research
protocol otherwise
embraced by the
BCOHTA.

Natural Competitors? Health Technology Assessments
versus Clinical Guidelines
Although Office analysts have used clinical guidelines in the past, i.e., forcholesterol screening, the BCOHTA severely discounts the general conceptof clinical practice guidelines:...unsubstantiated extrapolation from limited clinicaleffectiveness evidence is the major drawback of the clinicalpractice guideline movement.9
BCOHTA researchers level general criticism at the New York Report for its
reliance upon research the BCOHTA claims is “quasi-experimental,” However,the BCOHTA fails to do a systematic review of the process used to develop
the New York Report. This is in marked contrast to the systematic BCOHTA
review (1997) of cholesterol testing clinical practice guidelines.
The “...15 appraisal criteria derived from work done by the Institute of Medicine
and the Agency for Health Care Policy,” were conspicuously not used by the
BCOHTA to evaluate the New York report. If the evaluation were applied to
the New York Clinical Guidelines, the Guidelines would have rated highly.
Following are BCOHTA evaluation criteria for Clinical Guidelines reproduced
from the BCOHTA appraisal of cholesterol testing clinical guidelines. In thecontext of the New York Report on clinical practice guidelines for autism,
BCOHTA neglected to use its very own clinical assessment guidelines, even100

The New York Report further states:

The BCOHTA
selectively uses
Clinical Guidelines
when it is convenient,but discounts
the entire clinicalguideline movement
when it hurts theirargument.

The key elements of the guideline development approachselected by the DOH include: a. Using a scientific process thatis evidence-based, b. Ensuring a multidisciplinary approach,c. Developing a guideline that is valid, objective, and credible5(emphasis added).
The New York report relied upon a standard methodology for developing
clinical practice guidelines, namely the methodology used by the Agency
of Health Care Policy and Research (AHCPR), a research protocol otherwise
embraced by the BCOHTA.
According to the New York Report:
The AHCPR guideline methodology was derived fromthe work of many experts in health services research andincorporated the principles for developing high-quality
practice guidelines set forth by the U.S. Institute of Medicine(1992)... Many health services researchers consider the
AHCPR methodology to be the standard for developing
evidence-based clinical practice guidelines.6
In 1997, the BCOHTA conducted a systematic review of several clinicalpractice guidelines for the testing of cholesterol, entitled, “Supporting Clinical
Practice Guidelines Development: An appraisal of existing cholesterol testing
guidelines.7 In this work, BCOHTA researchers used criteria derived fromexactly the same AHCPR methodology employed by the New York State
Department of Health in development of their autism treatment clinicalguidelines.

101

Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

102

Chapter 6: Clinicians vs. Health Technocrats: In defense of the N.Y. Department of Health Report103Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

104

Chapter 7: Academic Rivalry in the field of Autism Research

Chapter 7
Academic Rivalry in the
Field of Autism Research
In This Chapter
Dr. Sally Rogers
Drs. Schopler andMesibov
BCOHTA R eliance on Dr. Gresham

105

Chapter 7: Academic Rivalry in the field of Autism ResearchPart I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

From the considerable number of academics in the field of autism researchand treatment, the BCOHTA selected literature from a minority who are
critical of research conducted by Lovaas. The views of comparatively proLovaas or neutral researchers that were included in the report were cited
selectively to leave the impression that they were critical of Lovaas’ work. In
this section, the background and area of research of these BCOHTA selected
academics is discussed.

cognitive and language gains than expected by maturation
alone was supported.2
However, this finding is not as impressive as outcomes reported by Lovaas.
Rogers’ analysis and critique of Lovaas’ research is more balanced then as
presented by the Report.

Drs. Schopler and Mesibov
Dr. Rogers considers
Lovaas’ design the“strongest scientificdesign” even incomparison to her
own study.

Schopler and Mesibov are two researchers affiliated with a program
called Treatment and Education of Autistic and Related Communication
Handicapped Children (TEACCH). Ozonoff and Cathcart (whose home-based
TEACCH program was evaluated by the BCOHTA researchers) describe thehistory of the TEACCH program:
In 1966, a treatment program for individuals with autism wasestablished at the University of North Carolina (Schopler &Reichler, 1971). This program was focused on the Treatment
and Education of Autistic and related Communication
handicapped Children and has come to be known by its
acronym, Division TEACCH. In the 1960s, there were anumber of ways in which this program was highly novel.3
Schopler was largely responsible for establishing North Carolina’s modelfor teaching autistic children (Schopler, 1987). At the time, his ideas wereconsidered revolutionary and were adopted by school districts all over theUnited States. Lovaas’ protocol was still being developed. With the growing
popularity of Lovaas’ protocol amongst both the professional community
and with parents, the TEACCH methodology began to lose favour with many
parents and professionals. Despite the lack of support for TEACCH amongst
many parents and professionals, overall, school districts still want to continue
with the TEACCH methodology, because, compared to the Lovaas protocol,
it is comparatively inexpensive to implement. Likely as a result of school
districts’ affinity for TEACCH, there has been a marked trend toward legal
action against U.S. school districts by parents attempting to access Lovaas
treatment for their children, because many view it as a superior, althoughmore costly, intervention. In general, when school districts have pitted their

106

Dr. Sally Rogers
In general, whenschool districts have
pitted their TEACCH
programs against
the Lovaas protocol
desired by parents,
many courts haveruled in favor of the
Lovaas method.

BCOHTA researchers portray Dr. Rogers as very critical of Lovaas’ work.
The treatment philosophy that has guided Rogers’ model (primarily
developmental) is very different to Lovaas’ work (largely behavioral); however,her comments have been taken out of context in the Office report.
Rogers conducted a systematic review of all comprehensive treatment
programs for children with autism and selected eight studies which shethen reviewed. Four of the eight studies were Lovaas’ studies or replications,and two of the studies were behavioral, relying on a variety of behavioral
techniques including discrete-trial-training. Dr. Rogers considers Lovaas’
design the “strongest scientific design” even in comparison to her own study.
Rogers’ research is philosophically very different to Lovaas’ work. Rogers
describes her model as follows:
The model was developmentally based and heavily
influenced by Piaget’s theory of cognitive development,
pragmatics theory of language development, and Mahler’s
theory of development of interpersonal relationships.1
Rogers’ study compares the progress of a group of children with autism or
related disorders to a group of children with other emotional/behavioral
and developmental disorders. Significantly, Rogers’ study does not use adesign with a randomly assigned experimental and control group; rather,
this design has no control group since both groups of children receive thesame treatment. Her results are not as promising as the results reported by
Lovaas; however, they are positive. Roger et al. report:... first hypothesis that both groups would make greater107Chapter 7: Academic Rivalry in the field of Autism ResearchPart I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

TEACCH programs against the Lovaas protocol desired by parents, many
courts have ruled in favor of the Lovaas method. In 1998, Schopler publishedan advocacy piece urging parents to avoid the use of the courts.

In his 1999 article, Gresham reviews most of the same programs as does
Rogers, but makes no conclusion as to which study has the best design. He
attacks Lovaas’ study more strongly than the others; however, his conclusions
are similar. According to Gresham, none of the comprehensive autism
treatment programs he reviews meet National Institute of Health standards.

Schopler states:

Gresham states:

It is noteworthy thatthe BCOHTA does
not always disclose
its reliance on Dr.
Gresham’s work.

We note that school psychologists have been and might beasked to testify in fair hearings called by parents requestingcertain treatment programs for their children with autism.
Almost exclusively in recent years, these fair hearings havebeen called by parents requesting a “Lovaas-type program”
or, more specifically, 40 hours of in-home discrete trial
training. Unfortunately, parents, fair hearing officers, and/or administrative law judges are often unable to analyze
critically the strength of research supporting these programs.
It is clear that school districts cannot rely on all persons
to use fundamental logic of research methodology andexperimental validity to evaluate the efficacy or effectivenessof treatment programs for autism.6
Gresham makes it quite clear that he disagrees with the judiciary’s rulings on
public spending for Lovaas Treatment. His concerns appear related to theimpact of court rulings on government special needs expenditures.
Gresham states:
The stakes are high as these exchanges are not mere
academic exercises; rather, families of children with autism
deserve critical analysis as do taxpayers who will be asked
to finance the estimated $60,000 per child per year andother school children receiving special education andgeneral education services as limited financial resources
are frequently diverted into attorney’s fees and high costprograms such as EIP.7
Gresham further expresses his outrage regarding parents asserting the rightsof their children to receive Lovaas Treatment:

108

Gresham further
expresses his outrage
regarding parents
asserting the rightsof their children
to receive Lovaas
Treatment.

There are considerable negative consequences to having
research claims judged in the courts. Individual children may
be denied the most appropriate intervention, other than the
Lovaas method. An adversarial and distrustful environmentis created, loss of public credibility for professionals isincreased, a backlash against special needs programs is
encouraged...4
Schopler further states:
I can understand why some parents may choose to try the
Lovaas method, but at this time, in the interests of theirchildren, I urge them to oppose it as social policy in the formof entitlement under IDEA, Part H.5
Schopler’s position regarding parents’ attempts to access Lovaas Treatment
through the Individuals with Disabilities Education Act is understandable,
insofar as the comparably more popular Lovaas protocol could supplant
Schopler and Mesibov’s TEACCH protocol. The BCOHTA presents the views ofSchopler and Mesibov without informing the reader that, potentially, theseacademics have something to lose in the TEACCH versus Lovaas competition.

BCOHTA Reliance on Dr. Gresham
The BCOHTA analysts relied extensively on Dr. Gresham’s 1999 article tosupport their own analysis of Lovaas’ research. This may not be surprising
given that Dr. Gresham is a well known critic of Dr. Lovaas. However, it isnoteworthy that the BCOHTA does not always disclose this reliance on Dr.
Gresham’s work. Indeed, Gresham et al. (1999) is not even included among
the BCOHTA references (refer to the last page of Chapter 7 for a comparisonof the Gresham and BCOHTA papers).

109Chapter 7: Academic Rivalry in the field of Autism ResearchPart I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

B COHTA’s uncredited us e of the G res ham et al. publication (1999): side-by-side comparison

B COHTA’s L ovaas R eport (2000)
for the Auton Cas e

110

The G res ham et al. pa per on
autis m treatment (1999)

Gresham’s justification of resource allocation argument is echoed by BCOHTA.
It appears as if the rationing of health care for children with autism is notconfined to the BCOHTA alone.

This graphic represents ananalysis that reveals off-the-books‘borrowing of others’ academic work.
It shows BCOHTA’s use of Gresham
et al. (1999) in the production of the
BCOHTA Lovaas Treatment reportfor government’s defense in B.C.
Supreme Court. Noteworthy is thatof the many articles BCOHTA cites
as references in it’s “exhaustive”
review of the literature, Gresham’s
anti-Lovaas publication-a work relied
upon heavily by the Office-is the one
paper conspiciously omitted fronm
the bibliography of the BCOHTA
Lovaas Treatment report.

• National Institutes of Health (NIH ) C riteria• Division 12 T ask F orce on E mpirically Supported
T reatments (APA)• UCL A Young Autism Project (YAP) and R elated Studies• Methodological analysis of the YAP• Project T EAC CH• E mpirical evaluation of T E AC C H• Summary• T he L E AP Program• E mpirical evaluation of LE AP• Applied Behavior Analysis Programs• Denver Health Sciences Program• C ontroversial Treatments Having Little or No E mpirical
SupportIn these times of precious economic resources for education,
the “added benefit” of the Lovaas program, given the highcost, should be examined.9

Evidence of BCOHTA’s uncredited useof the Gresham et al. paper on Lovaas
Autism Treatment:

1. Background
2. Methods
2.2 C ritical appraisal of study methods (use of NIH
criteria)
3. Search Findings
4. C ritical appr aisal of L ovaas et al (including related
studies)
5. C ritical appr aisal of Other Primary Studies
5.3 O zonoff and C athcart (1998) (use of NIH
criteria for T E AC C H home-based program)
6. Discussion
6.4 Does the evidence point the way forward?
• a discussion of APA, Task F orce on
Psychological Intervention G uidelines• a discussion on common ‘elements ofeffective pr ograms’ (Dawson and Osterling 1997)
7. Conclusions

Gresham further states:- C onclusions R egarding Interventions for Autism• C ommon E lements of C omprehensive Treatment
Programs (Dawson and Osterling 1997)- Recommendations for Future Research and Practice

An analysis by Feinberg and Beyer (1997) indicated that the
number of so-called “Lovaas disputes” more than doubled in
1996 and that attorneys expect even more litigation in the
coming years. If anything positive has accrued from thesedisputes it only may be the gainful employment of attorneys
who appear more than willing to take these cases to fairhearings and/or the courts.8

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Part I: BCOHTA’s Attempt to Discredit Lovaas Autism Treatment

112Chapter 8: B.C. Supreme Court’s Landmark RulingPart II
What Happened in theSupreme Court of British
Columbia
Chapters in Part II

8 B.C. Supreme Court’s L andmark Ruling
9 BCOHTA On the Stand

113

Part II: What Happened in the Supreme Court of British Columbia?

Chapter 8: B.C. Supreme Court’s Landmark Ruling

Chapter 8Part II reports on what happened in the Supreme Court of British Columbia during
the landmark Auton case (Auton et al. v. the Attorney General et al.). Specifically,a discussion of the Judge’s ruling regarding the case and the role of the British
Columbia Office of Health Technology Assessment’s Lovaas report is presented here.
Significantly, testimony given during a cross-examination of the lead author of the
BCOHTA report, Dr. Ken Bassett, is discussed, as well as how this BCOHTA testimony
supports the analysis of the BCOHTA report presented in Part I.
Once again, using a thematic approach, this section ties in information from BCOHTA
cross-examination in the court case and serves as further evidence supporting theallegation that the BCOHTA engaged in agenda-based research to support the B.C.
Government effort to discredit Lovaas Autism Treatment as “experimental.”

114

B.C. Supreme Court’s
Landmark Ruling
In This Chapter
Highlights of Justice Allan’s Judgment onAutism Treatment

115

Part II: What Happened in the Supreme Court of British Columbia?

Chapter 8: B.C. Supreme Court’s Landmark Ruling

Highlights of Justice Allan’s Judgment on Autism
Treatment

In paragraphs 134 and 135, the Judgment rejected government’s argumentthat children with autism are already part of the health care system because,
for example, if an autistic child were afflicted with cancer, Medicare would
cover the cost of cancer treatment.

“On the basis of theexpert evidence
introduced by bothparties, I find thatearly intensive
behavioural
treatment is a
medically necessary
service.

The petitioners
are the victims
of... directdiscrimination.”[134] ... the Crown submits that if an autistic child gets cancer,
he or she will receive treatment for cancer. That justification
is misguided as well as unfortunate. It ignores the fact that
autism is a medical disability just as cancer is and that both
require treatment. As the petitioners point out, autism
is a disability so severe and comprehensive that it affects
all aspects of their lives. They require treatment for thatcondition, as well as any other conditions that they may be
unfortunate enough to incur additionally3 (emphasis added).
[135] Autism is the disorder or illness that requires treatment.
It is of little assistance to reassure people suffering fromdebilitating illnesses that although the state will not provide
treatment for that illness, should they break a leg or develop
pneumonia, they will be treated for those conditions.
While one of the effects of autism may be an inability tocommunicate and obtain government services which areuniversally available, the gravamen of the government’somission is its failure to provide treatment for the underlying
disability, not its willingness to ensure access to otherbenefits 4 (emphasis added).
What is highly significant here ­— and should be very disturbing to the
Health Technology Movement along with universities that host them — isthat Justice Allan ruled that the BCOHTA report is obviously biased and ofminimal value, in support of the government’s defence against the families’
legal action. Despite their best efforts to support the B.C. Government andits Ministry of Health in court, researchers at the BCOHTA failed to persuade
the B.C. Supreme Court that their health technology research is the impartial,
disinterested work of university academics.
[41] Dr. Bassett is a Senior Medical Consultant with the B.C.
Office of Health Technology Assessment Centre for HealthServices and Policy Research (“BCOHTA”) at U.B.C. BCOHTA

116

At the end of the day, what really happened in the B.C. Supreme Court autism
case? The July 2000 ruling constitutes a condemnation of the government’s
failure to meet its constitutional obligation to ensure equal access togovernment services, in this case health care for children with autism.
Specifically, the court declared that Early Intensive Behavioral Treatment isa “medically necessary” service that must be funded by government. Justice
Allan states:“...autism is a medical
disability just as
cancer is and both
require treatment.”[102] The Crown’s narrow definition of a “medically necessary
service” as one that must be provided by a health carepractitioner presently scheduled by the MSC precludes
delivery of Lovaas Autism Treatment or ABA or any intensive
behavioural therapy as a benefit. However, as Dr. Baersuggests, a more accurate definition of medical treatment
is whatever cures or ameliorates illness. On the basis of theexpert evidence introduced by both parties, I find that early
intensive behavioural treatment is a medically necessary
service1 (emphasis added).
In addition, the court ruled that the government is in violation of theconstitutional rights of autistic children by not providing medically necessary
treatment for their condition. The judge went further to rule that this breachis direct discrimination as defined by the Canadian Charter of Rights andFreedoms. Justice Allan goes on to state in the ruling:[132] In my opinion, there is no need to consider adverse
effects discrimination. The petitioners are the victims ofthe government’s failure to accommodate them by failingto provide treatment to ameliorate their mental disability.
That failure constitutes direct discrimination. Further,
the petitioners’ disadvantaged position stems from thegovernment’s failure to provide effective health treatment
to them, not from the fact that their autistic condition
is characterized, in part, by an inability to communicate
effectively or at all2 (emphasis added).

117

Part II: What Happened in the Supreme Court of British Columbia?

