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66–778PDF 2011

GLOBAL PERSPECTIVES ON AUTISM—A GROWING

PUBLIC HEALTH CRISIS

HEARING

BEFORE THE

SUBCOMMITTEE ON AFRICA, GLOBAL HEALTH, 

AND HUMAN RIGHTS

OF THE

COMMITTEE ON FOREIGN AFFAIRS 

HOUSE OF REPRESENTATIVES

ONE HUNDRED TWELFTH CONGRESS

FIRST SESSION

MAY 31, 2011

Serial No. 112–65

Printed for the use of the Committee on Foreign Affairs

(

Available via the World Wide Web: http://www.foreignaffairs.house.gov/

(II)

COMMITTEE ON FOREIGN AFFAIRS 

ILEANA ROS-LEHTINEN, Florida, Chairman 

CHRISTOPHER H. SMITH, New Jersey 

DAN BURTON, Indiana 

ELTON GALLEGLY, California 

DANA ROHRABACHER, California 

DONALD A. MANZULLO, Illinois 

EDWARD R. ROYCE, California 

STEVE CHABOT, Ohio 

RON PAUL, Texas 

MIKE PENCE, Indiana 

JOE WILSON, South Carolina 

CONNIE MACK, Florida 

JEFF FORTENBERRY, Nebraska 

MICHAEL T. MCCAUL, Texas 

TED POE, Texas 

GUS M. BILIRAKIS, Florida 

JEAN SCHMIDT, Ohio 

BILL JOHNSON, Ohio 

DAVID RIVERA, Florida 

MIKE KELLY, Pennsylvania 

TIM GRIFFIN, Arkansas 

TOM MARINO, Pennsylvania 

JEFF DUNCAN, South Carolina 

ANN MARIE BUERKLE, New York 

RENEE ELLMERS, North Carolina 

VACANT 

HOWARD L. BERMAN, California 

GARY L. ACKERMAN, New York 

ENI F.H. FALEOMAVAEGA, American 

Samoa 

DONALD M. PAYNE, New Jersey 

BRAD SHERMAN, California 

ELIOT L. ENGEL, New York 

GREGORY W. MEEKS, New York 

RUSS CARNAHAN, Missouri 

ALBIO SIRES, New Jersey 

GERALD E. CONNOLLY, Virginia 

THEODORE E. DEUTCH, Florida 

DENNIS CARDOZA, California 

BEN CHANDLER, Kentucky 

BRIAN HIGGINS, New York 

ALLYSON SCHWARTZ, Pennsylvania 

CHRISTOPHER S. MURPHY, Connecticut 

FREDERICA WILSON, Florida 

KAREN BASS, California 

WILLIAM KEATING, Massachusetts 

DAVID CICILLINE, Rhode Island 

YLEEM D.S. POBLETE, Staff Director 

RICHARD J. KESSLER, Democratic Staff Director 

SUBCOMMITTEE ON AFRICA, GLOBAL HEALTH, AND HUMAN RIGHTS

CHRISTOPHER H. SMITH, New Jersey, Chairman 

JEFF FORTENBERRY, Nebraska 

TIM GRIFFIN, Arkansas 

TOM MARINO, Pennsylvania 

ANN MARIE BUERKLE, New York 

DONALD M. PAYNE, New Jersey 

KAREN BASS, California 

RUSS CARNAHAN, Missouri 

(III)

C O N T E N T S 

Page

WITNESSES 

Mr. Andy Shih, vice president of scientific affairs, Autism Speaks .................... 5

Ms. Arlene Cassidy, chief executive officer, Autism NI ........................................ 12

Ms. Brigitte Kobenan, founder, Autism Community of Africa ............................. 21

Mr. Tom McCool, president and CEO, Eden Autism Services ............................. 25

LETTERS, STATEMENTS, ETC., SUBMITTED FOR THE HEARING 

Mr. Andy Shih: Prepared statement ...................................................................... 9

Ms. Arlene Cassidy: Prepared statement .............................................................. 14

Ms. Brigitte Kobenan: Prepared statement ........................................................... 23

Mr. Tom McCool: Prepared statement ................................................................... 27

APPENDIX 

Hearing notice .......................................................................................................... 54

Hearing minutes ...................................................................................................... 55

The Honorable Christopher H. Smith, a Representative in Congress from 

the State of New Jersey, and chairman, Subcommittee on Africa, Global 

Health, and Human Rights: Statement by Dr. Shekhar Saxena, director, 

Department of Mental Health and Substance Abuse, World Health Organization ..................................................................................................................... 56

(1)

GLOBAL PERSPECTIVES ON AUTISM—A 

GROWING PUBLIC HEALTH CRISIS 

TUESDAY, MAY 31, 2011

HOUSE OF REPRESENTATIVES,

SUBCOMMITTEE ON AFRICA, GLOBAL HEALTH,

AND HUMAN RIGHTS

COMMITTEE ON FOREIGN AFFAIRS, 

Washington, DC. 

The subcommittee met, pursuant to notice, at 2 o’clock p.m., in 

room 2172, Rayburn House Office Building, Hon. Christopher H. 

Smith (chairman of the subcommittee) presiding. 

Mr. SMITH. Good afternoon, everyone. And welcome to our witnesses and those who are joining us for this first ever congressional 

hearing examining the magnitude and the severity of the global 

public health crisis of autism. 

Autism, as I think more and more people are aware of, is a complex neurodevelopmental disorder that impairs a person’s ability to 

communicate and to relate to others. The condition is often associated with rigid routines or repetitive behaviors. Autism is a spectrum disorder that affects each individual differently. The types 

and severity of symptoms vary from case to case and range from 

mild to extremely profound. 

According to the Centers for Disease Control and Prevention, 40 

percent of children with autism spectrum disorder do not talk at 

all, and another 25 to 30 percent speak some words at 12–18 

months but then lose that speech. Autism occurs in all racial, ethnic and socioeconomic groups but on average affects four to five 

times more boys than girls. 

I actually became involved and immediately concerned with autism back in 1982, when I visited with Dr. David Holmes, the 

founder of Eden Institute, now Eden Autism Services, in Princeton, 

New Jersey. I am very pleased that Dr. Tom McCool, Eden’s current CEO, will tell us today how Eden is using its 36 years of experience to improve autism service programs around the globe. 

I became deeply involved—and even more so—in 1998, when a 

family in my congressional district, Bobbie and Billy Gallagher, 

told me of their concerns about a perceived explosion in the prevalence of autism cases in Brick Township. After that meeting, I requested that the Centers for Disease Control and the Agency for 

Toxic Substance and Disease Registry, or ATSDR, conduct an investigation, which revealed that the prevalence of autism in Brick, 

1 in 149, was indeed much higher than what was generally believed to be the prevalence. 

2

As a direct consequence of the Brick study and CDC’s admission 

that there were no recent prevalence studies in the United States 

with which to make a comparison, I introduced legislation to authorize grants for autism and pervasive developmental disabilities 

surveillance and to establish centers of excellence in autism and 

pervasive developmental disabilities epidemiology. This legislation, 

the Autism Statistics, Surveillance, Research and Epidemiology 

Act, or ASSURE, introduced in 1999, was incorporated into Title I 

of the Children’s Health Act of 2000, which also established the 

centers of excellence in autism research in NIH and created the 

Interagency Autism Coordinating Committee. 

To continue to monitor implementation of these new Federal autism programs, I established in 2001, along with my colleague Mike 

Doyle, the Congressional Autism Caucus to raise awareness of autism and provide a forum for advocacy within Congress. The Combating Autism Act of 2006 reauthorized the autism programs created by the Children’s Health Act, but also expanded the Act, calling for research into possible environmental causes of autism and 

creating an ‘‘autism education, early detection, and intervention 

program’’ to improve early screening, diagnosis, interventions, and 

treatment for ASDs. 

Just last week, I introduced, along with Mike, a package of three 

comprehensive autism bills: The Combating Autism Reauthorization Act, or H.R. 2005, which will ensure continuation of the important Federal autism programs for education, early detection, surveillance and research; the National ASD Initiatives Act, or H.R. 

2006, makes the HHS Secretary the head of the national autism 

effort and ties budget authority to the strategic plan for autism research; and the ASD Services Act, or H.R. 2007, which establishes 

grant programs to provide important research and services for children, transitional youth, and adults, and establishes training programs for service providers. 

I would note to my colleagues that on a trip to Lagos in Nigeria 

in 2007, which was designed to look at an issue that I also work 

very vigorously on—human trafficking—while there I met with Mr. 

Chiti Azuwa, the parent of an autistic child. Mr. Azuwa is the Executive Director of the 

Public-Private Partnership Resource Centre in Abuja, and his 

wife, Dr. Doris Azuwa, is the Executive Director of the OLG Health 

Foundation and Autism Centre in Port Harcourt. They told me of 

the large numbers of Nigeria, children suffering with autism, and 

the lack of government or other supports. 

As a result of my discussions with the Azuwas, I introduced in 

February of 2008, the Global Autism Assistance Act, or H.R. 5446, 

which directs the Administrator for the U.S. Agency for International Development to establish and administer a health and 

education grant program to support activities by nongovernmental 

organizations and other service providers focused on autism in developing countries and also establishes a Teach the Teachers Program to train health and education professors working with autistic children in developing countries. I will be reintroducing this legislation later this week. 

3

While this is a first of its kind hearing, I plan on scheduling additional hearings on this escalating health crisis and on the Global 

Autism Assistance Act when we introduce it later in the week. 

I would note the progress that has been made in recent years 

and increasing awareness, and particularly in some of the more developed countries in improving services and treatment for autism. 

However, I would note at the same time we must take seriously the 

World Autism Organization’s assessment that in every part of the 

world the situation for dealing with autism remains inadequate, 

even in those countries with considerable experience and understanding of autism, because the systems that have been established 

are being completely swamped by the number of people in desperate need of support. 

There are a wide range of autism prevalence figures between 

countries and individual studies. Here in the United States, CDC 

estimates that close to 1 percent of the population is affected by 

NASD. Autism Speaks, the Nation’s largest autism science and advocacy organization, describes a scientific consensus that 1 percent 

of the world’s population, or some 67 million people—I repeat, an 

estimated 67 million people—are affected with some form of ASD. 

According to the World Health Organization—and I will include 

their testimony and hopefully at a later date they will testify as 

well—but in their submission they note that ‘‘tens of millions in Africa are affected by autism.’’ Tens of millions. 

In that context, autism is a developmental disability pandemic. 

It is largely under-recognized, underappreciated in its impact, and 

under-resourced. Caring for individuals with autism often takes, as 

we all know, a very high physical, emotional, and economic toll on 

families and other caregivers. More severe forms of autism may 

multiply many times the level and intensity of required care. 

In developed countries, autism can overwhelm families, as their 

lives become consumed with the considerable challenges of identifying appropriate biomedical and psychosocial treatments, schooling, and other needed support systems for their autistic child or 

children and eventually for an autistic adult. 

In less developed countries, the situation is even more desperate. 

Very often there are no resources outside of the family to help. And 

rather than a diagnosis of developmental disorder, the child and 

the family may face cultural stigma and discrimination, pushing 

the family and the child further into isolation and desperation. 

We all know that early interventions are effective in improving 

the functionality of the child and that the positive outcomes from 

early interventions can last throughout the life of the individual. 

