I
106TH CONGRESS
1ST SESSION
H. R. 274
To provide surveillance and research to better understand the prevalence
and pattern of autism and other pervasive developmental disabilities
so that effective treatment and prevention strategies can be implemented.
IN THE HOUSE OF REPRESENTATIVES
JANUARY 6, 1999
Mr. SMITH of New Jersey (for himself and Mr. GREENWOOD) introduced the
following bill; which was referred to the Committee on Commerce
A BILL
To provide surveillance and research to better understand
the prevalence and pattern of autism and other pervasive
developmental disabilities so that effective treatment and
prevention strategies can be implemented.
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ‘‘Autism Statistics, Sur-
veillance, Research, and Epidemiology Act of 1999 (AS-
SURE)’’.
SEC. 2. FINDINGS.
The Congress makes the following findings:
HR 274 IH
(1) Autism and other pervasive developmental
disabilities (fragile X syndrome, Rett’s syndrome,
childhood disintegrative disorder, Landau-Kleffner
syndrome, and pervasive developmental disorders not
otherwise 
specified) 
are 
biologically 
based
neurodevelopmental diseases which cause severe im-
pairment in cognition, language, and affective abili-
ties.
(2) Autism and pervasive developmental disabil-
ities are not rare; they may affect as many as one
in every 500 children, and more than 500,000 Amer-
icans.
(3) There is little information on the prevalence
of autism and other pervasive developmental disabil-
ities in the United States. There have never been
any national prevalence studies in the United States,
and the two studies that were conducted in the
1980s examined only selected areas of the country.
Recent studies in Canada, Europe, and Japan sug-
gest that the prevalence of classic autism alone may
be 300 percent to 400 percent higher than pre-
viously estimated.
(4) The cost of caring for individuals with au-
tism and pervasive developmental disabilities is esti-
HR 274 IH
mated at more than $13,000,000,000 per year for
direct costs only.
(5) Autism is considered by many scientists to
be one of the most heritable of all the developmental
disorders, and the most likely to yield to the latest
scientific advancements in genetics and neurology.
(6) The discovery of effective treatments and a
cure for autism will be greatly enhanced when sci-
entists and epidemiologists have an accurate under-
standing of the prevalence and incidence of autism.
(7) Recent research suggests that environ-
mental factors may contribute to autism. As a re-
sult, contributing causes of autism, if identified, may
be preventable.
(8) Finding the answers to the causes of autism
and related developmental disabilities may help re-
searchers to understand other disorders, ranging
from learning problems, to hyperactivity, to commu-
nications deficits that affect millions of Americans.
SEC. 3. DEVELOPMENTAL DISABILITIES SURVEILLANCE
AND RESEARCH PROGRAMS.
(a) NATIONAL AUTISM AND PERVASIVE DEVELOP-
MENTAL DISABILITIES SURVEILLANCE PROGRAM.—The
Secretary of Health and Human Services (in this Act re-
ferred to as the ‘‘Secretary’’), acting through the Director
HR 274 IH
of the Centers for Disease Control and Prevention, may
make awards of grants and cooperative agreements for the
collection, analysis, and reporting of data on autism and
pervasive developmental disabilities. An entity may receive
such an award only if the entity is a public or nonprofit
private entity (including health departments of States and
political subdivisions of States, and including universities
and other educational entities). In making such awards,
the Secretary may provide direct technical assistance in
lieu of cash.
(b) CENTERS OF EXCELLENCE IN AUTISM AND PER-
VASIVE
DEVELOPMENTAL
DISABILITIES
EPIDEMIOL-
OGY.—
(1) 
IN
GENERAL.—The 
Secretary, 
acting
through the Director of the Centers for Disease
Control and Prevention, shall (subject to the extent
of amounts made available in appropriations Acts)
establish not less than three, and not more than five,
regional centers of excellence in autism and perva-
sive developmental disabilities epidemiology for the
purpose of collecting and analyzing information on
the number, incidence, correlates, and causes of au-
tism and related developmental disabilities.
(2) RECIPIENTS OF AWARDS FOR ESTABLISH-
MENT OF CENTERS.—Centers under paragraph (1)
HR 274 IH
shall be established and operated through the award
of grants or cooperative agreements to public or
nonprofit private entities that conduct research, in-
cluding health departments of States and political
subdivisions of States, and including universities and
other educational entities.
