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pdf About the IACC
The Interagency Autism Coordinating Committee (IACC) was established by
Congress under the Combating Autism Act of 2006 (CAA) to provide advice
to the Secretary of Health and Human Services (HHS) and coordinate all
efforts within HHS concerning autism spectrum disorders (ASD).
As mandated by law, the IACC has a membership composed of federal
officials from agencies involved in autism research and services and public
members, including people with ASD, parents of children and adults with
ASD and members of the autism advocacy and research community. The
diversity of the committee ensures that a broad range of views and opinions
is reflected and discussed in a public forum.
Under the CAA, the IACC is required to: (1) Develop and annually update a
strategic plan for ASD research, (2) develop and annually update a summary
of advances in ASD research, and (3) monitor federal activities related to
ASD.
In completing the first IACC Strategic Plan for Autism Spectrum Disorder
Research in 2009 and releasing this first update of the plan in 2010, the IACC
has laid out a framework for the pursuit of critical biomedical and services
research. Through activities such as public meetings and workshops,
publication of an annual Summary of Advances in ASD Research,
dissemination of information regarding ASD research and IACC activities,
gathering of public input and coordination of federal activities related to
autism, the IACC continues in its effort to provide guidance to the
Department of Health and Human Services and to reach out to the broader
autism community to find ways to work together to help people with autism
and their families.
***
For more information about the IACC, see: www.iacc.hhs.gov
Table of Contents
Introduction ...................................................................................................................................... 1
Vision Statement................................................................................................................................. 3
Mission Statement .............................................................................................................................3
Core Values ..........................................................................................................................................3
Crosscutting Themes .........................................................................................................................4
Question 1: When Should I Be Concerned? ............................................................................7
Question 2: How Can I Understand What Is Happening? ...............................................11
Question 3: What Caused This To Happen and Can It Be Prevented? ........................ 16
Question 4: Which Treatments and Interventions Will Help? ..................................... 23
Question 5: Where Can I Turn For Services? ...................................................................... 29
Question 6: What Does The Future Hold, Particularly For Adults? .............................33
Question 7: What Other Infrastructure and Surveillance Needs Must Be Met.........37
Research Resources ................................................................................................................... 42
References ....................................................................................................................................... 46
Committee Roster .........................................................................................................................53
Preface
With recent reports that autism spectrum disorder (ASD) is becoming increasingly prevalent
– now estimated to affect about 1 percent of children in the United States – efforts to
accelerate the research field take on even greater urgency.
In developing the 2010 Strategic Plan for ASD Research, the Interagency Autism Coordinating
Committee (IACC) updated the previous Plan to highlight the most pressing research needs
and opportunities for the field today. The Plan, which must be annually updated in
accordance with the Combating Autism Act (CAA) of 2006, provides a blueprint for autism
research that is advisory to the Department of Health and Human Services and serves as a
basis for partnerships with other agencies and private organizations involved in autism
research and services. In the process of developing the 2010 update of the Plan, the committee
collected feedback from scientists, advocacy groups, research funding organizations, and
members of the public to guide their efforts to refine the first version released in 2009.
“On this first update of the Plan, the IACC really put its shoulder to the wheel, adding not only
new objectives but a new chapter, as well,” said Dr. Thomas Insel, M.D., IACC Chair and
Director of the National Institute of Mental Health (NIMH), part of the National Institutes of
Health (NIH).
These substantial revisions, which include the addition of a new chapter on infrastructure,
came after a yearlong process in which the IACC conducted a comprehensive analysis of
current ASD research funding and summarized major research advances in the previous year.
The IACC also revised the 2009 Plan based on public input through a formal Request for
Information, a Town Hall meeting, and other public comments. During a twoday workshop,
invited panelists considered all of this information as they made recommendations for the
update.
During the updating process, the IACC heard the need for more research on adults, more focus
on nonverbal people with ASD, and the need for better infrastructure for research – from
biological specimen repositories to better surveillance. The 2010 Strategic Plan addresses
these needs and has developed additional objectives with recommended budgets for the
research.
ASD research has become a national priority, receiving a massive surge in funding through
the American Recovery and Reinvestment Act (ARRA) of 2009. With greater financial
resources and the 2010 Strategic Plan to direct future work, researchers have been given the
tools to make great strides in understanding ASD, developing potential interventions, and
improving quality of life for people with ASD and their families.
Introduction 2010
The Interagency Autism Coordinating Committee (IACC) Strategic Plan
for Autism Spectrum Disorder Research
Introduction
Two decades ago, autism was a little
known, uncommon disorder. Today, with
prevalence estimates increasing at an
alarming pace, autism is emerging as a
national health emergency. Autism is now
recognized as a group of syndromes
denoted as autism spectrum disorder
(ASD). The most recent Centers for
Disease Control and Prevention (CDC)
prevalence estimates of ASD for children
are 1 in 110 (CDC, 2009). These
estimates, more than ten‐fold higher than
two decades ago, raise several urgent
questions: Why has there been such an
increase in prevalence? What can be done
to reverse this alarming trend? How can
we improve the outcomes of people
already affected, including youth and
adults?
The cost of ASD to affected people,
families, and society is enormous. A great
majority of adults with ASD struggle with
ongoing and mostly unmet needs for
employment, housing, services, and
supports. Compounding these stressors,
families with a child with autism typically
lose income, possibly as a result of one
parent leaving the workforce in order to
care for and meet the special health and
educational needs of the child (Montes &
Halterman, 2008). The cost to society of
ASD is currently estimated to be $35‐$90
billion annually, the higher estimate being
comparable to Alzheimer’s disease (Ganz,
2007; Järbrink & Knapp, 2001). Although
research on ASD has expanded over the
past decade, there remains an urgent
need for continuing research support.
Approaches to ASD diagnosis have
evolved as more has been learned about
the disorder. Currently, ASD is diagnosed
on a combination of behavioral
characteristics of impairment in verbal
and nonverbal communication skills and
social interactions, and restricted,
repetitive, and stereotyped patterns of
behavior, and these can range in impact
from mild to significantly disabling.
Adequately addressing these conditions
requires sophisticated educational and
therapeutic approaches. Some people
with ASD also have a range of medical
conditions including, but not limited to:
motor and sensory impairments, seizures,
immunological and metabolic
abnormalities, sleep problems, and
gastrointestinal symptoms.
It is imperative that resources be devoted
to research commensurate with the
public health need. Specifically, we need
research that deepens our understanding
of ASD, including the complex genetic and
environmental factors that play a role in
its causation; development of improved
ASD diagnostic approaches and
treatments; and science to enhance the
level of services and supports available to
people with ASD, their families and
caregivers. With current scientific
knowledge and tools, we have
unprecedented potential for discoveries
that will improve the quality of life for
people with ASD.
IACC Strategic Plan for ASD Research |1
Introduction 2010
In response to the heightened societal
concern over ASD, Congress passed the
Combating Autism Act (CAA) of 2006 (P.L.
109‐416). Through this Act, Congress
intended to rapidly increase, accelerate
the pace, and improve coordination of
scientific discovery in ASD research. The
CAA requires the Interagency Autism
Coordinating Committee (IACC) to
develop and annually update a Strategic
Plan for ASD research, including proposed
budgetary requirements.
Driven by both the sense of urgency and a
spirit of collaboration, the IACC
developed an initial Strategic Plan for ASD
Research in 2009 and revised it in 2010 in
accordance with the CAA. The Plan and its
revisions were developed through
extensive and iterative input from
members of the public, academic, and
advocacy communities. In developing and
revising the Strategic Plan, the IACC:
!
Identified recent investments
and accomplishments in ASD
research.
!
Assessed the strengths,
weaknesses, opportunities, and
gaps in the ASD research
enterprise.
!
Gathered ideas for research
opportunities from a diverse
group of stakeholders.
!
Convened four scientific
workshops and solicited input
from the public and non‐
government research sponsors
to identify research
opportunities.
!
Convened expert workgroups
to recommend research
objectives and strategies.
!
Convened programmatic and
agency experts to develop and
recommend professional
judgment budget estimates for
each objective in the Plan.
!
Convened a scientific
workshop to review and revise
the Strategic Plan in 2009.
The Strategic Plan incorporates this array
of input in two main sections. First, the
foundation of the Plan – vision, mission,
core values, and crosscutting themes – is
described. The remainder of the Plan is
organized around seven critical questions
asked by people and families living with
ASD.
!
When should I be concerned?
!
How can I understand what
is happening?
!
What caused this to happen
and can this be prevented?
!
Which treatments and
interventions will help?
!
Where can I turn for
services?
!
What does the future hold,
particularly for adults?
!
What other infrastructure
and surveillance needs must
be met?
2|IACC Strategic Plan for ASD Research
Vision Statement, Mission Statement, and Core Values 2010
Each question is followed by a brief
discussion of what we currently know
and need from research, an aspirational
goal, research opportunities and
objectives. This framework was chosen by
the IACC to emphasize the need for
consumer‐focused research that
addresses the most pressing questions of
people and families living with ASD, and
to link these questions to specific
research efforts.
Vision Statement
The Strategic Plan will accelerate and
inspire research that will profoundly
improve the health and well being of
every person on the autism spectrum
across the lifespan. The Plan will set the
standard for public‐private coordination
and community engagement.
Mission Statement
The purpose of the Strategic Plan is to
focus, coordinate, and accelerate high
quality research and scientific discovery
in partnership with stakeholders to
answer the urgent questions and needs of
people on the autism spectrum and their
families.
Core Values
The IACC adopted these core values and
emphasized their importance for the
Strategic Plan development and
implementation:
Sense of Urgency – We will focus
on what steps we can take to
respond rapidly and efficiently to
the needs and challenges of people
and families affected by ASD.
Excellence – We will pursue
innovative basic and clinical
research of the highest quality to
protect the safety and advance the
interests of people affected by
ASD.
Spirit of Collaboration – We will
treat others with respect, listen to
diverse views with open minds,
discuss submitted public
comments, and foster discussions
where participants can
comfortably offer opposing
opinions.
Consumerfocused – We will
focus on making a difference in the
lives of people affected by ASD,
including people with ASD, their
families, medical practitioners,
educators, and scientists. It is
important to consider the impact
of research on the human rights,
dignity, and quality of life of
people with ASD from prenatal
development forward.
Partnerships in Action – We will
value cross‐disciplinary
approaches, data sharing,
teamwork, and partnerships with
clearly defined roles and
responsibilities.
Accountability – We will develop
SMART (Specific, Measurable,
Achievable, Realistic, and Time‐
bound) research objectives aligned
with funding priorities and
develop systems for evaluation,
assessing impact, and course
corrections.
IACC Strategic Plan for ASD Research|3
Crosscutting Themes 2010
Crosscutting Themes
The Strategic Plan for ASD Research is
designed to highlight the most promising
research ideas, while appreciating the
inherent unpredictability of research.
These ideas form the basis for the
research opportunities and objectives of
the Strategic Plan. In the process of
gathering ideas from ASD stakeholders
for this Plan, certain themes emerged
repeatedly. These themes are highlighted
here to emphasize their importance
across the framework.
Heterogeneity: Although certain
core features are present at
varying degrees among all people
with ASD—i.e., social impairments,
communication difficulties, and
stereotyped behaviors—
considerable heterogeneity exists
as well. In the context of ASD, the
term heterogeneity refers to the
constellation of behavioral and
medical conditions and symptoms
that may accompany the disorder.
The spectrum includes people with
ASD who are nonverbal and
cannot live independently, and
others who find gainful
employment and live
independently. There is little
reason to assume that this
spectrum identifies a single
disorder. Rather, the spectrum
encompasses a range of disorders.
The heterogeneity of ASD poses
both challenges and opportunities
to researchers: challenges, because
there are likely to be many
different causal factors and
trajectories for ASD subtypes, and
opportunities, because recognition
of the variety of ASD phenotypes
can lead to more appropriate
diagnosis, more precisely targeted
treatments, and increased public
awareness about the diversity
inherent in ASD. Heterogeneity has
a profound impact on the priorities
and tactics of ASD research,
because any given study must
either focus on a particular focal
point on the spectrum, or must be
sufficiently complex and resourced
to encompass a broader range
along the spectrum.
Acknowledging heterogeneity also
has implications for intervention.
With multiple causes and
symptoms, there likely will be
multiple ways and approaches to
intervene (e.g., medical,
behavioral, nutritional). In so
doing, the ASD field will be more
strategically positioned to
determine what works best for
which people.