But very few children in Africa, for example, as well as in other 

developing countries, have access to such interventions. Even in 

more economically developed nations there are large disparities in 

the quality of care. Concerted actions are required to overcome the 

global challenges to effectively address autism and other developmental disabilities. We need to continue to help increase awareness 

of autism at all levels, and in all countries, to advocate for the inclusion of developmental disabilities in national and state health 

policies to increase the availability of quality of services across a 

continuum of care and across the life span, and to continue to supVerDate 0ct 09 2002 10:50 Nov 08, 2011 Jkt 000000 PO 00000 Frm 00007 Fmt 6633 Sfmt 6633 F:\WORK\AGH\053111\66778 HFA PsN: SHIRL
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port scientific research that will lead to more effective treatments 

and one day to effective strategies for prevention. 

The benefits of international collaborations and cooperation are 

multidirectional. In fact, I am looking forward to learn about 

Northern Ireland’s Autism Act of 2011 from Arlene Cassidy, CEO 

of Autism Northern Ireland. I am pleased we will have Ms. Cassidy 

join us today, and she will be speaking to us very shortly. I and 

the other congressional autism cochair, Mike Doyle, signed the 

memorandum of understanding with the Northern Ireland Assembly to share information to support common interests regarding autism. 

In addition to Tom McCool and Arlene Cassidy testifying today 

will be Brigitte Kobenan, founder of the Autism Community of Africa, and Dr. Andy Shih, vice president of scientific affairs for Autism Speaks. We are all looking forward to hearing the valuable 

perspectives that each of our witnesses brings to this discussion. 

And although they are not here today, I would like to recognize the 

Autism Society, who will testify at a later hearing, for their invaluable work in advocating on behalf of individuals with autism both 

within the United States and in the international community. 

I have been informed that Don Payne, who is our ranking member, is en route, will be here hopefully within a half hour to an 

hour. I guess he ran into some delays at Newark Airport. But he 

will be here and we will be joined by other members as the hearing 

progresses. 

I would now like to ask our distinguished witnesses to come to 

the witness table and I will begin with their introductions at this 

point. 

We will begin with Mr. Andy Shih, who is the vice president for 

scientific affairs at Autism Speaks. Autism Speaks, as I think 

many people know, is the Nation’s largest science and advocacy organization dedicated to funding research into the causes, prevention, treatments, and cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals and their families. Mr. Shih works closely with members of 

Autism Speaks’ board, scientific advisory committee, senior staff, 

and volunteer leadership to develop and implement the organization’s research program. He focuses on things that include genetics, 

environmental sciences, and epidemiology. He also leads Autism 

Speaks’ International scientific development efforts, including the 

Global Autism Public Health Initiative, an international advocacy 

effort that integrates awareness research and scientific development. 

I would note parenthetically, in 2005 and 2006, when the reauthorization was very much in limbo whether or not it would actually occur, Autism Speaks moved heaven and Earth to make sure 

that that legislation was enacted. And I congratulate you on your 

extraordinary advocacy. Senator Santorum’s bill, which did become 

law, and which passed both the House and Senate, obviously, was 

a great credit to your organization as to how well you helped to 

bring that about. So I congratulate you. 

We will then hear from Ms. Arlene Cassidy, who is the CEO of 

Northern Ireland’s autism charity known as AutismNI. She has 

specialized in autism spectrum disorders for 20 years and has proVerDate 0ct 09 2002 10:50 Nov 08, 2011 Jkt 000000 PO 00000 Frm 00008 Fmt 6633 Sfmt 6633 F:\WORK\AGH\053111\66778 HFA PsN: SHIRL
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vided the research, service development, and strategic lead for 

AutismNI, or Northern Ireland, in the development of an internationally acclaimed early intervention program for autism, including a catalog of academic research and published journal articles. 

She has also led the establishment of the charity as an accredited 

training agency, as well as an effective agent for social change 

through a community development and partnership ethos, which 

has provided the foundation for the charity’s family support services and an effective political lobby for a dedicated Northern Ireland Autism Act, which was signed into law in Northern Ireland. 

We will then hear from Ms. Brigitte Kobenan, who was born in 

Cote d’Ivoire and moved to the United States over a decade ago. 

In 2004, Brigitte’s first child Vinny was diagnosed with an autism 

spectrum disorder. Despite a well established life in DC, she and 

her husband moved their family to Phoenix, Arizona, so their son 

could receive the appropriate treatment for his condition. Vinny 

subsequently improved and was able to live a much better life. 

Back in Maryland, Brigitte founded the not-for-profit organization 

Autism Community of Africa in 2008 to create a platform to share 

her experience and help African families in need by providing them 

with information and resources. Brigitte also represented Cote 

d’Ivoire and was elected Mrs. Congeniality World 2008. This title 

has given Brigitte a rare opportunity to speak around the world 

about autism awareness in Africa. Thank you so much for being 

here. 

Then we will hear from Mr. Tom McCool, who is president of 

Eden Autism Services, a New Jersey-based nonprofit organization 

that works to improve the lives of children and adults with autism 

and their families. Eden Autism Services provides a range of community-based services to meet specific needs throughout the lifespan. Mr. McCool is also founding commissioner of the National 

Commission on Accreditation of Special Education Services and 

founding member and current vice chair of the National Association of Residential Providers of Adults With Autism. He served on 

the Medical Investigation of Neurodevelopmental Disorders’ Institute Advisory Board. He currently is a member of the Autism Society of America, and is serving as Treasurer of the National Association of Private Special Education Centers. He is also the chairman 

of the Board of Autism Services Group. I don’t know where he gets 

the time. 

Mr. Shih. 

STATEMENT OF MR. ANDY SHIH, VICE PRESIDENT OF 

SCIENTIFIC AFFAIRS, AUTISM SPEAKS 

Mr. SHIH. Thank you, Congressman Smith and members of the 

subcommittee, for this opportunity to share with you Autism 

Speaks’ global perspective on autism. I am Andrew Shih, vice president of scientific affairs at Autism Speaks, where I oversee the etiology portfolio, including research in genetics, environmental 

sciences, and epidemiology as well as lead our international scientific development efforts. I am a molecular biologist by training 

and have had the honor and pleasure of serving in the autism community for the past decade. 

6

As Congressman Smith mentioned, ASD transcends geographic, 

economic, and cultural boundaries. Current scientific consensus is 

that 67 million people, or about 1 percent of the world’s population, 

is affected with some form of ASD, a prevalence that is higher than 

AIDS, diabetes, and cancer combined. While there is currently no 

known medical cure for autism, behavioral treatment programs can 

be quite effective, particularly when diagnosis is made early and 

subsequent interventions are begun. This growing recognition 

around the need for better screening or treatment has led groups 

such as the American Academy of Pediatrics to mandated autism 

screening for all children between 18 and 24 months of age. The 

success in improving care in both North America and Europe also 

make it clear these approaches can be adapted and extended to 

countries around the world. 

Unfortunately, today, in most of the world, early autism diagnosis and intervention remain more an aspiration than reality. A 

major barrier to improving the health and well-being of families 

and individuals is the lack of expertise and capacity to diagnose 

this disorder and deliver appropriate interventions. Without expertise and capacity, solutions that improve the quality of life for individuals with ASD and their families remain out of touch. In many 

countries, there is little awareness and simply no autism service 

providers. As a result, affected children and families do not receive 

proper care and support, and opportunities for a better outcome 

and improved quality of life for the families are lost. 

To address this global public health challenge, in 2008 Autism 

Speaks launched the Global Autism Public Health Initiative, an 

ambitious international advocacy effort to provide support to other 

countries in order to enhance public and professional awareness of 

autism and to increase capacity to enable early detection and intervention as well as research. 

Built around the core value, of sense of urgency, scientific excellence, and the benefits to individual and families touched by autism, Global Autism Public Health Initiative, or GAPH, provides 

technical expertise and support to our partners to help realize their 

vision of progress. We collaborate broadly and inclusively with 

stakeholders at all levels, such as health and education ministers, 

expert clinicians and scientists, as well as parents and families, because we recognize the development and implementation of meaningful and sustainable program solutions require local leadership 

and ownership. 

GAPH’s strategies and content are continually informed by the 

latest research in clinical and dissemination science. In addition, 

experience we gained and the data we collected from GAPH programs will help us advance and refine autism science and inform 

future policy and service development. Indeed, benefits from 

GAPH-related activities are expected to reciprocal—with greater 

international collaboration there will be new insights into causes, 

including environmental factors, sociocultural influences on diagnosis and treatment, education, and service development—answers 

that will help affected individuals and families the world over, including those in the United States. 

Autism Speaks currently supports GAPH-related activities in 23 

countries on six continents, and these collaborations are already 

7

yielding impressive returns for our community both here and 

abroad. We have assisted countries like Brazil, Mexico, and Qatar 

in developing their own awareness campaigns and establishing recent collaboration with U.S. scientists. We are supporting governments like Albania and Ireland in their review and development of 

autism-related national health policies and programs. As an official 

NGO partner of the WHO, we are working with Geneva and a 

number of health ministries in Southeast Europe and Southeast 

Asia to develop and implement regional collaborative health networks focusing on awareness and training. In fact, Autism Speaks 

and the WHO are collaborating with the Bangladesh Prime Minister’s office as well as the Ministries of Health, Education and Social Welfare to host an international conference this July in Dhaka 

to officially launch GAPH-Bangladesh and to bring together likeminded stakeholders from India, Thailand, Sri Lanka, Bhutan, and 

Maldives to explore regional coordination and collaboration. 

Finally, the recently published first ever autism prevalence study 

in South Korea reported a stunning prevalence of 2.6 percent, with 

many previously unidentified cases found in the mainstream 

schools. In addition to the potential implications for environmental 

sciences research, the differences between the case-finding methodology used in the Korean study and the one deployed by the CDC 

to monitor prevalence in the U.S. raise important questions about 

the robustness of our statistics, and if we are actually underestimating autism prevalence in these United States. 

It is important to note that prevalence and other public data on 

autism that can guide policy and services development is not available for most of the world. By one recent estimate, over 90 percent 

of autism research is conducted on about 10 percent of the global 

community. By supporting GAPH-related activities and research 

like the Korean study worldwide, Autism Speaks is helping to 

bridge that knowledge gap, to inform policies and development, enhance the evidence base and, as a result, narrow the service gap. 

In South Africa, for example, we have funded a prevalence study 

in a region where AIDS is endemic to help establish basic public 

health statistics and explore the potential risk posed by a compromised immune system on brain development. Simultaneously, 

we are working with stakeholders from that country, including government officials, to develop consensus community priorities that 

will inform upcoming policy and program discussions with federal 

agencies. It is worth noting that one of the recurring themes we 

have encountered working with health officials in low resource 

countries like those in Africa is how best to prioritize autism and 

developmental disabilities when so many life-threatening diseases 

or conditions such as AIDS, malaria, and malnutrition compete for 

public health resources. 

While we understand that perspective, we believe that such public health policymaking is overly simplistic. As child mortality decreases, simple math predicts an increase in the number of children with developmental disabilities. So instead of seeing mortality 

and developmental disorders like autism as two distinct public 

health challenges, they should be tackled as part of the same problem. Autism Speaks and our partners around the world believe 

that by addressing autism and related disorders now, South Africa 

8

and other developing countries can get ahead of the curve, help 

maximize outcomes for affected individuals and families, and minimize long-term costs to society. 

In conclusion, the unmet needs of the global autism community 

mirror the daily challenges that are familiar to any individuals or 

families in this country struggling with autism spectrum disorders. 

By sharing our experience, expertise, and translating and adapting 

current best practices into feasible and sustainable health solutions, we believe we can make a difference in communities with 

less know-how and resources. Just as important, we can also learn 

valuable lessons from these collaborations that can help improve 

the quality of life of our families here. But we need help. Our work 

with WHO and other international partners have confirmed the 

power of collaboration in accelerating progress and speedy deliver 

of answers to our families. We welcome suggestions and recommendations about how perhaps we can work with other U.S. 