Chapter 8: B.C. Supreme Court’s Landmark Rulingis funded by the Provincial Government for the purpose of“promoting and encouraging the use of assessment researchin policy, planning and utilization decisions by government,
health care executives and practitioners.” BCHOTA [sic]was asked by the Crown to provide “an assessment of theeffectiveness evidence” regarding Lovaas Autism Treatment
for pre-school children with autism5 (emphasis added).

[43] Dr. Bassett and his colleagues did not consult withany psychiatrists or clinicians who are known to support
Lovaas Autism Treatment. They spoke with only one external
medical consultant, Dr. Miller, who commented that theincidence of autism might appear higher than it actuallyis because of a tendency to label a child with autism or
ASD to obtain access to services. On the basis of that single
anecdotal comment, the BCHOTA [sic] Report states:“The Supreme Court
noted that the
BCOHTA attempted
to “pass off” its reportas having beenexternally reviewed
and completed forsubmission to thecourt when, in fact, it
was not.”“A more recent problem has emerged inrelation to estimates of the incidence ofautism. It appears that, at least in the BC
context, problems with the diagnosis ofautism may not simply be due to problems
in the application of validated diagnostic
criteria. The possibility arises that children
with other pervasive development disorders
may nonetheless be diagnosed with autism
in order to gain access to services linked tothat diagnosis”7 (emphasis added).
It should be disturbing to health technology professionals in Canada, theU.S. and beyond, that so serious an allegation can be leveled against parents
based on so little.
In paragraphs 44 and 45, the B.C. Supreme Court makes the point that the
BCOHTA’s agenda of evaluating whether Lovaas Treatment “cures” autism
was simply their own agenda, insofar as the researchers involved in Lovaas’autism treatment research have never made a curative claim in the decadesof research that have gone into developing the uniquely effective treatment
protocol.
[44] The Executive Summary of the BCOHTA Report begins
with the following statement:“This systematic review examined whether
early intensive behavioural therapy for118“Dr. Bassett andhis colleagues did
not consult withany psychiatrists or
clinicians who are
known to support
Lovaas Autism
Treatment.”

In the paragraph below, the Supreme Court noted that the BCOHTA
attempted to “pass off” its report as having been externally reviewed andcompleted for submission to the court when, in fact, it was not. In truth,
only one external reviewer had offered comments to that point and he is agovernment employee. Clearly this attempt to mislead was not lost upon
Justice Allan:[42] Drs. Bassett, Green, and Kasanjian prepared the report
entitled “autism and Lovaas treatment: A systematic review
of effectiveness evidence” (the “BCOHTA Report”). The
foreword to that report describes the methodology utilizedin BCOHTA projects generally. It states that “reports arereviewed internally, and then sent for external review toexperts from a variety of academic or clinical disciplines.
Comments and suggestions are considered before a final
document is produced.” That statement clearly implies thatthe BCOHTA Report, which was prepared for the purpose ofthis litigation, was subjected to external peer review before
it was filed as an exhibit in these proceedings. However,Dr. Bassett testified that, as at the date of the hearing, theBCOHTA Report was out for external review and only one
response had been received. He described the BCOHTA
Report as the final document for these proceedings but
not the final document for the purpose of publication 6(emphasis added).
Significantly, in paragraph 43 of the Auton ruling, Justice Allan noted that the“external review” process is not itself without bias since the BCOHTA elected
to forgo consulting with any professionals who had favourable opinions
regarding the work of Dr. Lovaas or the UCLA treatment protocol in general.

119Part II: What Happened in the Supreme Court of British Columbia?

Chapter 8: B.C. Supreme Court’s Landmark Rulingchildren with autism results in normal
functioning, or essentially a cure. The
scientific validity of this curative claim iscentral both to legal proceedings brought
on behalf of several children in British
Columbia against the Province seeking an
intensive behavioural program; and to costbenefit analyses and clinical guidelines used
for planning autism treatment programs.”8“The BCOHTA
Report reiterates
that Drs. Lovaas
and McEachin claimthat their treatment“normalized or
cured children with
autism.” As noted
earlier, neither
Dr. Lovaas nor Dr.
McEachin - nor thepetitioners - assert
such a claim.”

The B.C. Supreme court explicitly nullifies the central assumption that
constitutes the foundation of the BCOHTA Lovaas report:[45] The BCHOTA Report reiterates that Drs. Lovaas andMcEachin claim that their treatment “normalized or cured
children with autism.” As noted earlier, neither Dr. Lovaas nor
Dr. McEachin — nor the petitioners — assert such a claim 9(emphasis added).
Significantly, the Supreme Court rejected the government’s argument that
Lovaas selectively chose only “best case” scenario children. The lead authorof the BCOHTA report could not provide the court with any suggestions as tohow a researcher would be able to select children in this manner. Moreover,an expert witness testified that this would be a very difficult exercise.
[46] The BCOHTA Report criticizes the Lovaas study because
it used a small number of children and further suggests thatthe reported findings of benefits may have been achievedby assembling a high-functioning group of autistic children.
Dr. Bassett was unable to suggest how one would assemble
a high functioning group and agreed, in cross-examination,that he was unaware of any evidence to contradict Dr. Baer’s
opinion that such a selection could not be made.10
In paragraph 47, the court dismissed the entire BCOHTA Report byacknowledging its lack of value in shedding any light on this academic
debate.

120[47] While the BCHOTA [sic] Report criticizes the methodologyof the Lovaas and McEachin studies and the absence ofreplication at length, it adds little if anything to the existing
debate in the scientific journals on the subject.11
British Columbia’s Supreme Court discredited and rejected the entire
BCOHTA report on Lovaas effectiveness. Such wholesale dismissal of a
Health Technology report should be cause for great concern, since HealthTechnology analysts are relied upon to create health policy throughout theindustrialized world. However, that discussion is beyond the scope of thisbook. The court goes on to say,
“While the BCOHTA
Report criticizes themethodology of the
Lovaas and McEachin
studies and theabsence of replication
at length, it adds little
if anything to theexisting debate in thescientific journals on
the subject.”[48] The BCOHTA Report exhibits an obvious bias towards
supporting the Crown’s position in this litigation. That
detracts significantly from its usefulness12 (emphasis added).
[49] The BCOHTA Report does acknowledge the fact thatbehaviour therapy, or ABA, is accepted as a benefit tochildren with autism. Its authors agree that early intervention
with behavioural treatment can help to alleviate autistic
symptoms in many if not most autistic children. Dr. Bassetttestified that he was unaware of any government-funded
programme in B.C. that provided behavioural therapy.13
Although the BCOHTA report is a sophisticated example of “science forsale,” the B.C. Supreme Court Justice was not convinced by the report’s
presentation of “scientific evidence” underlying the efficacy of Lovaas-type
Autism Treatment, or “EIBI” or ABA (all synonymous). The court supported
families’ claims that the issue of Autism Treatment is one of health care andnot social services or education. Justice Allan states:[153] The infant petitioners suffer from a serious mental
disability for which effective treatment in the form of ABA
is available. The inability of the petitioners to access thattreatment is primarily an issue of health care, not education
or social services14 (emphasis added).
The judge further commented upon how the Ministry of Health could easily
incorporate autism treatment into its ministry if it chose to do so. The Justice121

Part II: What Happened in the Supreme Court of British Columbia?

“The BCOHTA
Report exhibits an
obvious bias towards
supporting the
Crown’s position inthis litigation. That
detracts significantly
from its usefulness.”

Allan states:[154] The Crown, and specifically the Ministry of Health,provides no effective treatment for the medical disability ofautism. The respondents’ argument that they are unable toprovide effective treatment for autism because of constraints
in the legislation governing medicare attempts to erect a
false barrier. Early intensive behavioral treatment could be
provided by MOH in one of two ways. MSC may determinethat behavioural therapy merits funding according to thecriteria set out under the Medical Services Plan and add
behavioural therapists to the scheduled list of health careproviders by regulation. Alternatively, MOH could pay forthe treatment through block funding as it has done to pay
for interpreters for the deaf to comply with the decision in
Eldridge, supra. It is for the Crown to determine the measures
it will take to comply with its constitutional obligations15(emphasis added).
In addition, Madame Justice Allan quoted Dr. Thomas Barnett [sic] who
described the involvement of the social services-based, Ministry of Children
and Families’ attempt to deliver qualified mental health care to children as
an abysmal failure and “an experiment gone wrong.”
The judge states:[58] Dr. Thomas Barnett, who is the child psychiatry
representative on the B.C. Psychiatric Association, described
the transfer of child and youth mental health programmes
from MOH to MCF in 1997 as “an expensive experiment gonewrong.” At the community level, he sees no benefits resulting
from the transfer, in large part because the individuals whomake policy within MCF and determine what services areavailable for autistic children lack training in psychiatry,
psychology or behavioural intervention”16 (emphasis added).
In terms of the government’s key expert witness, Dr. Frank Gresham, Justice
Allan states:

122

Chapter 8: B.C. Supreme Court’s Landmark Ruling“Early intensive
behavioral treatment
could be provided
by ... the Medical
Services Plan... [or]... through blockfunding as it hasdone to pay forinterpreters forthe deaf to comply
with the decision in
Eldridge, supra.”[52] Current research has established, with some certainty,
the efficacy of early intervention in assisting many children
to achieve significant social and educational gains. The
expert witnesses agree that the most effective behaviouraltherapies are those based on principles of ABA. There areno effective competing treatments. As Dr. Gresham stated,“there is no question that ABA is the treatment of choice forchildren presenting with autistic disorder based on over 35
years of research in the field.” He emphasized the fact that
although replication of the Lovaas study was necessary,treatment should not be delayed awaiting the outcome17(emphasis added).
[66] It is ironic that the very limited treatment services
provided by the Crown not only fail to meet the gold
standard of scientific methodology; they are positively
discredited by one of the Crown’s own expert witnesses.18
The B.C. Government, with its BCOHTA academic “hired guns”, was not able
to convince B.C. Supreme Court that Lovaas treatment is “experimental,”
and that children with autism are somehow already included in the healthcare system. Finally, for the first time in the history of this vexing disorder,
autism treatment has been declared by the courts as a “medically necessary”
service, as opposed to a social services support issue. The implication ofthis ruling is that responsibility for funding bona fide, science-based autism
treatment rests with the publicly funded Canadian Health Care system. In
practical terms, this means government has an obligation to fund autism
treatment in the same terms as physical illness. Most importantly, this means
all children must have access to effective autism treatment regardless ofability to pay. Although the “autism wars” are far from over, the battle in B.C.
Supreme Court was won.
How did the B.C. Supreme Court Judge arrive at a ruling that the British
Columbia Office of Health Technology Assessment report was an obviously
biased work that supports the governments position, thereby detracting
significantly from its usefulness? First, several expert witnesses provided
testimony opposing the BCOHTA report and its assertions. Second, thelead author, Dr. Ken Bassett, was required to defend the BCOHTA report in123Part II: What Happened in the Supreme Court of British Columbia?

124

Chapter 9: BCOHTA On the Stand

Chapter 9
BCOHTA On the Stand

In This Chapter
The Office of HealthTechnology Onthe StandBCOHTA’s Government L inks
BCOHTA Selected“Yes Men” for Autism Consultation
BCOHTA’s “Made for Court” AdvocacyAnalysis
BCOHTA Embraces UnsubstantiatedAutism Programs andResearch
Double Standard: L ovaas Studies Meet BCOHTA Criteriafor Attack
BCOHTA R eport Excludes R elevantArticles That Support Lovaas Treatment
Analysis of B COHTA Critique of Lovaas TreatmentR esearch
What HappenedAfter BCOHTA R eport RuledBiased?

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Part II: What Happened in the Supreme Court of British Columbia?

Chapter 9: BCOHTA On the StandThe Office of Health Technology On the Standat the request of government?”
Dr. Bassett:

Chapter 9 takes us into the court room, “front and center” at the crossexamination of BCOHTA head, Dr. Ken Bassett, before a B.C. Supreme Court
judge during the Auton hearings in February 2000. The chapter presents, insome detail, the back and forth of the cross-examination, pointing out thesignificance of each exchange between Dr. Bassett and the lawyer for thefamilies.

“Vulnerable? I think that this is a very uncomfortable role
for anyone to be in.”Academic Conflict of Interest?

Dr. Ken Bassett:“In fact, we’ve almost
lost our funding,I think, a coupleof times because
we developed andpublished reportsthat were contrary to
government policy.”

In the following excerpt, Dr. Bassett is asked to address the issue of conflictof interest. Specifically, at issue is the fact that the Government of British
Columbia, in an effort to defeat an autism lawsuit, commissioned a BCOHTA
study to support an argument that Lovaas Treatment is “experimental” andtherefore, not eligible for public health care funding.
Family Counsel:“ ... the B.C. Office of Health and Technology Assessment
receives significant funding from the provincial government;is that right?”
Dr. Bassett:“Yes.”
Family Counsel:“And the funding is provided through the — that is to the
B.C. Office of Health Technology Assessment — through theCentre for Health Sciences and Policy Research?”
Dr. Bassett:“Yes, that’s right.”
Family Counsel:“And that latter body in 1998, ‘99 was funded to the tune of$7,952,101 from the Ministry of Health?”126

BCOHTA’s Government Links
Family Counsel:“ ... the B.C. Officeof Health andTechnology
Assessment receives
significant funding
from the provincial
government; is thatright?”
Dr. Bassett:“Yes.”BCOHTA’s economic reliance on the provincial Ministry of Health has alreadybeen noted. This issue was canvassed in the B.C. court case.
Government Counsel:“Now, has BCOHTA ever produced a report that you consider
unfavourable to the position of the Ministry of Health?”
Dr. Bassett (Director of the BCOHTA):“Oh, most definitely. We’re considered the watch dogs
on evidence. And the use of claims of scientific validity
are problematic both by clinicians and by policy makers.
So we’ve almost as often been in a position to criticize
assumptions of scientific validity by government andgovernment policy makers as we have by clinicians who areuncomfortable with having the state of evidence clarified.
In fact, we’ve almost lost our funding, I think, a couple oftimes because we developed and published reports thatwere contrary to government policy. And it ended up, infact, as a news item and then the national news because it
was quite problematic” (emphasis added).
Government Counsel:“Now, do you feel vulnerable now when you produce a report127Part II: What Happened in the Supreme Court of British Columbia?

Chapter 9: BCOHTA On the Stand

Dr. Bassett:

Dr. Bassett:“I’m not sure of the exact amount. That would be for five
years. That sounds about right.”“That’s correct.”

Family Counsel:

The above exchange shows that in its Lovaas Treatment report, the BCOHTA,
was recruited in the context of litigation where the provincial government,
including the Ministry of Health, was alleged to be discriminating againstchildren with autism by failing to provide Lovaas Treatment.

“And then they, in turn, pass funding along to your group?”
Dr. Bassett:Family Counsel:“In fact, it wasn’t until
these proceedings
were begun thatyou were asked
to provide any
information at all to
the government; isthat right?”
Dr. Bassett:“That’s correct.”“Yes.”
Family Counsel:“Now, the Ministry of Health is one of the defendants in theseproceedings; you understand that?”
Dr. Bassett:“Yes.”
Family Counsel:“In fact, it wasn’t until these proceedings were begun thatyou were asked to provide any information at all to thegovernment; is that right?”
Dr. Bassett:“That’s correct.”
Family Counsel:“So, there was never any effort on the part of the Ministry of
Health or any other ministry of the provincial governmentof British Columbia to provide any assessment of Applied
Behavior Analysis therapy prior to your recent effort; is thatfair?”

128

University of British Columbia Ethics Guidelines
Family Counsel:“...Our grant goes tothe university and it isadministered throughthe university, where
we’re subject to theirrules of research,
conduct, ethicalbehavior.”

Family Counsel:“And is it fair to say that the B.C. Office of Health Technology
Assessment is in any way affiliated with the University of
British Columbia?”
Dr. Bassett:“We’re centered in the University of British Columbia. Our
grant goes to the university and it is administered throughthe university, where we’re subject to their rules of research,
conduct, ethical behavior.”
Family Counsel:“And, in fact, one of the University of British Columbia
policies is that groups such as yours are not to advocate forvested interests?”
Dr. Bassett:“True.”
Family Counsel:“You don’t see any vested interest in that your funding comesfrom one of the defendants in these proceedings?”
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Chapter 9: BCOHTA On the Stand

Dr. Bassett:

The fact that in this case the source of the conflict of interest is a provincial
government should not confer preferential immunity from the universities
ethics rules.

“Our funding comes to our office the same as any other partof the medical school, any other part of the university.”

No Expertise in Autism

Family Counsel:

It has already been argued that the BCOHTA researchers have no experience
with autism nor any expertise in its treatment. Nevertheless, despite a lackof knowledge and training in the field, the Office embarked on an analysisof the preeminent treatment protocol in the field of autism treatment.

“You don’t see it as a problem that you’re offering an opinion
where the interests of the Ministry of Health are at stake inthese proceedings?”
Family Counsel:“You wrote this forthis lawsuit, I thought
you told us?”Dr. Bassett:“The central question
is for the lawsuit.”

Dr. Bassett:“No.”
Family Counsel:“Isn’t that directly contrary to UBC policy?”
Dr. Bassett:“I don’t see how it would be.”Family Counsel:“You wrote this for this lawsuit, I thought you told us?”Dr. Bassett:“The central question is for the lawsuit.”
To comply with University of British Columbia ethics guidelines, Officeresearch must be disinterested. In other words, they are not permitted
to publish advocacy research for their source of funding. If it were a drug
company that funded the BCOHTA and that company were on trial, it would
be a clear breach of the university’s rules of research, conduct and ethicalbehavior for BCOHTA to issue a report in defense of that drug company.