Prevention: It is critical for
research to identify the methods
and approaches that can be used to
prevent the challenges and
disabilities of ASD. Additionally, if
one views ASD as a biological
disorder triggered in genetically
susceptible people by
environmental factors, then
prevention can include prevention
of new cases of ASD through the
identification and elimination of
environmental causes. What is
essential for ASD research is to
develop the state of knowledge to
a level similar to what is now
available in fields such as
cardiology. No longer do we need
to wait for someone to suffer a
heart attack before providing life‐
saving treatments. Rather, early
interventions are applied upon the
4|IACC Strategic Plan for ASD Research
Crosscutting Themes 2010
detection of risk factors so as to
preempt these more serious
consequences. Having sound
research on the risk factors and
the environmental triggers for ASD
ultimately may allow us to achieve
the goal of prevention: preventing
the development of the disorder in
some people at risk or reducing
the degree of severity in those
affected.
Earlier Detection: ASD is a
developmental brain disorder that
is currently diagnosed by the
observation of core behavioral
symptoms. As with many
neurodevelopmental disorders,
brain dysfunction may precede
abnormal behavior by months or
even years. However, without
biomarkers to detect people either
with or “at risk” for ASD during
pre‐ or neonatal periods, diagnosis
must rely on behavioral
observations long after birth. As a
result, intervention efforts may
miss a critical developmental
window. Until recently, most
children with ASD in the United
States (U.S.) did not receive a
diagnosis until school age, and
diagnosis was further delayed
among disadvantaged or rural
populations (Mandell et al., 2007).
It is critical that the field enhance
methods for detecting ASD earlier
in life and across diverse
populations, in order to bring
about earlier intervention.
Furthermore, a recurrent theme
expressed during the scientific
workshops for the Plan was the
need for biomarkers to identify
ASD risk before the behavioral
manifestations and the delayed
developmental trajectory are
established.
Lifespan Perspective:
Historically, ASD has been
characterized as a disorder of
childhood. Although most people
with ASD will not outgrow their
diagnosis, their symptoms will
change in form and severity over
time. There was great support
during the development of this
Plan for more research on ASD in
older people, especially the need
for practical strategies for
increasing the quality of life and
functioning of adolescents and
adults with ASD. As people with
ASD advocate for themselves and
expand our knowledge of their
experiences and needs, they
become partners in the research
effort.
Data Sharing: Data sharing allows
researchers to: (a) validate the
research results of other
investigators; (b) pool
standardized information collected
by many different researchers to
facilitate rapid progress; and, (c)
use data collected by others to
explore hypotheses not considered
by the original investigators. The
expectations for data sharing have
increased with the recognition that
larger samples are needed to
answer many research questions
and with the sense of urgency for
making progress. Databases for
neuroimaging scans and genomic
sequence are already proving
important for ASD research. Wide
adoption of a standardized data
sharing system like the National
Database for Autism Research
IACC Strategic Plan for ASD Research|5
Crosscutting Themes 2010
(NDAR) can provide the necessary
infrastructure to combine
important research participant
data and thereby propel ASD
research forward.
Resources: In addition to data
sharing, research often depends on
the availability and quality of
research resources, such as access
to scientific instruments and
repositories of biospecimens. An
important resource, paradoxically,
is the identification, assessment,
and collection of biospecimens
from people who do not have the
disorder, as a basis for
comparison. Such comparison
groups serve a critical role in
interpreting ASD research and
findings. Moreover, human
resources such as adequate
numbers of well‐trained
researchers and administrators
are vital to these efforts. This need
cannot be understated. Attracting
a cadre of rigorously trained
researchers, including those
outside the ASD research field, will
foster innovative ideas and inter‐
disciplinary approaches.
development and implementation
of the Strategic Plan for ASD
Research. In fact, the Strategic Plan
is built on the premise that the
public and private sectors will
work collaboratively to better
leverage resources to advance the
research opportunities and
objectives put forth in the Plan.
Community Engagement in ASD
Research: People with ASD, their
families, their educators, their
caregivers, and advocacy
organizations have vital roles to
play in shaping, participating in,
and disseminating research. Their
insights and perspectives are
needed in order for interventions
and services to be developed that
will have maximal impact and have
the strongest evidence and means
for real‐world uptake and
utilization. Strategies are needed
to gain and use the first‐hand
experience of people with ASD,
their families, and caregivers.
PublicPrivate Partnerships: A
strength of current ASD research is
the degree of private involvement
and investment in research
funding from advocacy groups and
committed stakeholders. In
addition, the amount of research
dollars awarded by the U.S.
government for ASD research has
grown rapidly over the past ten
years. There is currently a great
willingness on the part of
government agencies and private
organizations to collaborate on the
6|IACC Strategic Plan for ASD Research
Question 1: When Should I Be Concerned? 2010
1. WHEN SHOULD I BE CONCERNED?
!
What are the early signs of ASD?
!
Are there typical characteristics
that are part of an ASD
diagnosis?
!
How do variations in symptoms
and severity create challenges
in early diagnosis of ASD?
What do we know?
A child’s caregivers are often first to
identify the signs of ASD. In the classic
case, there may be delays or plateaus in a
child’s attainment of developmental
milestones, such as the use of gestures,
responding to name, or the onset of
speech and pretend play. In other cases,
the first signs of ASD occur in young
children who appear to regress after they
seem to have been developing normally.
Current diagnostic criteria and
classifications of ASD represent progress
in identifying a core set of developmental
symptoms that, in the past, might have
been attributed to other disorders
because of more narrowly defined ASD
evaluation criteria.
The diagnosis of ASD can be reliably made
by age three, because the core symptoms
emerge by that time. However, most
children eventually diagnosed with ASD
exhibit signs of abnormal development
well before the age of two. Recent studies
of children at high risk because of the
presence of a sibling with ASD suggest
that many cases of autism can be detected
by 12 months of age using simple
behavioral tests, such as response to
calling the child’s name or ease of
engaging the child in jointly looking at an
object (Landa, Holman, & Garrett‐Mayer,
2007). Nevertheless, the average age of
diagnosis is 5 years (Wiggins, Baio, &
Rice, 2006). A number of screening tools
have been developed for detecting autism
for children of varied ages and different
levels of clinical variability. There are
tools available for parents and caregivers,
including a video glossary of early “red
flags” of ASD in young children developed
to help families and professionals learn
how to identify subtle differences in
development that may indicate areas of
concern (Wetherby et al., 2007). In terms
of diagnosis, there is emerging evidence
that tools can be developed with
sufficiently high sensitivity and specificity
to support epidemiologic and risk factor
studies.
Nationwide, there has been an effort to
improve early identification of children
with ASD to improve their functioning
and outcomes. A recently published
randomized, controlled trial
demonstrated how a comprehensive
developmental behavioral intervention
for toddlers with ASD led to
improvements in cognitive and adaptive
behavior, thereby emphasizing the
importance of early identification of and
intervention for young children with ASD
(Dawson et. al., 2010). Various public
campaigns, including the CDC’s “Learn the
Signs. Act Early,” have been initiated in
recent years to raise awareness about the
importance of early identification of
developmental delays, including those
associated with ASD. The American
Academy of Pediatrics recommends
screening children for ASD at 18 and 24
months with a standardized screening
tool.
IACC Strategic Plan for ASD Research|7
Question 1: When Should I Be Concerned? 2010
What do we need?
Most cases of autism and related
disorders are not diagnosed until after a
child’s third birthday and sometimes not
until adulthood, yet early intervention can
have a critical influence on the future
course of ASD. Moreover, many children
from culturally, linguistically, and other
diverse groups may have limited access to
assessment services leading to delays in
diagnosis (Mandell et al., 2009). Several
issues have limited the use of early
interventions. It remains difficult to
diagnose ASD in very young children
because there is considerable healthy
variation in the age at which infants and
toddlers reach typical developmental
milestones (e.g., speech) and delays do
not always indicate the presence of a
disorder. The diagnosis of an ASD in a
person of any age is currently based on
behavioral and cognitive signs, reflecting
abnormal brain development, but not on
detection of brain or other biological
differences that may be present before
the emergence of the behavioral or
cognitive signs. The discovery of reliable
biomarkers could potentially identify
people with ASD, or infants who will
subsequently develop or are already
developing subtle signs of ASD.
Children with ASD develop along different
trajectories, some show abnormal
behavior soon after birth, others develop
normally for the first year or longer and
then regress while others appear to later
improve significantly. Greater clarity is
needed in identifying these different
trajectories and greater consistency is
needed in applying their definitions.
Healthcare and other early care and
education providers may not have
received training in recognizing the early
warning signs of ASD. Pediatricians may
not have received training on using
existing screening tools at well check‐ups
as recommended by the American
Academy of Pediatrics and some
caregivers may be unaware of the early
warning signs of ASD or where to access
services, leading to delays in diagnosis.
Although families are eager for guidance,
more research is needed to better answer
the question of when developmental
variation should become cause for
concern. We need studies that test both
new and current diagnostic and screening
methods and that integrate both
developmental and biologic approaches
in community‐based settings. In
particular, studies need to be designed to
validate methods in underrepresented
minorities and disadvantaged
populations. Such studies could increase
our understanding of barriers to
diagnosis and access to services. Taken
together, earlier identification coupled
with increased access to interventions
and services could reduce disparities in
health care and service provision, and
ultimately improve outcomes for people
with ASD.
Scientific studies of ASD require the
reliable diagnosis of participants but this
can be a time consuming and labor
intensive process. Therefore, streamlined
diagnostic approaches that facilitate the
enrollment of research participants are
needed. Researchers also need ASD
measures that are easy to administer and
are sensitive to changes in clinical status.
With regard to heterogeneity, identifying
characteristics that are specific to certain
ASD subpopulations could potentially
identify neurobiological and genetic
markers and improve our understanding
of more global causal and intervention
mechanisms.
8|IACC Strategic Plan for ASD Research
Question 1: When Should I Be Concerned? 2010
ASPIRATIONAL GOAL: CHILDREN AT
RISK FOR ASD WILL BE IDENTIFIED
THROUGH RELIABLE METHODS
BEFORE ASD BEHAVIORAL
CHARACTERISTICS FULLY MANIFEST.
!
Detailed criteria for specific ASD
sub‐types in order to better
describe the variations in
characteristics and severity and
study how these variations relate
to underlying pathology,
intervention strategies, and
outcomes.
!
ASD subpopulations and
associated biobehavioral markers
that provide early indication of
ASD risk and opportunities for
appropriate early intervention.
!
Protocols for genetic testing in
routine clinical practice in order to
identify people at risk for ASD.
Identification of people with
genetic variations associated with
ASD will facilitate intensive studies
of ASD subpopulations with shared
genetic risk factors to characterize
common phenotypic and biological
features.
!
Inclusion of ethical considerations
into the diagnosis and screening
processes, including consideration
of the implications of genetic
testing.
!
Addressing barriers to the use of
screening and diagnostic tools in
minority populations and in
community settings, including
training programs for
professionals.
Research Opportunities
!
!
!
Valid and reliable ASD screening
instruments and approaches,
including general developmental
screening instruments for use in
community settings to identify a
wide range of people, including
younger children, adolescents,
adults, people with co‐occurring
medical conditions, and people
with subtle characteristics, who
require diagnostic evaluation.
Sensitive and efficient clinical
diagnostic tools for diagnosing
ASD in widely diverse populations,
including underrepresented racial
and ethnic groups, females,
younger, older age groups, people
with co‐occurring medical
conditions.
ASD measures that are easy to
administer and sensitive to
incremental changes in both core
and associated ASD characteristics.
Such measures can be used to help
track the clinical course of people
with ASD, monitor responses to
interventions, and provide
information about the broader
autism phenotype.
IACC Strategic Plan for ASD Research|9
Question 1: When Should I Be Concerned? 2010
ShortTerm Objectives
LongTerm Objectives
A. Develop, with existing tools, at
least one efficient diagnostic
instrument (e.g., briefer, less time
intensive) that is valid in diverse
populations for use in large‐scale
studies by 2011. IACC
Recommended Budget: $5,300,000
over 2 years.
A. Identify behavioral and biological
markers that separately, or in
combination, accurately identify,
before age 2, one or more subtypes
of children at risk for developing
ASD by 2014. IACC Recommended
Budget: $33,300,000 over 5 years.
B. Develop at least five measures of
behavioral and/or biological
heterogeneity in children or adults
with ASD, beyond variation in
intellectual disability, that clearly
relate to etiology and risk,
treatment response and/or
outcome by 2015. IACC
Recommended Budget:
$71,100,000 over 5 years.
B. Validate and improve the
sensitivity and specificity of new
or existing screening and
diagnostic tools, including
comparison of general
developmental screening versus
autism‐specific screening tools, in
both high risk and population‐
based samples through studies of
the following community
populations that are diverse in
terms of age, socio‐economic
status, race, ethnicity,
characteristics of ASD, and general
level of functioning by 2012. IACC
Recommended Budget: $5,400,000
over 3 years.
