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Report to Congress on Autism (Newly Released)
Prepared by the National Institute of Mental Health
National Institutes of Health
Department of Health and Human Services
http://www.nimh.nih.gov/events/interagencyautism.cfm
Although we do not know the exact prevalence of autism, estimates
range from one in 500 to one in 1,000 in the United Slates.
Autism is a complex neurobiological disorder that generally
lasts throughout a person's life. Current statistics show
that autism occurs in all racial, ethnic, and social groups,
and, recently, there have been reports of an increase in the
number of children receiving a diagnosis of autism or receiving
public services for autism. In most cases, autism impairs
a person's ability to communicate and to relate to others.
It also is associated with rigid routines or repetitive behaviors
such as obsessively following schedules or arranging belongings
in very specific ways. Autistic behaviors not only make life
difficult for people with autism but also make life hard for
their families, their health care providers, their teachers,
and anyone who comes in contact with them. Families coping
with this devastating illness are searching for answers about
its causes, diagnosis, prevention, and treatment. Presently,
there is no effective means to prevent the disorder, no fully
effective treatment, and no cure. Early intervention is critical
for affected children to gain maximum benefit from current
therapies.
Purpose of report
Public Law 106-310, the Children's Health Act of 2000,
was signed into law on October 17, 2000. The Act authorizes
the Secretary of Health and Human Services (HHS) to conduct
activities relevant to autism and pervasive developmental
disorders in Division A, Title I. The topics of these activities
are:
- Section 101--Expansion, intensification, and coordination
of activities of the National Institutes of Health (NIH)
with respect to research on autism;
- Section 102--Developmental disabilities surveillance and
research programs;
- Section 103--Information and education;
- Section 104--Interagency Autism Coordinating Committee;
and
- Section 105-Providing this report to Congress.
Section 101 authorizes the Director of NIH, acting through
the Director of the National Institute of Mental Health (NIMH),
to expand autism research activities in general and to support
the specific planning and establishing of no fewer than five
Centers of Excellence in Autism Research.
Each Center is to conduct basic and clinical research. The
research is to include the cause, diagnosis, early detection,
prevention, control, and treatment of autism. The Centers,
as a group, are to conduct research including developmental
neurobiology, genetics, and psychopharmacology.
Support is not to exceed 5 years, although support may be
extended for one or more additional periods with appropriate
peer review. Section 101 also authorizes a program to collect
and share genetic materials and tissue samples and to provide
a means through which the public may obtain information and
provide comments to the Director of NIH.
Section 102 authorizes the Secretary of HHS to act through
the Director of the Centers for Disease Control and Prevention
(CDC) in certain autism research areas. This portion of the
Act authorizes a surveillance program on autism and pervasive
developmental disorders, as well as three regional Centers
of Excellence in epidemiology of autism and pervasive developmental
disorders. The section also calls for establishing a clearinghouse
for data.
Section 103 authorizes the Secretary to establish and implement
a program of education and information for health professionals
and the general public as well as a stipend program for health
professionals.
Section 104 stipulates that the Secretary is to establish
a committee to be known as the "Autism Coordinating Committee"
to coordinate all efforts within IIIIS concerning autism.
The Committee is to be composed of the Directors of the relevant
NIH Institutes, the CDC, and other agencies and officials
that the Secretary determines to be appropriate. The Secretary
also may appoint to the Committee parents or legal guardians
of individuals with autism or other pervasive developmental
disorders and representatives of other governmental agencies
that serve children with autism, such as the Department of
Education.
Section 105 requires the Secretary of HHS to submit an annual
report to Congress "concerning the implementation of
this title and the amendments made by this title." The
present report is the second annual report to Congress and
reflects HHS activities in 2001. The report is organized into
sections pertinent to Division A, Title I of the Act.
Section 101--Expansion, intensification, and coordination
of activities of the National Institutes of Health (NIH) with
respect to research on autism.
a. Expansion, Intensification and Coordination of NIH
Activities
Within NIH, five Institutes are members of the NIH Autism
Coordinating Committee (NIH/ACC). These are the NIMH, the
National Institute of Child Health and Human Development (NICHD),
the National Institute of Neurological Disorders and Stroke
(NINDS), the National Institute on Deafness and Other Communication
Disorders (NIDCD), and the National Institute of Environmental
Health Sciences (NIEHS). In addition, a staff representative
from the National Institute of Allergy and Infectious Diseases
participates in NIH/ACC meetings.