130

Family Counsel:

Family Counsel:“You weren’t involved in research or treatment of autism?”“In fact, you’ve
never been involved
in research ortreatment of autism,
have you?”Dr. Bassett:

Dr. Bassett:Family Counsel:“Right.”“No.”“In fact, you’ve never been involved in research or treatmentof autism, have you?”Dr. Bassett:“Right.”
The matter went further.
Family Counsel:“Now, the merits of the various tests of psychosocial
development are not within the expertise of the B.C. Officeof Health Technology Assessment, are they?”
Dr. Bassett:“No, they are not.”131Part II: What Happened in the Supreme Court of British Columbia?

Chapter 9: BCOHTA On the StandBCOHTA Selected “Yes Men” for Autism Consultation

Family Counsel:

Counsel for the families also pointed out that an entire class of professionals
who support Lovaas therapy were not consulted by the BCOHTA.

“And the B.C. Office of Health Technology Assessment havenever undertaken any analysis of neurologic disorders?”

Family Counsel:

Dr. Bassett:“Did you consult with any of the 63 psychiatrists in theprovince who are on record of supporting Lovaas therapy,
even one of them?”“Not that I can remember.”[...]
Family Counsel:“And the B.C. Officeof Health Technology
Assessment havenever undertaken any
analysis of neurologic
disorders?”
Dr. Bassett:“Not that I canremember.”“Whenever there is a technical issue such as this in aparticular subfield like autism where someone such as Dr.
Lovaas and Drs. Gresham and McMillan are arguing overparticular characteristics and we cite the argument and wecite both sides of the argument as best we can...”Family Counsel:“And your researchers don’t have the training or wherewithal
to interpret the validity of that debate, or positions?”
Dr. Bassett:“In this particular incident to do with prorated mental age,
we thought it was inappropriate to raise this as a major issue
or to get involved in that debate.”
Here Dr. Bassett admits that his office thought it inappropriate to wade into
this issue; however, he contradicts this point by admitting that they did cite
the argument as best they could. It would appear that BCOHTA was only
too willing to highlight criticisms of Lovaas without providing equal space
to the responses.

Family Counsel:“Did you consult
with any of the 63
psychiatrists in theprovince who are on
record of supporting
Lovaas therapy, evenone of them?”
Dr. Bassett:“We haven’t consulted
with any psychiatrists.”

Dr. Bassett:“We haven’t consulted with any psychiatrists.”
Family Counsel:“Did you consult with any clinicians at all who are in favourof Lovaas therapy?”
Dr. Bassett:“We didn’t, no.”This omission is significant because in British Columbia, sixty-three (63)licensed psychiatrists signed a petition strongly endorsing Lovaas Treatment.
The petition follows:
I agree that Lovaas type behavioural autism treatment,a form of Applied Behavior Analysis, is a highly effective
treatment for children with autism and is the most effective
treatment currently available for this neurological condition.
Insofar as it significantly improves the condition of autistic
children, I am of the opinion that it is medically necessary
treatment that should be widely available upon diagnosis
and funded under the Provincial Medical Services Plan orby the Ministry of Health, or both. (Signed: Sixty-three (63)licensed BC psychiatrists; petition on file with FEAT of B.C.)
However, BCOHTA was prepared to rely on the opinion of Dr. Miller, a

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Chapter 9: BCOHTA On the Stand

pediatrician.

The BCOHTA attempts to garner legitimacy for its advocacy research by using
an “external review” process that substitutes for the rigorous peer review
process characteristic in the publication of academic papers. The process
the BCOHTA uses is questionable because it is the office itself that chooses
who should review its documents. In addition, in this case the two external
reviewers selected to review the BCOHTA Lovaas Report were themselves
employees of one Ministry defending itself in the Auton legal action ­— The
Ministry of Health.

Family Counsel:“If you look at page 3 of your paper, you say:

Family Counsel:“And you have been
critical of Dr. Lovaas,
who has done followup research, and said
it isn’t good enough,but you’re prepared
to rely on the say so,
untested, of Dr. Millerin this regard, areyou?”

A more recent problem has emerged in relation to estimatesof the incidence of autism. It appears that at least in the
B.C. context, problems with diagnosis of autism may notsimply be due to problems in the application of a validated
diagnostic criteria. The possibility arises that children withother pervasive development disorders may nonetheless bediagnosed with autism in order to gain access to the services
linked to that diagnosis.’
Now, That’s based on the say so of Dr. Miller alone?”Dr. Bassett:“Yes.”
Family Counsel:“And you have been critical of Dr. Lovaas, who has done
follow-up research, and said it isn’t good enough, but you’re
prepared to rely on the say so, untested, of Dr. Miller in thisregard, are you?”Dr. Bassett:“In the background section. We’re not making a substantive
claim based on this. We’re raising it as an issue and pointing
out the source... We only raise it as a possibility.”

The BCOHTA
attempts to garner
legitimacy for its
advocacy researchby using an “external
review” process that
substitutes for the
rigorous peer review
process characteristic
in the publication ofacademic papers.

Even more troubling is the fact that the BCOHTA did not complete even thislimited review process before submitting its report to the court. Commentsof their external reviewers had not all come back yet; however, the BCOHTA
report suggested the review process had been completed.
Family Counsel:“... in the fourth paragraph you say...:‘Reports are reviewed internally and then sent forexternal review to experts from a variety of academicof clinical disciplines.’
To whom was this report sent for external review?”
Dr. Bassett:“I can bring the list. It is out for external review right now.”
Family Counsel:“You haven’t got the results back?”
Dr. Bassett:“We have one result back.”

Questionable Academic Review Process

134

Family Counsel:

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Chapter 9: BCOHTA On the Stand“Well, do you think it is fair, Doctor, to suggest, as you havein this foreword, that there has been external review of yourreport when you have got one response back?”“Well, you only have one external review as comments,
don’t you?”Dr. Bassett:

Dr. Bassett:“One back, you. Counting Dr. Miller that would be two.”“This is the process that we go through.”

Family Counsel:

Family Counsel:

Family Counsel:“Well, do you think
it is fair, Doctor, tosuggest, as you havein this foreword,that there has beenexternal review ofyour report when
you have got one
response back?”“So it didn’t apply to this particular report; it is a process you
normally go through, but you didn’t go through in this case?”Dr. Bassett:“It is exactly what we’re going through right now.”
Family Counsel:“But you haven’t been through it, have you?”Dr. Bassett:

Dr. Bassett:“This is the processthat we go through.”“We had Dr. Miller review the draft prior to submission here
and it is now going through the exact process described
here.”
Family Counsel:“It hasn’t gone through the process yet?”
Dr. Bassett:“For publication, yes, that’s what it is going through.”
Family Counsel:

136“Well, who is the other one?”
Family Counsel:“Well, you only have
one external review
as comments, don’tyou?”
Dr. Bassett:“One back, you.
Counting Dr. Millerthat would be two.”Dr. Bassett:“I’ve got it here in the pile.”
Family Counsel:“Go ahead...”The Judge:“Excuse me, before you go on, is it safe to say this is not the
final document?”
Dr. Bassett:“This is the final document that we submitted but what weplan to do is publish because that’s our mandate, our office
is required to produce a report for publication, so the review
that’s going on now is the broader review for publication.”
The Judge:“But that’s — that isn’t suggested in the foreword. That isn’t
evident. It says,‘Comments and suggestions are considered
before a final document is produced.

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Part II: What Happened in the Supreme Court of British Columbia?

Chapter 9: BCOHTA On the StandDistribution of the report is provided by
the — from the office through inclusion ona mailing list. Reports are also available forpublic distribution.’

The BCOHTA Report sets up a “straw man” argument that Lovaas andcolleagues make a curative claim regarding the autism treatment method
they developed. The report then sets about knocking down the argument
as part of the effort to discredit the treatment protocol in court. In otherwords, the Office states that Dr. Lovaas claims to have cured autism, insteadof stating that Lovaas never made such a claim, but rather, that it is Lovaas’
academic rivals who incorrectly level the charge that Lovaas makes a curative
claim. The BCOHTA unquestionably adopted as their own, the straw manargument developed by critics of Lovaas Treatment.

It makes it sound as if this is the final report that is available
for public distribution.”
Dr. Bassett:

The Judge:“But that’s — that
isn’t suggested in theforeword. That isn’t
evident...
It makes it sound as if
this is the final reportthat is available forpublic distribution.”
Dr. Bassett:“I suspect the
problem is that thisexecutive — sorry,
this foreword is thestandard foreword for
all reports.”“I suspect the problem is that this executive — sorry, thisforeword is the standard foreword for all reports. And I
think in submitting this report to this judicial review, it was
put into this submission, and I think it is because we haven’t
submitted anything to a judicial review and it was difficult
to know how to do that in a timely way and still do our own
more formal review as described here. But I think that ismisleading.”

BCOHTA’s “Made for Court” Advocacy Analysis
Presented here is evidence that the authors of the BCOHTA Report choseto be very selective in the type of analysis done so that the work of Lovaas
and colleagues could be discredited in court as being an “experimental”
treatment for autism.
This section discusses the six major themes developed by the Office for theirselective analysis of Lovaas Autism Treatment: The Curative Claim, Targeting
only Lovaas Treatment for Evaluation, ABA Accepted Uncritically, Alternative
Autism Programs and Research Accepted Uncritically, Only Lovaas Studies“Acceptable”, Several Relevant Articles Excluded.

Family Counsel:
Family Counsel:“You start out at the top of this page saying:“You start ...:
‘This systematic
review examined
whether early
intensive behaviouraltherapy for children
with autism results innormal functioning or
essentially a cure.’
So you were looking
in this work to see if
Lovaas therapy cured
autism?”Dr. Bassett:“As defined by him,
yes, which is normal
functioning.”‘This systematic review examined whether early
intensive behavioural therapy for children with
autism results in normal functioning or essentiallya cure.’So you were looking in this work to see if Lovaas therapy
cured autism?”
Dr. Bassett:“As defined by him, yes, which is normal functioning.”
Family Counsel:“Does Dr. Lovaas ever presume to state that his therapycures autism?”
Dr. Bassett:“He states that it results in normal functioning.”

Curative Claim

138

Family Counsel:

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Chapter 9: BCOHTA On the Stand“When, pressed that’s what they argued, yes, that’s what Dr.
Lovaas and colleagues argued.”“Does he ever suggest anywhere that it is a cure for autism?”
Dr. Bassett:Family Counsel:“No, in fact I think he argues the opposite. I think he argues
that it can’t necessarily be seen as a cure. He says that it
results in what is normal — described as normal functioning
by classroom teachers or peers.”“What do you mean, ‘when pressed?’ They have neversuggested a cure, have they?”
Dr. Bassett:Family Counsel:
Family Counsel:“Well, Doctor, youhave deliberately
taken a pejorative anda very charged word
and incorporated it
into this executive
summary knowing fullwell that Dr. Lovaas
and his colleagues
deny ever making
such a statement,
haven’t you.”Dr. Bassett:“I don’t see it thatway.”

“Well, Doctor, you have deliberately taken a pejorative anda very charged word and incorporated it into this executive
summary knowing full well that Dr. Lovaas and his colleagues
deny ever making such a statement, haven’t you.”Dr. Bassett:“I don’t see it that way.”
Family Counsel:“Do they ever purport to offer a cure for autism?”
Dr. Bassett:“They do what I just said, they purport to result in childrenthat are considered to be normally functioning.”
Family Counsel:“You have read the literature and you know that they havespecifically said we’re not suggesting it is cured, don’t you?”Dr. Bassett:“When pressed, what I’m referring to is a debate that they’re
involved in the literature (sic).”

Family Counsel:“That’s when Dr.
Gresham —”Dr. Bassett:“Yes.”

Family Counsel:“That’s when Dr. Gresham...”Dr. Bassett:“Yes.”

Family Counsel:“— accused themof offering a cure,and they said we’ve
done no such thing.
That’s how it was
generated, wasn’t it?”

Family Counsel:“— accused them of offering a cure, and they said we’ve
done no such thing. That’s how it was generated, wasn’t it?”Dr. Bassett:

Dr. Bassett:“Exactly.”“Exactly.”[...]
Family Counsel:“Now, you don’t answer the question that you pose at page10, instead you say at page 44:‘the Lovaas et al. (1987) and McEachin (1993)
study, while methodologically stronger than

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Part II: What Happened in the Supreme Court of British Columbia?

Chapter 9: BCOHTA On the Standpublished reports of alternative therapies,
is inadequate to establish the degree towhich this form of therapy results in children
achieving normal functioning, however
defined.’validity of claims regarding improved overall outcome which
includes the normal functioning.”
Family Counsel:“All right. It includes normal functioning. The only answer
you offer is with respect to normal functioning as subset of
improved overall outcome, isn’t it?”That isn’t the question you asked for yourselves is it? It
doesn’t answer the question you asked, does it?”Dr. Bassett:Family Counsel:“Well, Doctor, you say
you’re looking to see
if there are improved
overall outcomes.
And then what you
answer is you’re notsatisfied there isnormal functioning.
Now, that’s a farstricter question thanyou posed?”
Dr. Bassett:“The two aresynonymous from ourresearch perspective.”“I think it directly answers it.”
Family Counsel:“Well, Doctor, you say you’re looking to see if there are
improved overall outcomes. And then what you answer is
you’re not satisfied there is normal functioning. Now, that’s
a far stricter question than you posed?”
Dr. Bassett:“The two are synonymous from our research perspective.”
Family Counsel:“You see normal functioning as synonymous with improved
overall outcome.”
Dr. Bassett:“Well, the research question was designed for the search
protocol; as it is explained, it is designed to be inclusive, it
is designed to look at all intensive behavioural therapies, it’s
designed to look for evidence of improved overall outcome
and it’s looking for comparative trials and it would include
claims or evidence regarding normal functioning. So it
is strictly within the research question. It is exactly what
we were assessing, were claims regarding — the scientific

142

Dr. Bassett:Family Counsel:
As far as you can go is
to say, well, we can’t
be sure that it resultsin children achieving
normal function?”
Dr. Bassett:“That’s what we state.”“That’s because this hasn’t been studied in other treatments
and with other options. We explain at length why we’ve
included what we’ve included and we’ve not found adequate
trials to include to give additional information to more, I
think you... you’re inferring [sic] is a less strict interpretationof improved overall outcome.”
Family Counsel:“Doctor, the only answer you offer is with respect to whether
therapy results in normal functioning. You don’t purport tooffer any other answer than that, do you?”Dr. Bassett:“This is what we can say based on the evidence.”
Family Counsel:“As far as you can go is to say, well, we can’t be sure that it
results in children achieving normal function?”
Dr. Bassett:“That’s what we state.”
Family Counsel:

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Chapter 9: BCOHTA On the Stand“Yah. But you can go so far, Doctor, to suggest, as to say it
clearly results in improved functioning - -”have not limited their effectiveness claims toachieving developmental gains. Instead, they
have permitted and even fostered the premisethat appears throughout the published literatureassociating their therapy with a notion of achieving
normal functioning in as many as half a given
population of children with autism.’

Dr. Bassett:“Which is what we stated.”
Family Counsel:“— and you have chosen not to state that?”
Finally, Dr. Bassett
admits that Lovaas
Treatment does
ameliorate autism.
This contradicts
the BCOHTA reportwhich attempts
to portray Lovaas
treatment as“experimental,” andtherefore, not worthyof funding.

Dr. Bassett:Family Counsel:“We state that at the very beginning as a premise, before
we even get into the details of the systematic review. We
accept that these techniques do provide benefit to children
and their families.”
Finally, Dr. Bassett has no choice but to admit that Lovaas Treatment does
indeed ameliorate the condition of autism. This is important because the
BCOHTA report attempts to portray the Lovaas treatment protocol as purely“experimental,” leading to the conclusion that it is premature to decide thetreatment has substantive benefit for children afflicted by the disorder.
Upcoming in the cross-examination is the BCOHTA accusation that Lovaas
makes a curative claim.
Family Counsel:“Can we look at page 39 of your report. The third paragraphfrom the bottom, you say:‘The absence of corroborative evidence of recovery
from autism does not devalue the effectivenessof early intensive and comprehensive treatment
programs in achieving significant developmental
gains. However, Lovaas and his research colleagues

144“Now, I’m goingto suggest to you,
Doctor, that it isn’t
Lovaas and hiscolleagues who havefostered that premise,
but rather Gresham,in an effort to detractfrom Lovaas’s work,
who accuses Lovaasof claiming he’s got acure. In fact, Lovaas
makes no such claim,
isn’t that —”Now, I’m going to suggest to you, Doctor, that it isn’t Lovaas
and his colleagues who have fostered that premise, butrather Gresham, in an effort to detract from Lovaas’s work,
who accuses Lovaas of claiming he’s got a cure. In fact,
Lovaas makes no such claim, isn’t that —”Dr. Bassett:“That’s your opinion. I mean ...”
Family Counsel:“But isn’t that really a fair statement of what’s gone on in
the literature?”
Dr. Bassett:“It’s not for me to say.”
Family Counsel:“Well, you say here that it’s Lovaas’s colleagues who are
fostering this premise. And I’m suggesting to you that that’s
not true, it’s Gresham who is doing that, setting up a strawman.”
The cross-examination continues with further discussion of the Straw Man
argument made by the BCOHTA that Lovaas Treatment claims to be “curative”.
Family Counsel:

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Chapter 9: BCOHTA On the Stand

Under further cross-examination, Dr. Bassett admits there are many diseases
for which no cure exists; yet the British Columbia medical system fully covers
the cost of what are often very expensive treatments. This admission on thepart of BCOHTA spotlights the discriminatory stance of the B.C. Government’s
refusal to fund science-based autism treatment for children who need it.