C. Identify and develop measures to
assess at least three “continuous
dimensions” (i.e., social
reciprocity, communication
disorders, and
repetitive/restrictive behaviors) of
ASD symptoms and severity that
can be used by practitioners
and/or families to assess response
to intervention for people with
ASD across the lifespan by 2016.
IACC Recommended Budget:
$18,500,000 over 5 years.
New Objective:
C. Conduct at least three studies to
identify reasons for the health
disparities in accessing early
screening and diagnosis services
by 2012. IACC Recommended
Budget: $2,000,000 over 2 years.
New Objective:
D. Conduct at least two studies to
understand the impact of early
diagnosis on choice of intervention
and outcomes by 2015. IACC
Recommended Budget: $6,000,000
over 5 years.
**Note: Objectives in boxes labeled “New Objective”
are either entirely new additions to the 2010
Strategic Plan or significantly modified objectives
from the 2009 Strategic Plan. Objectives from the
2009 Strategic Plan that did not change or that have
been slightly modified for clarification purposes are
unmarked.
10 | I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h
Question 2: How Can I Understand What Is Happening? 2010
2. HOW CAN I UNDERSTAND WHAT IS
HAPPENING?
!
What is happening early in
development?
!
Are there known biological
differences that help explain
ASD symptoms?
!
Can subgroups of people with
ASD help us understand the
etiology of ASD symptoms?
What do we know?
Researchers, clinicians, and families have
long posed questions about the possible
biological bases of ASD. Clinicians classify
ASD as a developmental brain disorder
based on the behavioral features required
for diagnosis. Little evidence exists,
however, for a specific neurological
abnormality beyond reports of an
exuberant and transient pattern of brain
or head growth (Akshoomoff, Pierce, &
Courchesne, 2002; Dawson et al., 2007;
Hazlett et al., 2005). While much of the
current science suggests that the
behavioral features of ASD result from
atypical brain structure, wiring or
connections, there is no proven neural
variance associated with ASD.
Nevertheless, there are some promising
leads, and projects are underway that
have the potential to provide biological
signatures of some forms of ASD.
The development of sophisticated
imaging methods has enabled researchers
to accurately visualize many aspects of
brain structure and functioning. For
example, many children and adults with
ASD perceive and analyze the visual
information conveyed by facial
expression differently than do other
people (Spezio et al., 2007). Other
researchers have employed magnetic
resonance imaging (MRI) methods to
investigate differences in brain anatomy
between people with and without ASD,
and have found differences in the density
of white and gray matter, in some cases
linked to specific symptoms of ASD (Craig
et al., 2007).
Subsets of people with ASD have been
reported to have experienced regression
(i.e., the loss of previously acquired
language, social, and developmental
skills). The phenomenon is poorly
understood and may co‐occur with
medical conditions common to people
with ASD such as epilepsy. Recent studies
have sought to understand the
relationship between regressive
symptoms, co‐occurring disorders such as
epilepsy, and the etiology of ASD.
Regression is not unique to people with
ASD and the loss of language skills (acute
language regression) can occur in people
without the disorder. In one study,
researchers found that children with
acute language regression (who did not
have ASD) were more likely to have
associated seizures or epilepsy than were
children with regressive autism (which
includes language regression, as well as
the loss of other social and developmental
skills). This suggests that there are
different subtypes of language regression
and may help to understand the
phenomenon and its relationship to ASD
(McVicar, et al., 2005).
Currently, the frequency of language
regression is unknown in either children
with ASD or the general population.
Previous studies of regression have been
hampered by delayed referral for
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evaluation after the onset of regressive
symptoms (McVicar, et al., 2005).
A few hypotheses regarding how
disruptions of the immune system might
contribute to ASD and other
neurodevelopmental disorders have
emerged in recent years. Some recent
findings suggest that the immune system
differences of parents and their children
may affect early brain development and
the onset and fluctuation of symptoms in
some children with ASD (Pardo, Vargas, &
Zimmerman, 2005). For example, some
research indicates that maternal
autoantibodies directed at fetal brain
tissue could interfere with normal brain
development (Braunschweig et al., 2008).
While such medical symptoms may not be
entirely specific to ASD, treating may have
significant impact on quality of life,
symptom severity, and level of
functioning.
Better understanding of the biology of
genes linked to ASD and their functions
can also provide insight. Recent studies
have shown that the MeCP2 gene
(mutations in which can cause Rett
Syndrome) is involved in forming
connections at the synapse. Genes
regulated by the Fragile X Syndrome gene,
FMR1, also directly affect synapse
function by controlling signaling of the
neurotransmitter glutamate. In addition, a
2008 study found that the two genes that
cause tuberous sclerosis complex (TSC)
impair the formation of axons. Recently,
several groups reported remarkable
success with targeted therapies in animal
models of these disorders showing the
ability to reverse the underlying
neuroanatomical and even behavioral
deficits in the adult (Dolen et al., 2007;
Ehninger et al., 2008; Guy et al., 2007).
Understanding how MeCP2, TS1, FMR1,
TSC1 and TS2TSC2 regulate the growth
and function of neurons may help
scientists understand related disorders
like autism.
What do we need?
Exploring the biological basis of ASD
requires access to biospecimens of people
with and without ASD. Some progress has
been made to establish the necessary
infrastructure for the collection and
preservation of post‐mortem tissue from
people with ASD. Nevertheless, the
tissues currently available are insufficient
for the needs of researchers. Educational
campaigns, through contact with
healthcare providers and the internet,
may be useful to increase public
awareness. New technology is expanding
biological research beyond post‐mortem
tissue. For example, it is now possible to
create pluripotent stem cells from skin
fibroblasts of individual patients to create
neuronal cell lines for study.
One of the greatest barriers to progress in
determining the biological bases of ASD
has been the heterogeneity of the
spectrum. A clear need exists to advance
understanding of the many phenotypes of
ASD, including studies that link genotype
to phenotype, investigations of natural
and treated history, analyses of genetic
interaction with environmental
exposures, and studies of co‐occurring
behavioral and medical conditions.
Different autism phenotypes may have
different etiologies. There is a need to
combine genotyping and functional
analysis to better understand the
contribution of specific genotypes with
functional or structural subtypes. To
determine the earliest discernable onset
of ASD, experts have expressed the need
for an intensive, multidisciplinary study
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starting at early ages that examines
biomedical, neurodevelopmental, and
behavioral trajectories of children with
ASD. A parallel multidisciplinary analysis
of typically developing children and
children with non‐ASD developmental
disorders would be especially
enlightening, as limited normative
information is currently available. An
evaluation of differences in the interplay
of biology and environmental exposures
for children with and without ASD is also
needed. Understanding early trajectories
may lead to targeted interventions aimed
at mitigating behavioral and medical
challenges and improving outcomes
through adulthood.
Another understudied arena of ASD
research is gender differences. Many
studies of autism preferentially enroll
males, which, due to a 4:1 increased
prevalence, are easier to recruit. Without
additional information about the
biological features of ASD in females, it
remains unclear whether the course of
ASD is similar and whether currently
used interventions are appropriate for
females. It is critical to determine how sex
is related to etiology, protective factors,
diagnosis, and trajectory. In addition,
many studies of autism preferentially
enroll higher functioning individuals who
do not have cognitive impairment,
because of their ability to cooperate and
participate in study related tasks.
However, these individuals represent
only a subset of all individuals with
autism and lessons learned from them
may or may not be generalizable to all
individuals with ASD. Priority must be
made to develop studies looking at the
underlying etiology of non verbal
individuals and to understand the impact
of and etiology of co‐occurring language
and cognitive impairment.
ASPIRATIONAL GOAL: DISCOVER HOW
ASD AFFECTS DEVELOPMENT WHICH
WILL LEAD TO TARGETED AND
PERSONALIZED INTERVENTIONS.
Research Opportunities
!
Multi‐disciplinary, longitudinal,
biobehavioral studies of children,
youths, and adults beginning
during infancy that characterize
neurodevelopmental and medical
developmental trajectories across
the multiple axes of ASD
phenotype and identify ASD risk
factors, subgroups, co‐occurring
symptoms, and potential biological
targets for intervention. Such
studies could include:
o High‐risk siblings of
children, youths, and adults
with ASD, children without
a family history of ASD, and
typically developing
children.
o Multi‐disciplinary
assessments of brain
imaging, metabolic and
immune markers,
microbiomics,
electrophysiology, and
behavior.
!
Research on females with ASD to
better characterize clinical,
biological and protective features.
!
Human and animal studies that
examine immune, infectious and
environmental factors in the
occurrence of ASD.
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Question 2: How Can I Understand What Is Happening? 2010
!
Research on the unique strengths
and abilities of people with ASD
with evaluation of functional and
biological mechanisms behind
social, linguistic, and cognitive
profiles.
!
Research on individuals with ASD
who are nonverbal and /or
cognitively impaired
!
Research targeting the underlying
biology of co‐occurring syndromes
and co‐occurring conditions.
!
Prospective research on children
with language regression, both
with and without autistic
regression, including potential
underlying genetic and other risk
factors including seizures and
epilepsy.
ShortTerm Objectives
A. Support at least four research
projects to identify mechanisms of
metabolic and/or immune system
interactions with the central
nervous system that may underlie
the development of ASD during
prenatal‐postnatal life by 2010.
IACC Recommended Budget:
$9,800,000 over 4 years.
B. Launch three studies that
specifically focus on the
neurodevelopment of females with
ASD, spanning basic to clinical
research on sex differences by
2011. IACC Recommended Budget:
$8,900,000 over 5 years.
C. Identify ways to increase
awareness among the autism
spectrum community of the
potential value of brain and tissue
donation to further basic research
by 2011. IACC Recommended
Budget: $1,400,000 over 2 years.
New Objective:
D. Launch three studies that target
improved understanding of the
underlying biological pathways of
genetic conditions related to
autism (e.g. Fragile X, Rett
syndrome, tuberous sclerosis
complex) and how these
conditions inform risk assessment
and individualized intervention by
2012. IACC Recommended Budget:
$9,000,000 over 5 years.
New Objective:
E. Launch three studies that target
the underlying biological
mechanisms of co‐occurring
conditions with autism including
seizures/epilepsy, sleep disorders
and familial autoimmune
disorders by 2012. IACC
Recommended Budget: $9,000,000
over 5 years.
New Objective:
F. Launch two studies that focus on
prospective characterization of
children with reported regression,
to investigate potential risk factors
by 2012. IACC Recommended
Budget: $4,500,000 over 5 years.
**Note: Objectives in boxes labeled “New Objective” are either entirely new additions to the 2010 Strategic
Plan or significantly modified objectives from the 2009 Strategic Plan. Objectives from the 2009 Strategic
Plan that did not change or that have been slightly modified for clarification purposes are unmarked.
14 | I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h
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New Objective:
LongTerm Objectives
G. Support five studies that associate
specific genotypes with functional
or structural phenotypes,
including behavioral and medical
phenotypes (e.g., nonverbal
individuals with ASD and those
with cognitive impairments) by
2015. IACC Recommended Budget:
$22,600,000 over 5 years.
A. Complete a large‐scale, multi‐
disciplinary, collaborative project
that longitudinally and
comprehensively examines how
the biological, clinical, and
developmental profiles of
individuals, with a special
emphasis on females, youths, and
adults with ASD, change over time
as compared to typically
developing people by 2020. IACC
Recommended Budget:
$126,200,000 over 12 years.
New Objective:
B. Launch at least three studies
which evaluate the applicability of
ASD phenotype and/or biological
signature findings for performing
diagnosis, risk assessment, or
clinical intervention by 2015. IACC
Recommended Budget: $7,200,000
over 5 years.
**Note: Objectives in boxes labeled “New Objective” are either entirely new additions to the 2010 Strategic
Plan or significantly modified objectives from the 2009 Strategic Plan. Objectives from the 2009 Strategic
Plan that did not change or that have been slightly modified for clarification purposes are unmarked.
I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h | 15
Question 3: What Caused This To Happen And Can This Be Prevented? 2010
3. WHAT CAUSED THIS TO HAPPEN
AND CAN THIS BE PREVENTED?
!
Is there something in my genetic
or family history that poses a
risk for ASD?
!
What environmental exposures
pose risks for the development
of ASD?
!
How might genetics and the
environment interact to
influence the occurrence of
ASD?
What do we know?
As with many complex disorders,
causation is generally thought to involve
some forms of genetic risk interacting
with some forms of non‐genetic
environmental exposure. The balance of
genetic risk and environmental exposure
likely varies across the spectrum of ASD.
