ERIC ED524616: 2010 Strategic Plan for Autism Spectrum Disorder Research. NIH Publication No. 10-7573

0.74 MB·English

by  ERIC

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 year-long 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 two-day 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 non-verbal 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 The cost of ASD to affected people,
known, uncommon disorder. Today, with families, and society is enormous. A great
prevalence estimates increasing at an majority of adults with ASD struggle with
alarming pace, autism is emerging as a ongoing and mostly unmet needs for
national health emergency. Autism is now employment, housing, services, and
recognized as a group of syndromes supports. Compounding these stressors,
denoted as autism spectrum disorder families with a child with autism typically
(ASD). The most recent Centers for lose income, possibly as a result of one
Disease Control and Prevention (CDC) parent leaving the workforce in order to
prevalence estimates of ASD for children care for and meet the special health and
are 1 in 110 (CDC, 2009). These educational needs of the child (Montes &
estimates, more than ten-fold higher than Halterman, 2008). The cost to society of
two decades ago, raise several urgent ASD is currently estimated to be $35-$90
questions: Why has there been such an billion annually, the higher estimate being
increase in prevalence? What can be done comparable to Alzheimer’s disease (Ganz,
to reverse this alarming trend? How can 2007; Järbrink & Knapp, 2001). Although
we improve the outcomes of people research on ASD has expanded over the
already affected, including youth and past decade, there remains an urgent
adults? need for continuing research support.
Approaches to ASD diagnosis have It is imperative that resources be devoted
evolved as more has been learned about to research commensurate with the
the disorder. Currently, ASD is diagnosed public health need. Specifically, we need
on a combination of behavioral research that deepens our understanding
characteristics of impairment in verbal of ASD, including the complex genetic and
and nonverbal communication skills and environmental factors that play a role in
social interactions, and restricted, its causation; development of improved
repetitive, and stereotyped patterns of ASD diagnostic approaches and
behavior, and these can range in impact treatments; and science to enhance the
from mild to significantly disabling. level of services and supports available to
Adequately addressing these conditions people with ASD, their families and
requires sophisticated educational and caregivers. With current scientific
therapeutic approaches. Some people knowledge and tools, we have
with ASD also have a range of medical unprecedented potential for discoveries
conditions including, but not limited to: that will improve the quality of life for
motor and sensory impairments, seizures, people with ASD.
immunological and metabolic
abnormalities, sleep problems, and
gastrointestinal symptoms.
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Introduction 2010
In response to the heightened societal (cid:120) Convened expert workgroups
concern over ASD, Congress passed the to recommend research
Combating Autism Act (CAA) of 2006 (P.L. objectives and strategies.
109-416). Through this Act, Congress
intended to rapidly increase, accelerate (cid:120) Convened programmatic and
the pace, and improve coordination of agency experts to develop and
scientific discovery in ASD research. The recommend professional
CAA requires the Interagency Autism judgment budget estimates for
Coordinating Committee (IACC) to each objective in the Plan.
develop and annually update a Strategic
Plan for ASD research, including proposed (cid:120) Convened a scientific
budgetary requirements. workshop to review and revise
the Strategic Plan in 2009.
Driven by both the sense of urgency and a
spirit of collaboration, the IACC The Strategic Plan incorporates this array
developed an initial Strategic Plan for ASD of input in two main sections. First, the
Research in 2009 and revised it in 2010 in foundation of the Plan – vision, mission,
accordance with the CAA. The Plan and its core values, and crosscutting themes – is
revisions were developed through described. The remainder of the Plan is
extensive and iterative input from organized around seven critical questions
members of the public, academic, and asked by people and families living with
advocacy communities. In developing and ASD.
revising the Strategic Plan, the IACC:
(cid:120) When should I be concerned?
(cid:120) Identified recent investments
(cid:120) How can I understand what
and accomplishments in ASD
is happening?
research.
(cid:120) What caused this to happen
(cid:120) Assessed the strengths,
and can this be prevented?
weaknesses, opportunities, and
gaps in the ASD research
(cid:120) Which treatments and
enterprise.
interventions will help?
(cid:120) Gathered ideas for research
(cid:120) Where can I turn for
opportunities from a diverse
services?
group of stakeholders.
(cid:120) What does the future hold,
(cid:120) Convened four scientific
particularly for adults?
workshops and solicited input
from the public and non-
(cid:120) What other infrastructure
government research sponsors
and surveillance needs must
to identify research
be met?
opportunities.
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Vision Statement, Mission Statement, and Core Values 2010
Each question is followed by a brief Excellence – We will pursue
discussion of what we currently know innovative basic and clinical
and need from research, an aspirational research of the highest quality to
goal, research opportunities and protect the safety and advance the
objectives. This framework was chosen by interests of people affected by
the IACC to emphasize the need for ASD.
consumer-focused research that
addresses the most pressing questions of Spirit of Collaboration – We will
people and families living with ASD, and treat others with respect, listen to
to link these questions to specific diverse views with open minds,
research efforts. discuss submitted public
comments, and foster discussions
Vision Statement where participants can
comfortably offer opposing