(3) CERTAIN REQUIREMENTS.—An award for a
center under paragraph (1) may be made only if the
entity involved submits to the Secretary an applica-
tion containing such agreements and information as
the Secretary may require, including an agreement
that the center involved will operate in accordance
with the following:
(A) The center will collect, analyze, and re-
port autism and pervasive developmental dis-
abilities data according to guidelines prescribed
by the Director, after consultation with relevant
State and local public health officials, private
sector developmental disability researchers, and
advocates for those with developmental disabil-
ities;
(B) The center will assist with the develop-
ment and coordination of State autism and per-
vasive developmental disabilities surveillance ef-
forts within a region;
HR 274 IH
(C) The center will provide education,
training, and clinical skills improvement for
health professionals aimed at better under-
standing and treatment of autism and related
developmental disabilities; and
(D) The center will identify eligible cases
and controls through its surveillance systems
and conduct research into factors which may
cause autism and related developmental disabil-
ities; each program will develop or extend an
area of special research expertise (including,
but not limited to, genetics, environmental ex-
posure to contaminants, immunology, and other
relevant research specialty areas).
SEC. 4. CLEARINGHOUSE.
The Secretary, acting through the Director of the
Centers for Disease Control and Prevention, shall carry
out the following:
(1) The Centers for Disease Control and Pre-
vention shall serve as the coordinating agency for
autism and pervasive developmental disabilities sur-
veillance activities through the establishment of a
clearinghouse for the collection and storage of data
generated from the monitoring programs created by
this Act. The functions of such a clearinghouse shall
HR 274 IH
grams and research on autism and pervasive devel-
opmental disabilities epidemiology; and
(4) the effective operation of autism and perva-
sive developmental disabilities epidemiology research
activities.
(b) COMPOSITION.—
(1) IN
GENERAL.—The Committee shall be
composed of ex officio members in accordance with
paragraph (2) and 11 appointed members in accord-
ance with paragraph (3).
(2) EX OFFICIO MEMBERS.—The following offi-
cials shall serve as ex officio members of the Com-
mittee:
(A) The Director of the National Center
for Environmental Health.
(B) The Assistant Administrator of the
Agency for Toxic Substances and Disease Reg-
istry.
(C) The Director of the National Institute
of Child Health and Human Development.
(D) The Director of the National Institute
of Neurological Disorders and Stroke.
(3) APPOINTED
MEMBERS.—Appointments to
the Committee shall be made in accordance with the
following:
HR 274 IH
(A) Two members shall be research sci-
entists with demonstrated achievements in re-
search related to autism and related develop-
mental disabilities. The scientists shall be ap-
pointed by the Secretary in consultation with
the National Academy of Sciences.
(B) Five members shall be representatives
of the five national organizations whose primary
emphasis is on research into autism and other
pervasive developmental disabilities. One rep-
resentative from each of such organizations
shall be appointed by the Secretary in consulta-
tion with the National Academy of Sciences.
(C) Two members shall be clinicians whose
practice is primarily devoted to the treatment of
individuals with autism and other pervasive de-
velopmental disabilities. The clinicians shall be
appointed by the Secretary in consultation with
the Institute of Medicine and the National
Academy of Sciences.
(D) Two members shall be individuals who
are the parents or legal guardians of a person
or persons with autism or other pervasive devel-
opmental disabilities. The individuals shall be
appointed by the Secretary in consultation with
HR 274 IH
the ex officio members under paragraph (1) and
the five national organizations referred to in
subparagraph (B).
(c) ADMINISTRATIVE SUPPORT; TERMS OF SERVICE;
OTHER PROVISIONS.—The following apply with respect to
the Committee:
(1) The Committee shall receive necessary and
appropriate administrative support from the Depart-
ment of Health and Human Services.
(2) Members of the Committee shall be ap-
pointed for a term of three years, and may serve for
an unlimited number of terms if reappointed.
(3) The Committee shall meet no less than two
times per year.
(4) Members of the Committee shall not receive
additional compensation for their service. Such
members may receive reimbursement for appropriate
and additional expenses that are incurred through
service on the Committee which would not have in-
curred had they not been a member of the Commit-
tee.
SEC. 6. REPORT TO CONGRESS.
The Secretary shall prepare and submit to the Con-
gress, after consultation and comment by the Advisory
Committee, an annual report regarding the prevalence and
HR 274 IH
incidence of autism and other pervasive developmental dis-
orders, the results of research into the etiology of autism
and other pervasive developmental disorders, public health
responses to known or preventable causes of autism and
other pervasive developmental disorders, and the need for
additional research into promising lines of scientific in-
quiry.
SEC. 7. DEFINITION.
For purposes of this Act, the term ‘‘State’’ means
each of the several States, the District of Columbia, the
Commonwealth of Puerto Rico, American Samoa, Guam,
the Commonwealth of the Northern Mariana Islands, the
Virgin Islands, and the Trust Territory of the Pacific Is-
lands.
SEC. 8. AUTHORIZATION OF APPROPRIATIONS.
For the purpose of carrying out this Act, there is au-
thorized to be appropriated $7,500,000 for each of the fis-
cal years 2000 through 2004.
Æ