The greatly increased concordance of
strictly defined autism in monozygotic
(identical) twins (70 ‐ 90%) compared to
dizygotic (fraternal) twins (0‐10%)
argues for the importance of genetic
factors (Bailey et al., 1995; Steffenburg et
al., 1989). Moreover, there are
subpopulations of those diagnosed with
ASD that have a known genetic mutation,
often associated with a genetic disorder,
such as Fragile X syndrome, Rett
syndrome, or tuberous sclerosis,
understanding of which has led to
identification of possible pharmaceutical
interventions. In many cases the same
genetic variation does not result in an
ASD phenotype, suggesting possible
genetic or environmental modifiers that
could be important intervention targets.
Using new technology that reveals gaps
and extra copies in DNA sequences,
researchers have found that some people
with ASD have deletions and duplications
of genetic material not found in their
parents’ DNA (Sebat et al., 2007). Recent
genetics research has identified common
genetic variations (e.g., Wang et al., 2009;
Weiss et al., 2009), changes in
chromosomal structure in specific
genomic regions, (Marshall et al., 2008;
Kumar et al., 2008; Weiss et al., 2008) and
rare mutations in genes all associated
with synaptic connectivity (Alarçon et al.,
2008; Bakkaloglu et al., 2008; Durand et
al., 2007; Jamain et al., 2003; Laumonnier
et al., 2004.; Strauss et al., 2006). Some of
these findings have contributed to new
hypotheses about the inheritance of ASD.
In families with just one affected member,
spontaneous deletions and duplications
may be causal factors of ASD. However,
what causes these spontaneous deletions
and duplications is not clear and could be
due to environmental exposures.
Taken together, rare genetic mutations,
chromosomal abnormalities and sub‐
microscopic deletions and duplications of
genetic material are involved in at least
10% of ASD cases, yet individually each
abnormality is found in no more than
about 1‐2% of cases (Abrahams &
Geschwind, 2008). Since common genetic
variations confer only modest increase in
risk, this suggests that the genetic factors
in ASD may involve many different genes
and interactions between genes and
environment. Possible models include:
many additional rare genetic mutations to
be discovered; multiple common genetic
variations each conferring a small
increased risk; and, many forms of ASD
with different genetic contributions, both
common and rare in the population.
There is growing recognition that the
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same genetic contributions can lead to a
wide variety of different phenotypes
across individuals. As one good example,
deletions and duplications in
chromosomal region 16p11 have been
associated with a broad range of
phenotypes, including disorders outside
the autism spectrum. The factors
responsible for this variability in disease
phenotypes remain to be defined.
Researchers are working to better
understand the interaction of genetic
vulnerability with developmental
experiences, such as a specific
environmental exposure. While gene‐
environment interactions have been
hypothesized to play a role in many
medical disorders, these interactions have
been difficult to prove or disprove beyond
statistical tests showing that some genetic
subgroups have a greater response to
some environmental factor. Epigenetics is
one mechanism by which it is thought
that environmental factors may be
influencing gene expression, and now
molecular tools are allowing researchers
to gain insight into epigenetic phenomena
that may be contributing to a variety of
disorders, including ASD (Baccarelli and
Bollati, 2009; Nagarajan et al., 2008).
While genetics maps the sequence of
DNA, epigenetics maps the modifications
of the structure of DNA due to proteins or
other factors that bind to the DNA helix.
DNA is essentially linear text that gets
“read” into RNA that in turn codes for
proteins. Epigenetic modifications do not
change the text but they highlight or
redact large sections of text, changing
how it is read. Epigenetic modifications
consist of biochemical “tags” that attach
to the DNA in different places, leading to
the “silencing” or “activation” of
genes. The pattern of epigenetic silencing
or activation of genes can differ between
genders, between species or between
generations, and can change during
specific time windows in development or
in response to environmental cues. It is
thought that the addition or removal of
epigenetic tags from DNA is one
mechanism by which developmental
experience (i.e. exposure to physical or
emotional stimuli) can cause long‐term
biological and behavioral effects. In the
past year, the first maps of the human
epigenome have provided the first
comprehensive look at where and how
nature and nurture may interact (Lister et
al., 2009).
Progress in identifying environmental
factors which increase autism risk has
been made recently (Eskenazi et al., 2007;
Palmer et al., 2006; Palmer, Blanchard, &
Wood, 2009; Rauh et al., 2006; Roberts et
al., 2007; Windham et al., 2006), although
this area of research has received less
scientific attention and far fewer research
dollars than genetic risk factors.
Environmental factors may be pertinent
not only to brain development but also to
chronic systemic features of at least some
subgroups of ASD. An Institute of
Medicine (IOM) workshop held in 2007
summarized what is known and what is
needed in this field (Forum on
Neuroscience and Nervous System
Disorders, Institute of Medicine, 2008).
Numerous epidemiological studies have
found no relationship between ASD and
vaccines containing the mercury based
preservative, thimerosal (Immunization
Safety Review Committee, 2004). These
data, as well as subsequent research,
indicate that the link between autism and
vaccines is unsupported by the
epidemiological research literature.
However, the IOM report acknowledged
that the existing population‐based studies
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Question 3: What Caused This To Happen And Can This Be Prevented? 2010
were limited in their ability to detect
small susceptible subpopulations that
could be more genetically vulnerable to
environmental exposures.
and the Environmental Protection Agency
(EPA).
Of note, the Committee receives many
public comments that reflect concerns
about vaccines as a potential
environmental factor in autism. Some
members of the public are convinced that
the current data are sufficient to
demonstrate that vaccines do not play a
causal role in autism and argue against
using limited autism research funds to do
additional vaccine studies when many
other scientific avenues remain to be
explored. At the same time, those who
believe that prior studies of the possible
role of vaccines in ASD have been
insufficient argue that investigation of a
possible vaccine/ASD link should be a
high priority for research (e.g., a large‐
scale study comparing vaccinated and
unvaccinated groups). A third view urges
shifting focus away from vaccines and
onto much‐needed attention toward the
development of effective treatments,
services and supports for those with ASD.
Although most scientists believe that risk
factors for ASD are both genetic and
environmental, there is considerable
debate about whether potential
environmental causes, genetic precursors,
or interactions between genes and
environmental factors should be the
highest priority for research aimed at
identifying the causes of ASD. To date, few
studies have ruled in or ruled out specific
environmental factors. There are reports
of associations of ASD with exposure to
medications, maternal antibodies,
toxicants, and infections prenatally or
postnatally, however these observations
need to be the subject of additional study.
It is still not known whether any specific
factor is necessary or sufficient to cause
ASD. Similar to other disease areas,
advancing research on the potential role
of environmental factors requires
resources and the attraction of scientific
expertise. Bringing this to bear on autism
will help define the environmental factors
to study, as well as the best approach for
staging studies to examine environmental
factors, interaction between factors, and
between individual susceptibility and
various environmental factors.
In addition, a number of other
environmental factors are being explored
through research because they are known
or suspected to influence early
development of the brain and nervous
system. Recent studies suggest factors
such as parental age, exposure to
infections, toxins, and other biological
agents may confer environmental risk.
These findings require further
investigation and testing, some of which
is ongoing through the CADDRE Program,
the Norwegian cohort study, the CHARGE
study, the EARLI study, and the Children’s
Centers for Environmental Health and
Disease Prevention supported by NIEHS
What do we need?
For example, some researchers believe
that it is important to study a large
number of exposures, or classes of
exposure, that are known to affect brain
development. Others support more tightly
focused studies of one exposure or a
limited number of exposures, with
greatest biologic plausibility for
interacting with known or suspected
biologic or genetic ASD risk factors. In
addition, it is also important to design
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studies that assess environmental
exposure during the most relevant
exposure windows: pregnancy and early
development. In doing this research, it
will be important for the field to develop
sound standards for identifying and
claiming that environmental factors
contribute to ASD, as it is for genetics.
Research studies on risk factors can be
pursued through several means. Smaller,
focused studies are needed for hypothesis
testing and to provide insight for
replication studies. Similar to other health
outcomes research for relatively rare
conditions, case‐control studies can be an
effective first line of inquiry. The CHARGE
and CADDRE (SEED) studies are good
examples of this approach where
environmental exposures and biological
pathways, along with genetics, are being
examined. Other existing cohorts could
also be identified and used for
epigenomic as well as traditional genomic
and environmental studies.
To address public concerns regarding a
possible vaccine/ASD link, it will be
important for the IACC to continue to
coordinate with the National Vaccine
Advisory Committee (NVAC), a Federal
advisory committee chartered to advise
and make recommendations regarding
the National Vaccine Program.
determining the impact of environmental
agents on epigenetic programming.
Finally, studies are needed to understand
how changes in epigenetic tags in
response to environmental stimuli could
lead to specific phenotypic characteristics
associated with autism.
Another approach for studying risk
factors for ASD requires large sample
sizes to disentangle the many possible
genetic and environmental factors that
contribute to and help explain ASD and
the frequently co‐occurring conditions.
For other complex disorders, large DNA
collections, i.e. >20,000 samples, have
been necessary to detect the full genetic
risk architecture. There are no genetic
repositories of this size for ASD. Similarly,
large birth cohort studies, in which
biological samples have been collected
throughout pregnancy and early
postnatal life may be essential for
detecting the interplay of environmental
exposures and genetic factors that lead to
ASD. As a complement to these large‐scale
studies, research on critical sub‐
populations that may be at higher risk
could provide leverage in identifying
genetic and environmental risk factors.
Epigenomics provides a ready mechanism
for understanding how genes and
environment may act jointly to affect
autism risk. Studies are needed to
investigate whether candidate
environmental exposures alter epigenetic
mechanisms that modify the expression
of suspected autism susceptibility genes
or genomic regions. Such studies should
incorporate examination of time or stage
of development as an important factor
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Question 3: What Caused This To Happen And Can This Be Prevented? 2010
ASPIRATIONAL GOAL: CAUSES OF ASD
WILL BE DISCOVERED THAT INFORM
PROGNOSIS AND TREATMENTS AND
LEAD TO PREVENTION/PREEMPTION
OF THE CHALLENGES AND
DISABILITIES OF ASD.
Research Opportunities
!
Genetic and epigenetic variations
in ASD and the symptom profiles
associated with these variations.
!
Environmental influences in ASD
and the symptom profiles
associated with these influences.
!
Family studies of the broader
autism phenotype that can inform
and define the heritability of ASD.
!
Studies in simplex families that
inform and define de novo genetic
differences and focus on what role
the environment might play in
inducing these differences.
!
Standardized methods for
collecting and storing biospecimen
resources from well‐characterized
people with ASD as well as a
comparison group for use in
biologic, environmental and
genetic studies of ASD.
!
Case‐control studies of unique
subpopulations of people with ASD
that identify novel risk factors.
!
Monitor the scientific literature
regarding possible associations of
vaccines and other environmental
factors (e.g., ultrasound, pesticides,
pollutants) with ASD to identify
emerging opportunities for
research and indicated studies.
!
Better understanding
environmental and biological risk
factors during pre‐ and early post‐
natal development in “at risk”
samples.
!
Cross‐disciplinary collaborative
efforts to identify and analyze
biological mechanisms that
underlie the interplay of genetic
and environmental factors
relevant to the risk and
development of ASD, including co‐
occurring conditions.
!
Convene ASD researchers on a
regular basis to develop strategies
and approaches for improving data
standards and sharing,
understanding gene –
environment interactions,
improving the speed of replication
of findings, and enhancing the
translation of research on
potential causative factors to
prevention and treatment studies.
!
Measures of key exposures for use
in population and clinic based
studies and standards for sample
collection, storage, and analysis of
biological materials.
!
Studies of behavioral,
developmental, and medical
variations across those with ASD
who share common genetic
factors.
!
Studies of clinically meaningful
subgroups to examine common
genetic and environmental factors,
as well as unique epigenomic
signatures.
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ShortTerm Objectives
New Objective:
A. Coordinate and implement the
inclusion of approximately 20,000
subjects for genome‐wide
association studies, as well as a
sample of 1,200 for sequencing
studies to examine more than 50
candidate genes by 2011. Studies
should investigate factors
contributing to phenotypic
variation across individuals that
share an identified genetic variant
and stratify subjects according to
behavioral, cognitive, and clinical
features. IACC Recommended
Budget: $43,700,000 over 4 years.
B. Within the highest priority
categories of exposures for ASD,
identify and standardize at least
three measures for identifying
markers of environmental
exposure in biospecimens by 2011.
IACC Recommended Budget:
$3,500,000 over 3 years.
C. Initiate efforts to expand existing
large case‐control and other
studies to enhance capabilities for
targeted gene – environment
research by 2011. IACC
Recommended Budget: $27,800,000
over 5 years.
D. Enhance existing case‐control
studies to enroll racially and
ethnically diverse populations
affected by ASD by 2011. IACC
Recommended Budget: $3,300,000
over 5 years.