The NIH/ACC functions in a coordinating role for autism research
activities funded and conducted by the various NIH Institutes.
Representatives from the NIWACC will attend the Interagency
Autism Coordinating Committee (IACC) meetings and conduct
liaison activities between the two committees to ensure that
IACC concerns and issues are addressed by NIH program staff.
Oversight for the NIH/ACC activities is
primarily provided by the NIMH Director, with the NICHD Director
as co-chair. Because NIMH has been designated the lead for
creating the IACC, the NIHM Director also serves as chairperson
on the IACC.
Over the past few years, NIH has expanded considerably and
enhanced its coordination of autism research. The amount of
NIH support of autism research grew from $22 million in FY
1997 to $56 million in FY 2001. Thus, the Institute members
of the NIH/ACC have made clear their commitment to the broad
intensification of autism research efforts called for in the
Act.
This $56 million effort encompasses a large number of grants,
contracts, and intramural research programs distributed across
the MH. In FY 2001, MH autism research activities included
the following:
Grants on Treatment of Autism
As part of a special funding initiative, NIH awarded seven
grants in September 2001 to support the development and/or
refinement of treatments for core and secondary symptoms of
autism. The grants were funded through the NIH/ACC, with four
Institutes contributing funds to this effort: NIMH, NICHD,
NINDS, and NIDCD. The grants are for 3 years each, totaling
$2.9 million dollars over 3 years. These grants were solicited
by a Request for Applications (RFA) on "Innovative Treatments
in Autism" that NIH issued in 2000 and was part of an
initiative that grew from a meeting on autism treatment methods
held by the NIH/ACC in 1999. The grants address psychosocial
treatments for teaching speech, imitation, and joint attention
skills; psychopharmacology for behavioral problems, emotional
dysregulation, and cognitive deficits; and testing of an animal
model of self-injurious behavior. Awards were made to seven
institutions across the country: University of Pittsburgh,
Pittsburgh, PA; Mount Sinai School of Medicine, New York City,
NY; University of California, Los Angeles, CA; University
of Colorado Health Sciences Center, Colorado Springs, CO;
Vanderbilt University, Nashville, TN; Children's Hospital
Medical Center, Cincinnati; and Rutgers Slate University,
New Brunswick, NJ.
The NICHD/NIDCD Network on the Neurobiology and Genetics
of Autism
The NICHD/NIDCD Network on the Neurobiology and Genetics of
Autism consists of 10 Collaborative Programs of Excellence
in Autism (CPEA) that link together more than 75 researchers
in 26 universities and more than 2500 families of people with
autism. This Network requires each CPEA both to conduct a
cohesive, site- specific, multidisciplinary research program
on the causes, brain structure and function, and clinical
development in autism disorders and to participate in some
trans-Network collaborative studies that no one project has
the needed expertise and/or subject population to investigate
individually. The CPEA Network is in turn linked to a six-nation
European autism consortium. The CPEA Network is now studying
the world's largest group of well- diagnosed people with autism
for whom both genotype and extensive phenotype data will be
available. In addition, because of their combined clinical
and scientific resources, the CPEAs address urgent public
health questions when appropriate, including the study of
the neuropeptide secretin for treatment of autism and the
study of regression or late onset autism. The major CPEA sites
are located at Albert Einstein Medical School in New York,
NY; Boston University, Boston, MA; University of California,
Irvine, CA; University of California, Los Angeles, CA; University
of Colorado Health Sciences Center, Colorado Springs, CO;
University of Washington, Seattle, WA; University of Pittsburgh,
Pittsburgh, PA; University of Rochester, Rochester, NY; University
of Utah, Salt Lake City, UT; and Yale University, New Haven,
CT.
NIH has solicited applications from these sites for competitive
review to be considered for an additional 5 years of funding.
In addition, NIH will establish a data-coordinating center,
designed specifically to expedite and maximize analysis of
the data generated by the CPEA research projects. The NICHD
and NIDCD plan to allocate $60 million in that time period
to sustain and enhance the CPEAs.