Government agencies to further our global effort. 

Thank you. 

[The prepared statement of Mr. Shih follows:]

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Mr. SMITH. Dr. Shih, thank you very much for your testimony. 

Again, thank you for the fine work Autism Speaks does not just 

here in the U.S. but around the world. 

I would like to now invite Arlene Cassidy, who is the 

CEO of Autism Northern Ireland, if she could provide us with 

her testimony. I would note she is speaking to us from the U.S. 

consular office in Belfast, Northern Ireland. 

Ms. Cassidy. 

Ms. CASSIDY. Good evening. 

Mr. SMITH. Thank you for being here. 

STATEMENT OF MS. ARLENE CASSIDY, CHIEF EXECUTIVE 

OFFICER, AUTISM NI 

[The following testimony was delivered via telephone.] 

Ms. CASSIDY. Thank you. Please let me begin by thanking Chairman Smith, Ranking Member Payne, and the members of the subcommittee for the opportunity to appear before you this evening. I 

hope that by the end of this evidence the subcommittee will look 

beyond the relatively short history—20 years—of the autism movement in our small country and recognize the huge steps taken over 

the last 4 years to address the issue of inequality and the legacy 

of neglect regarding service planning and funding that is our experience. 

In my written evidence, which was submitted last week, I referenced in some detail the impact that the troubles had in stunting 

the growth of social and economic development generally in Northern Ireland. Those decades of that particular civil conflict coincided 

with the birth and spread of the global autism movement, but that 

wave of autism awareness and knowledge passed us by. 

The progress regarding post-conflict reconstruction of Northern 

Ireland therefore has been a barometer of the fortunes of autism. 

In the 1990s, knowledge about autism swept in and was absorbed 

by families in the nonprofit sector, but government ownership was 

absent. The subsequent decade has witnessed the fledgling efforts 

of various government departments to plan strategically for autism 

alongside the establishment of the devolved Northern Ireland Assembly. 

The question is: Are we going in the right direction? And yes, 

this can be viewed as progress until one considers that planning 

has been limited to single government departments such as Health. 

Planning has not built upon the developments of the 1990s. Instead, the more proactive government role has resulted in existing 

services being deconstructed and innovative local research ignored, 

causing delay as new, untried models are set in place. Also, planning and liaison is more disconnected between the statutory sector 

and the nonprofit sector than ever before. 

The funding priority overall is still very low. Funding allocations 

are based upon an outdated placement of ASD within the learning 

disability budget. The result: ASD services are funded by money 

taken from the learning disability budget feeding back into the lack 

of services for people with ASD with an IQ score of 70 plus. 

The campaign for the Autism Act NI 2011 began in homes across 

Northern Ireland of families increasingly voicing their frustration 

about how the lack of dialogue and planning across government deVerDate 0ct 09 2002 10:50 Nov 08, 2011 Jkt 000000 PO 00000 Frm 00016 Fmt 6633 Sfmt 6633 F:\WORK\AGH\053111\66778 HFA PsN: SHIRL
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partments was seriously impacting upon their lives as support 

across the various life transitions, so challenging for individuals 

with autism, failed and failed again. 

The campaign for the Autism Act began in the hearts and minds 

of parent activists increasingly aware that at the core of all the 

flawed planning and absent funding was a fundamental inequality. 

ASD was not recognized or clearly defined in disability legislation 

in the United Kingdom, resulting in all decisions regarding service 

and benefit entitlement that are based upon disability legislation 

being open to interpretation, rejection, and inconsistency. This 

campaign united families and nonprofit sector and public representatives at a period in our political history when the art of lobbying political institutions was in its infancy and lobby agencies 

were nonexistent. A democratic lobby of the people has been created. So we made an impression—and we had to—because the status quo was against us. Few public servants understood the need 

for change and therefore they opposed it. 

The campaign gained momentum in 2006, encouraged by developments in Wales, where the Welsh Assembly government invited 

Autism Cymru, the autism society of Wales, to unite the public and 

nonprofit sectors in planning for ASD across government departments. Within the U.K. and across the world the call for national 

strategies and/or legislative social change was getting stronger. The 

creation of the Celtic Nations Autism Partnership and the 2007 

delegation to Washington, DC, to meet with the cochairs of the Autism Caucus was part of that movement. 

It was no accident therefore that the Autism Act is rooted in the 

realities of our society. It is unique to our situation and encapsulates the aspirations of families here. Yet it is an example of one 

mechanism that is available to many societies and in addressing 

fundamental human rights and inequalities when the state is resistant. And that is legislation. 

There is little doubt that the changes brought by the Northern 

Ireland Assembly regarding clarification of the definition of disability will reverberate across the other jurisdictions within the 

U.K. And the Republic of Ireland. As the Autism Act (Northern Ireland) initiates legislative change beyond its own jurisdiction, what 

a compliment to the journey we have traveled. 

The next steps at home are crucial. As the Northern Ireland executive agrees the implementation phase for the Autism Act, we 

must ensure that the lessons of the past are well learned and that 

families living with autism are not disenfranchised again. There 

has never been a budget or cost center for autism across government departments because well, ‘‘Why budget for a condition that 

doesn’t exist in Northern Ireland?’’ And when there is no data, 

there is no problem. This will be the greatest challenge—finding 

the budget, quantifying the need. 

The Autism Act is our hope. Above all, it is evidence that we 

have citizens with autism who can no longer be ignored. 

Thank you. 

[The prepared statement of Ms. Cassidy follows:]

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Mr. SMITH. Ms. Cassidy, thank you so much. If you could hang 

on for a few moments perhaps to answer some questions. I want 

to again thank you for the work that you have done with the AllParty Caucus, which works so closely with our own caucus here. 

The more we collaborate, share best practices, and learn from your 

new Autism Act of Northern Ireland 2011, the better. We can all 

borrow best practices and hopefully put them into law and policies. 

So thank you so very much. 

I would like to now ask Ms. Kobenan if you would proceed. 

STATEMENT OF MS. BRIGITTE KOBENAN, FOUNDER, AUTISM 

COMMUNITY OF AFRICA 

Ms. KOBENAN. Thank you, Congressman Smith and members of 

the subcommittee, for the opportunity to share with you my experience in dealing with autism in Africa. 

My name is Brigitte Kobenan, founder of the Autism Community 

of Africa and a mother of a child with autism. In 2007, after being 

invited on the Voice of America television to talk about autism in 

Africa, I was contacted by a young lady from Nigeria. She was asking for help because she recognized the symptoms of autism that 

I had talked about on the show and she was convinced that her 

brother has autism. But she was more alarmed by the treatment 

that he was receiving. He was tied on a tree and beaten with a 

stick to ‘‘chase the evil out of him.’’

A lady from Cote d’Ivoire contacted me because her sister was on 

the verge of depression. Her niece had a severe case of autism, but 

had no help. With the cultural stigma labeling her daughter as a 

bad omen and the constant challenge and lack of sleep in raising 

her daughter, the mother ended up in a mental institution. 

Another concerned sister from Atlanta, Georgia, contacted me because her sister in Ethiopia was exhausted. Her sister was looking 

for something, anything, that could help her deal with her daughter’s autism condition. We can say with caution that through the 

years, the awareness for diseases like HIV/AIDS, malaria, and malnutrition has reached a great deal of maturity in Africa and around 

the world compared to autism. 

A Minister of Health in an African country, which I will not 

name for privacy, once told me, ‘‘What is autism anyway? Why 

don’t you do malaria? Everybody knows malaria.’’ My point exactly. 

Everybody knows malaria. 

Not to minimize these issues in any way, but what do we do after 

children are feeling better from malaria, malnutrition, or receive 

treatment for AIDS, but still have autism? 

In Africa, children with autism are a burden for most families in 

society due to the lack of awareness, education, and proper treatment. They need to be given the necessary tools to care for themselves. Autism can be treated. My son is living proof. Vinny was 

nonverbal until the age of four. After receiving his diagnosis, my 

husband and I, as the Congressman said earlier, began an uphill 

battle. We moved to Phoenix and we began an uphill battle that 

every family with autism faces. It was hard, frustrating, and sometimes brutal. But we had to stay calm and keep going because we 

knew that our failure as parents was not an option. Vinny was 

lucky enough to be born in the United States of America, where he 

22

was able to get the treatment that he needs. The infrastructures 

are there, so we as his parents had no excuse to fail him. 

Today, at 11 years old, even though he is a little different from 

his peers, Vinny is self-sufficient and he is in mainstream school. 

He is doing well, according to his IEP, Individual Education Plan. 

Sometimes during our conversations he gives me the magic phrase, 

‘‘Mom, you just don’t understand,’’ complete with the attitude to go 

with it. I smile and give thanks to God for living in this great country. But my joy is bittersweet because I think about all the children 

and families with autism in Africa, and I shed a tear. 

These children in Africa are not so lucky. There are no infrastructures to help them. Doctors don’t have the equipment necessary to diagnose the problem and there is no follow-up program. 

As of now, a few NGOs in countries like Nigeria, Cameroon, South 

Africa, and Ghana, are struggling to take on the challenge. These 

NGOs were created mostly by parents who were frustrated by the 

lack of infrastructure to help their children. But they are faced 

with a variety of challenges—lack of funds, lack of support from 

the government, fear from families to show their evil child with autism, et cetera. A mother told me once, ‘‘If I show my son to you, 

what are you going to do for him?’’

And this is the reality on the field. These kids are hidden. Parents are afraid to show their children with autism because they 

know that there is nothing that can be done for them. They think 

that they will just expose the child for nothing. They do not have 

any hope. They do not feel protected. And I think that the local 

government, by collaborating with NGOs and families, will help 

bring them a sense of security. 

Throughout my work and experience with ACA, I had the opportunity to meet many families with children with autism as well as 

decision-makers in the United States and around the world. One 

of the main obstacles I observed with regards to the Africa continent is the lack of political will. For any program to be successful, 

leadership and ownership is required, among other things. But the 

majority of the leaders and stakeholders on the local level in Africa 

are either misinformed or just not interested in the subject. Again, 

to think that a Minister of Health asked me the question, ‘‘What 

is autism anyway?’’ Just imagine the level of knowledge among the 

population. 

One other great challenge is poverty. Many families do not have 

the means to see a doctor, let alone care for a child with special 

needs. And for those who can afford it, well, there are no resources. 

Hence, the importance of autism awareness campaigns in Africa, as 

well as care. 

Thank you. 

[The prepared statement of Ms. Kobenan follows:]

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Mr. SMITH. Thank you so very much. 

We are joined by the distinguished gentlelady from New York, 

Ms. Buerkle. 

Ms. BUERKLE. Thank you, Mr. Chairman, and thank you for 

holding this hearing on an issue that has significant global health 

implications. 

Autism can be difficult to diagnose, but even harder to understand, especially for those who have no personal acquaintance with 

the disease and the disorder. Autism is no respecter of persons. It 

reflects all racial, ethnic, religious, and socioeconomic groups. Regardless of whom it affects, autism is a heavy burden for families 

who have a child with autism. 

But there is hope. Modern medicine has seen the development of 

new treatments for autistic children. Early intervention is key. Autism no longer has to be a barrier to the future successes and fulfillment of those affected by autism. 

With the increasing prevalence of reported cases of autism, this 

hearing is indeed timely. And I am glad we will have additional 

hearings on this topic. 

Thank you, Mr. Chairman. I yield back. 

Mr. SMITH. Thank you very much. 

I would like to now yield such time as he may consume to Mr. 

McCool. 