E. Support at least two studies to
determine if there are
subpopulations that are more
susceptible to environmental
exposures (e.g., immune
challenges related to infections,
vaccinations, or underlying
autoimmune problems) by 2012.
IACC Recommended Budget:
$8,000,000 over 2 years.
New Objective:
F. Initiate studies on at least 10
environmental factors identified in
the recommendations from the
2007 IOM report “Autism and the
Environment: Challenges and
Opportunities for Research” as
potential causes of ASD by 2012.
Estimated cost $56,000,000 over 2
years.
LongTerm Objectives
A. Conduct a multi‐site study of the
subsequent pregnancies of 1,000
women with a child with ASD to
assess the impact of
environmental factors in a period
most relevant to the progression of
ASD by 2014. IACC Recommended
Budget: $11,100,000 over 5 years.
B. Identify genetic risk factors in at
least 50% of people with ASD by
2014. IACC Recommended Budget:
$33,900,000 over 6 years.
**Note: Objectives in boxes labeled “New Objective” are either entirely new additions to the 2010 Strategic
Plan or significantly modified objectives from the 2009 Strategic Plan. Objectives from the 2009 Strategic
Plan that did not change or that have been slightly modified for clarification purposes are unmarked.
I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h | 21
Question 3: What Caused This To Happen And Can This Be Prevented? 2010
C. Determine the effect of at least five
environmental factors on the risk
for subtypes of ASD in the pre‐ and
early postnatal period of
development by 2015. IACC
Recommended Budget: $25,100,000
over 7 years.
D. Support ancillary studies within
one or more large‐scale,
population‐based surveillance and
epidemiological studies, including
U.S. populations, to collect data on
environmental factors during
preconception, and during
prenatal and early postnatal
development, as well as genetic
data, that could be pooled (as
needed), to analyze targets for
potential gene/environment
interactions by 2015. IACC
Recommended Budget: $44,400,000
over 5 years.
**Note: Objectives in boxes labeled “New Objective” are either entirely new additions to the 2010 Strategic
Plan or significantly modified objectives from the 2009 Strategic Plan. Objectives from the 2009 Strategic
Plan that did not change or that have been slightly modified for clarification purposes are unmarked.
22 | I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h
Question 4: Which Treatments And Interventions Will Help? 2010
4. WHICH TREATMENTS AND
INTERVENTIONS WILL HELP?
!
When should treatments or
interventions be started?
!
What are the medical issues I
need to know about?
!
How do I know that treatments
are both safe and effective?
What do we know?
Although autism is defined and diagnosed
by deficits in core behaviors,
accumulating evidence suggests that the
breadth of this disorder extends well
beyond the behavioral diagnosis. There is
increasing recognition that the multiple
systemic issues in children with ASD may
influence vulnerability, onset, and
severity of symptoms and behaviors. The
systemic component of autism supports
the possibility that both the core
behaviors and medical issues have a
convergent mechanistic basis that if
identified, could provide new insights into
treatment targets, candidate genes, and
strategies for prevention.
A wide range of treatment and
intervention options are available for
children and adults with ASD that can
target core symptoms, ameliorate
associated symptoms, and prevent
further disability. For example,
interventions such as speech therapy
facilitate language development,
pragmatic communication and social
interaction. Occupational therapy can
improve functioning in everyday
activities (e.g., eating, bathing, and
learning) as well as sensory integration.
Both types of therapy can promote the
development of life skills, which help
people with ASD to gain more
independence. People with ASD can
benefit from adaptive technologies, such
as the use of keyboards and computers
that promote expressive communication
skills, and visual representation tools
such as the Picture Exchange
Communication System (PECS) that assist
those with little or no language to
communicate more effectively. For pre‐
school and school age children, public
school systems and private schools can
provide essential interventions including
curricula that are individualized to the
child, testing for cognitive and academic
strengths and weaknesses, and special
education services with lower teacher to
student ratios, to name a few. For all of
these interventions, there is a range of
improvement, with some people making
profound gains and others showing little
response. We do not know how to predict
which people will benefit from any of the
available treatments.
Of the numerous behavioral interventions
currently in use, little scientific evidence
from randomized controlled trials (RCT)
supports their efficacy. Behavioral
therapies, such as Applied Behavior
Analysis (ABA) based therapies, which
use the principles of reinforcement and
repetition, have been used since the
1960s and have been studied most
extensively. Controlled trials have shown
ABA to be effective for improving social
skills and language when provided for at
least 25‐40 hours per week for 2 years
(Lord & McGee, 2001). Efficacy is greatest
when behavioral interventions are used
early, but improved skills have been
reported with adolescents and adults
(McClannahan, MacDuff, & Krantz, 2002;
Weiss & Harris, 2001).
I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h | 23
Question 4: Which Treatments And Interventions Will Help? 2010
Medications to improve some of the
symptoms associated with autism have
been studied. However, thus far, no
medication has been shown in controlled
trials to enhance social behavior or
communication. In 2006, risperidone
became the first Food and Drug
Administration (FDA)‐approved
pharmacologic therapy for certain
symptoms of autism. First introduced in
1993 as medication used to treat
symptoms of schizophrenia, risperidone
has now been shown to be effective as a
treatment of irritability and aggression
seen in some children with ASD. Selective
serotonin reuptake inhibitors have had
mixed results in decreasing certain
repetitive and stereotyped behaviors
(Kolevzon, Mathewson, & Hollander,
2006; King et al., 2009). Other biological
and pharmacological treatments that
have been investigated in small studies
and may warrant fuller attention include
omega‐3 fatty acids, memantine, oxytocin,
and pioglitazone (Ammiger et al., 2007;
Chez et al., 2007; Hollander et al., 2007;
Boris et al., 2007).
There are other treatments in wide use
that have not been studied in randomized
controlled trials. These include
nutritional supplements and diets (e.g.,
probiotics, mitochondrial cocktails,
CoQ10, carnitine, and gluten‐casein free
diets), and chelation. One such treatment,
the neuropeptide secretin, that had been
reported to improve symptoms of ASD,
was studied in a placebo‐controlled trial
and found to be ineffective (Esch & Carr,
2004). Some parents and therapists
suggest that these treatments are
effective, that recovery is possible, and
that further studies are needed. Others
are concerned that these treatments
involve more than minimal risks and urge
caution before recommending large‐scale
studies.
What do we need?
Safe and effective interventions are
needed across the lifespan, from early
development shortly after the detection
of risk or diagnosis, through childhood,
school age, adolescent, adult, and senior
phases of life. Going forward, research
needs to be balanced between two poles.
On the one hand, we need novel, targeted
interventions based on an understanding
of the molecular mechanisms of ASD.
These interventions, analogous to
ongoing efforts in cancer and
cardiovascular research, will require a
successful commitment to earlier
elements of this Strategic Plan. On the
other hand, we need rigorous studies to
develop and safely test the efficacy of
current interventions, identifying which
elements are most effective in reducing or
ameliorating symptoms for which
persons. Intervention research should
collect information about the mode of
delivery, intensity, duration, and dose as
well as unique characteristics of the
people with ASD (e.g., behavioral,
biological, genetic) in an effort to develop
more personalized interventions,
treatments, services and supports, and
help inform basic research about
additional targets for study. This research
will require large‐scale multidisciplinary
randomized controlled trials.
The identification of biomarkers, for
instance, in plasma, saliva, cerebrospinal
fluid (CSF), or tissue is necessary to
provide insights into targeted treatment
strategies designed to improve or reverse
autistic symptoms as well as insights into
preventive measures. Further, if
biomarkers present in children with ASD
24 | I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h
Question 4: Which Treatments And Interventions Will Help? 2010
are found to be present in infants and
toddlers at high risk of developing autism,
targeted intervention strategies to
normalize these biomarkers could be
tested for potential to arrest or reverse
the symptoms and progression of autism.
Decision makers (people with ASD,
families, clinicians, and payors)
frequently lack critical information about
which treatment is best for an individual
person. While there are many
interventions in wide use, the field lacks
comparative studies of their value or how
these various interventions should be
staged or combined. Comparative
effectiveness research yields information
from head to head comparisons of
interventions or policies that, when
combined with a personalized approach,
can inform decision makers about health
care choices. This approach, already
helpful for cardiovascular and cancer
research, needs to be developed to inform
ASD interventions.
be crucial in leveraging the
pharmaceutical industry to develop
medications that target the core
symptoms of ASD.
While some people with ASD have been
reported to show marked improvement,
little is known about the characteristics of
these people or the types of interventions
they have received that may help to
explain these changes. Studies of these
people may provide an opportunity for
discovering important clues with regard
to risk factors and intervention strategies
for specific ASD subgroups.
Special attention is needed on treatment
of co‐occurring medical issues,
developing pharmacological treatments,
and testing interventions that are in wide
use, (e.g., nutritional supplements) but for
which little rigorous efficacy data exist
(Levy & Hyman, 2003). Medical issues,
such as gastrointestinal symptoms and
sleep disorders, may influence the
effectiveness of interventions designed to
affect the core symptoms of ASD.
Similarly, interventions that focus on
medical issues may also affect or reduce
core symptoms. Animal models and/or
cell lines relevant to autism are needed to
develop new or test existing
pharmacological agents for ASD,
understand the mechanisms of action,
and serve as a first‐step in testing drug
safety. Such model systems research may
I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h | 25
Question 4: Which Treatments And Interventions Will Help? 2010
ASPIRATIONAL GOAL: INTERVENTIONS
WILL BE DEVELOPED THAT ARE
EFFECTIVE FOR REDUCING BOTH CORE
AND ASSOCIATED SYMPTOMS, FOR
BUILDING ADAPTIVE SKILLS, AND FOR
MAXIMIZING QUALITY OF LIFE AND
HEALTH FOR PEOPLE WITH ASD.
Research Opportunities
!
Large scale studies that directly
compare interventions and
combinations of interventions
(e.g., pharmaceutical, educational,
and behavioral interventions) to
identify what works best for which
people and how much it will cost.
o Best practice models that
are being used in
community‐based ASD
intervention programs.
o Clinical trials that assess
the safety and efficacy of
widely used interventions
that have not been
rigorously studied for use
in ASD populations.
o Studies in diverse
populations.
!
!
!
Interventions that improve
functioning and quality of life for
people with ASD across the
lifespan, including older children,
adolescents, and adults with ASD.
Early interventions that aim to
prevent the development of ASD in
very young “at risk” children and
reduce family burden.
Innovative treatments that
specifically target core symptom
clusters unique to ASD.
!
Development of emerging
technologies, such as assisted
communication, that provide
opportunities for people with ASD
to become more engaged in the
community.
!
Animal models and/or cellular
lines that can be used to test
efficacy and/or safety of ASD
interventions and treatments.
!
Strategies that facilitate rapid
translation of promising basic
scientific discoveries and
community practices into clinical
research and trials.
!
Methods of treating co‐existing
medical or psychiatric conditions
and assess how such treatments
affect ASD symptoms and severity.
!
Interventions that may enhance
neural plasticity and adaptive
brain reorganization in children,
adolescents, and adults with ASD
thereby promoting significant
improvement of ASD.
!
Outcome studies of the
effectiveness of behavioral,
developmental, and cognitive
therapies and approaches.
!
Methods for measuring changes in
core symptoms of ASD from
treatment.
!
Dissemination research
(coordinated with subsequent
goals) to ensure that evidence‐
based interventions are
implemented in diverse
communities with fidelity and
efficiency.
26 | I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h
Question 4: Which Treatments And Interventions Will Help? 2010
!
Investigation of the use of
medications to control challenging
behaviors in people with ASD,
particularly adults.
New Objective:
ShortTerm Objectives
A. Support at least three randomized
controlled trials that address co‐
occurring medical conditions
associated with ASD by 2010. IACC
Recommended Budget: $13,400,000
over 3 years.
B. Standardize and validate at least
20 model systems (e.g. cellular
and/or animal) that replicate
features of ASD and will allow
identification of specific molecular
targets or neural circuits amenable
to existing or new interventions by
2012. IACC Recommended Budget:
$75,000,000 over 5 years.
C. Test safety and efficacy of at least
five widely used interventions
(e.g., nutrition, medications,
assisted technologies, sensory
integration, medical procedures)
that have not been rigorously
studied for use in ASD by 2012.
IACC Recommended Budget:
$27,800,000 over 5 years.
D. Complete two multi‐site
randomized controlled trials of
comprehensive early intervention
that address core symptoms,
family functioning and community
involvement by 2013. IACC
Recommended Budget: $16,700,000
over 5 years.
E. Convene a workshop to advance
the understanding of clinical
subtypes and treatment
personalization (i.e. what are the
core symptoms to target for
treatment studies) by 2011. IACC
Recommended Budget: $50,000.