The NICHD/CDC Study on the Relationship between Autism
and Vaccines
The NICHD and CDC are co- sponsoring a study of the possible
association of symptoms of regressive autism with measles,
mumps, and rubella (MMR) vaccinations. Regressive autism involves
a relatively rapid onset of loss of a child's skills, typically
involving loss of speech or words, but can include changes
in social behavior or the onset of repetitive behaviors that
can interfere with development. Regressive autism usually
occurs during the second year of life. Among children diagnosed
with autism, it is estimated that between 20-39 percent experienced
regressive autism. The remainder of these children experience
a more gradual development of symptoms related to autism.
The MMR study, which began in September 2000, is examining
the medical and developmental records of 1,200 well-diagnosed
cases of autism (including regressive and non-regressive)
and a large number of healthy controls to assess whether there
is a temporal relation between receipt of the MMR vaccine
(and possibly other vaccines) and the onset of symptoms in
early onset autism and regressive autism. The next phase of
the study will use laboratory tests to assess the levels of
measles antibody titers and to search for evidence of persistent
measles infection in blood that could be attributed to the
MMR vaccine in early onset and regressive autism cases and
matched controls. Data have been collected on regressive vs.
nonregressive autism at several CPEA sites. Those data are
being consolidated for analysis; they are necessary to establish
that the regressive autism group differs from nonregressive
autism and to facilitate more precise comparisons to normal
controls. Preliminary results were presented at the International
Meeting For Autism Research in November 2001.
Children's Centers for Environmental Health and Disease
Prevention
NIEHS and the Environmental Protection Agency (EPA) have
funded two new Children's Centers for Environmental Health
and Disease Prevention that will focus research on potential
environmental factors that may be related to autism. The centers
will each be funded at $5 million, or approximately $1 million
per year for 5 years beginning in August 2001. The new Children's
Center at the University of California at Davis (UC Davis)
will investigate how environmental risk factors may contribute
to childhood autism. There has been speculation among both
parents and health professionals that prenatal or early postnatal
exposure to various meials or chemicals or even vaccines may
trigger autism. To help address this concern, the Center's
research will include a large case-control epidemiological
study of various exposures and the development of autism.
This Center will also conduct research to develop new animal
models for studying social interaction and the impact of neurotoxicants
on social behavior. Additional studies will focus on elucidating
the cellular and molecular mechanisms by which specific neurotoxicants
can perturb critical neuronal functions during development.
The team of investigators will include scientists from the
NIEHS Environmental Health Sciences Center at UC Davis and
the NIEHS Superfund Basic Research program, also at UC Davis.
The work will be carried out within the infrastructure of
the UC Davis M.I.N.D. (Medical Investigation of Neurodevelopmental
Disorders) Institute, which has a strong relationship with
the autism advocacy community.
The newly funded Children's Center at the Robert Wood Johnson
Medical School of the University of Medicine and Dentistry
of New Jersey will seek to determine the possible influence
of mercury, lead, and valproic acid (a drug commonly used
to control seizures) on autism, learning disabilities, and
regression. Studies to be conducted will look at critical
windows for brain development in the forebrain and hindbrain
and will attempt to link exposures or disturbances at these
times to subsequent behavior. Researchers also will look for
differences in genetic susceptibility of children to environmental
toxicants. Researchers will use brain imaging to determine
whether children with higher exposures to environmental toxicants
have different patterns of brain growth and development.
NIH/ACC Annual Scientific Meeting
Each year, the NIH/ACC organizes a conference to focus
attention on a selected topic in autism. NICHD and NIEHS sponsored
this year's conference, held September 6-7, 2001, in Bethesda,
MD, with NIHM, NINDS and NIDCD as cosponsors. The overall
objective was to discuss possible cellular and molecular mechanisms
for autism and related disorders, as well as new animal models
and methodologies to study autism. The meeting included a
special session on potential environmental factors that may
be relevant to autism. Over 140 individuals attended the meeting,
including scientists from the United States and abroad who
study autism and related disorders and representatives from
many of the major autism advocacy groups. NIH is preparing
a meeting report that summarizes the findings presented and
that identifies needs and opportunities for future research.
The final report will be available on the NICHD Web site.