STATEMENT OF MR. TOM MCCOOL, PRESIDENT AND CEO, 

EDEN AUTISM SERVICES 

Mr. MCCOOL. Congressman Smith, thank you for inviting me to 

participate in this dialogue on the global aspects of autism. 

As you mentioned, Eden Autism Services started in Princeton, 

New Jersey, 36 years ago. During that time, our organization has 

gained a great deal of knowledge and experience in addressing the 

needs of children, adults, and families impacted by autism. All of 

us in the autism community recognize that there is a lot to be done 

and each of us has a role to play. In its short history, Autism 

Speaks has been able to significantly increase awareness of autism 

and its impact on families. They have also been extremely successful in raising funds to support its awareness activities and also 

support autism research projects. 

In recent months, Autism Speaks has begun to focus on the 

plight of adults with autism, particularly looking at the broad 

range of residential and employment programs needed to support 

this growing population. The Autism Society, another one of our 

partners, has a long history of bringing family members and professionals together nationally and through their local chapters. They 

annually present successful program models that can benefit a 

broad range of needs for children and adults with autism. The Autism Society financially supports training programs for teachers 

and direct care professionals working in the field of autism. 

Eden has not yet had the opportunity to work with the Autism 

Community of Africa. However, several Eden professionals have 

visited Africa to work with families dealing with autism. Eden provided family and staff training and the Eden curriculum. 

The role Eden Autism Services plays in this arena is the direct 

service delivery component—that interaction between a person 

26

with autism and those teachers, family members, and other professionals that follow a prescribed scientifically based treatment 

methodology. Eden does this in its schools and adult residential 

and employment programs and works with other direct service providers across the country to duplicate this treatment wherever 

needed. 

There are two basic components to this process. The first component is the treatment model. In 2009, the National Autism Center 

issued its national standards report that emphasized the importance of evidence-based practices and the need to ensure that research-based treatments are given the priority over those that have 

not yet been proven effective or those that research has shown to 

be ineffective or worse. 

The second component is the autism-specific curriculum, the 

teaching content that promotes the acquisition of knowledge and 

skills that support the person with autism’s ability to function in 

society. Eden has developed an autism-specific curriculum that is 

used in both public and private schools across the United States 

and several other countries. 

Eden Autism Services and the thousands of direct service providers across the country provide that intensely personal interaction between teacher and student, using treatment models and 

lesson plans to decrease and eliminate inappropriate behaviors and 

increase the capacity for children and adults with autism to live as 

productive citizens in society. Eden has acquired expertise in teacher training, family training, and direct care training, using applied 

behavior analysis in addressing problem behaviors exhibited by 

children and adults with autism. We have developed a curriculum 

that contains hundreds of specific lessons that can be used effectively by teachers, families members, and direct care staff. 

Our goal is to share the knowledge and experience Eden Autism 

Services and many other direct services providers have developed 

to improve the quality of life of children, adults, and families impacted by autism, wherever they are. The information is available. 

The technology is available. And our hope is that we will be able 

to find a way to share this knowledge and bring help to those children, adults and families impacted by autism in other countries 

where such help does not exist. 

One thing I wanted to mention that we have gotten involved in 

most recently that has significantly enabled us to directly impact 

more children with autism, and it is a social networking network 

called edWeb. EdWeb builds communities where different types of 

educators or different categories of educators are able to directly 

connect with one another. So Eden has hosted the autism community on edWeb, and it is a way for teachers who are working directly in classrooms with children with autism to connect with one 

another and deal with very specific issues. An e-mail e-blast goes 

out to everyone on the network and a question is asked how to deal 

with a specific issue, and an immediate response is taken. EdWeb 

is available. It is on the Internet. It is something that could be very 

valuable beyond the borders of our country. So we are looking forward to working with our partners and to take the knowledge that 

we already have and find ways to get that knowledge and experience to those who really need it. 

27

Thank you. 

[The prepared statement of Mr. McCool follows:]


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Mr. SMITH. Thank you very much for your testimony and for the 

great work Eden has done for all these decades. At least for this 

member, and I know for many other lawmakers, including our Governor, Eden has been transformational for us in helping us to understand this devastating disability. So thank you so much for the 

great work you have done. 

Let me just begin the questioning. I will start with Mr. Shih, if 

I could. 

You spoke of the Global Autism Public Health Initiative which 

you began in 2008. I know that WHO began a six-country pilot program in 2008 as well. I am wondering what kind of collaboration 

your organization is having with the World Health Organization, 

and if you could, what are the biggest challenges? We just heard 

from Ms. Kobenan that when she and others speak to health ministers—and I raise this myself every chance I get in Africa and 

elsewhere—the knowledge base is so rudimentary and so lacking as 

compared to other pandemics, including HIV/AIDS, malaria, tuberculosis, which need proper resourcing, but it seems as if you—and 

I think you offered a very clear way forward—that we need to see 

this as the other side of the coin in mitigating child mortality. As 

that improves, obviously this will exacerbate and get worse unless 

we address it. 

So if you could speak to the Global Autism Public Health Initiative, maybe elaborate for us on that. Also, if you might speak to 

where we are now in terms of getting to the root cause of what is 

triggering autism. I know it is always controversial. I will never 

forget in 1998 when I first proposed the Brick study and introduced 

the ASSURE Act. Some very well-meaning person from the Centers 

for Disease Control got up in my face literally and put her finger 

in front of my face and said, when I mentioned vaccinations as a 

possible—maybe multi-vaccinations; thimerosal was also something 

people were concerned about and perhaps still are—but it was like, 

‘‘Don’t go there.’’

I would say for the record that I am a very strong advocate of 

vaccinations. I was the sponsor of the amendment that doubled the 

amount for the Child Survival Fund from $25–50 million in the 

early 1980s. I was in El Salvador when they immunized upwards 

of 2,000 kids against polio, diphtheria, pertussis, and other leading 

killers of children. So vaccinations are very, very important in combating disease, and especially preventing it. But there should not 

be an acceptable collateral damage, if there is, particularly with 

multi-dosing, perhaps five or six at a time, where a little body cannot metabolize that. 

So if you can perhaps speak to that as well. 

Mr. SHIH. Thank you, Mr. Chairman. First, to address your question about the Global Autism Public Health Initiative. We are an 

official partner with the WHO. Their mandate is a little broader 

than Autism Speaks. Their focus is on child mental health and disability, including autism. We saw our relationship as one where the 

AIDS community has come together with the international AIDS 

agencies and health agencies to address the tremendous public 

health challenge with HIV infection. As a result, even though the 

focus is on HIV or AIDS by these groups, I think it can be argued 

that they have benefited by the research overall globally. And we 

32

see a similar kind of relationship with WHO relative to autism and 

their child mental health priorities. 

So the six pilot programs that you mentioned recently launched, 

we are in discussion about where we can be most helpful. We are 

part of a discussion ongoing at the Institute of Medicine, the Neuroscience Board, talking about how do we address mental health 

and developmental disability needs in the sub-Saharan Africa. So 

that is still in discussion. My expectation is that activities with 

these pilot projects will be launched in the next 6–9 months and 

our expectation is to be at least part of some of those efforts. 

Indeed, the bigger challenge, I think, in addition to capacity and 

expertise, really is awareness. As Ms. Kobenan mentioned, at the 

country leadership level often you run into individual ministers 

and more highly-placed officials who know next to nothing about 

autism. That makes the challenge of helping the families even 

more difficult. 

What Autism Speaks does on a yearly basis now is that around 

the time of the United Nation’s General Assembly we organize an 

awareness event for the first spouses of the world’s leaders. We 

bring them in, show them a little bit what we know about what 

is happening in autism worldwide, and we ask for their help. This 

year actually we are going to be working with WHO. So that in addition to engaging the first spouses from around the world, we are 

also able to bring in the Ministers of Health in these countries so 

that there will be a more immediate connection from the good will 

generated by the country leadership and the public health official 

of that country. So we are optimistic that going forward we will be 

able to bring a higher level of awareness to public health officials, 

education officials, as well as leadership from around the world. 

It is actually a very exciting time for autism. I think over the 

past 4 or 5 years there has been a tremendous amount of advancement made in terms of the understanding of the causes of autism. 

I think it also has been and remains the case that autism is like 

diabetes, cardiovascular diseases. It is a complex disorder that involves genetic predisposition as well as potentially environmental 

factors. In recent years, we have learned a lot more about the genetic architecture of autism. We understand where the problems 

are, where in the biological system that goes wrong that results in 

autism. And that has given us a foundation in which we can explore both development and interventions as well as environmental 

factors, interactions. 

So we have now started to partner with industry as well as other 

Federal agencies, including NIH, to delve more deeply into the 

causes of autism and what can we do to turn this knowledge into 

meaningful applications and solutions for individuals and families 

affected by the disorder. We are also working with industry as well 

as public agencies to take best practices and to disseminate them 

broadly because we do know things like behavior intervention as a 

result of the diagnosis do work and do help many individuals and 

families affected by autism. But the challenge has been to disseminate these best practices in every corner of this country as well as 

the world. 

Mr. SMITH. You mentioned working with NIH. I have met with 

Dr. Shah twice, the head of U.S. Agency for International DevelopVerDate 0ct 09 2002 10:50 Nov 08, 2011 Jkt 000000 PO 00000 Frm 00036 Fmt 6633 Sfmt 6633 F:\WORK\AGH\053111\66778 HFA PsN: SHIRL
33

ment, and stressed with him the importance I think of USAID, 

with its multiple missions overseas, especially in Africa, to initiate 

an autism initiative within the department. I am wondering, have 

you had collaborations with them? Same way with Dr. Frieden 

internationally with CDC. Are they also looking to dedicate and 

prioritize autism at those two agencies? 

Mr. SHIH. Sure. I think global health is a priority at NIH, and 

we are fortunate to be able to work with the National Institute of 

Mental Health and CHHD, Child Health and Human Development, 

for instance, in this area. CDC similarly has an interest, often globally, in an international research network that Autism Speaks developed called International Autism and Epidemiology Network, 

which was actually codeveloped with the CDC and right now includes over a hundred researchers from 30-plus countries. 

I think USAID and other agencies, certainly we will welcome an 

opportunity to work with them. We have approached USAID previously. Understandably, at that point autism was not one of their 

priorities. But we certainly look forward to revisiting that opportunity and to work with the agency. 

Our sense is that from our travels and conversation with stakeholders around the world is that it is a highly respected agency and 

their work has had tremendous impact on the population around 

the world. And we would love to be a part of that. 

Mr. SMITH. You were diplomatic in saying it is not among their 

priorities at USAID. Is it even on their agenda? 

Mr. SHIH. I believe so, but I think it is a matter of prioritization; 

yes. 

Mr. SMITH. I appreciate that. 

Finally, you mentioned South Korea, at 2.6 percent, which seems 

extremely high. Is it better prevalence studies or is there something that may be triggering autism among South Korean children? 

Mr. SHIH. Right. I don’t think we have a simple answer at the 

moment. I think this study has set the stage for more elaborate investigation looking into the possibility of environmental factors. 

But what is clear is that the Korean study employed a methodology 

that is more comprehensive than is being used here in the CDC. 

Specifically, the Korean investigators actually went into the general schools, the mainstream schools, trying to identify the children 

who might have been missed. Shockingly, stunningly, if they look 

at just the special schools, as we do here, the prevalence is about 

the same—8.9 percent. But the mainstream schools they found almost 2 percent—almost 2 percent of kids not previously detected 

and served by the community. 

So I think the lessons here from our perspective is that we 

should think about using perhaps more robust methodology so we 

can get a more accurate reflection of what is going on in the United 

States. 

Mr. SMITH. I yield to Ms. Buerkle.