New Objective:
F. Launch five randomized controlled
trials of interventions including
biological signatures and other
measures to predict response, and
monitor quality of life and
functional outcomes, in each of the
following groups:
o Five trials in infants and
toddlers by 2013. IACC
Recommended Budget:
$30,000,000 over 5 years.
o Three randomized
controlled trials of
interventions for school‐
aged children and/or
adolescents by 2013. IACC
Recommended Budget:
$18,000,000 over 5 years.
o Three trials for adults by
2014. IACC Recommended
Budget: $18,000,000 over 5
years.
**Note: Objectives in boxes labeled “New Objective” are either entirely new additions to the 2010
Strategic Plan or significantly modified objectives from the 2009 Strategic Plan. Objectives from the
2009 Strategic Plan that did not change or that have been slightly modified for clarification purposes
are unmarked.
I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h | 27
Question 4: Which Treatments And Interventions Will Help? 2010
LongTerm Objectives
A. Complete at least three
randomized controlled trials on
medications targeting core
symptoms in people with ASD of
all ages by 2014. IACC
Recommended Budget: $22,200,000
over 5 years.
B. Develop interventions for siblings
of people with ASD with the goal of
reducing risk recurrence by at
least 30% by 2014. IACC
Recommended Budget: $6,700,000
over 5 years.
New Objective:
C. Conduct at least one study to
evaluate the safety and
effectiveness of medications
commonly used in the treatment of
co‐occurring conditions or specific
behavioral issues in people with
ASD by 2015. IACC Recommended
Budget: $10,000,000 over 5 years.
**Note: Objectives in boxes labeled “New Objective” are either entirely new additions to the 2010 Strategic
Plan or significantly modified objectives from the 2009 Strategic Plan. Objectives from the 2009 Strategic
Plan that did not change or that have been slightly modified for clarification purposes are unmarked. .
28 | I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h
Question 5: Where Can I Turn For Services? 2010
5. WHERE CAN I TURN FOR SERVICES?
!
What types of services and
supports should I seek and
where can I find them?
!
What is my state or local
government doing to provide
services for ASD?
!
What is the cost of services and
how will it be paid?
What do we know?
To fulfill the mission to “profoundly
improve the health and well being of
every person on the autism spectrum
across the lifespan,” scientific discoveries
must be implemented in communities and
supported by public policy. The gap
between knowledge and action can only
be overcome by an aggressive focus on
engaging families, people with ASD, and
the services community in the research
process, disseminating research findings
into the community, eliminating barriers
to services and helping people with ASD
and their families identify which services
are needed.
The communities in which children are
diagnosed vary tremendously in their
ability to meet the needs of people with
ASD (Shattuck & Grosse, 2007). Local
school districts vary in their ability to
identify and provide appropriate
educational and related programs for
children with ASD (Mandell & Palmer,
2005; Palmer et al., 2005). States vary in
the policies they have developed to
organize, finance and deliver care. The
professional infrastructure or capacity is
often inadequate to provide timely
diagnosis, appropriate care, services and
supports, and assure health and safety.
While remarkable improvements have
been made during the last three decades
in understanding the best ways to
identify, assess, educate and support
people with autism and their families,
these improvements rarely enter
community practice. In fact, some have
suggested that the lag between research
and practice is close to 20 years. When
proven‐efficacious services are
implemented in community settings, they
often do not result in the same positive
outcomes (i.e., they are efficacious in
research settings, but not effective in
community practice). The reasons for this
lag and ways to improve services only
recently have become an area of research
in autism.
Another important issue for service
delivery is that community needs far
outpace the state of research. Most autism
services research has focused on
behavioral interventions for young
children. Behavioral interventions for
youth and adults, as well as community
supports that address quality of life (as
opposed to core symptoms) for people
with autism and their families have
almost no traditional evidence base to
support them. Yet these types of services
are some of the most requested and most
needed. Providers and policy makers
must therefore make decisions in the
absence of evidence. Local resources,
advocacy, and creativity about existing
funding streams all may affect what
services get funded, by whom, and for
whom.
These differences in policies, resources
and organization result in marked
differences in the prevalence of ASD
across geographic areas, the types of
services and support that are received,
availability of appropriate lifespan
I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h | 29
Question 5: Where Can I Turn For Services? 2010
transition opportunities, and the
associated costs (Fujiura, Roccoforte, &
Braddock, 1994; Ganz, 2007; Järbrink,
Fombonne, & Knapp, 2003; Mandell et al.,
2008; Ruble et al, 2005; Stahmer &
Mandell, 2007). In general, children with
ASD have a much more difficult time
accessing appropriate services than
children with other special healthcare
needs (Krauss et al., 2003). Data are still
lacking on how these differences in policy
and infrastructure relate to the
differences in services used, and in turn
how these differences affect outcomes for
children and families, and adults with
ASD.
What do we need?
People with ASD and their families need
assistance navigating complex service
systems to find the most appropriate
services and supports. Providers and
people with ASD and their families need
help choosing and implementing
evidence‐based services that are effective
and sustainable. Policy makers and
payers for services, including private
insurers and school districts, need
assistance creating organizational
structures and financial incentives so that
high‐quality interventions are
institutionalized. Equally important,
services researchers and community
organizations must collaborate to quickly
and efficiently develop much‐needed
services and supports for underserved
groups among people with ASD, and to
test widely‐used, safe, and promising
services that may not have much evidence
to support them.
Strategies to educate people with ASD
and their families about the best ways to
obtain appropriate services and supports
should be developed and tested. Methods
for simplifying the process by which
people access services also are needed,
with a focus on improving collaboration
across the many agencies that provide
services to people with ASD. This is
especially important for traditionally
underserved groups whose members
often are diagnosed late (or not at all),
and who are even more likely than other
people with ASD to receive inappropriate
or inadequate services.
An initial part of this process is the
assessment of needs and costs. Services
for developmental disorders are financed
largely by federal, state and local agencies
in both the health care and education
sectors. Because there are significant
regional differences in ASD resources,
describing this varied landscape across
states and localities in the U.S. will
provide important baseline data for those
with ASD and policymakers so they can
appropriately seek and plan for services
respectively. Research can also define the
cost‐effectiveness of evidence‐based
practices and thereby provide the data
needed by various payers and
policymakers.
Observational studies of current practice
can play an important role in
understanding how best to address
questions surrounding services and
supports. They can identify malleable
barriers and appropriate points of
intervention, and provide a baseline
against which to measure future
progress. Because service systems vary
greatly from place to place, these types of
studies also can take advantage of the
natural experiments that occur as
systems struggle to respond to the needs
of people with ASD.
30 | I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h
Question 5: Where Can I Turn For Services? 2010
Experimental studies are more difficult to
design and conduct in this area of science
than they are for traditional intervention
trials; yet are key to understanding the
best ways to improve community
services. Designs such as those used in
comparative effectiveness research,
where both groups receive intervention
(rather than having a “treatment as usual”
control), will be critically important to
satisfy ethical and practical
concerns. Because the unit of analysis for
many of these studies is the provider or
system, rather than the person with ASD,
large‐scale network studies and quasi‐
experimental designs will also yield
information.
Families, people with ASD, and
communities can be empowered to
become partners in research that can in
turn inform policy. Research must include
services that are built upon principles of
self‐direction and self‐determination, and
emphasize quality of life across the ASD
spectrum. All people with ASD, their
families, and support systems should
have the services and supports they need
and desire throughout the lifespan to lead
productive lives in the community, and to
reach their fullest potential.
ASPIRATIONAL GOAL: COMMUNITIES
WILL ACCESS AND IMPLEMENT
NECESSARY HIGH QUALITY, EVIDENCE
BASED SERVICES AND SUPPORTS THAT
MAXIMIZE QUALITY OF LIFE AND
HEALTH ACROSS THE LIFESPAN FOR
ALL PEOPLE WITH ASD.
Research Opportunities
!
Development and effective
dissemination of evidence‐based
community practices for people
with ASD across the spectrum and
lifespan.
!
Comparative effectiveness studies
of services and supports for people
with ASD across the spectrum and
lifespan.
!
Studies that characterize current
ASD diagnostic and service
utilization patterns in community
settings, examine the relationship
between the likelihood of a
diagnosis and services availability
for ASD, and evaluate services and
intervention outcomes across the
spectrum and lifespan.
!
Development of a coordinated,
integrated, and comprehensive
community‐based service delivery
system for people with ASD.
I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h | 31
Question 5: Where Can I Turn For Services? 2010
ShortTerm Objectives
A. Support two studies that assess
how variations and access to
services affect family functioning
in diverse populations, including
underserved populations, by 2012.
IACC Recommended Budget:
$1,000,000 over 3 years.
New Objective:
B. Conduct one study to examine how
self‐directed community‐based
services and supports impact
children, youth, and adults with
ASD across the spectrum by 2014.
IACC Recommended Budget:
$6,000,000 over 3 years.
New Objective:
C. Implement and evaluate two
models of policy and practice‐level
coordination among state and local
agencies to provide integrated and
comprehensive community‐based
supports and services that
enhance access to services and
supports, self‐determination,
economic self‐sufficiency, and
quality of life for people with ASD
across the spectrum and their
families, with at least one project
aimed at the needs of transitioning
youth by 2015. IACC Recommended
Budget: $10,000,000 over 5 years.
LongTerm Objectives
A. Test four methods to improve
dissemination, implementation,
and sustainability of evidence‐
based interventions, services, and
supports in diverse community
settings by 2013. IACC
Recommended Budget: $7,000,000
over 5 years.
B. Test the efficacy and cost‐
effectiveness of at least four
evidence‐based services and
supports for people with ASD
across the spectrum and of all
ages living in community settings
by 2015. IACC Recommended
Budget: $16,700,000 over 5 years.
New Objective:
C.
Evaluate new and existing pre‐
service and in‐service training to
increase skill levels in service
providers, including direct
support workers, parents and
legal guardians, education staff,
and public service workers to
benefit the spectrum of people
with ASD and promote
interdisciplinary practice by
2015. IACC Recommended Budget:
$8,000,000 over 5 years.
**Note: Objectives in boxes labeled “New Objective” are either entirely new additions to the 2010 Strategic
Plan or significantly modified objectives from the 2009 Strategic Plan. Objectives from the 2009 Strategic
Plan that did not change or that have been slightly modified for clarification purposes are unmarked.
32 | I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h
Question 6: What Does The Future Hold, Particularly For Adults? 2010
6. WHAT DOES THE FUTURE HOLD,
PARTICULARLY FOR ADULTS?
!
What will my family member be
like when he/she gets older?
!
What is known about adults
with ASD and how can I plan for
the future?
!
How does American society
support people with ASD?
What do we know?
An overarching goal of ASD research is to
enable people with ASD to lead fulfilling
and productive lives in the community.
We are in critical need of information
about the current landscape of long‐term
outcomes for all people with ASD across
the spectrum. The lack of knowledge
about adults with ASD and their lifetime
support needs has repeatedly arisen as a
critical issue when stakeholders are
queried about their most fundamental
concerns. Longitudinal studies designed
to capture the range of possible outcomes
for people with ASD are best suited to
inform public policy decision‐making,
service and support delivery, and funding
strategies. It is also important to improve
public understanding of ASD in adults,
including older adults, so that they may
receive support from the communities
where they live. Efforts to improve public
awareness and community supports help
foster acceptance, inclusion, and
appreciation of people with ASD.
ASD poses economic and social costs for
people with ASD, their families, and
society at large. Although ASD symptoms
vary greatly in character and severity,
autism occurs in all ethnic and
socioeconomic groups and affects every
age group. Some scientists and
economists have estimated that the
combined direct and indirect costs to
provide lifelong supports for all
Americans with ASD exceeds $35 billion,
and that each person accrues
approximately $3 million in costs over his
or her lifetime (Ganz, 2007). Families
often report incurring large debts related
to medical and educational services not
covered through public programs or
medical and dental insurance. Many
families find the transition from the
education system, where services are
mostly obligatory, to the developmental
disabilities and vocational systems, where
services are optional, difficult to
understand and manage. This
fragmentation of service systems impedes
access to services, especially for youth
transitioning to adulthood, as well as
during other periods of transition. In
addition to financial challenges, ASD can
lead to emotional hardships for people
with ASD and their families throughout
life.
What do we need?
Although considerable research has
focused on the earliest phase of ASD,
through early screening, improved
diagnostics and early intervention, far
less effort has addressed the adolescent,
adult, and older adult phases of life.
Minimal guidance exists for people with
ASD across the spectrum and their
families about the trajectories of ASD
across the lifespan. Although the general
assumption is that children who possess
expressive and receptive language skills
and coping strategies and who do not
demonstrate significant challenging
behaviors can sometimes excel as adults,
while children who do not currently
I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h | 33
Question 6: What Does The Future Hold, Particularly For Adults? 2010
possess typical expressive language skills
and who engage in significant challenging
behavior will grow up to need long‐term,
24/7 supports and services, the evidence
base for these ideas is lacking. Scientists
have not yet identified key prognostic
factors or detailed information about how
adults across the spectrum with ASD
function, where they are, and how they
are best supported.