“Well, Doctor, in fairness to Dr. Lovaas, he does more than
discuss the 47 percent, the nine children who appear nearnormal. He’s got eight of the remaining ten who show
remarkable gains.”
Dr. Bassett:Family Counsel:“M’mm-hmm.”“All right. And when you talk about treatments, you can’t
cure Parkinson’s disease, can you?”
Family Counsel:“But you choose tocategorize them as
the fostering of thepremise associating
the therapy withachieving normal
functioning. That’s
how you summarize
it?”
Dr. Bassett:“Yes, in the sense that
I explained.”

Dr. Bassett:“Not that I know of.”
Family Counsel:“So it is ameliorating the condition that is the subject offunding through the Ministry of Health?”
Dr. Bassett:“Yes, symptomatic relief of Parkinson’s disease...”Family Counsel:“And the same can be said about diabetes, diabetes is a noncurable condition?”
Dr. Bassett:“Yes.”
Family Counsel:“And yet the government funds insulin for it and various
other treatment modalities; correct?”
Dr. Bassett:146

Family Counsel:
Family Counsel:“All right. And when
you talk about
treatments, you can’t
cure Parkinson’s
disease, can you?”Dr. Bassett:“Not that I know of.”
Family Counsel:“So it is ameliorating
the condition thatis the subject offunding through the
Ministry of Health?”
Dr. Bassett:“Yes...”“So he isn’t just pointing to the 47 percent and he isn’t
claiming that all of the children will achieve normal
functioning. What he’s doing is reporting what, in fact, isevident from his work, that is, that the improvement rate
up to and including apparently normal functioning was
remarkable in 17 of the 19 children; wasn’t it?”Dr. Bassett:“So he’s reporting improvement in the others? Yes. Whichis what is expected. We’re not denying that he’s reportingon his findings.”
Family Counsel:“But you choose to categorize them as the fostering of thepremise associating the therapy with achieving normal
functioning. That’s how you summarize it?”Dr. Bassett:“Yes, in the sense that I explained.”
Although Dr. Bassett is forced to admit that it is Lovaas’ critics who foster
the premise of normal functioning, he still stands by his analysis that it is
Dr. Lovaas who makes the curative claim when he says: “Yes, in the sensethat I explained.”
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Chapter 9: BCOHTA On the Stand“No.”“Correct.”

Dr. Bassett finally admits that the operating assumption of the BCOHTA
Lovaas Autism Report is not based in fact. The scientific community does
not view Lovaas Treatment as a cure for autism. It is a false question with apredetermined answer that constitutes the foundation of biased research.

Family Counsel:“Without a view to curing it but rather with a view to assisting
those who have it to function in day-to-day life?”

BCOHTA Selects Only Lovaas Treatment for Attack

Dr. Bassett:“Yes.”
Family Counsel:

Family Counsel:“And yet the
government funds
insulin for it andvarious othertreatment modalities;
correct?”
Dr. Bassett:“Correct.”
Family Counsel:“Without a view tocuring it but rather
with a view toassisting those whohave it to function in
day-to-day life?”

After admitting that a “cure” is not a necessary outcome of science-based
treatments, nor a criterion for universally available, publicly funded healthcare, Dr. Bassett eventually concludes that Lovaas and colleagues have not, infact, erroneously claimed that Lovaas treatment “cures” children with autism.
Family Counsel:“Could you turn to page 37 of your report. You refer towards
the bottom to Mesibov?”Dr. Bassett:“Yes.”
Family Counsel:“’Raises the principal concern with thisapproach readers might jump to theconclusion that the children might be cured.’Dr. Bassett:“Yes.”

To your knowledge, is the scientific world leaping to that
conclusion?”
Dr. Bassett:“To your knowledge,
is the scientific world
leaping to that
conclusion [that thechildren might becured]?.”
Dr. Bassett:“No.”

Outside of Lovaas Treatment, the BCOHTA did not evaluate a single otherautism treatment protocol or intervention in the report used to defend
Government in court. This is an important detail since government claimed
in court that they provide all manner of services for children with autism.
Not one of those services was looked at by BCOHTA. The single publishedpaper that did — Eaves and Ho, 1996 — was excluded from the report. So
the question becomes obvious: was BCOHTA asked by government to study
the science behind autism treatments, or focus only on discrediting Lovaas
treatment to win a lawsuit? If the balance of evidence suggests the latter,then the health technology movement has a serious problem on their hands— believability or lack thereof.
Despite the lack of scrutiny over special needs service programs in BC, many
millions of dollars are spent on service providers yearly without criteria or
expectations for positive outcomes. In the cross-examination exchange that
follows, the attorney for families systematically looks at various Governmentfunded services available to parents of children with autism in British
Columbia, and asks Dr. Bassett whether the Government requested thesame type of Office analysis of the various government services providers
it currently funds.
Family Counsel:“Have you been asked to comment on government fundingof therapy described as LEAP, L-E-A-P?”
Dr. Bassett:“No.”
Family Counsel:

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Chapter 9: BCOHTA On the Stand“Giant Steps?”“Well, is that what you were instructed to do, undertake asystemic analysis [of] applied behavioural analysis treatmentof autistic children?”Dr. Bassett:“No.”

Dr. Bassett:Family Counsel:“That was the topic that they’d raised, yes.”“CBI?”
Family Counsel:“So what we can takefrom the Jocelynwork is not thatit produces any
meaningful or helpful
results, but it’s a great
designed study?”

Dr. Bassett:“No.”
Family Counsel:“Gateway?”
Dr. Bassett:“No.”
Family Counsel:“TEACCH, the acronym T-E-A-C-C-H?”
Dr. Bassett:“No.”
This central BCOHTA admission is important because it confirms that theGovernment did not commission the Office to evaluate all autism services andtreatments in an effort to improve its policies — it wanted BCOHTA to examine
only the program sought by the families in the lawsuit, and BCOHTA obliged.
Evidence of a double standard is additional confirmation of the irrefutable:
the BCOHTA Lovaas report is nothing more than agenda-based, advocacy
research targeted at the most vulnerable minority in society, disabled children.

Family Counsel:
Dr. Bassett:“Well, it shows that
this type of researchmethodology is not
only possible but it
has been done andit’s ethically feasible in
Canada.”“You didn’t do that, did you?”Dr. Bassett:“Sorry?”Family Counsel:“You didn’t do that, did you? All you did was look at Lovaas?”
Dr. Bassett:“We did a systematic review of all the evidence for —”Family Counsel:“For or against Lovaas?”
Dr. Bassett:“Of all the programs of applied behavioural analysis that
had minimum inclusion criteria that we applied, which wasa control group, and they’re included.”
Family Counsel:

Family Counsel:
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Chapter 9: BCOHTA On the Standthe B.C. Government’s autism policy because what it offers for children with
autism is so abysmal it does not even show up on the ‘radar screen’ of what
we can bring ourselves to study.” Government autism policy and services
don’t even qualify as science by BCOHTA standards.

“You didn’t look at LEAP, you didn’t look at Giant Steps, didn’t
look at CBI, didn’t look at TEACCH, didn’t look at Gateway.
What did you look at other than Lovaas?”
Dr. Bassett:Family Counsel:“We looked at the other, we looked at the TEACCH, we lookedat the one with Ozonoff and their program. What we looked
for were any trials of sufficient quality to draw any conclusion
about overall benefit to children.”
Family Counsel:“Did you look at
any of the existing
programs in British
Columbia where tax
dollars are being
spent in an effort todetermine whether
Lovaas would be
preferential to those?”
Dr. Bassett:“We looked for that
evidence, there
wasn’t any.”

Family Counsel:“Did you look at —”Dr. Bassett:“So we didn’t include or exclude any particular program. We
were looking for a quality of evidence which was defined inour research question.”
Family Counsel:“Did you look at any of the existing programs in British
Columbia where tax dollars are being spent in an effort todetermine whether Lovaas would be preferential to those?”Dr.: Bassett:“We looked for that evidence, there wasn’t any.”
It may be convenient for government to avoid a BCOHTA analysis of theeffectiveness of government’s autism services. However, from a disinterested
standpoint, this would be the right comparison to make — Lovaas Treatment
versus government contracted services. It is therefore significant in theabove admission of Dr. Bassett, that what Government offers children with
autism is so poor it does not meet minimum criteria for inclusion in a BCOHTA
study. This is a neat tautology insofar as it essentially says, “We can’t criticize

152“All right. You go on in paragraph 4 and say:
‘As requested by the government, BCOHTA
has produced a report assessing theeffectiveness of Lovaas therapy.’

Family Counsel:“And because ofthat outcry, you’reaware Dr. Lovaas
went back to thefunding agency, theU.S. National Instituteof Mental Health,and obtained their
specific approval forthe randomizationthat he did employ?
You’re aware of that,aren’t you?”Dr. Bassett:“I’m not aware ofthat.”

And that’s what your report was about, wasn’t it?”Dr. Bassett:“Yes.”
Family Counsel:“And no more?”
Dr. Bassett:“It was also about other evidence for — of sufficient quality
to determine the overall effect on children. There wasn’t any.”
Family Counsel:“Of Lovaas therapy?”
Dr. Bassett:“No, of alternates as well.”
Family Counsel:

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Chapter 9: BCOHTA On the Stand“All right. Now, with — was that the specific instruction thatyou had, the two portions of paragraphs 3 and 4 I read toyou after these meetings with the ministries?”

Dr. Bassett:“Yes.”

Dr. Bassett:Family Counsel:“It is a specific question that we developed following meetingthem.”“— because they didn’t meet standard inclusion criteria?”
Dr. Bassett:Family Counsel:
Excluded fromscrutiny were allother Government
services, including
the ineffective
government services
discredited in court
as ineffective in thetreatment of autism.

“So that’s the question you’re asking yourself?”
Dr. Bassett:“Yes.”
The above exchange between the Family Counsel and Dr. Bassett confirmsthat government requested that health policy analysts at the BCOHTA
target Lovaas Treatment exclusively. Excluded from scrutiny were allother Government services, including the ineffective government services
discredited in court as ineffective in the treatment of autism. In thefollowing portion of the cross examination, Dr. Bassett confirms that, due
to their scientific rigour, studies testing the Lovaas Protocol were the only
studies accepted for scrutiny by the BCOHTA. This is significant because theGovernment of British Columbia attempted to make the argument that they
were in fact already providing a variety of treatments for autism. Clearly theso-called treatments were not scientifically substantiated, even according to
the Ministry of Health’s own academic analysts.
Family Counsel:“Yes.”
Family Counsel:“And among theworks that you
rejected on thatbasis, included thework of Rogers,
the work of Strain,
the work of Harrisand others, and inparticular, the workof Dr. Gresham;correct?”
Dr. Bassett:“Yes.”

Family Counsel:“And among the works that you rejected on that basis,included the work of Rogers, the work of Strain, the work ofHarris and others, and in particular, the work of Dr. Gresham;correct?”
Dr. Bassett:“Yes.”
Here Dr. Bassett admits that the BCOHTA rejected the science behind the
LEAP program, which was funded by the B.C. Government. In addition, he
admits that the science behind some of Lovaas’ most strident critics such as
Dr. Gresham, and Dr. Strain did not qualify to even be studied by BCOHTA
due to poor study design and lack of scientific rigor.
Family Counsel:“Then if you skip down to the fourth paragraph, you say:
‘Four controlled studies of treatment
programs were identified that reported
overall outcome for children.’“Well, Dr. Bassett, if there wasn’t anything to compare it toat the time, what do you expect of Dr. Lovaas?”
Dr. Bassett:And you rejected the remaining 146 — Yes?”
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Chapter 9: BCOHTA On the Stand

Ironically, Generic ABA is Accepted by BCOHTA Uncritically“We only put together the list of criteria — the Court should
understand that the criteria that we used and that you will
see referred to are from the NIH, the National Institute ofMedicine (sic) program.”
Family Counsel:

Family Counsel:“... But if there’s notreatment available
to create a group tocompare to, surely
that’s an absolutely
impracticalsuggestion?”
Dr. Bassett:“It’s not a suggestion.
We didn’t make thatas a suggestion. We
applied a criteria.

“... But if there’s no treatment available to create a group
to compare to, surely that’s an absolutely impracticalsuggestion?”
Dr. Bassett:“It’s not a suggestion. We didn’t make that as a suggestion.
We applied a criteria. We did not return to that criteria as a
critique of Dr. Lovaas’s work. In fact, in the discussion, we
say quite clearly that we recognize this is in a way at thetime ground breaking because — for what you said: Thealternative to institutionalization.”
Family Counsel:

Further along in the cross-examination, Family Counsel points to the double
standard used in the BCOHTA report, since it expediently accepts the entire
field of Applied Behavioural Analysis, uncritically and on a wholesale basis.
Yet the successful application of those same ABA principles in Lovaas
Treatment is considered by BCOHTA to be “experimental.”Dr. Bassett admits
that one of the
major criticismsof Lovaas’ study­— that Dr. Lovaas
did not compare histreatment to anothertreatment — isgroundless. This isespecially true when
one considers that
Dr. Lovaas used twocontrol groups.

When the Family Counsel points out that the ABA studies generally do not
use a control group, Dr. Bassett is not surprised. However, when it came to
Lovaas’ study in which a control group was used ­— which creates a morerobust experimental design ­— Lovaas attracted a large amount of criticism
from BCOHTA about the purportedly poor quality of the study. This is clearlya hypocritical double standard that supports the contention that BCOHTA’s
involvement in Lovaas Treatment “research” is tainted by a government
dictated agenda in court.
Family Counsel:“You say on page 6 of your report, in the paragraph beneaththe quote, second sentence:‘The author describes 271 published studies
evaluating behavioural techniques directed
at target behaviour which are divided into
categories of aberrant behaviour, social
skills, language, daily living skills andacademic skills.’“So the reality is there wasn’t anything for him to compare
it to at the time he was doing it, was there?”Dr. Bassett:“Presumably not.”In the above exchange, Dr. Bassett admits that one of the major criticisms of
Lovaas’ study ­— that Dr. Lovaas did not compare his treatment to anothertreatment — is groundless. This is especially true when one considers that
Dr. Lovaas used two control groups, one of which was the special education
system operating in the Los Angeles school district throughout the durationof the study. In the arid universe of autism research, this approach was
genuinely groundbreaking.

156

Did you look at any of the 271 published studies on ABA?”
Dr. Bassett:“No, we did not.”Family Counsel:

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Chapter 9: BCOHTA On the Stand“If I were to suggest to you, sir, that the vast majority of thosestudies employed no control group, would that surprise you?”“Yes.”
Family Counsel:

Dr. Bassett:“— at page 43 of your report?”“Not at all.”Family Counsel:“...Did you look at anyof the 271 publishedstudies on ABA?”
Dr. Bassett:“No, we did not.”The fact that the BCOHTA did not recognize the above admission as a serious
contradiction — accepting ABA studies en masse as scientifically sound but
rejecting Lovaas’ protocol as experimental — demonstrates either a profoundlack of knowledge and experience in this field of autism treatment or a clear
agenda-based research imperative, or both. It is highly unlikely that the
BCOHTA would have unquestioningly accepted the entire field of ABA basedon their evaluation criteria, since so many studies in this area do not have acontrol group. The above exchange suggests that the published studies in
the area of ABA were likely not even evaluated for the BCOHTA’s study.

BCOHTA Embraces Unsubstantiated Autism Programs andResearch
In addition to accepting the broad field of applied behavior analysis
uncritically, the BCOHTA researchers also accept the review article of Dawson
and Osterling (1997) without question, choosing to ignore the dubious
science behind some of the programs reviewed by Dawson and Osterling.
The BCOHTA ignores the fact that not all studies Dawson and Osterling
reviewed were themselves published in peer-reviewed journals. In addition
to this sidestep, BCOHTA freely quote Howlin (1997) without any concern as
to the reliability and veracity of Howlin’s sources of information. They alsounquestioningly cite the work of Jocelyn et al. (1998) without any probe into
the quality of intervention studied in that paper. In short, research other than
the work of Lovaas is not assessed in a rigorous, thorough manner.
Family Counsel:“Now, you made reference to the work of Dawson and Osterling –”Dr. Bassett:158

Dr. Bassett:“Yes.”
Family Counsel:
Family Counsel:“And, in fact, thoseauthors found thatthe early intervention
program with thebest results fromone of the mostrigorously designed
and implemented
programs is Lovaas;
that was theirconclusion?”
Dr. Bassett:“That’s not what we
cite.”“And, in fact, those authors found that the early intervention
program with the best results from one of the mostrigorously designed and implemented programs is Lovaas;
that was their conclusion?”
Dr. Bassett:“That’s not what we cite. We cite their work in defining thegeneral characteristics of the eight major programs thathave been established in the U.S. and these are the common
features of them.”
Family Counsel:“Well, in fact, other than Lovaas, none of the treatment
programs discussed by Dawson and Osterling had
experimental and control groups, nor did any of them use
comparable rigorous outcome measures such as those usedby Lovaas; isn’t that fair?”Dr. Bassett:“Yes. The study by Dr. Lovaas has two of the four major
components that are needed to establish scientific validity.
And you’ve identified two of them, which is independent
assessment of outcome and a longitudinal study.”

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Chapter 9: BCOHTA On the Standreferring to is the material that Howlin has brought together
in his review of — of observational studies of children, longterm observational studies.”

Family Counsel:“Both of which are lacking in all of the other studies thatDawson and Osterling comment upon?”