Identification of Biomarkers
Better understanding of the etiology and path physiology
of autism is essential to the development of strategies for
prevention and treatment. The identification of biological
markers, functional and behavioral measures, and neuroanatomical
correlates for the disorder would enable progress toward this
understanding. In March 2001, the NINDS assembled a small
group of extramural and NINDS intramural researchers with
expertise in autism or brain growth factors and brain anatomy
for an exploratory discussion of current understanding in
these areas. The Institute is considering the information
from this meeting to chart future research directions. In
addition, NINDS intramural researchers are working hard to
study the biology of autism, using neonatal bloodspot specimens
for microassays and several new techniques for their analysis;
to study biomarkers in conjunction with longitudinal studies
of volumetric MRI brain imaging; and to pursue questions about
immune function in autism.
Program Announcement on Research on Autism and Autism Spectrum
Disorders
NIH issued a program announcement on Research on Autism
and Autism Spectrum Disorders (see http://grants.nih.gov/grants/guide/pa-fi1es/PA-01-051.html)
in February 2001. This is a standing announcement from the
NIH/ACC Institutes to encourage grant applications for the
support of research designed to elucidate the diagnosis, epidemiology,
etiology, genetics, treatment, and optimal means of service
delivery in relation to Autistic Disorder ("autism")
and autism spectrum disorders (Rett's Disorder, Childhood
Disintegrative Disorder, Asperger's Disorder, Pervasive Developmental
Disorder-Not Otherwise Specified, or "Atypical Autism").
b. Centers of Excellence
The Children's Health Act of 2000 calls for NIH to establish
at least five Centers of Excellence in Autism Research. NIH
took several steps in 2001 to begin implementing a centers
program that will meet all of the specifications of the Act
regarding the organization, scientific goals, and other activities
of these centers.
To help interested groups of investigators prepare to submit
high- quality applications to become autism centers, the NIH
issued an RFA on "Developmental Grants for Autism Centers
of Excellence" (see http:llgrants.nih.gov/grants/guide/rfa-files/RFA-MH-01-013.html).
The RFA is jointly sponsored by the NIMH, NICHD, NINDS, NIDCD
and NIEHS. This RFA, issued in April 2001, was designed to
provide developmental grants to teams of investigators to
enhance their ability to plan, organize, and demonstrate the
feasibility of their autism research efforts as they prepared
applications for comprehensive center support over the following
year. The deadline for developmental grant applications submitted
in response to this RFA was July 12, 2001.
Each award under this RFA was for 1 year and a maximum of
$100,000 for direct costs ($125,000 if multiple institutions
were involved; thus, the total cost--direct costs and facilities
and administration costs- - of each grant would range from
about $150,000 to $175,000). NIH anticipates that the developmental
grants RFA will be a one-time solicitation. These developmental
grants are intended for investigators who will apply for centers
support by an August 2002 deadline to become part of the centers
program; NIH anticipates funding of successful applications
in FY 2003. Under the developmental grant RFA, six grants
were awarded by the targeted funding date of October 1, 2001.
NIH made these awards to teams of investigators engaged in
promising autism research at the University of California,
Davis, M.I.N.D. Institute; Emory University, Atlanta; the
University of Florida, Gainesville; the University of Utah,
Salt Lake City; the University of Missouri, Columbia; and
Washington University, St. Louis.
NIH also implemented a parallel funding initiative intended
for applicants who wished to apply for center support on an
earlier timeline, without participating in the developmental
grant process. To this end, NIH released, in mid-June 2001,
an RFA (see http://grants.nih.gov/grants/guide/rfa-files/RFA-MH-02-001.html)
that formally solicited proposals for comprehensive centers
of excellence in autism research, with a deadline for applications
of November 29, 2001. The comprehensive centers required by
the Children's Health Act will be called STAART (Studies to
Advance Autism Research and Treatment) Centers. NIH anticipates
beginning funding of successful STAART applications in June
2002, with contributions from the NIHM, NICHD, NINDS, NIDCD
and NIEHS. In addition, researchers who unsuccessfully applied
for developmental grants (the July 12, 2001, deadline) or
comprehensive center grants (the November 29, 2001, deadline)
may submit a revised application for STAART center support
by the August 2002 deadline. New applicants also may apply
for STAART center support. NIH will issue a new RFA to solicit
applications for the second receipt date. Thus, applicants
can compete for STAART support in one of three ways:
- applying for a developmental grant in July 2001, with
the intention of then applying for a comprehensive center
grant in August 2002;
- applying for a comprehensive center grant in November
2001, with the option to re-apply in August 2002 if unsuccessful;
or
- applying for a comprehensive center grant in August 2002.