Ms. BUERKLE. Thank you, Mr. Chairman. I just wanted to follow 

up on the question on methodology. It sounds like our method just 

goes into special schools, not into the general population of children 

in schools. Is there anything else that is different between how we 

conduct our research? 

34

Mr. SHIH. I think that is the main difference. I think what we 

are encouraging people to do now is to try to do case finding in a 

more comprehensive manner, the way we have done in South 

Korea, because what I think about when I think about the Korean 

study is not necessarily the high prevalence in South Korea, even 

though that is very important; I think about the individuals and 

families who have not been officially diagnosed who may be struggling through schools, dealing with all the issues that they are 

dealing with, with little assistance at this point. I think we as a 

society, as a community, are in a position to do something about 

that. We have the resources, we have the means. 

Ms. BUERKLE. Thank you. 

Mr. SMITH. I will return to our distinguished gentlelady from 

New York. 

Just a few more questions. 

Ms. Kobenan, you mentioned the cultural stigma labeling that 

daughter as a bad omen. I would note parenthetically I was recently in Nairobi and met with some neurosurgeons who were 

working on treating Africa children with hydrocephalic conditions. 

In one case, I was told how in Uganda, children who develop water 

on the brain, which is terrible and lethal, unless there is an intervention, hydrocephalic condition, are often seen as a bad omen or 

something along those lines. 

I am wondering what can be done to dispel that very dangerous 

myth which leads to these children being ostracized. When I was 

in Lagos on that trip when I met with Chiti, he said that some of 

these children in Nigeria are just put aside and they are allowed 

to die because they are thought to be contaminated or possessed or 

some terrible condition rather than have a physical developmental 

disorder that with the right interventions could be greatly helped. 

If you could. 

Ms. KOBENAN. On this issue, that is what ACA is doing. We are 

trying our level best to take on the awareness. The most important 

part is letting people know what is going on, that the children are 

not bad omens. So communication is the key. And the way to communicate in Africa—most countries in Africa—is using the media—

TV, radio, and even having social workers going from school to 

school or villages to villages and having forum. What we call forum 

is they know that this person is coming from this government 

health department talking to the village and they will come to a 

public place and the person will talk to them. 

So it is organizing a small group of leaders that can go to these 

places, families and villages, and talk to them and say it is okay 

to come out. You do not need to hide your child. Your child is not 

a bad omen. 

In my case, just to wrap up, the lady went to see my mom when 

I was on TV and I was talking about it. She was so touched she 

went to see my mom. She had a 19-year-old daughter that she has 

been hiding all along. And she said that because of your daughter 

I can bring her out and I am not ashamed to show my daughter. 

So communication is the key. TV, radio, and everything like that. 

Mr. SMITH. Mr. McCool, you were at a World Congress Autism 

Conference in South Africa in 2006. Was that issue addressed particularly for the sub-Saharan African context, and could you just 

35

elaborate on the buy-in? Were there health ministers there? Was 

it a robust participation? Was it what you expected? 

Mr. MCCOOL. No, it was not. Actually, it was a little disappointing. We did have—it was part of the World Autism Conference. There were people from about 53 countries represented. 

One of the things that we tried to look at was what was available 

in that part of South Africa. We didn’t go through the entire country. And we found that many of the children were leaving home or 

being taken from the home to get the proper educational programming because they couldn’t get served and the families were resistant to recognizing that autism was something that could be treated 

in a positive way. We actually visited a school, a nearby school, 

that had about 100–150 children who were basically educated out 

of the home because of this issue. 

Mr. SMITH. I know that Eden is involved in Singapore, developing curriculum, Philippines, Canada, Israel, South Africa. Could 

you, you know, tell us, what is Eden doing vis-a`-vis these countries. 

Mr. MCCOOL. Yeah, these are very specific, focused activities 

where we are contacted by someone. Often, we have groups that 

travel through the U.S. to look at model autism programs and will 

visit Eden among the programs that they look at. 

What we found is that they really look at behavioral interventions as the priority for autism. And so, applied behavior analysis 

is something that has demonstrated effectiveness in people, want 

to learn how to be trained, and to train direct care workers and 

families in how to apply applied behavior analysis. 

What we find is, they are so focused on the behavior that they 

fail to bring content into the equation. And so, in many cases, they 

are not teaching specific skills. And so what we have tried to do 

is to pair the curriculum with the behavioral training. 

And Anne Holmes, who runs Eden outreach services, through 

technology now can observe classrooms and teacher interactions 

anywhere in the world and has done so. And so she can actually 

watch the behavior, consult with the teacher or the family and, sitting in Princeton, New Jersey, really provide that kind of support 

to anyone anywhere in the world. 

The only other obstacle we have is language. You know, our curriculum is in English. We have made several attempts to have it 

translated into other languages. Right now it is in the process of 

being translated into Hebrew. But all of the people we have worked 

with thus far have been able to navigate with English. 

Mr. SMITH. Ms. Cassidy, you mentioned the 500 percent increase 

in diagnosed autism cases in Northern Ireland since 2002. Can you 

tell us to what you attribute this increase? 

And, secondly, you note the 2011 Autism Act for Northern Ireland is among the most progressive and, I think, enlightened pieces 

of legislation anywhere in the world. Are there recommendations 

that you might have for us on how we could improve our efforts? 

And, of course, that might be replicated elsewhere. 

And, finally, you also point out that the troubles in Northern Ireland—and I would note parenthetically that we actually had 11 

hearings in this subcommittee on the troubles in Northern Ireland, 

so we are very well-acquainted with what turmoil you have been 

through—but we hear it all over the world, especially in some of 

36

the places in Africa, Cote d’Ivoire is obviously going through its 

own problems right now, and we are told that the autism resource 

organization in Cote d’Ivoire has shut down during the crisis. So, 

again, kids are put on hold while political problems deteriorate into 

violence. 

So if you could speak to some of those setbacks. And, you know, 

there needs to be almost like a separate focus on, what do we do 

in conflict areas. You know, there needs to be some awareness that 

the needs, and special needs at that, of an autistic child do not go 

away with political turmoil. 

Ms. CASSIDY. Thank you. 

Well, starting with the 500 percent increase, I think that—yeah, 

all the queries just tie in together—I think that reflected a catchup. You know, no data collection had taken place, and then all of 

a sudden one of our Government departments decided to do some 

data collection with school-age children, so there was a captive audience in the local school population. And then, a number of years 

later, they kept on that data collection. So that is really all we have 

to go on. 

And I really know that, in 2002, even when the original report 

was done, they talked about an autism wave traveling through the 

school system in Northern Ireland, so they knew there was a tip 

of the iceberg going on here. But I think I would attribute it to just 

really the way it has happened worldwide. It is exactly the same 

issues as you are picking up on. It is about increasing awareness, 

increasing expertise in identifying and diagnosing the condition. 

You know, I do believe that there are a lot of questions to be 

asked about environmental factors. So we are just in the mix with 

everyone. I don’t think there was anything particular to Northern 

Ireland except for the fact that there was, until 2002, no baseline 

information gathered. Then there was the baseline information 

that 900 children were identified in Northern Ireland, school-age 

children, with autism. And then, a number of years later, when the 

same exercise was carried out, the figure they come up with was 

4,000 children, almost 5,000 children. 

So, data collection, you know, has been a huge issue in Northern 

Ireland. Various services are starting to collect some data, but the 

data is non-transferrable. The information is usually particular to 

that service, to child health or to education, and the departments 

haven’t been exchanging the information. And that is one of the 

really, you know, good things about the legislation that has come 

about, because within that legislation there is a requirement for all 

government departments to agree to communicate over data that 

they are collecting and to develop a common language so that they 

can plan within single departments and across departments. 

I would be extremely humble with regard to our legislation. We 

are tremendously excited about it because we come from such a low 

baseline. And we believe that we have addressed a core difficulty, 

and that is the whole inequality issue. It was one of those, you 

know, ‘‘eureka’’ moments that we had when we looked at our own 

disability legislation and realized that it was out of date. I know 

that in England they updated their disability legislation and created the English Equality Act, but some of the other devolved jurisdictions within the U.K. did not. 

37

And, in Northern Ireland, I think we looked at it, you know, initially, probably first, discovered that the legislation was out of date, 

that it didn’t make allowances for the interpretation of autism 

within the definition of ‘‘disability,’’ and, therefore, that needed to 

be changed. So that is one of the things that is really exciting 

about the new legislation, as well. 

So, in short, the new legislation, for us it really recognizes autism for the first time within disability discrimination legislation 

and protects citizens with autism and gives them a voice and gives 

them a possession. 

The other thing that came up with the legislation was the need 

for a cross-departmental approach to autism, a government approach to autism. And with our particular—we have, as you know, 

particular challenges with the mandated coalition system in the 

Northern Ireland Assembly, where various government ministers 

are in place from various specific political parties. And their policies may or may not agree, so policies and individuals bump into 

each other from time to time. So it was quite something to get uniform agreement. 

So I think this legislation, to my knowledge, is the first Northern 

Ireland legislation that requires our Government ministers to work 

together on an issue, and that issue being autism. So that is another first, if I am correct, that is another first for this legislation. 

As I say, in the legislation it requires data, but it also requires 

the government to fund the first autism awareness campaign. And 

I agree absolutely with your previous speakers. I think one of the 

greatest challenges for autism throughout the world is knowledge. 

Ignorance is the greatest enemy; arrogance, too. 

And, you know, I think with the situation in Northern Ireland, 

I think it comes back to your third point, the particular—in conflict 

situations, I think parents are paramount. This legislation would 

never have come about in Northern Ireland if it hadn’t been for the 

nonprofit sector working with parents on the issue of parent empowerment, to make their voices known. Because they were basically disenfranchised citizens, and they now have developed a 

voice. And they were able to lobby their local public representatives 

and get their voices heard in the Northern Ireland Assembly. 

And there was uniform support for this legislation across the 

parties, so that was very encouraging to see. But I think, you 

know, given the troubles that we have had in Northern Ireland, it 

was fantastic to see the final debate when the bill became law. You 

know, the members were congratulating other members across the 

aisle for their role in bringing this legislation about. 

So I think I would end by saying that parents are paramount. 

I do take the point—you know, we had—about the autism society 

in part of Africa, you know, having to disband at a time of extreme 

conflict. That actually happened in Northern Ireland, because in 

the 1970s there was an autism charity and they fractured, as well. 

And it wasn’t until 20 years later, 1990, that the charity that I 

worked for was formed by parents again. And that time, the timing 

was right. And, you know, that was 1990, and, you know, people’s 

minds were turning to, ‘‘Can this go on forever?’’ and looking 

maybe toward, you know, the ceasefires, which came a few years 

later. 

38

But, certainly, in the legislation in Northern Ireland, the parents 

and the links they had with local politicians—they brought local 

politicians to family days and events so that the politicians could 

see what it was and what they were coping with and the home situation, some very challenging children and adults. And gradually 

over—this took 10 years, I think, this legislation. A lot happened 

in the last 4 years, but we have been working on this with local 

parents and politicians for the last 10 years. 

I hope that helps in addressing——

Mr. SMITH. Ms. Cassidy, thank you very much. 

And I remind my colleagues and our audience that Ms. Cassidy 

is actually in our consular general’s office in Belfast, Northern Ireland. And we are most appreciative of her leadership but also of 

her time in joining us today. 

Congresswoman Buerkle? 

Ms. BUERKLE. Thank you, Mr. Chairman. 

Dr. Shih, I would like to go back to your previous testimony with 

regards to the research that CDC is doing. And you mentioned that 

we should be more comprehensive. So we talked about what venues 

we go into and what we—can you just expand on that? In a perfect 

world, what would you consider comprehensive research? 