Family Counsel:

Dr. Bassett:“Let me just understand then what it is you do. With Lovaas
you apply the strict stringent procedural safeguards but tocriticize him, you just take at face value whatever anybody
managed to get published?”“Yes.”
Family Counsel:
Family Counsel:“Well, in fact, otherthan Lovaas, noneof the treatment
programs discussed
by Dawson andOsterling had
experimental andcontrol groups, nor
did any of them use
comparable rigorous
outcome measures
such as those usedby Lovaas; isn’t thatfair?”
Dr. Bassett:“Yes.”“And, in fact, to your knowledge, none of those eight
independent programs are offered by the government in
British Columbia; is that true?”
Dr. Bassett:“I don’t know.”
In the next segment of the cross examination, Family Counsel reveals the
BCOHTA uncritically uses “secondhand” information (rather than source
materials) from an article written by Howlin (1997) likely because it supports
the objective of their government — advocacy work.

“Let me justunderstand thenwhat it is you do.
With Lovaas you
apply the strict
stringent procedural
safeguards but tocriticize him, you justtake at face value
whatever anybody
managed to get
published?”
Dr. Bassett:Family Counsel:“Is ‘relatively well’ a term of some scientific meaning? You say:‘The group has done relatively well despite
receiving little in the way of specialist
intervention and support.’
What does ‘relatively well’ mean as you have used it there?”Dr. Bassett:“As quoted by Howlin originally in Kanner? What we’re

160

Family Counsel:“That’s not correct at
all.”

Dr. Bassett:“That’s not correct at all.”Family Counsel:“What checking did you do as to the validity of Howlin’s
work?”
Dr. Bassett:“We retrieved the article, we read it and we cite it to try toprovide background material. We didn’t apply strict criteria
to it because that’s not what a systematic review does...”Regarding the Jocelyn et al study, the authors of the BCOHTA report clearly
did not consider the study’s insignificant outcome to be relevant or worthy ofreporting. They also did not consider it important that what they had termed
intensive treatment was neither “intensive” nor treatment. Family Counsel
questions Dr. Bassett regarding BCOHTA’s misleading use of the Jocelyn etal. study to further illuminate this point for the judge in the Auton hearings.
Dr. Bassett’s cross-examination continues:
Family Counsel:“Now, the intervention that was studied by Jocelyn and his161Part II: What Happened in the Supreme Court of British Columbia?

Chapter 9: BCOHTA On the Standor her colleagues was directed primarily at the parents anddaycare staff as opposed to treatment of the child; isn’t thatso?”“Presumably that’s how they describe it.”
Family Counsel:

Dr. Bassett:“Sorry?”“Again, I’d have to look back at this study.”

Dr. Bassett:Family Counsel:

Family Counsel:“Well, according to
Jocelyn I’m goingto suggest to youthat the child care
workers got a total of
five weekly threehour classes which
they attended withthe parents. That
was the extent
of the intensive,community-based,
integrated treatment
program; does thatsound familiar?”
Dr. Bassett:“It, well, yes.”“Well, according to Jocelyn I’m going to suggest to you thatthe child care workers got a total of five weekly three-hourclasses which they attended with the parents. That was
the extent of the intensive, community-based, integrated
treatment program; does that sound familiar?”
Dr. Bassett:“It, well, yes.”
Family Counsel:“Do you regard that as an intensive program?”
Dr. Bassett:“Doesn’t matter how I regard it, that’s not the issue here. It
is not something... —”Family Counsel:“You regard it as an intensive, community-based, integrated
treatment program. Your idea of intensive is five weekly
three-hour classes?”Dr. Bassett:162“I presume that’s how they describe it.”
Family Counsel:
Family Counsel:“You regard it
as an intensive,community-based,
integrated treatment
program. Your ideaof intensive is five
weekly three-hourclasses?”Dr. Bassett:“Presumably that’s
how they describe it.”“Well, did you make any efforts, sir, to determine whether
the description was a reasonable one when they used theadjective ‘intensive’?”Dr. Bassett:“Yes, certainly when we read it.”
Family Counsel:“And was it five weekly three-hour classes?”Dr. Bassett:“The ‘intensive’ probably refers to the overall treatment
program as opposed to this innovation which is thisaddition. And what they’re trying to study is whether thisadditional element is sufficient to have an effect. And thenthey’re randomizing two groups, did one get this additional
three hours of whatever you’ve mentioned, referring to theintensive, community-based, integrated treatment program
to which this innovation is being tested.”
Family Counsel:

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Chapter 9: BCOHTA On the Stand“What was [in] the program that was so ground breaking, so
intense, can you help Her Ladyship with that?”

Dr. Bassett:“Yes.”

Dr. Bassett:Family Counsel:“No, the innovation, the thing that we noted from here isthat the children were randomly assigned to one treatmentgroup or the other; that’s what’s ground breaking.”

Family Counsel:“What was [in] theprogram that was soground breaking, so
intense, can you help
Her Ladyship with
that?”

It is important to stress here that the Jocelyn et al. study, referred to by the
BCOHTA as “ground breaking,” reported no meaningful results, a fact that Dr.
Bassett and colleagues elected to omit from their autism treatment report. Dr.
Bassett does acknowledge, however, that this Canadian study they referred
to as “ground breaking”, is not so because of any meaningful outcome they
achieved, but rather because of the study’s design. This hardly qualifies as achallenge to Lovaas Treatment, but the BCOHTA Lovaas Report neverthelessmisrepresented the significance of Jocelyn et al. in its effort to discredit thegenuine autism treatment that Lovaas-type ABA represents.

Dr. Bassett:“No, the innovation,
the thing that we
noted from here isthat the children
were randomly
assigned to one
treatment groupor the other; that’s
what’s groundbreaking.”

Double Standard: Lovaas Studies meet BCOHTA Criteria for
AttackDr. Bassett:Family Counsel:“All right. You go on
in paragraph 4 andsay:‘As requested by
the government,
BCOHTA has
produced a reportassessing theeffectiveness of
Lovaas therapy.’

Despite the alleged shortcomings of Dr. Lovaas’ research, the BCOHTA had
to admit that the best research, and indeed the only research that met theircriteria for analysis, was the work conducted by Lovaas and colleagues, orwork which included the UCLA protocol.

And that’s what yourrepor t was about,wasn’t it?”

Family Counsel:“Yes.”“All right. You go on in paragraph 4 and say:
‘As requested by the government, BCOHTA
has produced a report assessing theeffectiveness of Lovaas therapy.’
And that’s what your report was about, wasn’t it?”164“And no more?”

Dr. Bassett:“It was also about other evidence for — of sufficient quality
to determine the overall effect on children. There wasn’t any.”
Family Counsel:“Of Lovaas therapy?”
Dr. Bassett:“No, of alternatives as well.”

BCOHTA’s Report Excludes Relevant Articles That Support
Lovaas Treatment
In this part of his testimony in B.C. Supreme Court, Dr. Bassett confirms what
has been asserted throughout the Science for Sale analysis­­: the BCOHTA
selectively, and in a clearly biased manner, includes or excludes academic
papers from their report based on an advocacy agenda ­designed to discredit
Lovaas Autism Treatment and defend Government in court at the expenseof academic integrity, honesty and ethics.
Family Counsel:“The U.S. Surgeon General’s report isn’t listed in the
bibliography. Did you look at that?”
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Chapter 9: BCOHTA On the Stand“I don’t remember looking at it.”

“It’s inconsistent with our opinion and the opinion of all the
research discussion that we cite in our review.”

Family Counsel:

Family Counsel:“Isn’t that something that your researchers should havefound for you?”“But, of course, you didn’t have an opportunity to consider
the views — published views of the Surgeon General of theUnited States on the issue?”Dr. Bassett:“I don’t know. I’d have to look at it.”
Family Counsel:“And if I were tosuggest to you that
the U.S. Surgeon
General describes[Lovaas] as a welldesigned studyof psychologicalintervention, wouldthat surprise you?”Dr. Bassett:“It’s inconsistent with
our opinion and theopinion of all the
research discussionthat we cite in ourreview.”

The U.S. Surgeon General’s Report on Mental Health (1999) is a highly
significant landmark document in the area of mental health. The Surgeon
General’s report specifically commends Lovaas’ work on the treatment ofchildren with autism as being well done and significant. This glaring omissionof the opinion of the chief medical officer in the U.S. highlights a brazen
bias on the part of Office researchers. If the BCOHTA does indeed use theguidelines it claims to use for comprehensive literature searches (the AHCPR),
it most certainly knew of the Surgeon General’s report on mental health, but
elected to omit the document from its submission to B.C. Supreme Court.
Family Counsel:“Now, you didn’t, I gather from our discussion yesterday,
find the U.S. Surgeon General’s report commenting on the
Lovaas study?”
Dr. Bassett:“No.”
Family Counsel:“And if I were to suggest to you that the U.S. Surgeon Generaldescribes it as a well-designed study of psychologicalintervention, would that surprise you?”Dr. Bassett:166

Dr. Bassett:Family Counsel:“But, of course,
you didn’t havean opportunity toconsider the views —published views of
the Surgeon Generalof the United Stateson the issue?”Dr. Bassett:“No, but we will if
we can have a copyof their opinion andwhat they’ve said.
We have no problem
with including it.”

“No, but we will if we can have a copy of their opinion andwhat they’ve said. We have no problem with including it.
As we mentioned, the term “fugitive search,” it’s an ongoingprocess to find more opinions and more substantive claims.”
The Eaves and Ho (1996) autism article mentioned earlier in the chapter,selectively excluded from the BCOHTA report, damages the government’s
case since it was written by two doctors whose research followed a groupof autistic children through the special needs system. These practitioners
concluded that these children did not make substantive improvement inany programs funded by the Province of British Columbia.
Family Counsel:“There is an article by Drs. Eaves and Ho, who are British
Columbian practitioners entitled, ‘Brief report: Stability
and Change in cognitive and behavioural characteristics ofautism through childhood.’ It is not listed in the bibliography;
do you know why?”
Dr. Bassett:“It wasn’t found through our systematic search because it
wasn’t directly relevant.”
Family Counsel:

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Chapter 9: BCOHTA On the Stand“Well, it says that the treatment, I’m going to suggest to you,it says the treatment that is presently available in B.C. isn’t
working. Wouldn’t that be relevant to your inquiry?”by Ron Leaf and John McEachin as editors?”
Dr. Bassett:

Dr. Bassett:“That would be considered a background element. It is notwhat we’re being asked to look at. We’re being asked to lookat the scientific evidence for a treatment.”
Family Counsel:
Family Counsel:“There is an article
by Drs. Eaves
and Ho, who are
British Columbian
practitioners
entitled, “Brief
report: Stability andChange in cognitiveand behaviouralcharacteristics ofautism throughchildhood. It is
not listed in the
bibliography; do you
know why?”
Dr. Bassett:“It wasn’t foundthrough oursystematic searchbecause it wasn’t
directly relevant.”“The scientific evidence based on the clinical experience withpractitioners in this province is irrelevant?”
Dr. Bassett:“I don’t recall it. Is it in the bibliography?”
Family Counsel:
Family Counsel:“The scientificevidence based on
the clinical experience
with practitioners
in this province isirrelevant?”
Dr. Bassett:“It’s not what we’re doing in our systematic review.
Systematic review looks at published scientific evidence ofa certain quality.”
Family Counsel:“You don’t care about what the clinicians are doing,
effectively?”
Dr. Bassett:“That’s not relevant. What I care about doesn’t matter.
What we’re looking at is scientific evidence and that’s whata systematic review is all about.”
Family Counsel:“You didn’t come across a work entitled ‘A Work in Progress’“It’s not what
we’re doing in oursystematic review.
Systematic review
looks at publishedscientific evidence of acertain quality.”
Family Counsel:“You don’t care about
what the clinicians are
doing, effectively?”
Dr. Bassett:“That’s not relevant.”“It doesn’t appear to be. It is a book described as ‘behavioural
management strategies and curriculum for the intensive
treatment of autism.’ Would that have been relevant to yourinquiry if you located it?”Dr. Bassett:“If it had primary data on effectiveness, yes; if it is a textbook
describing approaches, it is not relevant. We did look at anumber of textbooks.”
Family Counsel:“Did you locate an article entitled ‘Parents as Therapists,’ byO. Ivar Lovaas?”
Dr. Bassett:“I’d have to refer to the bibliography.”
Family Counsel:“It is not there, Doctor. So if it is not there, can we assume
you didn’t find it?”Dr. Bassett:“I don’t recall the article.”
Family Counsel:“Let me read you a portion and see if it assists your

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Chapter 9: BCOHTA On the Stand

recollection:‘Not all parents of autistic children can betaught to become effective teachers oftherapists for their children. This is true incases where the parents are divorced andthe mother has to work for financial reasons.
Sometimes parents cannot be trained
because of their own personal psychologicalproblems or lack of interest in the child, orthe child may have problems which are sosevere, he is so self-destructive or so strong
and assaultive that he has to be cared forelsewhere.’

Family Counsel:“You didn’t comeacross a work entitled“A Work in Progress”
by Ron Leaf and John
McEachin as editors?”
Dr. Bassett:“I don’t recall it. Is it in
the bibliography?”

If that indeed is the review of Dr. Lovaas, would that have
had any influence at all in terms of your report?”
Dr. Bassett:“No.”
The above exchange about Lovaas’ article on “parents as therapists”
is important because it is a common theme in governmental policy.
By deprofessionalizing autism treatment with legions of parents andgrandparents for frontline intervention duty — the substitution of family
members for properly trained, professional therapists — the Government
avoids the cost of bona fide treatment. The article by Dr. Lovaas critiquing the“parents as therapists” model directly undermines this theme. The BCOHTA
excluded this Lovaas article from their “exhaustive” search of papers in autism
treatment research.
Family Counsel:“Are you aware of the recent report from the University of
Wisconsin by Drs. Sallows and Graupner on their replication
efforts.”170

Dr. Bassett:“I guess not, we don’t have a report of it. We haven’t seen areport of it, haven’t been able to find a report of it.”

Family Counsel:“Are you aware of
the recent reportfrom the Universityof Wisconsin by
Drs. Sallows andGraupner on theirreplication efforts.”
Dr. Bassett:“I guess not, we don’t
have a report of it.
We haven’t seen areport of it, haven’t
been able to find areport of it.”This BCOHTA omission is very relevant because Sallows and Graupner(2000) successfully replicated Lovaas’ original results. This autism treatment
replication is problematic for the BCOHTA insofar as their argument is that
Lovaas’ results have never been replicated and are therefore “experimental.”
Because the University of Wisconsin article hurts the Office’s advocacy
agenda, it was simply omitted by BCOHTA researchers, or somehow“overlooked” during their purportedly comprehensive, systematic reviewof the literature.
Another highly relevant article omitted from the BCOHTA Lovaas Report(although cited in the bibliography) is the study conducted by Smith in
1997. In this study, Smith examined the results of Lovaas’ treatment protocol
on a very challenging group of children, those with autism and mental
retardation. This is a highly relevant study because its findings disprove thecontention often made that the Lovaas treatment protocol is only successful
for children with autism who are mildly affected. This finding also casts doubt
on the unfounded contention that Lovaas deliberately assembled a groupof children who were mild, and therefore, responded well (the “creaming”
argument).
Family Counsel:“Now, you didn’t find, I gather, in your research, the article by
Dr. Tristram Smith and others entitled ‘Intensive Behavioural
Treatment for Pre-schoolers With Severe Mental Retardation
and Pervasive Developmental Disorder?’”Dr. Bassett:“In 1997?”
Family Counsel:

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Chapter 9: BCOHTA On the Stand“Yes.”“Yes.”

Dr. Bassett:Family Counsel:“Yes, we did.”“And it’s really the reverse of what you have talked about
earlier in your report, where high functioning children aresought out and might skew the results more favourably.
This is the opposite, where it’s really reverse creaming, you’re
getting the worst kids in this study; correct?”

Family Counsel:“All right. Do you discuss it in the paper, Doctor?”Dr. Bassett:Family Counsel:“Now, you didn’t
find, I gather, in yourresearch, the article
by Dr. Tristram Smithand others entitled‘Intensive Behavioural
Treatment for Preschoolers With Severe
Mental Retardation
and Pervasive
Developmental
Disorder?’”Dr. Bassett:“In 1997?”
Family Counsel:“Yes.”“I believe we do. It is an account of the children from theoriginal group that were excluded because of low IQ or aprorated mental age below the minimum inclusion criteria,
if I remember correctly.”
Family Counsel:“Well, doesn’t Dr. Smith and his coauthor describe a study
in which only children with severe autism and mental
retardation were included in that study?”
Dr. Bassett:“I would have to get the original study. Thank you. Sorry,
your question?”
Family Counsel:“Doesn’t that paper describe a study group in which only
children with severe autism and mental retardation were
included?”
Dr. Bassett:

Dr. Bassett:Family Counsel:“And it’s really thereverse of what
you have talked
about earlier inyour report, wherehigh functioning
children are sought
out and might skew
the results morefavourably. This is
the opposite, where
it’s really reverse
creaming, you’re
getting the worst
kids in this study;
correct?”“I’d have to look at it in detail...
So it did not address the population that we were — orthe age group according to their prorated mental age, as I
understand it.”
Family Counsel:“All right. So let me start with this: You don’t discuss theresults reported in that study in your paper, do you?”Dr. Bassett:“That’s right.”
Family Counsel:“And the results are an effort, I suggest to you, to address
one of the concerns that you, in fact, raise in your paper;that is, that they’ve creamed off children who are likely tohave better results?”
Dr. Bassett:“I don’t see how this addresses that question.”