NIH estimates that the total funds (direct costs and facilities
and administration costs) available to support all the awards
made under these and subsequent RFAs for the STAART Centers
Program will be $12 million per year. NIH will use this amount
to fund the complement of at least five centers, a data coordination
center, and collaborative projects among the centers. Whether
there are subsequent rounds of competition will depend on
the number of centers funded in these first two rounds. The
ultimate number of centers funded will be at least five and
will depend upon the merit of the applications received and
the funds available. NIH will distribute the majority of the
$12 million pool of funds to successful center applicants
to support the activities specific to each center. NIH will
distribute a separate portion of the funds for specific cooperative
projects among the centers and another portion of the pool
for a data coordination center (for which there will be a
separate RFA in the future). The Steering Committee of the
STAART Centers Program will determine the exact nature of
the cooperative studies.
c. Facilitation of Research
NIH has undertaken several activities to increase the quality
and availability of genetic and tissue resources to the autism
research community. The NIMH Genetics Repository has expanded
its activities in the domain of collecting blood samples,
creating cell lines, and distributing genetic materials to
be used in autism research. This is a national resource that
collects, stores, and distributes such materials very broadly
across the scientific community. NIMH has also worked with
the genetics data bank supported by Cure Autism Now, which
resulted in a grant application that received high marks in
peer review and can now be funded. This grant, to be funded
by multiple NIH Institutes, will support the continued activities
of the genetic data bank, a resource that distributes genetic
materials broadly to the autism research community. Also,
NIH structured the RFA for the STAART Centers Program so that
these centers, when funded, will become a national resource
for genetics studies, greatly expanding available resources.
The CPEA program also will continue its ongoing, extensive
activities in the collection of genetic data within its research
network. The NINDS continues to support promising research
in the genetics of autism, including core support for the
development and expansion of genetics resources.
In the area of tissue resources, NIH Institutes have continued
and expanded their support of existing tissue collection and
distribution resources at several sites. Postmortem brain
tissue offers a unique, high-resolution window into the inner
workings of brain cells. Only with access to brain tissue
can researchers uncover the underlying neuropathology of autism.
NIH currently supports ongoing efforts at four tissue banks
around the country (Harvard, UCLA, the University of Maryland
and the University of Miami) to collect and make this vital
resource available to researchers. Recently, NICHD awarded
special supplements to target acquisition of necessary biologic
materials from individuals with autism for focused study.
In addition, NIMH has just issued an RFA to enhance activities
in this arena for several disorders, including autism. NIH
also anticipates that the STAART Centers Program will provide
enhanced resources for tissue-based research in autism.
d. Public Input
NIH is committed to bringing public views to its activities,
programs, and decision-making; to conveying information about
NIH processes and progress to a broad public; and to seeking
comment about its operations and help evaluating its performance.
NIH offers many opportunities for public participation, including
the NIH Director's Council of Public Representatives (COPR)
meetings, the individual Institute council meetings, and specially
conducted public forums around the country. In addition, some
Institutes, such as the NIMH, solicit public participant reviewers
on Scientific Review Groups for treatment and services research
grant applications. The NIMH also widely disseminated an invitation
with nomination procedures to patients, consumers, family
members, service providers, policymakers, and educators regarding
serving as public participants. NIMH staff reviewed the nominations
and chose public participants after a rigorous review process.
Members of the autism advocacy community are among the public
participants currently serving and offering unique perspectives
on NIMH scientific review committees.
Each Institute and Center and the Office of the NIH Director
have set up Public Liaison Offices. They reach out to constituency
groups and serve as contact points for the public, especially
with regard to policy matters. The Office of Public Liaison
is also the central point within an Institute to which Members
of Congress can refer their constituents. For the last two
years, the NIH Public Liaison Officers have held a special
meeting with members of the autism advocacy community to exchange
information.
As a result of the first meeting, NINDS developed a listserv
(maintained by NIMH) of the e-mail addresses of advocacy group
members, which continues to update those who register with
news of interest to the autism community. Also, the National
Library of Medicine's Medline Plus Web site for autism became
a significant topic of discussion and increased effort in
response to the autism parents meeting last year (http://medlineplus.nlm.nih.gov/medlineplus/autism.html).