Mr. SHIH. I think, in an ideal world, the data that we use to estimate prevalence of autism in the United States should come from 

multiple sources, in addition to special schools and physician 

records. There probably should be some effort to screen the general 

school population, not all of them, of course, but do it in a representative fashion, just so that we can be sure that we are not 

missing any children that, because of perhaps their milder condition, are actually in the mainstream school, and try to deal with 

all the challenges that they are facing with little or no assistance 

at this point. 

Ms. BUERKLE. Thank you. 

And then in a previous statement, as well, you mentioned USAID 

and that you did feel this was a priority and that they had other 

priorities. As we see the incidence of child mortality decreasing, obviously, it would seem like we are going to begin to see an increase 

in disabilities. Do those two pieces have to be separate from each 

other? Can we address mortality and then look at disabilities, including autism, jointly? 

Mr. SHIH. Yes, I think that would be an ideal situation. I mean, 

I think our perspective is that they are not distinct issues; they are 

interrelated. And we have heard from some of our advocate friends 

is that they would like to have survivalist ability without disability, 

and that is their ultimate aim. 

I think that makes a lot of sense, you know. It is not just about 

being able to survive a terrible disorder and diseases as a child, but 

being able to go on and realize your full potential as an individual. 

And that is much more difficult, obviously, when you have to deal 

with disabilities. 

So I think we can get ahead of the curve and think about and 

highlight public health policies that not only address the mortality 

issue but plan for the future. What are we going to do with children that are going to emerge with disability as time goes on? I 

think it would really help us in terms of thinking not only in the 

39

context of public health but also development in general for the 

country and our ability to address, you know, global public health 

issues, such as autism and other noncommunicable diseases. 

Ms. BUERKLE. Thank you, Dr. Shih. 

Ms. Kobenan, you mentioned in your testimony about Voice of 

America and being able to go onto that radio and talk about autism. Have you been back with Voice of America speaking? 

And, beyond that, how have you found the media? Have they 

been a good partner in getting the word out? You mentioned communications earlier, how important that is. Has the media been 

helpful? And, if not, could you maybe talk to us about how that 

would look if they were going to become a partner in this? 

Ms. KOBENAN. Voice of America have become a friend. They invited me—as a matter of fact, last April I was there, April 2nd, 

World Autism Awareness Day, I was there. And they have been 

very helpful in passing the information around, because the audience, the target audience, is in Africa. So I get a lot of feedback 

from people from Africa seeing me on Voice of America. Yes, I have 

been back on Voice of America, and I hope that in the future they 

will keep inviting me and we can have a close partnership. 

As far as Cote d’Ivoire, for example, where I have been on TV, 

they are so—I am going to use the word ‘‘ignorant’’ about the subject, that they don’t even know how to handle it. And I think that 

when you address these type of issues, when it comes to health, it 

is always important in Africa when you have the approval of the 

Minister of Health or somebody in that department. So when you 

go on TV and the journalist or whoever is inviting you knows that 

you are working with the Department of Health, they give you 

enough time and a platform and everything you need to talk about 

your subject. But when you come as an organization, there are so 

many small organizations talking about so many things, that sometimes they don’t give you enough time, and the communication part 

is not very strong. 

So I think that, by talking to the stakeholder and the responsible 

parties, that we will have enough time and a platform with the TV 

and the radio, and they will be more, you know, acceptable to receive us. 

Ms. BUERKLE. Thank you. 

And as a—not really a follow-up but another question, as a mother of a child with autism, can you tell us what tools have been most 

helpful to you in dealing with his disability? 

Ms. KOBENAN. It has been very hard, and we tried it all. We 

tried supplemental vitamins and everything. But what has worked 

with us, which is a little bit controversial, is homeopathy. 

Each child has his own situation, and whatever works with one 

child might not work with the other. In the case of Vinny, it was 

so hard that sometimes we were putting him down, wrestling our 

child to take his medication. And I was crying all the time, and I 

said, ‘‘There has to be a better way.’’ The doctor said, ‘‘Put it in applesauce.’’ After a while, applesauce tastes like medication, and the 

child knows it and he doesn’t want to take it. So, eventually, we 

came across the homeopathy lady who really helped him, and that 

worked for us. 

40

As a matter of fact, this lady is working with some children in 

Africa. What we did is we found a way to bring these children with 

her, and she deals with them through CD, she watches the children 

through a CD, videotape, and then she has a questionnaire. There 

is a way for her to work with these children, because it is cheaper 

and it is more affordable. Well, in Africa, everything cheap is good, 

right? So that is what she is doing right now. 

We started with a couple of children, just to see how it goes, 

among other treatment that we are doing. We have our challenges, 

like, for example, the war, so we had to take a break and things 

like that. But it is working, and eventually the parents said that 

the children are more calm, quiet. 

So homeopathic is one way, and then, of course, you have your 

treatment and regular pediatrician medication and everything that 

we have over there. We have a pharmacy in Cote d’Ivoire, for example, where they can get their medication to help them cope with 

it, yes. 

Ms. BUERKLE. Thank you. 

Mr. McCool, in your testimony, you talked about the edWeb program. You talked about 900 educators being involved in it. Is this 

just for educators and those involved in education, or is it more 

comprehensive than that? 

Mr. MCCOOL. EdWeb itself is more comprehensive. It has communities for different segments. Eden established the autism community as part of edWeb. And so the people I was referring to, I 

think we have about 1,200 teachers who have signed up, public and 

private school teachers around the country, who network with each 

other, dealing with specific autism-related educational issues. 

Ms. BUERKLE. Are you aware of any other programs similar to 

this, similar to edWeb? 

Mr. MCCOOL. No. I think Facebook and Twitter and all those 

have been used by various people around the country, but we have 

found that this is so focused that it really helps people make a direct connection, rather than having to go through a lot of, you 

know, other systems that you have to sort of navigate through with 

Facebook and Twitter and LinkedIn. 

This is very specific. There was a community of librarians, for example, who really deal with school library issues. There is a community for special education administrators. So you are communicating on very specific, meaningful topics. And it is one-to-one 

once you sign up. 

Ms. BUERKLE. Thank you very much. 

I yield back, Mr. Chairman. Thank you. 

Mr. SMITH. Thank you very much. 

Mr. Marino? 

Mr. MARINO. Thank you, Chairman Smith. First of all, I apologize for being late. Some constituents kept me a little longer than 

I anticipated. But thank you for calling this hearing, because it is 

critical. 

I have two children with special needs, and I am going to just 

pose a little scenario to the panel and ask if each one of you could 

respond to my question. We will start with Mr. McCool. 

My son has been—it has been suggested by a couple of physicians that he has a very mild form of autism, Asperger. But then 

41

there have been other physicians that say, no, they are off the 

mark. 

How well-defined are we and how in tune are we with diagnosis 

today of autism, and particularly the breakdown elements of autism? Do you understand my questions? 

Mr. MCCOOL. Yes. 

Mr. MARINO. Please. 

Mr. MCCOOL. Well, autism is one of those diagnoses, that there 

is no medical test, no blood test for, so it is done by observation 

and by sort of looking at the different categories. Obviously, autism 

impacts that part of the brain that impacts speech and other communication behavior, those kind of things. It doesn’t impact IQ. So 

I think, obviously, the expansion of the definition to include 

Asperger’s has impacted the numbers. 

I think what we see is, if someone is diagnosed or suspected of 

having Asperger’s, the thing to do is to really look at their communication and find out, you know, is their communication system intact, is it appropriate? That seems to be the most singular indicator. Because children, especially young children, have different 

levels of development, and so you don’t really want to characterize 

someone or give them a label until you are pretty sure that they 

are going to have it. 

So I guess the big question is, if someone is suspected of having 

Asperger’s at an early age, would you treat them any differently 

now, suspecting that, or not saying that they actually have autism? 

And so we basically say, let’s treat the person normally, let’s see 

what happens. Generally, when we get to the point where it starts 

impacting their behavior or socialization skills, then that is a bigger indicator than just language development. 

Mr. MARINO. Please. 

Ms. KOBENAN. I think there is a lot more that needs to be done 

as far as diagnosis is concerned. The experience that I had with my 

child, up to 4 years old he wasn’t speaking, and his pediatrician 

kept telling me it is because I speak French, not to worry. And this 

is here in America, not to say anything bad with that. But he lives 

here, and up to 4 years old he couldn’t tell me. 

And the test that I had, he went to Canada on vacation, and the 

doctor there saw him because he was accompanying his cousin who 

just had a cold. The doctor just gave the cold medication to his 

cousin and spent 45 minutes on my son and diagnosed him and 

faxed me the prognosis. 

So I want to say there is a lot more that needs to be done. Even 

though in the United States we are so far ahead, compared to, you 

know, Africa, but there is a whole lot that needs to be done. In my 

case, they had do a brain map to know exactly what Vinny’s problem is. And when we did the brain map, the doctor told me that 

he was smart, he has a high IQ, that I shouldn’t worry about the 

intelligence part but worry about the society part, how to help him 

live in society with everybody. So, spend your effort on that department, and that is what we did. Because if you don’t know that, you 

are all over the place trying to help him, when it is expensive, you 

waste money to treat him on the wrong direction. So that kind of 

helped us, the brain map helped us a lot to find out exactly where 

to put our effort. 

42

So, as far as diagnosis is concerned, I think, you know, the 

United States, I am very grateful for what we have, but of course 

in Africa there is nothing. 

Mr. MARINO. Doctor? 

Mr. SHIH. So, as Mr. McCool mentioned, you know, autism is diagnosed largely behaviorally these days. And there is a tremendous 

amount of heterogeneity among the population. I think a well-regarded researcher from the Albert Einstein School of Medicine, Dr. 

Isabelle Rapin, said that when you have met one child with autism, 

you have met one child with autism. So it is very difficult to generalize beyond the social communication deficits. 

Having said that, there are these diagnostic instruments, psychological instruments, that have been used and been standardized. 

And so the ability to discriminate an individual on the spectrum 

from an individuals who are not is fairly robust at this point. 

I think the question you asked about Asperger’s and all these 

subcategories of autism, I think historically we have used them to 

differentiate people who are perhaps verbal or nonverbal, who have 

intellectual disability versus those who are not. But I think those 

definitions are falling away as we learn more about autism. 

I think, at this point, the new edition of DSM–5, which is the 

bible for psychiatric diagnoses, they are going to do away with all 

these subcategories; there is just going to be one autism spectrum 

disorder. So all the things that we previously talked about—highfunctioning, low-functioning, Asperger’s, and so on—will be actually 

part of one broad spectrum disorder diagnosis. 

And this is consistent with the evidence we have so far. You 

know, we certainly have individual—we are now appreciating that 

individuals who are nonverbal actually have very rich inner life, 

very robust intelligence; they just don’t have the faculty to be able 

to express themselves well. Whereas there are people who have, 

you know, average or above-average verbal faculties but have a tremendous amount of issues, you know, intellectual disabilities as 

well as social interactions. 

And, certainly, these categories, these labels that you put on 

these children doesn’t always predict in terms of the outcome. And 

there are many individuals who seem to be very challenged in early 

parts of life who actually went on to have very productive lives, 

whereas others who didn’t seem to make as much improvement. 

So I think, as we learn more about autism, I think the more we 

appreciate really it is a very broad spectrum of disorders. So, often, 

what we say now instead of autism as one disorder, you talk about 

‘‘autisms.’’ Just like the way we talk about cancer, even though it 

is a big collection of disorders but there are individual types of cancer that require different types of treatment approaches. 