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Family Counsel:

Family Counsel:“Did the fact Dr. Lovaas helped, Dr. Bassett, [did] it give you
a clue?”“Isn’t that the very reason for the study, to address thatconcern, to see what would happen if you took — if you
deliberately took particularly low-functioning children?”Dr. Bassett:

Dr. Bassett:Family Counsel:“All right. So let me
start with this: You
don’t discuss theresults reported inthat study [Smith1997] in your paper,
do you?”Dr. Bassett:“I would have to study this report in detail.”
Family Counsel:“Why don’t you do that at the break, Doctor, and we’ll comeback to it.”At this juncture, there is a court recess, and Dr. Bassett studies the Smith etal. article to answer the questions posed to him at the cross-examination.
Dr. Bassett’s response after the break follows:
Family Counsel:“That’s right.”“Dr. Bassett, you’ve had a chance to look at the article by Drs.
Smith, Lovaas and others?”
Dr. Bassett:“Yes, I have.”
Family Counsel:“And you can confirm that it’s the Lovaas treatment?”
Dr. Bassett:“Yes. Yes, it is definitely Lovaas treatment.”

174“They state very clearly that is what they provided.”

Family Counsel:“And the results arean effort, I suggest toyou, to address oneof the concerns thatyou, in fact, raise inyour paper; that is,that they’ve creamed
off children who arelikely to have better
results?”

At this point in the cross examination, Dr. Bassett admitted to excluding
an important autism treatment study (Smith et al., 1998) ­— a study that
supports the effectiveness of Lovaas Treatment — purportedly because it
was irrelevant. The bias of omission found in the BCOHTA report is that it
dutifully excludes publications that hurt the Government’s case in court.
Genuine academic inquiry should not be dominated by this type of advocacy
imperative. The reputation of the academic community as a whole, andthe University of British Columbia in particular, suffers immeasurable harmwhen ethical lapses such as the BCOHTA report are permitted to happen
and, moreover, are ignored and go unchallenged by “self policing” academic
bodies of ethics review. University silence regarding the unethical conduct of
its faculty functions only as tacit approval and encouragement of improper
practice.

Analysis of BCOHTA Critique of Lovaas Treatment Research
Accusation That Lovaas Assembled a High 			Functioning
Group (“The Creaming” Argument)
As mentioned earlier, one of the many themes in the criticism levelledagainst the work of Dr. Lovaas and colleagues, is the concept that Lovaas’
treatment protocol could have only achieved such remarkable results with“high functioning” autistic children. Family Counsel discusses this criticism
with Dr. Bassett since the BCOHTA report, naturally enough, retrieved thiscommon critique from chief academic rivals of Dr. Lovaas to feature in their
Lovaas report.

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Family Counsel:

Family Counsel:“Now, how would you go about assembling a highfunctioning group of autistic children, Doctor?”“Have you seen anybody who has a contrary view to that,that you can actually deliberately set out to distort theoutcome of a study by selecting children who will do wellwith respect to autism?”

Dr. Bassett:“How would I, or how did this potentially happen in thisstudy?”

Dr. Bassett:“Have I, no.”Family Counsel:
Family Counsel:“I’m going tosuggest you couldn’t
do it; there is no
predictability aboutautism, so you
couldn’t take a groupof people and have
any reasonableassurance theywould do any better
than any other groupof autistic children;
isn’t that the truth?”
Dr. Bassett:“That’s not myexpertise.”“I’m going to suggest you couldn’t do it; there is no
predictability about autism, so you couldn’t take a groupof people and have any reasonable assurance they would
do any better than any other group of autistic children; isn’t
that the truth?”
Dr. Bassett:“That’s not my expertise.”
Family Counsel:“Have you read Dr. Baer’s views, Professor Baer?”Dr. Bassett:“We’ve read the report, his part — we cited his argument, yes.”
Family Counsel:“He says you can’t do it, doesn’t he?”Dr. Bassett:“In that report, if I recall it right, yes.”

176

Family Counsel:“Have you seen
anybody who has acontrary view to that,that you can actuallydeliberately set out todistort the outcomeof a study by selecting
children who will dowell with respect toautism?”Dr. Bassett:“Have I, no.”Family Counsel:“So the only opinion you have on that is that of Professor
Baer?”
Dr. Bassett:“It’s — that’s certainly his contrary — that’s his opinion, yes.”
Family Counsel:“Well, it’s the only opinion you have seen on this subject
matter, isn’t it, Doctor?”Dr. Bassett:“The issue here is around what was done in this trial report,
not an opinion on that.”
Family Counsel:“The only opinion you have seen on whether or not you
could select children who would do well, autistic children
who would do well in a study is that of Dr. Baer, isn’t it?”Dr. Bassett:“There are a number of trial analyzed — number ofindividuals analyzed in the trial that were concerned that the177Part II: What Happened in the Supreme Court of British Columbia?

Chapter 9: BCOHTA On the Standchildren selected for this study were nonrepresentative, andas we document, the children that were selected could havebeen a group of children that were more likely to do well.”Dr. Bassett:“And we need reassurance that it didn’t happen, which is theessence of the need for a proper scientific study.”

Family Counsel:

Family Counsel:“Well, Dr. Baer says you couldn’t do that, and nobody else, toyour knowledge, has said that you can, have they?”“So as far as you’re aware, no one challenges the express
view of Dr. Baer that it couldn’t be done?”Dr. Bassett:Family Counsel:“Well, Dr. Baer says
you couldn’t dothat [select children
who do well], andnobody else, to yourknowledge, has said
that you can, havethey?”
Dr. Bassett:“What they’re saying
is that looking at the
subgroup in this trial,
the 19 children inthis trial, there needs
to be reassurance
that that isn’t what
happened.”“What they’re saying is that looking at the subgroup in thistrial, the 19 children in this trial, there needs to be reassurance
that that isn’t what happened.”
Family Counsel:“Doctor, let me try it again. The only opinion you have seenon whether it could happen is the opinion of Dr. Baer, andhe says you couldn’t do it; isn’t that right?”
Dr. Bassett:“No, I don’t think that’s right.”
Family Counsel:“Okay. Who says that you could?”
Dr. Bassett:“Well, that’s what the critiques, several of the critiques of thistrial were based on that principle.”
Family Counsel:“They haven’t said you can, they’ve said we’re worried thatit might have happened?”178

Dr. Bassett:Family Counsel:“So as far as you’reaware, no one
challenges theexpress view of Dr.
Baer that it couldn’t
be done?”Dr. Bassett:“I haven’t readany critique of his
critique, no.”“I haven’t read any critique of his critique, no.”The “creaming” theme was heavily emphasized throughout the BCOHTA
Report. However, specific criteria used by Dr. Lovaas for the inclusion of “test”
children in his landmark autism treatment study were not presented fairly by
BCOHTA researchers. One of the selection criteria used in the Lovaas study
was proximity to the clinic so that children involved in the treatment group
did not live too far away from the university. There was a preference thatclinicians not need to drive more than one hour from U.C.L.A. to conduct theautism treatment research. So this key selection criterion was simply basedon the constraints of Los Angeles traffic reality — not creaming.
Counsel representing families addresses this issue.
Family Counsel:“Well, just dealing with the geographic location, you’re notseriously suggesting, are you, where any of the children lived
would have an impact on their level of functioning?”
Dr. Bassett:“No. But when a child is selected for the treatment group,
then they need to be followed to find out how they actually
do. Whether they turn out to be children with problems,
this follows a methodological criteria which is called
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Chapter 9: BCOHTA On the Standchildren before the program starts, and then you determine
subsequently how the entire treatment and control groupdo.”

Family Counsel:“You’re aware that Dr. Lovaas excluded children with low
PMA scores, that is, those equivalent to a deviation IQ of
below 30?”

Family Counsel:“Well, are you suggesting that the location of residence
would in any way affect the level of functioning of an autistic
child?”

Dr. Bassett:“Yes.”

Dr. Bassett:Family Counsel:“Well, just dealing
with the geographic
location, you’re notseriously suggesting,are you, where anyof the children lived
would have an
impact on their levelof functioning?”
Dr. Bassett:“No.”“No, it should not.”Family Counsel:“Okay. Now, you’re aware that Lovaas essentially took allcomers if there were spots available in the study; it was firstcome first served, as it were?”Dr. Bassett:“Yes, that’s what he describes in his methodology.”
Family Counsel:“And so that wouldn’t allow him in any way to cream offchildren who he thought, if indeed he had such thoughts,
might be higher functioning?”
Dr. Bassett:“We have no idea. We have no way of knowing his — if itwas, in fact, first come first serve, it’s still potentially biased.
And the only way to control for that bias is to subsequently
randomize children.”

Family Counsel:“Okay. Now, you’reaware that Lovaas
essentially took allcomers if there werespots available inthe study; it was firstcome first served, as
it were?”Dr. Bassett:“Yes,...”

Family Counsel:“So they were excluded from either the control or theexperimental group?”
Dr. Bassett:“Yes.”
Family Counsel:“And the reason for that was because it was difficult todifferentiate autistic children from other profoundly retarded
children at that low an IQ level?”
Dr. Bassett:“Yes.”
Family Counsel:“The group included echolalic children up to 46 months ofage?”
Dr. Bassett:“The inclusion group, yes.”

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Family Counsel:“All right. So there was some effort on the part of Lovaas
to try and make the groups comparable based on a varietyof criteria?”“Now, an effort was made to match the control and theexperimental group by comparing measures such as
prorated mental age?”

Dr. Bassett:

Dr. Bassett:“Yes.”“Yes, among others.”
Family Counsel:“Now, an effort wasmade to matchthe control andthe experimentalgroup by comparing
measures such as
pro-rated mental
age?”
Dr. Bassett:“Yes, among others.”...
“I’ll have to look at
the list. There’s about
12.”

Family Counsel:“Some pathology?”
Dr. Bassett:“Yes.”
Family Counsel:“Abnormal speech?”
Dr. Bassett:“Yes.”
Family Counsel:“Self-stimulatory behaviour?”Dr. Bassett:“I’ll have to look at the list. There’s about 12. I don’t recall that
one in particular. I will find the original study. But, yes, I mean,
there are a number of criteria that they were compared on.”Family Counsel:

182

Family Counsel:“All right. So there wassome effort on thepart of Lovaas to try
and make the groups
comparable based on avariety of criteria?”
Dr. Bassett:“Yes.”

The above cross examination exchange affords Dr. Bassett the opportunity to
acknowledge that children in Dr. Lovaas’ study were carefully “matched” onapproximately twelve (12) relevant criteria, casting doubt on the argument
or BCOHTA intimation that the experimental group in the landmark Lovaas
study was biased.
Ethics in Canada: Feasibility of Random Assignment
Group and Experimental Groupto a Control

In the next portion of B.C. Supreme Court testimony, Dr. Bassett justifies
why children with autism — in his opinion — can be randomly assigned
to experimental and control groups in any future autism studies. Ignoring the large body of evidence supporting the effectiveness of the Lovaas
treatment protocol, Dr. Bassett expresses support for placing children with
autism in a control group ­— children that would intentionally not receive
what researchers and clinicians have already declared as “best practice” inautism treatment, including the New York State Department of Health.
Family Counsel:“Now, you refer to Jocelyn and others in the fifth paragraphon this page; you see that?”
Dr. Bassett:“Yes.”
Family Counsel:
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was a community-based autism program, a comprehensive
program.”“And you refer in the fourth line from the end of thatparagraph to their studies as being ‘ground breaking’ inthis area of research?”

Family Counsel:

Dr. Bassett:“So what we can take from the Jocelyn work is not that it
produces any meaningful or helpful results, but it’s a great
designed study?”“Yes.”
Family Counsel:
Family Counsel:“So what we cantake from the
Jocelyn work is notthat it produces
any meaningful or
helpful results, but
it’s a great designed
study?”“Why do you say it was ground breaking?”
Dr. Bassett:“Because it was randomized.”
Family Counsel:“The —”
Dr. Bassett:“Sorry — the selection to treatment or control group was
random assignment.”
Family Counsel:“But the authors offer absolutely no successful treatment
outcome data, do they?”
Dr. Bassett:“It’s ground breaking in its methodology. Their conclusion,
their study was designed to look at the benefit of — of parent
education versus community — with or without community
education. So what it showed was in Canada, it is ethicaland feasible to randomize treatment assignment and this184

Dr. Bassett:
Dr. Bassett:“Well, it shows that
this type of researchmethodology is not
only possible but it
has been done andit’s ethically feasible
in Canada.”“Well, it shows that this type of research methodology is not
only possible but it has been done and it’s ethically feasible
in Canada.”This exchange exposes Dr. Bassett’s troublesome ethical stance: even if an
autism treatment study shows no significant improvement in the condition ofchildren, according to the BCOHTA it is ethical to randomly assign children to
the experimental and control groups. What makes the BCOHTA position here
all the more ethically questionable is that they strategically ignore the factthat Lovaas-type ABA treatment for autism has already been recommended
by the U.S. Surgeon General and considered “best practice” by the New YorkState Department of Health. New York State states that not providing ABA,­­or provision of interventions that supplant ABA, constitutes harm done tothe child. All this expert opinion was somehow ignored in the “exhaustive”
review undertaken by the BCOHTA for their autism report.
Family Counsel:“Are you familiar with the notion of informed consent forclinical trials?”Dr. Bassett:“Yes.”
Family Counsel:“And you can’t put a child into a study without telling theparents what it is you’re doing and why, can you?”185

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Dr. Bassett:Family Counsel:“Of course not.”“You say we have a number, you’re not aware of any in British
Columbia?”

Family Counsel:

Dr. Bassett:“It would be completely unethical and unacceptable?”“I’m not aware — we did not study the autism treatment
options in British Columbia.”

Dr. Bassett:“Right.”Family Counsel:“Are you familiar
with the notion of
informed consent forclinical trials? ... And
you can’t put a childinto a study without
telling the parents
what it is you’re
doing and why, canyou?”
Dr. Bassett:“Of course not.”Family Counsel:“And if you told a parent that they could have either
participation in a program that had a 47 percent normalization
rate as opposed to a 1 in 64 chance, you’d think seriously thatyou can conduct randomized trials if you give that kind of
information to parents?”
Dr. Bassett:“It would be unethical to give that kind of information toparents.”
Family Counsel:“If you did, you can be sure that no reasonable parent would
want their child to be in the control group; correct?”
Dr. Bassett:“If a study, a valid study had shown that degree of treatment
effect, then everyone would be using it. The difficulty is that
we have a number of treatment options available, noneof which have been compared with one another, and it is
ethical and appropriate to study those treatments options,and parents can be made aware of those options.”

186

Family Counsel:
Family Counsel:“And if you told aparent that they
could have either
participation ina program that
had a 47 percent
normalization rate
as opposed to a 1
in 64 chance, you’dthink seriously thatyou can conduct
randomized trials if
you give that kindof information toparents?”“And if you told parents that their child could be enrolled
in a group that had a prospect of 47 normalization rate or
the group that has a 1 in 64 chance of just not staying andgetting worse, you’re not suggesting that any reasonable
parent would opt for the latter group, are you?”Dr. Bassett:“I wouldn’t tell them that.”
It is worth emphasizing that Dr. Bassett said, “I wouldn’t tell them that.” This
last statement seemed so outrageous to many in the court room that there
was a perceptible hush. The fact that Dr. Bassett would not tell parents about
the best designed study and most effective approach in the entire field ofautism treatment research, raises serious questions of ethics.
Family Counsel:“Random assignment of children to treatment and control
groups has been recently shown by Jocelyn and others to
be both feasible and ethical in Canada?”
Dr. Bassett:“Yes.”

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Family Counsel:‘It is the purpose of the university to ensurethat where a human subject is involved in a
research or other study, the safety, welfare
and rights of the subject are adequately
protected.’“In reviewing Dr. Jocelyn’s work, did you conclude that thetreatment described by Jocelyn produced no meaningful
success in terms of outcomes?”Dr. Bassett:You’re familiar with that statement?”“It produced moderate benefit. It didn’t produce large gains
in overall outcome.”
Dr. Bassett:“It would be
unethical to
give that kind of
information toparents.”

Family Counsel:“Now, were you able to determine whether Jocelyn, in
recruiting subjects for the study described, offered to theparents any information about intensive behavioural earlyintervention?”
Dr. Bassett:“We did not examine that. And I don’t know the answer.”
Family Counsel:“Well, you’ve cited it to support the proposition that Jocelyn’s
work was both feasible and ethical in Canada. Are you saying
it would meet Canadian ethical standards not to disclose that
there are other treatments?”
Dr. Bassett:“I’m saying that this met Canadian ethical standards andpreceded it at trial.”
Family Counsel:“Well, Doctor, UBC policy on research specifically states:

188

Dr. Bassett:“Yes.”
Family Counsel:
Now, were youable to determine
whether Jocelyn... offered tothe parents any
information about
intensive behaviouralearly intervention?”

Family Counsel:“And are you suggesting that not disclosing other available
treatments and encouraging subjects into a study that is
experimental would meet ethical standards such as that?”
Dr. Bassett:“Oh, of course not.”Dr. Bassett:“We did not examinethat. And I don’tknow the answer.”

At this juncture in the cross examination, it becomes clear that the BCOHTA
Lovaas report’s recommendations violate University of British Columbia
ethical guidelines.
Family Counsel:“And in fact, what Drs. Kazdin and Weisz said about Dr. Lovaas’
work was:‘Constraints of real life may limit how
experimentally pristine one may be inresearch with severe conditions possibly
requiring intensive treatment. Neither otherresearchers nor Lovaas could arrange for
random assignment of children to conditions.

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Both limitations were understandable under
the circumstances and both were addressedby the investigators. These circumstances
provide a reminder that the real issue inoutcome research is not so much whether
all the shibboleths of experimental methods
were employed, but whether appropriate
steps are taken to protect the validity of thestudy and to preserve the interpretability of
its findings.’
At this juncture,
it becomes clearthat the BCOHTA
Lovaas report’s
recommendations
violate Universityof British Columbia
ethical guidelines.