This is a searchable site with numerous links. It provides
the latest news, research (with the ability to do a Medline
search of the relevant scientific literature), names of autism
advocacy organizations, information on rehabilitation and
treatment news on specific conditions such as Asperger's,
information on related issues such as vaccines (with a link
to the CDC), and links to the specific NIH/ACC Institutes:
On March 30, 2001, the NIH/ACC held a meeting with representatives
of autism research advocacy groups. NIH has held such a meeting
each year since 1998. The 2001 meeting was well attended,
with the majority of the major national groups represented.
The Directors of four NIH/ACC member Institutes were present,
as were a number of program staff from these and other Institutes,
agencies, and the Department of Education. The group frankly
discussed many issues, most of them having to do with aspects
of the Children's Health Act. For example, the group extensively
discussed the strategy for implementing the Centers of Excellence
program, plans for the CPEA program, and the Interagency Autism
Coordinating Committee (IACC).
Section 102--Developmental disabilities surveillance and
research programs
a. National Autism and Pervasive Developmental Disabilities
Surveillance Program
In 1998, CDC initiated one of the few programs in the
world that conducts active, ongoing monitoring of the prevalence
of autism spectrum disorders (ASD) in children in Atlanta,
Georgia. CDC currently is analyzing data from the first year
of monitoring, which will provide one of the most complete
and comprehensive assessments of ASD prevalence in a large
U.S. metropolitan area.
In 2000, CDC funded six States--Arizona, New Jersey, Delaware
and Maryland (joint), South Carolina, and West Virginia--to
monitor the prevalence of ASD. These States are adapting the
model developed in CDC's Atlanta monitoring program for their
local area. In the first year, the States focused on hiring
staff, developing protocols, establishing collaborations with
education agencies and clinical providers, and obtaining institutional
review board and other approvals. In September 2001, CDC provided
additional funding to 4 of the States (Arizona, New Jersey,
South Carolina, and West Virginia) to continue their surveillance
projects (Maryland/Delaware received funding through the Centers
mechanism- - see below). Data collection in these States is
expected to begin in 2002. The established surveillance programs,
whether as a State Autism Surveillance Project or as part
of a Center of Excellence, will collaborate in their surveillance
efforts under the newly established Alliance for Research
in Child Health and Epidemiology (ARCIIE) network.
b. Centers of Excellence in Autism and Pervasive Developmental
Disabilities Epidemiology
In September 2001, CDC funded four Centers of Excellence
in Autism and Pervasive Developmental Disabilities Epidemiology
to conduct collaborative studies on the number, incidence,
and causes of autism and related developmental disabilities.
The four Centers are the following: (1) Johns Hopkins University,
which will identify cases of autism in northeastern Maryland
and the entire state of Delaware; (2) the University of Pennsylvania,
which will cover the Philadelphia metropolitan area; (3) the
Colorado Department of Public Health, which will concentrate
on identifying cases in the Denver area; and (4) the California
Department of Health Services, which will ascertain cases
of autism statewide, with more intensive monitoring in the
San Francisco Bay area. In addition to conducting surveillance
of autism in their areas, the Centers will also collaborate
on combined case- control studies of factors that may cause
autism and related developmental disabilities. Each Center
has expertise in diverse areas relevant to the epidemiology
of autism, its causes, and possible interventions; each will
conduct specific research focusing on its areas of particular
strength, such as genetics and immunology (Johns Hopkins University),
biological markers (California), screening (Pennsylvania),
and comorbidity (Colorado). The first meeting of the Centers
investigators was held November 27-29, 2001, in Atlanta, Georgia.
c. Clearinghouse
(1) "The Secretary shall establish a clearinghouse
within the Centers for Disease Control and Prevention for
the collection and storage of data generated from the monitoring
programs established by this title." As part of the Centers
of Excellence in Autism and Pervasive Developmental Disabilities
Epidemiology, CDC will establish a clearinghouse on policies
and research methods that can be used to facilitate the establishment
and operation of surveillance projects and epidemiological
studies of autism and related pervasive developmental disabilities.
Any materials or information developed by the ARCIIE network
(Centers and States) that may be useful for the public or
other researchers will be made available through the clearinghouse
(for example, results of epidemiological studies; publications;
research protocols, including questionnaires and other instruments;
guidelines on accessing educational and clinical records,
including privacy and confidentiality of records and databases;
community outreach strategies; and educational materials for
professionals, families, schools and the general public).