More research is needed to tailor
treatments, interventions, and services
and supports to the evolving needs of
adolescents transitioning to adulthood,
and adults across the spectrum with ASD,
with an emphasis on principles of self‐
determination. There is a need to address
co‐occurring conditions and
developmental changes that coincide with
transitions such as adolescence to
adulthood, to better assess functional
outcomes, and to integrate standardized
quality‐of‐life measures for adults across
the spectrum with ASD living in
community settings. Factors that
contribute to improved quality of life and
health outcomes in adulthood are
virtually unknown.
A number of other areas raise serious
concerns. There is little information about
the number of adults with ASD within the
criminal justice system. Some adults with
ASD may not be diagnosed, or may have
been mis‐diagnosed. Although issues
surrounding the direct support workforce
are well documented, we do not know if
they differ respective to adults with ASD.
Community integration and access to
individualized, quality adult supports and
services are problematic across the
United States, and long waiting lists for
subsidized community‐based services
persist. Many services are available only
to people who meet institutional level of
care requirements. Additionally, there is
scant research on the use and safety of
psychopharmaceutical medications in
adults with ASD.
ASPIRATIONAL GOAL: ALL PEOPLE
WITH ASD WILL HAVE THE
OPPORTUNITY TO LEAD SELF
DETERMINED LIVES IN THE
COMMUNITY OF THEIR CHOICE
THROUGH SCHOOL, WORK,
COMMUNITY PARTICIPATION,
MEANINGFUL RELATIONSHIPS, AND
ACCESS TO NECESSARY AND
INDIVIDUALIZED SERVICES AND
SUPPORTS.
Research Opportunities
!
Studies of the scope and impact of
the spectrum of ASD in adults,
including diagnosis of ASD in
adulthood, needs during critical
life transitions, and quality of life.
!
Longitudinal studies that follow
carefully characterized cohorts of
the broad spectrum of adults with
ASD and their families into
adulthood in order to better
understand their needs during
critical life transitions, and to
identify and track risk and
protective factors that account for
improved quality of life and health
outcomes.
!
Projects that increase coordination
across State and local delivery
systems to improve access to
services and supports, particularly
those that focus on transitioning
youth and adults with ASD.
34 | I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h
Question 6: What Does The Future Hold, Particularly For Adults? 2010
!
Improved understanding of the
challenges associated with
accessing community housing for
people with ASD.
ShortTerm Objectives
New Objective:
A. Launch at least two studies to
assess and characterize variation
in the quality of life for adults on
the ASD spectrum as it relates to
characteristics of the service
delivery system (e.g., safety,
integrated employment, post‐
secondary educational
opportunities, community
inclusion, self‐determination,
relationships, and access to health
services and community‐based
services) and determine best
practices by 2012. IACC
Recommended Budget: $5,000,000
over 3 years.
New Objective:
B. Evaluate at least one model, at the
state and local level, in which
existing programs to assist people
with disabilities (e.g., Social
Security Administration,
Rehabilitation Services
Administration) meet the needs of
transitioning youth and adults
with ASD by 2013. IACC
Recommended Budget: $5,000,000
over 3 years.
New Objective:
C. Develop one method to identify
adults across the ASD spectrum
who may not be diagnosed, or are
misdiagnosed, to support service
linkage, better understand
prevalence, track outcomes, with
consideration of ethical issues
(insurance, employment, stigma)
by 2015. IACC Recommended
Budget: $8,400,000 over 5 years.
New Objective:
D.
Conduct at least one study to
measure and improve the quality
of life‐long supports being
delivered in community settings
to adults across the spectrum
with ASD through provision of
specialized training for direct care
staff, parents, and legal guardians,
including assessment and
development of ASD‐specific
training, if necessary, by 2015.
IACC Recommended Budget:
$7,500,000 over 5 years.
LongTerm Objectives
New Objective:
A. Develop at least two individualized
community‐based interventions
that improve quality of life or
health outcomes for the spectrum
of adults with ASD by 2015. IACC
Recommended Budget: $12,900,000
over 5 years.
**Note: Objectives in boxes labeled “New Objective” are either entirely new additions to the 2010 Strategic
Plan or significantly modified objectives from the 2009 Strategic Plan. Objectives from the 2009 Strategic
Plan that did not change or that have been slightly modified for clarification purposes are unmarked.
I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h | 35
Question 6: What Does The Future Hold, Particularly For Adults? 2010
New Objective:
B.
Conduct one study that builds on
carefully characterized cohorts
of children and youth with ASD
to determine how interventions,
services, and supports delivered
during childhood impact adult
health and quality of life
outcomes by 2015. IACC
Recommended Budget:
$5,000,000 over 5 years.
New Objective:
C.
Conduct comparative
effectiveness research that
includes a cost‐effectiveness
component to examine
community‐based interventions,
services and supports to
improve health outcomes and
quality of life for adults on the
ASD spectrum over age 21 by
2018. IACC Recommended
Budget: $6,000,000 over 5 years.
New Objective:
D.
Conduct implementation
research to test the results from
comparative effectiveness
research in real‐world settings
including a cost‐effectiveness
component to improve health
outcomes and quality of life for
adults on the ASD spectrum over
age 21 by 2023. IACC
Recommended Budget:
$4,000,000 over 5 years.
**Note: Objectives in boxes labeled “New Objective” are either entirely new additions to the 2010 Strategic
Plan or significantly modified objectives from the 2009 Strategic Plan. Objectives from the 2009 Strategic
Plan that did not change or that have been slightly modified for clarification purposes are unmarked. .
36 | I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h
Question 7: What Other Infrastructure and Surveillance Needs Must Be Met? 2010
7. WHAT OTHER INFRASTRUCTURE AND
SURVEILLANCE NEEDS MUST BE MET?
!
What infrastructure systems
need to be supported,
strengthened, or built to
support this plan?
!
How can we ensure that
resources and data are shared
to support the scientific
research process?
!
How can we ensure that findings
are communicated to the public
in a responsible and timely
manner?
!
How can we improve autism
surveillance efforts?
What do we know and what do we
need?
Current infrastructure may be insufficient
to adequately support the research
programs outlined in this plan. Additional
investment in infrastructure is necessary
to collect and share data among
researchers, to encourage and enable
individuals with ASD and their families to
participate in research, and to improve
the speed with which findings are
disseminated and the extent to which
findings are translated into practice and
policy.
Data Sharing:
In 2006, the National Institutes of Health
(NIH) launched the National Database for
Autism Research (NDAR) to improve
sample sizes and enable researchers to
share data for increased analyses. The
NIH‐supported national Autism Centers of
Excellence (ACE), as well as the grants
funded under the “Research to Address
the Heterogeneity in Autism Spectrum
Disorders” Request for Applications as
part of the American Recovery and
Reinvestment Act (ARRA), receive
funding contingent upon acceptable plans
and means for data sharing. Incentives
are needed, however, to encourage data
submission by other researchers. It will
also be necessary to link other significant
ASD databases with NDAR. In addition,
databases that collect information and
coordinate recruitment of people with
ASD and their families to participate in
research studies need to be enhanced and
expanded. Programs to support
contribution of data for recruitment,
healthcare, education, social services and
administrative databases, like the
Interactive Autism Network (IAN), should
be encouraged. Collecting information
about people with ASD will facilitate the
study of whether early diagnosis, entry to
services and type of intervention affects
the course of ASD over time. Multiple data
sources from existing research or service
systems (e.g., education, Medicaid, etc.)
currently operate in isolation. Compiling
and sharing data from existing data
sources need to address data
standardization as well as important
privacy and ethical issues. Methods for
merging such databases and linking
investigator‐recruited samples to these
merged databases have been used in
other populations and in specific locales
with success and need to be further
developed.
Biobanking:
Many in the field have highlighted the
need to establish nationally coordinated
strategies for the collection and
preservation of post‐mortem tissue from
I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h | 37
Question 7: What Other Infrastructure and Surveillance Needs Must Be Met? 2010
both people with and without ASD. The
existing brain and tissue bank resources
must be expanded to meet the high and
continuously increasing demand for post‐
mortem tissue by scientific investigators.
More well‐preserved brains are needed
from people at various stages of
development and particularly from those
with few co‐occurring disorders.
Additional matched controls are needed,
as well, to supplement the limited supply
in existing repositories.
In addition, it will be necessary to develop
methods, standards and protocols for
collecting and storing other biological
specimens such as blood and urine which
might be used to study biological
differences or signatures, and skin
fibroblasts for creation of pluripotent
stem cells.
Surveillance:
Autism surveillance provides important
estimates on the numbers of children
affected with ASD and helps describe the
characteristics of the people with autism
spectrum disorders in the general
population. Surveillance must be
sustained over a period of many years in
order to track trends in prevalence
estimates over time, and is an essential
building block for population‐based
research — providing clues about
potential risk factors that warrant further
study. Surveillance provides important
data regarding early identification of
children with autism, and informs
education and health systems regarding
areas in which programs can be modified
in order to improve early identification
and intervention. Surveillance data also
provide critically important information
for communities to use when planning for
services.
In 2007, CDC’s Autism and Developmental
Disabilities Monitoring (ADDM) Network
published the first and most
comprehensive summary of autism
prevalence estimates in the United States
(CDC, 2007). These data showed that
between 1 in 100 to 1 in 300 (with an
average of 1 in 150 children) were
identified with ASD. In October 2009,
investigators from HRSA and CDC
reported that ASD occurs in an estimated
1.1% of children 3 to 17 years, based on
parent‐report during the National Survey
of Children's Health (NSCH), sponsored
by HRSA (Kogan et al., 2009). Updated
estimates from CDC's ADDM Network,
published in December 2009, confirmed
that approximately 1% of children were
identified with an ASD (between 1 in 80
to 1 in 240 children with an average of 1
in 110) (CDC, 2009). There was an
increase of 57% in identified ASD
prevalence from 2002 to 2006 in multiple
areas of the US. While these data provide
important information for service
planning, and begin to help us understand
that the increases are not fully accounted
for by improved identification, many
questions related to the multiple causes
of ASD increases remain.
There are a number of areas in which
prevalence studies could be improved,
including the continued estimation and
evaluation of prevalence in the same
population over time; assessment of ASD
prevalence in the context of other
neurodevelopmental disorders; further
analyses of existing datasets to examine
the multiple identification and potential
risk factors as they vary by prevalence;
collection of data beyond core ASD
symptoms, including genetic data and co‐
occurring medical, dental, and behavioral
conditions; and expansion of studies
across ages.
38 | I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h
Question 7: What Other Infrastructure and Surveillance Needs Must Be Met? 2010
Supporting international autism
surveillance activities, prevalence
estimates, and epidemiologic research
will also be important, in order to
compare prevalence estimates and
epidemiologic characteristics across
countries.
Communication and Dissemination:
Research data regarding autism is now
being published at a rapid rate. It is
critical that new findings are
communicated promptly and
appropriately to the public so that
research findings can be better translated
into practice as appropriate. Effective
translation is important so that new
findings can be utilized to improve risk
assessment and implementation of
individualized interventions to reduce the
disabling symptoms and promote a
positive developmental trajectory as early
as possible. Additional attention needs to
be paid to improving the communication
channels between scientists,
practitioners, people with ASD and their
families.
Research Workforce Development:
In order to accomplish the necessary
research in the field of autism, it will also
be important to develop an adequate
scientific workforce. While much autism
research is already underway, there are
several areas of research that are new
and growing, including interdisciplinary
research, where additional researchers
will be needed in the coming years. In
fiscal year 2009, there were 92 trainees
(graduate students and postdoctoral
fellows) supported by specific NIH
training and fellowship grants to study
autism. These are in addition to the
trainees supported on more than 300 NIH
research grants focused on autism. The
continued expansion and development of
this research workforce will be essential
to fulfilling the goals laid out in the IACC
Strategic Plan.
There is also need to build a system for
rapid replication studies concerning key
findings. In addition, there is still not
agreement about meaningful subtypes or
about how to individualize treatment. As
more professionals become involved in
autism research, there is a need for
organized input from established
scientists to provide guidance and
expertise.
In addition, it will be necessary to identify
and address the wide range of ethical and
clinical issues related to the diagnosis,
assessment, and communication of
genetic, environmental, and clinical risk
for autism.