Do you agree with those comments?”
Dr. Bassett:“Those are his opinions on what Dr. Lovaas did and whether
or not he could or could not have achieved randomization.
I don’t have an opinion specifically on that. Those are
attributed to that article. I don’t have any criticism of his
opinion.”Once again Dr. Bassett contradicts himself. On the one hand he has no
opinion regarding whether or not the appropriate steps were taken to ensurethat the study is valid, yet the BCOHTA report serves up stinging criticism
regarding purported methodological problems with Lovaas’ research relating
to how experimental and control groups were assigned.
Family Counsel:“All right, Now, when you deal with the issue of random
assignment, are you aware of the reasons why pure random
assignment was not undertaken by Dr. Lovaas?”
Dr. Bassett:“What do you mean by ‘pure’?”“What you’re suggesting should have been done.”Dr. Bassett:“Randomization is randomization.”
Family Counsel:“Well, are you aware that there was an outcry from parent
groups against the use of random assignment when Dr.
Lovaas was trying to set up his study?”
Family Counsel:“All right, Now, when
you deal with theissue of random
assignment, are youaware of the reasons
why pure random
assignment was notundertaken by Dr.
Lovaas?”Dr. Bassett:“He describes that, yes.”
Family Counsel:“And because of that outcry, you’re aware Dr. Lovaas went
back to the funding agency, the U.S. National Institute of
Mental Health, and obtained their specific approval for the
randomization that he did employ? You’re aware of that,aren’t you?”Dr. Bassett:“I’m not aware of that.”
Family Counsel:“If that was the case, that the institute [NIH] whose criteria
you say weren’t followed, were prepared to approve therandomization employed by Dr. Lovaas, would you withdraw
your criticism with respect to the randomization?”
Dr. Bassett:Family Counsel:

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Chapter 9: BCOHTA On the Stand“Not at all.”“Is it in the references?”

Family Counsel:

Family Counsel:“I see. So you’re going to apply the National Institutes of
Health criteria even though they themselves chose not tofor this specific study?”“Well, it is not footnoted so I can’t imagine it is, but you tellme.”
Dr. Bassett:

Dr. Bassett admits above that he is prepared to accept the NIH when it isconvenient, but ignores it when it hurts — this, of course, represents classic
advocacy research.
Family Counsel:

Misleading Use of Citations“Well, are you awarethat there was an
outcry from parent
groups against the useof random assignment
when Dr. Lovaas wastrying to set up his
study?”At this point in the cross examination, Dr. Bassett attempts to defend
BCOHTA’s heavy reliance on secondary sources of information, as opposed
to primary sources, which is more academically appropriate. As becomesapparent in the exchange below, secondary sources of information wereused by BCOHTA to support the erroneous contention that many people
with autism do well without treatment.

Dr. Bassett:Family Counsel:“He describes that,
yes.”“You looked at Kanner’s published work?”
Dr. Bassett:“I’d have to — I’d have to look back at the article. I don’t
remember all of these articles individually.”
Family Counsel:“I don’t believe it is in your bibliography, sir, but if you want
to check.”
Dr. Bassett:“The way it is referenced, it’s almost — it looks like Howlin
cited Kanner.”
Family Counsel:“And because of that
outcry, you’re aware
Dr. Lovaas went
back to the funding
agency, the U.S.
National Instituteof Mental Health,and obtained their
specific approval forthe randomizationthat he did employ?
You’re aware of that,aren’t you?”Dr. Bassett:“I’m not aware ofthat.”

Family Counsel:“All right. Well, sir, when you undertake the work that you
did, is it customary to rely on secondary sources and quotesomeone else’s interpretation of a primary source?”
Dr. Bassett:“In this background section, again, we’re using the material
to give an overview...”
Family Counsel:“Okay. Well, the long and short of it is you didn’t read
Kanner’s article, you don’t know what he said other thanwhat Howlin has made of it; is that fair?”Dr. Bassett:“I think that’s fair.”
Family Counsel:“And in your research assessment work, if you were going
to offer something that you believe to be reliable, you go to

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Chapter 9: BCOHTA On the Standthe primary source, wouldn’t you.”

Miller told you was his view?”

Dr. Bassett:

Dr. Bassett:“Yes.”“No, not at all.”Family Counsel:

Family Counsel:“You didn’t with Kanner?”“I’d have to turn to the text.”

Dr. Bassett:Family Counsel:“Okay. Well, the longand short of it is you
didn’t read Kanner’s
article, you don’t knowwhat he said otherthan what Howlin has
made of it; is that fair?”Dr. Bassett:“I think that’s fair.”“Exactly.”
The point, made here by counsel for the families, is that when Dr. Bassettand colleagues find a comment in an article that supports their advocacy
research, they simply take it from the secondary source: (1) without checking
the accuracy of the statement, (2) without understanding the context in which
the statement was made, and in Kanner’s case (3) without even understanding
or defining success for people with autism. Agenda based “shortcuts” are ahallmark of the BCOHTA’s Lovaas Report.
BCOHTA and the Government Agenda
One of the themes apparent in much of the Government literature and also
included in the BCOHTA report, is the concept that professionals are purposely
misdiagnosing children with autism so that parents can access purportedly
generous government services. Under cross-examination, Dr. Bassett admits
there is only one source of information supporting this suggestion raised in
the BCOHTA report. The source is a Government physician who happens
to also be a so-called “external reviewer” of the BCOHTA autism report – Dr.
Miller of Sunny Hill Health Centre for Children.
Family Counsel:“The comment that is attributable to Dr. Miller in the report isthat he or she thinks that parents are being dishonest about
their children’s condition to get treatment; is that what Dr.

Dr. Bassett:Family Counsel:“And in your researchassessment work, if
you were going tooffer something thatyou believe to bereliable, you go to
the primary source,
wouldn’t you.”Dr. Bassett:“Yes.”
Family Counsel:“You didn’t with
Kanner?”Dr. Bassett:“Exactly.”“The point he was making is he was concerned about thelabelling of children with autism as a potential bias towards
making the incidence appear higher than it actually is. And
the concern would be that by being labelled with autism
or autism-like symptoms, you may have access to services
which you may not otherwise have. So he was as muchconcerned about clinicians as taking that step towards
labelling as parents being dishonest.”
Family Counsel:“Well, Doctor, what place does that anecdotal view of Dr.
Miller have in your report?”
Dr. Bassett:“A minor one and it’s early on in the background estimateof the incidence of autism, which is clearly stated as
background.”Family Counsel:“Why, if you’re just doing a systematic review of the literature,would you single out Dr. Miller’s view?”
Dr. Bassett:“We include what we hope will be enough background

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Chapter 9: BCOHTA On the Standmaterial for the audience to understand what is autism, whatis the prevalence of autism...”Dr. Bassett:“The point he wasmaking is he wasconcerned about thelabelling of children
with autism as apotential bias towards
making the incidence
appear higher than it
actually is. And theconcern would be...
you may have accessto services which you
may not otherwise
have.”

It is noteworthy that Dr. Bassett has no problem including “anecdotal”
evidence that supports Government’s court case, in a report which is
purportedly only a “systematic review” of the literature on autism treatment.
This is particularly disturbing since Dr. Marie Bristol-Power, of the U.S. National
Institute of Children’s Health and Human Development and coordinator of
autism research at the NIH, states with respect to the rise in autism diagnoses:“I don’t think it’s just better diagnosis, or that autism or PDD is the disease
du jour... there is something else going on, and we are hoping to solve
this problem.”1 In fact, the increased number of cases of autism is entirely
irrelevant to the issues at hand, yet was included in the BCOHTA Lovaas Reportbecause it supports the agenda of its funding source — Government i.e.,to spend as little money as possible on treatment for children with autism.
Clinicians vs. Researchers: In Defense of the NY Report
In this area of the cross-examination, Dr. Bassett attempts to defend theview that the entire “clinical guidelines” movement is flawed and thatclinicians working with children with autism are not qualified to makerecommendations regarding best practices treatment protocol. This is atheme that is prevalent in other BCOHTA publications.
Family Counsel:“Well, Doctor, as I understood you yesterday, your effort was
to determine whether Lovaas treatment provided a cure for
autism. Didn’t you go to the work of eminent specialists inthe field who got together to create the New York guidelines
and see what they thought about it?”Dr. Bassett:“It’s important for the Court to understand that clinicalpractice guidelines per se do not meet our inclusion criteria.”-

Family Counsel:“All right. So all these experts get together in New York to
decide that the research supports in terms of what clinicallyshould be done, and you don’t care what their view on thatis?”
Dr. Bassett:“It’s important for the
Court to understandthat clinical practiceguidelines per se
do not meet our
inclusion criteria.”

Dr. Bassett:“If it’s an opinion on what to do in clinical practice, it doesn’tmeet the minimum inclusion criteria or the appropriate
inclusion criteria for systematic review.”
Family Counsel:“Well, Gresham is secondary in the same sense, is it not?”Dr. Bassett:“It’s exactly the same sense. But he discussed the issues thatwere important to this systematic review as predefined in
our protocol.”Family Counsel:“Well, Doctor, if the New York group came to the conclusionthat research supporting the Lovaas treatment protocol
is the most methodologically sound and has the mostcompelling outcome data of any autism research, you’resaying that isn’t worthy of inclusion in your paper?”Dr. Bassett:“It would be worthy if they provided details of the basis of

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Chapter 9: BCOHTA On the Stand

presumably yes.”that conclusion.”

Family Counsel:

Here it is important to stress that the New York Department of Health reporton autism treatment provides fifteen pages of detailed information regarding
the methodology used as “the basis of their conclusion.”2 In addition,
appendices of the report carefully detail the literature searches employed
for each topic.3 The New York Department of Health report also provides
evidence tables for each study that met its criteria.4 In fact, supporting
documentation offered by the New York report is far more detailed than any
provided by the BCOHTA in its report on Lovaas Treatment.
Family Counsel:“All right. So allthese experts get
together in New Yorkto decide that the
research supports
in terms of whatclinically should bedone, and you don’tcare what their viewon that is?”Family Counsel:“Now, the New York study was conducted by a panel of 62
peer reviewers who were experts in autism?”
Dr. Bassett:“Presumably, yes.”
Family Counsel:“And it was done in an open fashion; that is, it was done
publicly?”
Dr. Bassett:“Well, in fact, the AHCPR guideline methodology is amethodology that you’ve used in your own office, is it not?”Dr. Bassett:“Yes, it is.”Dr. Bassett:“If it’s an opinion onwhat to do in clinicalpractice, it doesn’tmeet the minimum
inclusion criteriaor the appropriate
inclusion criteria forsystematic review.”

Family Counsel:“And it was on that basis that you examined practiceguidelines for testing of cholesterol?”Dr. Bassett:“Yes.”
Family Counsel:“And so when you were asked to examine clinical guidelines,
you used the same methodology in British Columbia as they
did in New York to examine clinical guidelines for treatmentof autism?”“I don’t know.”
Family Counsel:“The New York report relied on a standard methodology fordeveloping clinical practice guidelines used by the Agency
of Health Care Policy and Research?”
Dr. Bassett:“I would have to refer to this. If you’re quoting, then198

Dr. Bassett:“We should be clear that we did not develop clinical practiceguidelines. We were not asked to. Our role was to use thoseguidelines that have just been referred to by the AHCPR tocritique other guidelines.”
Family Counsel:

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Chapter 9: BCOHTA On the Stand“Don’t you state in the report, Doctor:

these scholars are far more balanced than presented by the BCOHTA.

‘To review and evaluate the process usedin developing clinical practice guidelines,
and to determine the extent to which theguidelines were evidence based, BCOHTA
used a set of 15 appraisal criteria derived
from the work done by the Institute ofMedicine and the Agency for Health Care
Policy and Research.’”Family Counsel:“The New York reportrelied on a standard
methodology fordeveloping clinicalpractice guidelines
used by the Agency
of Health Care Policy
and Research?”
Dr. Bassett:“I would have torefer to this. If
you’re quoting, thenpresumably yes.”

Dr. Bassett:“M’mm-hmm.”
Family Counsel:“That’s what you did in that case?”Dr. Bassett:“Yes.”In this cross-examination of the director of the BCOHTA, the attorney
representing families exposes the fact that Clinical Practice Guidelines
developed by the New York State Department of Health used the same
method of “systematic review” that the BCOHTA uses in its own research
projects (developed by the AHCPR). Despite this fact, the BCOHTA views the
New York report as flawed. According to BCOHTA, the entire Clinical Practice
Guideline “movement” is flawed, except (apparently) when it comes to use of
AHCPR clinical practice guidelines for BCOHTA’s own report on cholesterol
testing.
Misrepresenting the People They Quote
The BCOHTA report selectively quotes highly regarded academics in theautism research community in order to make it appear as though theseresearchers are critical of the Lovaas treatment protocol. However, views ofUnder cross-examination these facts come to light. The first article that is notpresented in a balanced manner is written by a researcher affiliated with the
U.S. National Institutes of Health, Dr. Marie Bristol-Powers.
Family Counsel:“Now, in the same — are you familiar with the National
Institutes of Health statement from the United States:‘Although there is no cure, autism is treatablethrough educational interventions ofvarious types. Early intervention may beparticularly effective, presumably becauseof the plasticity of the neural systems at
the time’?”

Family Counsel:“Well, in fact, the
AHCPR guideline
methodology is amethodology thatyou’ve used in yourown office, is it not?”Dr. Bassett:“Yes, it is.”Dr. Bassett:“I’m not familiar with that statement but it sounds reasonable
and it seems consistent with the NIH reference that you havepointed us to.”Family Counsel:“Well, in fact, they quote that as being Bristol’s view from thework you rely upon at page 3.”
Dr. Bassett:“Well, like I said, it seems consistent with it.”
Family Counsel:“But you don’t make any reference to the positive commentsof Bristol. You selectively referred only to the weaknesses
that Bristol described on page 3; did you not?”Dr. Bassett:

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Chapter 9: BCOHTA On the Standseems to me a reasonable statement about the state ofknowledge on long-term outcome.”“On — of the NIH report?”
Family Counsel:

Family Counsel:“No —”“Doesn’t Bristol also state:

Dr. Bassett:‘It is also clear that persons of all ages
and all levels of ability can benefit fromaccess to consistently available proventreatment. It is also known, however,that treatment response is not uniform
within the population. Although many
children may be brought to the pointof near normal functioning, others aremuch less responsive to social behaviouralintervention programs’?”“Our reference to the NIH report is incomplete?”Dr. Bassett:“Our reference to
the NIH report isincomplete?”
Family Counsel:“Yes.”
Dr. Bassett:“It’s a huge report.”

Family Counsel:“Yes.”
Dr. Bassett:“It’s a huge report.”
Family Counsel:“Incomplete and unfair because you take only one side of
the comments, that is, the negative side, without including
Bristol’s own positive comments on the early intervention
and treatment of autism?”
Dr. Bassett:“Well, that’s your opinion...”Family Counsel:“It’s the statement that autism is treatable that I’m referringto, Doctor. You don’t think it was fair to include that to add
some context to the portion you did quote from Bristol?”Dr. Bassett:202“In this section to do with long-term outcome, we cite what

Family Counsel:“Incomplete andunfair because you
take only one side of
the comments, thatis, the negative side,
without including
Bristol’s own positive
comments on theearly intervention
and treatment ofautism?”Dr. Bassett:

Dr. Bassett:

The next article that is presented by the BCOHTA Autism Report in an unbalanced manner is that written by Dr. Howlin in reference to rates and level offunctioning amongst autistic adults.

“Well, that’s youropinion...”“That sounds like a reasonable statement. We makestatements similar to that in our discussion section.”

Family Counsel:“Now, you relied on some published work by Dr. Howlin?”
Dr. Bassett:“Yes.”
Family Counsel:“And again at page 3, you have referenced the comment that:
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Chapter 9: BCOHTA On the Stand

untreated, only 1 in 64 will show any improvement, because
these people Howlin is describing were, in fact, getting someform of treatment apparently?”‘10 to 20 percent of people in the latter years
are in their own homes and in work?’
Now, did you do any critical assessment of how Howlin cameto that conclusion?”

Dr. Bassett:“Exactly.”

Dr. Bassett:Family Counsel:“Doesn’t Bristol also
state:‘It is also clear that
persons of all ages
and all levels of
ability can benefit
from access toconsistently available
proven treatment... Although many
children may bebrought to thepoint of nearnormal functioning,others are muchless responsive tosocial behaviouralintervention
programs’?”
Dr. Bassett:“That sounds like areasonable statement.”“We said we read her article and we found that it included— as best we could tell without doing a critical appraisal ofthis literature...”Family Counsel:“Didn’t Dr. Howlin suggest that the reason for the
improvement, apparent improvement, was attributable, atleast indirectly, to better treatment, education and a decrease
in institutionalization?”
Dr. Bassett:“Yes.”
Family Counsel:“So it wasn’t the case of this just spontaneously happening.
Better treatment, which she doesn’t describe, and education
were attributable to the improvements?”
Dr. Bassett:“Yes.”
Family Counsel:“So it isn’t really an answer to Dr. Rutter’s comment that,204

Family Counsel:

Family Counsel:“So it isn’t reallyan answer to Dr.
Rutter’s comment
that, untreated, only
1 in 64 will show
any improvement,
because thesepeople Howlin is
describing were, infact, getting someform of treatment
apparently?”
Dr. Bassett:“Exactly.”“And if one reads the entirety of Howlin’s work, she
actually says that only 4.8 percent of the autistic people
that researchers followed into adult life were sufficiently
independent and teachable so as to be gainfully employed.
Isn’t that right?”
Dr. Bassett:“That’s what she describes, yes.”
Family Counsel:“So it’s not anywhere near 10 to 20 percent of autistic adults
who are in paid employment. The number is considerably
less, under 5 percent?”
Dr. Bassett:“Well, I’ll try and refer to her material. Are you quoting fromher material in that — the article?”
Family Counsel:“Well, it’s my summary of it, Doctor. I can’t give you the line.”
Dr. Bassett:“I don’t have the summary in front of me so I would have to205Part II: What Happened in the Supreme Court of British Columbia?