Mr. MARINO. Thank you. 

I yield my time. 

Mr. SMITH. Mr. Marino, thank you. 

Let me just ask a couple of final questions. 

Mr. McCool, in your testimony, you talked about teaching students with autism, effective strategies for grades K through 5 and 

effective strategies for 6 through 12. And I am wondering, you 

know, one of the things that we have all come to a better understanding of is that, unlike other disabilities—mental, emotional, 

43

whatever it be—that autism is in a league of its own. It is a category. It is a type of teaching where, unless the teachers are very 

specifically trained, it is very difficult to meet the challenges. 

And I am wondering, you know, in her testimony, Ms. Kobenan 

said that there are three primary problems: Lack of awareness, 

lack of education, and lack of availability of proper treatments. In 

the United States, where we have been grappling with this for several years, we have still not trained the teachers in a way that is 

commensurate with the problem and the challenge that we face. 

And I am wondering if the teaching you espouse can increasingly 

be exported to Africa and exported either via the Web or training 

seminars or bringing people to Princeton, to Eden Institute or similar institutions, so that there can be a teach-the-teachers initiative 

to meet this challenge. 

Mr. MCCOOL. Absolutely. And that certainly is the model that we 

are advocating. With webinars, the great thing about webinars is 

that they can be live so they can be interactive. They can be rebroadcast later so that people can look at them. 

I think one of the biggest issues with autism training is back to 

the certification. Most teacher education programs do not have a 

specific autism certification track. California has passed legislation 

that has defined specific certification in autism that requires both 

instruction and coursework and a practicum, so that a person can 

get a level 1 or level 2 certificate as an autism teacher. And that 

process has begun. A lot of those courses are available online so 

that people can get them. 

The motivation for this is, obviously, to be a better teacher, but 

also there are incentives built in to pay increases for people who 

achieve higher levels of certification. I am not aware of any other 

states right now that have that same process in place. We are 

working with Neumann University in Pennsylvania, who is looking 

to establish a similar process in Pennsylvania even though there is 

no state law that defines it, but building on what California has 

done, looking at the same coursework, the same kinds of things. 

What people look at in terms of autism certification is a national 

certification, board-certified behavior analysts. And this is a very 

rigorous training program. The majority of people believe that if 

you get the BCBA certification that you have skills, you have acquired skills that make you proficient in dealing and teaching children and adults with autism. And, again, it is very rigorous. You 

have to take coursework, and have to do about 1,500 hours in a 

year of practicum under the supervision of another BCBA. 

And so we use that model. We have BCBAs at Eden. We look at 

them to train the ABA therapists. There is no real certification for 

an ABA therapist, people who work in residential or employment 

programs. But the teacher certification for autism right now is just 

something that is emerging. More and more colleges and universities recognize the need for it. And there are, you know, several 

proposals out there. Kean University in New Jersey has just established one, as well. 

So I think it is not a normal—it is so behaviorally intensive that 

regular college coursework doesn’t really equip people to be effective ABA therapists. 

Mr. SMITH. Thank you. 

44

Mr. Shih? 

Mr. SHIH. I would like to just add to that. 

I think that has been one of the major challenges, is to train our 

professionals to really meet the needs. And I think, in less optimistic moments, you wonder if you will ever train enough people 

to might all the needs out there. 

Fortunately, I think in recent years there has been research done 

now where people have now started to train nonspecialists as cotherapists in taking care of their children, and that includes parents. And there has actually been, over the past couple of years, 

several really well-designed studies that have been published that 

demonstrate that nonspecialists, as well as parents, when working 

with an expert, can actually faithfully deliver intervention at home 

for their children. 

And we see this as a possibility, in terms of our international development, because, number one, it empowers the parents, because 

every parent knows their child the best and knows their needs 

need. And you are giving them the toolset to better manage behavior, to help them learn in the way that they need to learn. 

And the second thing is that you can even do this kind of training via the Internet, this learning technology. Again, there have 

been recent publications that have demonstrated that there is practically no difference when you train professionals via the Internet 

versus an in-person setting. You get the same kind of expertise 

coming out of your class in providing services for the families. 

So there is reason for hope. 

Mr. SMITH. Thank you. 

Again, Dr. Shih, you had mentioned in your testimony, and it is 

worth quoting again: ‘‘The current scientific consensus is that 67 

million people, or about 1 percent of the world’s population, is affected with some form of ASD, a prevalence that is higher than 

AIDS, diabetes, and cancer combined.’’

In his testimony that was submitted for the record from WHO, 

Dr. Shekhar Saxena, director of the Department of Mental Health 

and Substance Abuse of the World Health Organization, in his—

this will be part of the record—it says that tens of millions of people are estimated to be affected in Africa only. 

And I am wondering, you talked about the numbers in South 

Korea being higher. It seems, when we study it, it is like a tip-ofthe-iceberg phenomenon, where it is worse than we thought. 

And I am wondering, again—and I asked this earlier, but I ask 

it with emphasis now, because I have raised it with Dr. Shah at 

the U.S. Agency for International Development. This needs to be 

made a priority, and I hope it becomes one in the Global Health 

Initiative, because we have a—you know, pandemics are usually reserved, by definition, for infectious diseases, but I think, you know, 

with quotes around it, we can say this is a pandemic that is going 

largely unrecognized. And it is about time; our hope is with this 

hearing, to begin with vigor and a fresh set of impetus and eyes 

to make this a global effort with our tax dollar, which heretofore 

has not been the case internationally. Domestically, I think we are 

making progress. 

I would note parenthetically that in the late 1990s, when I introduced the ASSURE Act, CDC was spending $287,000 per year for 

45

5 successive years, straight line. That doesn’t buy a desk. That 

doesn’t buy anything of value. And then they got into it, obviously, 

as a result of the legislation. We are now spending $22.1 million. 

In regards to NIH, we were spending $10.5 million. Now we are 

spending, in 2010, $160 million. So, you know, when we chronicle, 

when we prioritize, the money will follow. And, hopefully, the good 

work that that money buys will make a difference in the lives of 

people. 

And I do have one final question. I read a book recently called 

‘‘Dancing with Max’’ by Emily Colson. I invited her up. She talked 

to the members of our Autism Caucus. Mr. McCool, you might 

want to speak to this, as well. 

Obviously, we are still focused on early intervention and what do 

we do about all these young people, how do we help them have a 

more productive life and to help the suffering, frankly, of so many 

of these heroic parents who are faced with, particularly with severely autistic children, a very, very challenging life. 

And I am wondering, with the aging-out issue, in ‘‘Dancing with 

Max,’’ Emily Colson tells the story of how her husband left. By the 

time Max was 9, she had had it. But then, through the grace of 

God—and it really was through prayer—and a lot of help from people around her, she got through it. And now Max is approaching 

adulthood, and the important regimentation that goes along with 

formal schooling will go away. 

And she made an appeal to Congress, and I know Autism Speaks 

has been making this appeal very robustly—Autism Society, Mr. 

McCool, which you are a part of, is making that, as well—what do 

we do now with these young adults to ensure that their lives and 

the quality of life does not diminish? 

And I am wondering if you could speak to that, because it obviously has international implications, as well as domestic ones, for 

those children. Does anybody want to touch on that?

Mr. SHIH. Sure. So one thing I have learned from talking to all 

the stakeholders around the world is that the concerns of the parents, what they want for their children, is all the same. They want 

the best possible life for them, and so on. So the idea of being able 

to help them to achieve those objectives I think is very worthwhile. 

You know, the idea that the individuals and families could benefit from awareness and research and delivery is really not a very 

ambitious goal. I think it is actually within the reach of most societies. I think, as I think it has been talked about in this particular 

committee meeting, you know, I think it takes political will. It 

takes understanding and knowledge and awareness of the issues. 

And it also takes understanding that you don’t really need to invest 

a tremendous amount of money to make a difference. So, oftentimes, a quality-of-life issue can be robustly addressed with the 

right investment, strategic investment, of resources and expert assistance. 

So I think it is really important for this committee to help the 

global autism community to think about, what are the possible solutions, what can we do? We are not looking for charity per se. We 

are looking for empowerment and the ability to help them to help 

themselves. 

46

Ms. KOBENAN. I just want to say something about the training, 

you know, tied up with this. What I want to say is, I hear these 

numbers that you are talking about, millions and millions, and I 

just go, ‘‘Oh, my.’’ In Africa, it doesn’t take much to do a lot. Just 

an example, in 2009 I sent—I mean, ACA sent $1,000 to Autism 

Cote d’Ivoire. With that $1,000, they were able to have two volunteers, French ABA professionals, that gave their time. They weren’t 

paid for what they were doing, but we were able to put them in 

a hotel and buy them—you know, little things like that. And within 

a week, they trained a few teachers and a few caregivers. 

Now, this is not a lot, but it is a small step, and it adds up. You 

know, little by little, every so often, 6 months or a year, you can 

have a good team of people, you know, with some tools and help. 

It is always hard when you want to have something on the bigger 

level and, you know, come with all these big grants. But we can 

start small, create these centers, you know, small centers. They 

don’t need to be very sophisticated, but where they can go and get 

the information and where the communication can come from. 

I just wanted to add that. 

Mr. MCCOOL. I think we have to remember that, until 1975, children with disabilities weren’t entitled to a free appropriate public 

education. And so, a lot of the strides that we see with early intervention services and with education are because of that legislation. 

It has put some teeth into the law. 

So when children graduate from that educational system and become adults with disabilities, particularly adults with autism, that 

same level of support is not available. In fact, many times, the 

huge investment that has been made with behavorial therapies, 

speech therapy, occupational therapy disappears, the effectiveness 

of that disappears if the child becomes an adult and cannot be sustained. 

So we recognize that all of the children diagnosed with autism 

now will be adults with autism in the future. And we have to look 

at housing, we have to look at support for them, we have to look 

at employment for them. And, right now, I think a lot of strides 

are being made to sort of look at the kinds of employment, the kind 

of jobs that align skills that people with autism have. 

I know, years ago, when Bittersweet Farms was started as a 

model program, it fell out of favor because it was seen as an isolationist program or a segregated program putting people on the 

farm. What I see today is a growing number of farm programs. 

And, obviously, it is the model in Ireland, which has an agricultural culture. But even in our country, small farms are coming 

back, and they are employing people with autism, who enjoy that 

kind of work. It is very repetitive. It is the kind of work that aligns 

skills of certain people with autism and the duties and responsibilities of the employment. 

So I think our challenge is to look at how, with the resources 

that we have, children age out of school, so there is a population 

constantly leaving childhood and entering childhood, but the adult 

program—adults with autism are living normal lifespans. 

And so, right at Eden, at this point, we have group homes and 

apartment programs, residential programs, and some of those guys 

47

have gotten up to their 60s, and we are looking at you know, what 

is that next step? What kind of support can we provide them? 

So I think the model that we had with the Education for All 

Handicapped Children Act of 1975 really set an example of what 

can be done to help adults with disabilities, and particularly autism, as we go forward. The numbers are big, and we have to look 

at various streams of funding that can help provide that support 

and enable them to be productive in working to help support themselves. 

Mr. SMITH. The chair recognizes Mr. Payne, the ranking member 

of the subcommittee. 

Mr. PAYNE. Thank you very much. And thank you for prolonging 

the hearing so I could at least get here in time. I think he thought 

he was in the Senate, filibustering. But I appreciate that, having 

the opportunity to be here. I had a longstanding engagement which 

I was unable to alter. 

But let me take the indulgence of the committee for a brief opening statement. It might be past tense now since you have testified, 

but we looked at your testimony and I am aware of what each of 

you had to say. 