I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h | 39
Question 7: What Other Infrastructure and Surveillance Needs Must Be Met? 2010
ASPIRATIONAL GOAL: DEVELOP AND
SUPPORT INFRASTRUCTURE AND
SURVEILLANCE SYSTEMS THAT
ADVANCE THE SPEED, EFFICACY AND
DISSEMINATION OF AUTISM
RESEARCH.
developing fibroblast repositories
to produce pluripotent stem cells.
Protocols should be put into place
to expand the capacities of ongoing
large‐scale children’s studies to
collect and store additional
biomaterials, promoting detection
of biological signatures. IACC
Recommended Budget for
establishing biobanks by 2011:
$10,500,000 over 2 years. IACC
Recommended Budget for
maintaining biobanks: $22,200,000
over 5 years.
ShortTerm and LongTerm Objectives
A. Conduct a needs assessment to
determine how to merge or link
administrative and/or surveillance
databases that allow for tracking
the involvement of people living
with ASD in healthcare, education
and social services by 2009. IACC
Recommended Budget: $520,000
over 1 year.
New Objective:
E. Begin development of a web‐based
toolbox to assist researchers in
effectively and responsibly
disseminating their finding to the
community, including people with
ASD, their families, and health
practitioners by 2011. IACC
Recommended Budget: $400,000
over 2 years.
New Objective:
B. Conduct an annual “State of the
States” assessment of existing
state programs and supports for
people and families living with
ASD by 2009. IACC Recommended
Budget: $300,000 each year.
C. Develop and have available to the
research community means by
which to merge or link databases
that allow for tracking the
involvement of people in ASD
research by 2010. IACC
Recommended Budget: $1,300,000
over 2 years.
D. Establish and maintain an
international network of biobanks
for the collection of brain,
fibroblasts for pluripotent stem
cells, and other tissue or biological
material, by acquisition sites that
use standardized protocols for
phenotyping, collection, and
regulated distribution of limited
samples by 2011. This includes
F. Create funding mechanisms that
encourage rapid replication
studies of novel or critical findings
by 2011.
**Note: Infrastructure objectives that appeared in the
2009 Strategic Plan were moved from other chapters
to Question 7.
Objectives in boxes labeled “New Objective” are either
entirely new additions to the 2010 Strategic Plan or
significantly modified objectives from the 2009
Strategic Plan. Objectives from the 2009 Strategic
Plan that did not change or that have been slightly
modified for clarification purposes are unmarked
40 | I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h
Question 7: What Other Infrastructure and Surveillance Needs Must Be Met? 2010
New Objective:
New Objective:
G. Develop a web‐based tool which
provides population estimates of
ASD prevalence for states based on
the most recent prevalence range
and average identified by the
ADDM Network by 2012. IACC
Budget Recommendations:
$200,000 over 2 years.
New Objective:
K. Encourage programs and funding
mechanisms that expand the
research workforce, enhance
interdisciplinary research training,
and recruit early career scientists
into the ASD field by 2013. IACC
Recommended Budget: $5,000,000
over 3 years.
New Objective:
H. Create mechanisms to specifically
support the contribution of data
from 90 percent of newly initiated
projects to the National Database
for Autism Research (NDAR) and
link NDAR with other existing data
resources by 2012. IACC
Recommended Budget: $6,800,000
over 2 years.
New Objective:
L. Expand the number of ADDM sites
in order to conduct ASD
surveillance in younger and older
age groups; conduct
complementary direct screening to
inform completeness of ongoing
surveillance; and expand efforts to
include autism subtypes by 2015.
IACC Recommended Budget:
$16,200,000 over 5 years.
New Objective:
I. Supplement existing ADDM
Network sites to use population‐
based surveillance data to conduct
at least 5 hypothesis‐driven
analyses evaluating factors that
may contribute to changes in ASD
prevalence by 2012. IACC
Recommended Budget: $660,000
over 2 years.
New Objective:
J. Develop the personnel and
technical infrastructure to assist
states, territories, and other
countries who request assistance
describing and investigating
potential changes in the
prevalence of ASD and other
developmental disabilities by
2013. IACC Recommended Budget:
$1,650,000 over 3 years.
M. Support 10 “Promising Practices”
papers that describe innovative
and successful services and
supports being implemented in
communities that benefit the full
spectrum of people with ASD,
which can be replicated in other
communities by 2015. IACC
Recommended Budget: $75,000
over 5 years.
**Note: Infrastructure objectives that
appeared in the 2009 Strategic Plan were
moved from other chapters to Question 7.
Objectives in boxes labeled “New Objective” are either
entirely new additions to the 2010 Strategic Plan or
significantly modified objectives from the 2009
Strategic Plan. Objectives from the 2009 Strategic
Plan that did not change or that have been slightly
modified for clarification purposes are unmarked.
I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h | 41
Question 7: What Other Infrastructure and Surveillance Needs Must Be Met? 2010
Research Resources
Below is a list of currently available resources for conducting ASD research. It includes
government and nongovernment resources spanning topics such as genetics, bioinformatics,
brain and tissue samples, and animal resources, as well as resources related to surveillance,
prevalence, and services.
Government Resources
Centers for Autism and Developmental Disabilities Research and Epidemiology
(CADDRE)
http://www.cdc.gov/ncbddd/autism/caddre.html
Regional centers of excellence for ASD and other developmental disabilities which are
currently conducting the largest U.S. study of ASD risk factors
CDC Autism and Developmental Disabilities Monitoring (ADDM) Network
http://www.cdc.gov/ncbddd/autism/addm.html
A surveillance network that provides data about ASD prevalence and describes the
population of children with ASD
National Children’s Study
www.nationalchildrensstudy.gov/
A populationbased study of environmental influences on child health and
development that could be used to investigate the relationship between genetic and
environmental risk markers and ASD diagnosis
NDAR (National Database for Autism Research)
http://ndar.nih.gov
A secure bioinformatics platform for scientific collaboration and datasharing between
ASD investigators
NDAR Data Definition
http://ndar.nih.gov/ndarpublicweb/standards.go
A data definition of ASD research terminology
42 | I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h
Question 7: What Other Infrastructure and Surveillance Needs Must Be Met? 2010
NICHD Brain and Tissue Bank
http://medschool.umaryland.edu/BTBank/
A brain tissue repository to support and enhance the acquisition and distribution of
tissue samples from deceased individuals diagnosed with intellectual and
developmental disabilities for use in research studies
NIF (Neuroscience Information Framework)
http://nif.nih.gov
NeuroLex is a dynamic lexicon to improve communication among neuroscientists
about their data
NIH Pediatric MRI Data Repository
http://nih‐pediatricmri.org
A multisite longitudinal study used technologies (anatomical MRI, diffusion tensor
imaging [DTI], and MR spectroscopy [MRS]) to map pediatric brain development
NIMH Center for Collaborative Genetic Studies
http://nimhgenetics.org/
A repository of biospecimens from individuals with mental illnesses such as
schizophrenia, bipolar disorder, autism spectrum disorders, depression, and obsessive
compulsive disorders
NIMH Genetics Repository
http://nimhgenetics.org
A repository to produce, store, and distribute clinical data and biomaterials such as
DNA samples and cell lines (includes subjects with ASD)
NITRC (Neuroimaging Informatics Tools and Resources Clearinghouse)
http://www.nitrc.org
A neuroimaging tools repository, NITRC facilitates finding and comparing
neuroimaging resources for functional and structural neuroimaging analyses
I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h | 43
Question 7: What Other Infrastructure and Surveillance Needs Must Be Met? 2010
NonHuman Primate Atlas of Gene Expression through Development
http://www.blueprintnhpatlas.org/nhp
An atlas mapping the expression of particular genes to specific neuroanatomical
locations across several timepoints in development in the rhesus monkey
NonGovernment Resources
AGRE (Autism Genetic Resource Exchange)
http://www.agre.org
A repository for biomaterials and associated phenotype and genotype information
from over 1,000 individuals with an ASD diagnosis and their families
Autism Genome Project
http://www.autismspeaks.org/science/research/initiatives/autism_genome_project.php
A study to find the genes associated with inherited risk for autism
Autism Tissue Program
http://www.brainbank.org
An ASD brain tissue repository
Autism Treatment Network
http://www.autismspeaks.org/science/programs/atn
A network of hospitals and physicians dedicated to developing a model of
comprehensive medical care for children and adolescents with autism
Baby Siblings Research Consortium
http://www.autismspeaks.org/science/research/initiatives/babysibs.php
A consortium studying the infant siblings of children with ASD in order to identify
early behavioral and biomedical markers of the disorder
IAN (Interactive Autism Network)
http://www.ianproject.org
An online registry of over 35,000 people who have or are related to those with ASD
44 | I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h
Question 7: What Other Infrastructure and Surveillance Needs Must Be Met? 2010
ISAAC (Internet System for Assessing Autistic Children)
http://www.autismtools.org/index.cfm
A webbased application for administering and managing health research
projects/studies and the associated data
RedCap
http://project‐redcap.org
Two secure, webbased applications (REDCap and REDCap Survey) designed to
support data capture for research studies
SFARI (Simons Foundation Autism Research Initiative)
https://sfari.org/simons‐simplex‐collection/
A repository of genetic samples and phenotypic data from families where parents
without ASD give birth to a child with the disorder
I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h | 45
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52 | I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h
Roster 2010
Interagency Autism Coordinating Committee Member Roster
CHAIR
Thomas R. Insel, M.D.
Director
National Institute of Mental Health
National Institutes of Health
Bethesda, MD
FEDERAL MEMBERS
James F. Battey, M.D., Ph.D.
Director
National Institute on Deafness and
Other Communication Disorders
National Institutes of Health
Bethesda, MD
Linda Birnbaum, Ph.D.
Director
National Institute of Environmental
Health Sciences
National Institutes of Health
Research Triangle Park, NC
Ellen W. Blackwell, M.S.W.
Division of Community and Institutional
Services
Disabled and Elderly Health Programs
Group
Center for Medicaid and State Operations
Centers for Medicare and Medicaid
Services
Baltimore, MD
Henry Claypool
Director
Office on Disability
U.S. Department of Health and Human
Services
Washington, DC
Francis S. Collins, M.D., Ph.D.
Director
National Institutes of Health
Bethesda, MD
Alan E. Guttmacher, M.D.
Acting Director
Eunice Kennedy Shriver National Institute
of Child Health and Human Development
National Institutes of Health
Bethesda, MD
Gail R. Houle, Ph.D.
Associate Division Director
Research‐to‐Practice Division
Early Childhood Programs
Office of Special Education Programs
U.S. Department of Education
Washington, DC
Larke N. Huang, Ph.D.
Senior Advisor on Children
Office of the Administrator
Substance Abuse and Mental Health
Services Administration
Rockville, MD
I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h | 53
Roster 2010
Jennifer G. Johnson, Ed.D.
PUBLIC MEMBERS
Program Specialist
Administration on Developmental
Lee Grossman
Disabilities
President and CEO
Autism Society of America
Administration for Children and Families
Bethesda, MD
Washington, DC
Walter J. Koroshetz, M.D.
Yvette M. Janvier, M.D.
Deputy Director
Medical Director
National Institute of Neurological
Children’s Specialized Hospital
Disorder and Stroke
Toms River, NJ
National Institutes of Health
Bethesda, MD
Christine M. McKee, J.D.
Rockville, MD
Edwin Trevathan, M.D., M.P.H.
Director, National Center on Birth Defects
Lyn Redwood, RN, M.S.N.
and Developmental Disabilities
Co‐Founder and Vice President
Coalition for Safe Minds
Centers for Disease Control and
Prevention
Tyrone, GA
Atlanta, GA
Stephen M. Shore, Ed.D.
Peter van Dyck, M.D., M.P.H.
Executive Director
Associate Administrator
Autism Spectrum Consulting
Maternal and Child Health
Newton, MA
Health Resources and Services
Alison Tepper Singer, M.B.A.
Administration
Rockville, MD
President
Autism Science Foundation
New York, NY
NIH/NIMH Office of Autism Research Coordination Staff
6001 Executive Boulevard, Room 8185, Bethesda, MD 20892
Email: [email protected]
Della M. Hann, Ph.D.
Acting Director
Susan A. Daniels, Ph.D.
Deputy Director
Erin H. Bryant, M.J.
Science Writer/Editor
Nicole Jones
Web Developer
Monica P. Mallampalli, Ph.D.
Science Policy Analyst
Miguelina Perez
Program Specialist
Sarah E.V. Rhodes, Ph.D.
Detailee, NIMH Intramural Research
Program
54 | I A C C S t r a t e g i c P l a n f o r A S D R e s e a r c h
| File Type | application/pdf |
| File Title | The 2010 Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research - January 19, 2010 |
| Subject | The 2010 Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research - January 19, 2010 |
| Author | Interagency Autism Coordinating Committee (IACC) |
| File Modified | 2010-11-16 |
| File Created | 2010-07-27 |