Chapter 9: BCOHTA On the Standlook at the original.”

professionals blind to the treatment status.
Interrelated reliability was reported for
pretreatment behavioural measures.
Outcome variables at second follow-up
included several different kinds of measures
well chosen to document current levelsof functioning in areas that are generally
significantly affected by autism: IQ, adaptive
behaviours measures, school placement
and behavioural measures. Follow-up
was carried out for many years after thetreatment was delivered so that long-term
affect of treatment could be examined. The
two control groups allowed for examinationof two different treatment conditions, oneof which represented typical community
programs and the other represented both
typical community treatment and somelevel of behavioural interventions. Thus,
one control group could be considered to beallowing for the comparison of nonspecifictreatment. A very important finding wasthat in the treated group, outcome waspredicted by pretreatment mental ages.’

Regarding the article written by Rogers (1998), the BCOHTA reportmisrepresents her article by selectively quoting only the parts of the article
that supports its government advocacy argument. Of note is the title ofRogers’ article, which is “Empirically supported comprehensive treatments
for young children with autism.”
Family Counsel:“Now, at page 38 of your report, you quote from Rogers.”
Family Counsel:“And if one reads theentirety of Howlin’s
work, she actually saysthat only 4.8 percentof the autistic people
that researchers
followed into adultlike were sufficiently
independent andteachable so as to be
gainfully employed.
Isn’t that right?”
Dr. Bassett:“That’s what she
describes, yes.”

Dr. Bassett:Family Counsel:“At the bottom, yes.”
Family Counsel:“’Studies did not demonstrate the level of
improvement in multiple areas of functioningor the sustained long-term effects andtreatment that Lovaas reported. The field
awaits a full independent replication of the
Lovaas study.’
But Rogers went on to say [about the Lovaas landmark study]:‘There are several methodological strengthsof this study. Group sizes, although notlarge, were not unduly small. There wasa treatment manual that outlined boththe treatment techniques and the actual
content of treatment. Treatment givers
were all trained by the core staff andsupervised closely. Children were diagnosed
by professionals outside of the treatment
team prior to referral, and the first set offollow-up data were gathered by outside“So it’s not anywhere
near 10 to 20
percent of autistic
adults who are inpaid employment.
The number isconsiderably less,under 5 percent?”
Dr. Bassett:“Well, I’ll try and referto her material.”

That’s the context of which Rogers’ comment that you’ve
quoted was made, is it not?”Dr. Bassett:“If you’re quoting from it, presumably yes.”
Family Counsel:“Why didn’t you put that in to give some context? Reading
this —”
Dr. Bassett:“We quote extensively from Rogers and we actually make

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Chapter 9: BCOHTA On the Standalmost all the same points earlier in the discussion.”
Family Counsel:“Yeah, but you don’t attribute them to Rogers, do you?”Dr. Bassett:“Yes, we do.”Family Counsel:“’A very important
finding was thatin the treatedgroup, outcome
was predicted by
pretreatment mental
ages.’
That’s the context ... is
it not?”Dr. Bassett:“If you’re quoting
from it, presumably
yes.”

The line of questioning regarding the misrepresentation of Rogers’ comments
is emblematic of how the BCOHTA use the legitimacy of well-known experts
in the autism field to bolster their own agenda-based Lovaas report. It is
expected, even desired, that experts in any field will offer constructive
criticism regarding experimental designs. In fact, this is what moves any fieldforward; however, to take those comments out of context and present themas supporting a particular agenda is a completely different matter.

What Happened After BCOHTA Report Ruled Biased?
What happened to the BCOHTA report subsequent to a B.C. Supreme
Court ruled a supposedly “impartial” work of University of British Columbia
academics is “obviously biased?” Despite the ruling, nothing happened.
The directors of both the BCOHTA and the CHSPR (Centre for Health Policy
Research) did not “pull” the report; the Office still publishes it and the Ministryof Health still distributes it as though it were genuine academic research. The
Director of the CHSPR, who has jurisdiction over the Director of the BCOHTA,
did not get involved and attempt to restore academic legitimacy to the Officeof Health Technology Assessment by pulling the document or reining in his
people. Despite the B.C. Supreme Court finding of clear BCOHTA bias, theCentre for Health Services and Policy Research (CHSPR) at the University of
British Columbia (UBC) has done nothing to stop this biased publication frommaking its way around the world.
In fact, the opposite is true. The CHSPR is apparently proud of BCOHTA’swork. The 2000 Annual Report of the CHSPR describes as laudable the biased
research BCOHTA delivered to B.C. Supreme Court. The report states:

208

The line ofquestioning
regarding themisrepresentation ofRogers’ comments isemblematic of how
the BCOHTA use thelegitimacy of wellknown experts inthe autism field tobolster their own
agenda-based Lovaas
report.

“A recent major research effort has focused on early, intensive
behavioural therapy for children with autism, and in particularwhether such forms of treatment result in improved outcome
as compared with standard management. The assessment
was undertaken in parallel with proceedings in the BC
Supreme Court brought against the Province on behalf ofseveral autistic children in British Columbia. In the course of
the trial hearing, the Senior Medical Consultant of BCOHTA
was called to give expert evidence to the Supreme Court,
and provided two days of testimony. Full reports of thesestudies have now been published by BCOHTA, following
conclusion of the legal proceedings.”1
It is not surprising that neither BCOHTA or U.B.C.’s CHSPR mentioned thatthe result of the Senior Consultant’s testimony was that the BCOHTA work
was found to be obviously biased by a B.C. Supreme Court justice. Clearly
those uncomfortable facts have no place in an Annual Report touting theachievements of U.B.C.’s Centre for Health Policy Services and Policy Research.
In fact, by rejecting the B.C. Supreme Court’s opinion of their report, thebiased work has been tacitly given licence by U.B.C. to be widely disseminated— and it has been. The Report has been distributed across Canada and other
Health Technology Assessment analysts are basing new reports on it. It is
as though the Auton case never happened ­­— that is the degree to which
health technology has ignored this landmark B.C. Supreme Court ruling.
By working closely with Dr. Ken Bassett, first author of the BCOHTA, theCanadian Coordinating Council Office of Health Technology Assessment(CCOHTA) located in the nation’s capital, Ottawa, got involved in theevaluation of Lovaas Treatment. The BCOHTA is affiliated with the national
office and regularly conducts ongoing projects with them. The national
office created a much more sophisticated, and more formidable report toaddress the claims of parents of children with autism in Canadian courts.
This new autism report, relying significantly on the biased work of the
BCOHTA, illustrates the danger of poor health technology assessment
work. Significantly, Dr. Bassett’s name initially appeared on the Canadian
Coordinating Office of Health Technology Assessment’s Lovaas Treatment
document, but was later removed after the BCOHTA report was rejected by
B.C. Supreme Court (page 207).
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This report is a review of existing public literature, studies,materials and other information and documentation(collectively the “documentation”) which are available to
CCOHTA. The accuracy of the contents of the documentation
on which this report is based is not warranted, assured or
represented in any way by CCOHTA and CCOHTA does notassume responsibility for the quality, propriety, inaccuracies,or the reasonable of any statements, information or
conclusions contained in the documentation.2

The Report has been
distributed acrossCanada and other
Health Technology
Assessment analysts
are basing newreports on it.

CCOHTA Web-site in April 2000: BCOHTA’s direct involvement with the CCOHTA
Autism Treatment report dates to April 2000.

If health technology information used as input for the
CCOHTA is unreliable (largely because it is not in peerreviewed journals and funded by government), then why use
it? Why bother with disclaimers? The reason BCOHTA did not
submit its Lovaas report to a peer-reviewed journal may wellbe that sidestepping the academic peer review process madeit faster and enormously easier to deliver to government
the agenda-based conclusions BCOHTA’s MOH paymasterdemanded to win a court case on health-care spending on
autism. This is unfortunate because children with autism
need disinterested academics to perform genuine, honest
research based on scientific data, to determine true bestpractices. Children with autism are ill served by a national
health technology technocratic elite that generates biased,
substandard so-called autism treatment “research,” drafted
to defeat the legal challenges of families.
An important question must be considered: will the Canadian
Coordinating Office of Health Technology Assessment
eventually succeed in convincing a court outside British
Columbia of health technology’s supposed academic
legitimacy and purported “objectivity” or, will judges acrossthe country and around the world be wise to this biased
game played by encumbered academics? Hopefully, othergroups of families and their legal counsel will do with the
CCOHTA Report what was done with the BCOHTA Lovaas
Report in the Auton case — lay them bare and expose thetruth behind government funded advocacy research. Ifparents are not successful against health technology guns for

210

Chapter 9: BCOHTA On the StandThe final autism report published by the Canadian Coordinating Officeof Health Technology Assessment toned down much of the anti-Lovaas
rhetoric, possibly after they discovered that they had relied too heavily on thediscredited BCOHTA report. In addition to reliance on the BCOHTA Report, the
CCOHTA also relies on the Alberta Heritage Foundation Report (which itself
relies heavily on the BCOHTA Lovaas Report). Perhaps to shield itself against
further litigation (they have already been sued by a large pharmaceuticalcompany for another allegedly biased report), the CCOHTA simply added thisdisclaimer to page (i) of the report, Behavioural Interventions for PreschoolChildren with Autism:211

Part II: What Happened in the Supreme Court of British Columbia?

“CCOHTA does
not assume
responsibility for thequality, propriety,inaccuracies, or
the reasonable ofany statements,
informationor conclusions
contained in the
documentation.”212

disseminating reports in academic journals and throughweb-sites as well as enjoying sabbatical years in foreigncountries to share ideas with trans-national colleagues. We
have already seen the implications of the BCOHTA report in
the United States, Austria and Finland. The BCOHTA report
is now haunting parents of children with autism who arefighting for their children’s right to medically necessary
treatment against private health insurance companies in the
United States. Aetna, a large health insurance company in
the United States, uses the BCOHTA report and the Alberta
Heritage Report to justify exclusion of autistic children’s
treatment in Coverage Policy Bulletin Number 0554.3
Another large health insurance company — the Blue Cross
Blue Shield of Tennessee — writes in its Medical Policy
Manual that Applied Behavioral Analysis for the treatmentof autism is considered investigational and does not meettheir criteria.4 The BCOHTA report was relied upon in theirpolicy, effective in April 1st, 2002.
Not surprisingly, the BCOHTA has found a journal, theInternational Journal of Technology Assessment and HealthCare, Vol. 17, No. 2, April 20015 to publish their advocacy work.
In addition, the International Network of Agencies for HealthTechnology Assessment has issued a brief in 2001 writtenby the Alberta Heritage Foundation for Medical Research(who relied heavily on the BCOHTA report) to advertisethe availability of their paper.6 In order to disseminate thisbiased document outside of Canada and the United States,
the BCOHTA presented their work at the International
Society of Technology Assessment in Healthcare (ISTAHC)
17th Annual Meeting in Philadelphia in June 2001.7 This
international conference helped add the document to thehealth technology movement in Finland8 and Austria.9 At thistime, the Finnish web-site links the BCOHTA Report and theAustrian Health Technology web-site in their October 2001
newsletter; the BCOHTA, AHRMR and CCOHTA Reports are alllisted. In addition, the AHFMR is linked to the Austrian website. In short, parents in European countries are now going

Chapter 9: BCOHTA On the Standhire, then a disturbingly powerful precedent will be set andthe very real possibility exists that yet another generationof children with autism will be lost to autism — and not justin Canada.
Canadian Health Technology academics are, for the mostpart, internationalists, travelling to international conferences,

Aetna, a large healthinsurance company
in the United States,
uses the BCOHTA
report and theAlberta Heritage
Report to justify notcovering autistic
children’s treatmentin their Coverage
Policy Bulletin
Number 0554.

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214

Afterword

Afterword
B.C. Court of Appeal Ruling
Highlights of the B.C. Court of Appeal Judgment on
Autism Treatment
In October 2002, the B.C. Court of Appeal handed down a ruling in thelandmark Auton case that is further proof of government’s abject failure
to provide genuine Early Intensive Behavioral Treatment to children with
autism. The Court of Appeal decision not only validates the lower court ruling
but also goes further than the B.C. Supreme Court did in July 2000 when it
ordered government to fund bona fide, science-based autism treatment.
Three justices of the B.C. Court of Appeal were unanimous in supporting
the Supreme Court ruling that government’s failure to provide Intensive
Behavioral Treatment for children with autism constitutes direct discrimination
under the Canadian Charter of Rights and Freedoms. Moreover, and likely tothe chagrin of academics at the BCOHTA, the Court of Appeal agreed withthe lower court declaration that Early Intensive Behavioral Intervention is
medically necessary and must be funded by government, rejecting all costand other arguments posited by government’s lawyers. In addition, theCourt of Appeal went further in rejecting arbitrary age cut off for medicallynecessary autism treatment. Justice Saunders states:

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Government must
continue to fund“treatment in thenature of that which
they [the petitioners]
have been receiving”,
which is Lovaas
Autism Treatment.

Afterword[92] ...I would modify the order to direct that the four infant
petitioners are each entitled to government funded treatmentin the nature of that which they have been receiving..., if suchtreatment should still be useful to them. I would modify theorder to direct that the Crown fund such treatment, from thetime of the order declaring a breach of the Charter rightsof the infant petitioners (Auton No. 2), provided that thepetitioners establish the requisite usefulness by a written
opinion from the child’s family physician supported by awritten opinion from an appropriately qualified paediatrician
or psychologist, to continue until the medical view is that nofurther significant benefit in alleviating the autistic condition
can reasonably be expected from a continuation of thetreatment.1
This aspect of the Court of Appeal ruling is quite significant insofar as
government’s original purported remedy in the Auton case was designed
to stop at the geriatric age of six. Moreover, the Court of Appeal’s emphasis
on a medical team’s role in the determination of whether autism treatment
is of further benefit to a child represents a sea change in government
autism policy when adopted. However, the reality to date, despite two
court rulings mandating bona fide autism treatment, is that generic social
workers — untrained in medically necessary autism treatment — continue
to preside over funding decisions that determine whether a child is entitledto publicly funded, physician-prescribed autism treatment. In other words,
the inadequate social services autism paradigm exposed in the B.C. Supreme
Court proceedings as being wholly inadequate for medically necessary autism
health care, regrettably remains alive and well in British Columbia.
What is also important in the portion of the B.C. Court of Appeal ruling cited
above is that the government must continue to fund “treatment in the natureof that which they [the petitioners] have been receiving.” This means the court
views Lovaas Autism Treatment provided for the children in the lawsuit as an
Intensive Behavioral Treatment for autism it deems to be medically necessaryand has ordered government to fund accordingly. Simply stated, the B.C.
Court of Appeal has disallowed the government maneuver to strategicallyand willfully exclude Lovaas Treatment from the Auton remedy.

216

With respect to the conclusions of the BCOHTA that Lovaas-type autism
remains “experimental,” the B.C. Court of Appeal states:[85] The Court has ordered this treatment, because, under its
more generic name [Early Intensive Behavioral Treatment],
it is the only known form of effective treatment for children
with autism or ASD, the treatment having passed out of theexperimental stage.2

The contemptmechanism givethe B.C. Supreme
Court additional
power to force thegovernment tocomply with theruling.

This unambiguously sets aside government’s longtime refusal to fundLovaas on the grounds that the autism treatment protocol is purportedly
experimental and does not as yet enjoy adequate scientific validation tojustify its cost in public funding.
A key difference between the B.C. Supreme Court and the higher Court ofAppeal rulings is that the latter introduces an important mechanism by whichfamilies can take government officials before the court on contempt charges
if they continue to defy the Court order to implement medically necessary
autism treatment for children. The B.C. Court of Appeal states:[128] But if the process of enforcement requires the use of thecontempt power of the courts and if it is thought necessary
first to obtain an order in the nature of mandamus, then I
would think that the application for that order would haveto specify the public officer, by name or by office, against
whom the order is to be directed.
[129] I would affirm the continuing jurisdiction of theSupreme Court, in these proceedings, to entertain an
application for an order in the nature of mandamus against
a public officer, by name and office, if a direction to thegovernment is not complied with.3
What is highly significant here is that to fix government’s serious and deeply
entrenched constitutional failure — depriving medically necessary autism
treatment — the court enforcement mechanism of “contempt” can now
potentially be brought into play against senior government bureaucrats who
apparently reject the notion that Superior Court rulings can possibly apply

217

Science for Sale in the Autism Wars

to them or can impinge on their decision making discretion and delegatedauthority. The B.C. Court of Appeal has given B.C. Supreme Court authority
to compel intransigent government bureaucrats to abide by the Auton ruling.
This makes considerable sense given the track record; all indications thus far
show government has failed — and will continue to fail — to do what the
courts have ordered.
On May 15th 2003, the Government of British Columbia was granted leave
to appeal the B.C. Court of Appeal ruling to the Supreme Court of Canada.
Neither the lower court nor the B.C. Court of appeal has granted a stay ofthe effects of the Auton ruling which means that even though the Attorney
General has launched the Supreme Court of Canada appeal, government
remains duty bound to fulfill the court orders on autism treatment as directed.
As this book goes to press, the Government of British Columbia has yet tocomply with the judgment of the B.C. Court of Appeal.

218

References

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