But I certainly begin my statement by thanking Chairman 

Smith. And, certainly, let me recognize his longstanding leadership 

on this issue, both domestically and globally. 

I would also welcome our esteemed witnesses today and look forward as the testimony that you have given and that my staff heard 

and that we looked at earlier on autism globally and how proposed 

interventions would coexist and complement our efforts to combat 

Africa’s leading killer diseases, namely HIV/AIDS, malaria, and neglected tropical diseases, where they have the emphasis, as has already been mentioned by the chairman, but issues like this, which 

impact on so many others, are left unattended to. 

Autism, often identified by impairments in communication and 

social interaction, is usually recognized in early childhood, around 

the age of 3. Imagine the news that one’s child, and as you must 

have experienced, faces the challenges of autism, and the devastation of hearing that this has beset your young child. 

Fortunately, here in the United States and in other developed 

countries, progress has been made in our efforts to detect and treat 

those with the disorders. However, we still have a long way to go, 

as you mentioned in your testimony, Mrs.—say it? 

Ms. KOBENAN. Kobenan. 

Mr. PAYNE. Kobenan. I never would have said it so nicely. 

But as you have testified and as I read in your remarks about 

how you had to leave this region of the country, where you would 

think that in Washington, DC, and in this environment of Maryland and Virginia we would have the most appropriate attention, 

given the resources, but you chose to move to Arizona because you 

knew that, there, there were better services. 

And so we can just imagine how in a developing country, where 

many, many, many needs are, that autism certainly is an issue 

that seems to be, and mental health even in general, tends to be 

on the back burner, rather than diseases that we hear so much 

about. 

48

In the U.S., there are public and private resources available for 

impacted families to better cope with the disease. Sadly, the same 

support structures provided in the developing world often do not 

exist in low- and middle-income countries, due to inadequate funding and a lack of understanding or diagnosis of the disorder. There 

are often neglected populations battling a wide range of physical, 

mental, and neurological disabilities in developing countries, further compounding the burden of poverty and weak health systems 

on families, communities, and governments. 

The United Nations has taken some important steps to ensure 

equal rights for those with disabilities, including the 1981 declaration by the United Nations for the International Year of Disabled 

Persons. Then it established the United Nations Decade for Disabled Persons in 1983 to 1992. The U.N. then expanded the Universal Declaration of Human Rights to include people with disabilities some 35 years after the Declaration was adopted. And the 

United Nations reaffirmed equal rights for people with disabilities 

through several fora, particularly the Convention on the Rights of 

Persons with Disabilities in 2006, and declared April 2nd World 

Autism Awareness Day. 

And so many times there is—and, actually, UNESCO has really 

moved forward in addressing the problems with the Framework for 

Action to Meet Basic Learning Needs, which calls on governments 

to pay special attention to the learning needs of the disabled and 

take steps to provide equal access for education for every category 

of disabled persons as an integral part of the educational system. 

This concept of equal education for mentally and physically disabled people has been endorsed by several countries through the 

ratification of numerous international and regional agreements. 

And so, although we do hear criticism of the United Nations, I 

think that many issues would have gone unspoken throughout the 

world if it were not for the United Nations, going back 40 years 

ago, recognizing that countries, especially in low- and middle-income countries, would not raise the issue of the disabled when they 

had so many other basic issues, like clean water or malaria. So I 

do commend them for that. 

There are certainly, as I mentioned, a lot of private resources 

available for impacted families to better cope—that is here in the 

United States—with the disease. Sadly, though, the same support 

structure provided in the developed world often does not exist in 

low- and middle-income countries due to inadequate funding and a 

lack of understanding or diagnosis of the disorder. 

There is an often neglected population battling a wide range of 

physical, mental, and neurological disabilities in developing countries, further compounding the burden of poverty and weak health 

systems on families, communities, and governments. The United 

Nations has taken these important steps, as I mentioned before. 

However, the right to education remains unattained for many autistic children in the developing world. While the United Nations’ 

actions are commendable, many developing countries are failing to 

address the special needs of their autistic population. The World 

Health Organization found that, in middle- and low-income countries, there is only one child psychiatrist for every 4 million people. 

That is unbelievable. 

49

I look forward to what you have said and has been recorded, 

looking at low-cost interventions, given their limited state budgets 

and over burdened public health systems, which developing countries can apply, and to better deal with the issues of autism within 

their borders. 

We know that there have been several—the Journal of the International Association of Special Education found that children with 

autism in Africa do not share the same behavioral signs as their 

Western counterparts—it was very interesting—such as rocking 

back and forth. It seems that geographic and environmental differences impact the way that the disorder manifests itself, which 

makes it even more difficult because there is not going to be one 

kind of a treatment that covers all. And I look forward to how we 

might be able to work along with the fact that there are different 

signs. 

Furthermore, we know that, from the Haiti earthquake and 

other examples, that in crisis situation those with disabilities are 

often inadequately cared for. We know that this a big problem. 

And so I once again would like to join with the chairman in certainly thanking you for your appearance here and also for your interest. And I just have a quick question or two, since I have almost 

exhausted my 5 minutes. I don’t know how to tell time. 

But there appears to be limited information about the prevalence 

of autism worldwide, especially in Africa. What do you know about 

it, in a nutshell, about how widespread this disorder is in the 

world, particularly in Africa? And what are the greatest challenges 

in conducting autism prevalence studies abroad? 

If any of you would like to try to take a stab at that.

Mr. SHIH. Sure. 

So, the challenges of conducting prevalence studies in Africa is 

actually similar to elsewhere. It is about informing the community, 

informing the stakeholders, so they understand what you are trying to do and to work with you. And we found that when you have 

community buy-in, you are actually able to generate the highestquality data. 

And the greater challenge, I think, for working with territory in 

Africa is actually the second act. To do a study in a community is 

one thing, but trying to figure out what you are going to do with 

all the individuals and families who are affected by autism that 

you identified through the study is something completely different. 

And that requires a commitment not only to the individuals and 

families, but also a commitment to change community, society, and 

governments. And that kind of work takes a long time, it takes a 

lot of resources, it takes a lot of focus. 

But, at the same time, that kind of policy change will be meaningful only if you have real solutions on the ground. The idea is 

that you want to nurture and support and grow things that are already working for individuals and families on the ground. So, going 

to any low and developing country, you need to really approach it 

from a top-down as well as a bottom-up perspective. You need the 

top-down so that the solution you develop from the bottom-up is 

sustainable and can be integrated as a meaningful solution for the 

national public health system in the longer term.

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Ms. KOBENAN. I said it a minute ago, and I will say it again. One 

of the basic, basic challenges that we have are the lack of centers. 

You know, you can have a program to teach teachers, to educate 

stakeholders, and all that, but once the whole team is gone, whether you come from the United States, you teach these people, and 

then you leave, where do the parents go for more information? 

They need to have a center. Everybody has a house. They need to 

have a house that they call ‘‘autism center.’’ It doesn’t have to be 

sophisticated. But that is a major challenge. 

Once they have those little centers, they can go there, get information. And if anybody has any question, they can go there. They 

can have a small staff member that can go part-time with no benefits and just work there to educate people, and they have a place 

to go. That is the first step. 

Mr. PAYNE. Would you think that the church community in Africa or other developing countries could be a center, if there could 

be an educational campaign to educate the religious community 

and simply ask if their parsonage or some part of their building 

could be used for that? 

Ms. KOBENAN. Yeah, that is a good point, because, indeed, that 

could be a solution. And when I say ‘‘center,’’ it doesn’t have to be 

a building; it can be those things, too. 

Because, for example, the ex-wife of the Ambassador of Liberia—

because at ACA we try to work with the wives of ambassadors and 

get them to be involved, and she got involved. Her solution was to 

talk to one of her church pastors and see if he could give her part 

of a building. And, indeed, within a year, she was able to do that. 

And she told me that the center actually was created. 

So that is a very good suggestion, too. 

Mr. PAYNE. And we might even go further and ask our U.S. Department of State and USAID, as they move forward on this, that 

we might prod them on this issue and suggest to them that their 

ambassadors—and they all have projects that they can fund a little 

stipend that they could do, and they don’t even need that. But if 

the ambassadors’ wives could have the women, perhaps, of the 

countries and encourage them to have a meeting and then encourage the African community to therefore approach the hierarchy of 

the church, I think that we could—as you mention, you don’t need 

a lot of money, you just need to use the resources. And everyone 

needs a home, you are absolutely right. 

Because I was late and I have taken enough time, I will yield 

back and will ask no other questions. Thank you very much. 

Mr. SMITH. I understand Ms. Buerkle has an additional question. 

Ms. BUERKLE. Thank you, Mr. Chairman. Just as a brief followup, Ms. Kobenan, you mentioned regarding your son and the brain 

mapping that was done. It seemed to really shed light on what he 

was going to have difficulties with. Can you expand upon that? Is 

that an MRI of sorts? 

Ms. KOBENAN. It is an EKG that you do. They put a lot of electrodes on his head and then he has to stay still and they do a map. 

They kind of read the activity on his brain for a period of time. It 

is very expensive. We had it in Arizona. But it is so helpful. So I 

wouldn’t suggest that for every family if they have to come up with 

the money out of their own pocket because ours cost us $3,500. If 

51

they can have the insurance, some kind of help, that would be very 

helpful because it really tells you right from the start whether you 

should plan on putting your child in the facility where he will be 

24/7 taken care of by people or he can take care of himself when 

he grows up. So you can start investing money to find a good facility for him or you can invest your money into developing activities 

for him to help himself. So that kind of gives you a roadmap right 

from the start. We were lucky enough to have come across this doctor that did that. 

Ms. BUERKLE. Does anyone have anything to add to that? 

Is it not covered by insurance, does anyone know? 

Ms. KOBENAN. Not at all, trust me. 

Ms. BUERKLE. Is it an EEG? 

Ms. KOBENAN. EKG. 

Mr. SHIH. I think it is the EEG. 

Ms. BUERKLE. So it is what they do somewhere for seizures and 

other types of brain function? 

Ms. KOBENAN. Right. 

Ms. BUERKLE. Thank you very much. I yield back, Mr. Chairman. 

Mr. SMITH. Would the witnesses like to add anything further? 

Ms. Cassidy, thank you for your testimony from Belfast, Northern 

Ireland. 

I would just like to close with the statement that Dr. Shih made 

and I think it again encapsulizes why we are so concerned. He 

noted in his testimony: As child mortality decreases, simple math 

predicts an increase in the number of children with developmental 

disabilities. So instead of seeing mortality and developmental disorders like autism as two distinct public health challenges, they 

should be tackled as parts of the same problem. 

To continue his statement, he said, you said just a few moments 

ago, Autism Speaks and our partners around the world believe that 

by addressing autism and related disorders now, South Africa and 

other developing countries can get ahead of the curve, help maximize outcomes for affected individuals and families, and minimize 

long-term costs to society. 

We have a pandemic with autism. Hopefully, we can launch and 

do much more with the Global Health Initiative and all the other 

related efforts at the U.N. at the country specific level to mitigate 

this devastating developmental disorder. 

I thank you. 

The hearing is adjourned. 

[Whereupon, at 4:05 p.m., the subcommittee was adjourned.] 

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A P P E N D I X 

MATERIAL SUBMITTED FOR THE HEARING RECORD

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MATERIAL SUBMITTED FOR THE RECORD BY THE HONORABLE CHRISTOPHER H. SMITH, 

A REPRESENTATIVE IN CONGRESS FROM THE STATE OF NEW JERSEY, AND CHAIRMAN, 

SUBCOMMITTEE ON AFRICA, GLOBAL HEALTH, AND HUMAN RIGHTS


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