Planning for a clearinghouse function has been under way
as part of the State surveillance programs. An Education and
Outreach Committee has been canvassing the autism information
resources in each State, assessing information needs, and
planning a central interactive Web site. The Centers now will
also be included in these efforts. This communication tool
will provide timely access to reports and other information
among CDC staff, grantees, and the general public. It is expected
that at least a first stage of a Web site will be operational
by September 2002.
(2) "The Secretary shall coordinate the Federal response
to requests for assistance from State health department officials
regarding potential or alleged autism or developmental disability
clusters." In 2001, CDC completed and reported the results
of a community-based prevalence study conducted in response
to the concern of parents regarding a possibly larger than
expected number of children with ASD in Brick Township, New
Jersey. The study found 6.7 cases of ASD per 1000 children,
a relatively high rate compared with European studies, but
little information on rates in the United States exists for
comparison. The State surveillance projects and Centers surveillance
activities will provide vital background data for evaluating
potential clusters of autism.
Section 103--Information and education
Section 103 is not included in this report because it calls
for the Secretary to "establish and implement a program
to provide information and education on autism to health professionals
and the general public, including information and education
on advances in diagnosis and treatment of autism and training
and continuing education through programs for scientists,
physicians, and other health professionals who provide care
for patients with autism." The establishment of such
a program was discussed at the inaugural Interagency Autism
Coordinating Committee (IACC) meeting on November 19 at NIH,
and another agency that will be instrumental in implementing
this section of this Act--the Health Resources and Services
Administration--was invited to participate in the IACC. NIH
does provide education and information to the public about
research results on diagnosis and treatment, but it is not
authorized to provide education programs specifically for
physicians and public health professionals.
Section 104--Interagency Autism Coordinating Committee
a. Establishment
Section 104 mandated the establishment of an interagency
autism coordinating committee to coordinate autism research
and other efforts within the Department of Health and Human
Services (DHHS). Secretary Tommy Thompson delegated the authority
to establish the JACC to the National Institutes of Health
(NIH) in April 2001. The National Institute of Mental Health
(NIMH) at the NIH has been designated the lead for this activity.
b. Membership
The Committee's primary mission will be to facilitate
the effective and efficient exchange of information on autism
activities among the member agencies and to coordinate autism-related
activities.
P.L. 106-310 specifies that the Secretary may appoint parents
or legal guardians of individuals with autism or other pervasive
developmental disorders to the Committee. Such appointments
are necessary and vital to the conduct of the Committee' smission.
In particular, public members of the IACC will bring to DHHS
the concerns and interests of members of the autism community.
The JACC will serve as a forum and help to increase public
understanding of the member agencies' activities, programs,
policies, and research and will bring important matters of
interest forward for discussion. The Secretary appointed four
public members.
Governmental agencies represented include the following:
NIH/ACC members (NIMH, NICHD, NIDCD, NIEHS, and NINDS), CDC,
the Administration for Children and Families [(ACF) the Administration
on Developmental Disabilities], the Food and Drug Administration
(FDA), the Agency for Toxic Substances and Disease Registry
(ATSDR), and the Department of Education. The Secretary selected
four public members. A summary of the meeting is posted when
available on the NIMH Web site (see http://www.nimh.nih.gov/events/interagencyautism.cfm).
The agenda and highlights from this inaugural meeting are
attached as an appendix to this report.
Section 105--Report to Congress
Section 105 requires the Secretary of HHS to submit an annual
report to Congress "concerning the implementation of
this title and the amendments made by this title." The
first annual report was submitted in July 2001. This second
annual report reflects IIIIS activities through November 2001.
Other Autism-Related Activities
The Food and Drug Administration's Center for Biologics
Evaluation and Research (CBER) participated, by invitation,
in the March and July 2001 meetings of the Institute of Medicine's
Immunization Safety Review Committee.
Researchers at CBER continue to characterize and develop
the first virus-induced animal model for autism as well as
conduct studies on vaccine safety and the developing nervous
system. Further, CBER is conducting a follow-up study of reports
made to the Vaccine Adverse Event Reporting System (VAERS)
of cases of autism following vaccination.
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