The Strategic Plan will accelerate and opinions.
inspire research that will profoundly
improve the health and well being of Consumer-focused – We will
every person on the autism spectrum focus on making a difference in the
across the lifespan. The Plan will set the lives of people affected by ASD,
standard for public-private coordination including people with ASD, their
and community engagement. families, medical practitioners,
educators, and scientists. It is
Mission Statement important to consider the impact
of research on the human rights,
The purpose of the Strategic Plan is to
dignity, and quality of life of
focus, coordinate, and accelerate high
people with ASD from prenatal
quality research and scientific discovery
development forward.
in partnership with stakeholders to
answer the urgent questions and needs of Partnerships in Action – We will
people on the autism spectrum and their value cross-disciplinary
families. approaches, data sharing,
teamwork, and partnerships with
Core Values
clearly defined roles and
responsibilities.
The IACC adopted these core values and
emphasized their importance for the
Accountability – We will develop
Strategic Plan development and
SMART (Specific, Measurable,
implementation:
Achievable, Realistic, and Time-
bound) research objectives aligned
Sense of Urgency – We will focus
with funding priorities and
on what steps we can take to
develop systems for evaluation,
respond rapidly and efficiently to
assessing impact, and course
the needs and challenges of people
corrections.
and families affected by ASD.
IAC C S t rat e gi c P l an for AS D R esear ch |3
Crosscutting Themes 2010
Crosscutting Themes diagnosis, more precisely targeted
treatments, and increased public
The Strategic Plan for ASD Research is awareness about the diversity
designed to highlight the most promising inherent in ASD. Heterogeneity has
research ideas, while appreciating the a profound impact on the priorities
inherent unpredictability of research. and tactics of ASD research,
These ideas form the basis for the because any given study must
research opportunities and objectives of either focus on a particular focal
the Strategic Plan. In the process of point on the spectrum, or must be
gathering ideas from ASD stakeholders sufficiently complex and resourced
for this Plan, certain themes emerged to encompass a broader range
repeatedly. These themes are highlighted along the spectrum.
here to emphasize their importance Acknowledging heterogeneity also
across the framework. has implications for intervention.
With multiple causes and
Heterogeneity: Although certain
symptoms, there likely will be
core features are present at
multiple ways and approaches to
varying degrees among all people
intervene (e.g., medical,
with ASD—i.e., social impairments,
behavioral, nutritional). In so
communication difficulties, and
doing, the ASD field will be more
stereotyped behaviors—
strategically positioned to
considerable heterogeneity exists
determine what works best for
as well. In the context of ASD, the
which people.
term heterogeneity refers to the
constellation of behavioral and Prevention: It is critical for
medical conditions and symptoms research to identify the methods
that may accompany the disorder. and approaches that can be used to
The spectrum includes people with prevent the challenges and
ASD who are nonverbal and disabilities of ASD. Additionally, if
cannot live independently, and one views ASD as a biological
others who find gainful disorder triggered in genetically
employment and live susceptible people by
independently. There is little environmental factors, then
reason to assume that this prevention can include prevention
spectrum identifies a single of new cases of ASD through the
disorder. Rather, the spectrum identification and elimination of
encompasses a range of disorders. environmental causes. What is
The heterogeneity of ASD poses essential for ASD research is to
both challenges and opportunities develop the state of knowledge to
to researchers: challenges, because a level similar to what is now
there are likely to be many available in fields such as
different causal factors and cardiology. No longer do we need
trajectories for ASD subtypes, and to wait for someone to suffer a
opportunities, because recognition heart attack before providing life-
of the variety of ASD phenotypes saving treatments. Rather, early
can lead to more appropriate interventions are applied upon the
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Crosscutting Themes 2010
detection of risk factors so as to developmental trajectory are
preempt these more serious established.
consequences. Having sound
research on the risk factors and Lifespan Perspective:
the environmental triggers for ASD Historically, ASD has been
ultimately may allow us to achieve characterized as a disorder of
the goal of prevention: preventing childhood. Although most people
the development of the disorder in with ASD will not outgrow their
some people at risk or reducing diagnosis, their symptoms will
the degree of severity in those change in form and severity over
affected. time. There was great support
during the development of this
Earlier Detection: ASD is a Plan for more research on ASD in
developmental brain disorder that older people, especially the need
is currently diagnosed by the for practical strategies for
observation of core behavioral increasing the quality of life and
symptoms. As with many functioning of adolescents and
neurodevelopmental disorders, adults with ASD. As people with
brain dysfunction may precede ASD advocate for themselves and
abnormal behavior by months or expand our knowledge of their
even years. However, without experiences and needs, they
biomarkers to detect people either become partners in the research
with or “at risk” for ASD during effort.
pre- or neonatal periods, diagnosis
must rely on behavioral Data Sharing: Data sharing allows
observations long after birth. As a researchers to: (a) validate the
result, intervention efforts may research results of other
miss a critical developmental investigators; (b) pool
window. Until recently, most standardized information collected
children with ASD in the United by many different researchers to
States (U.S.) did not receive a facilitate rapid progress; and, (c)
diagnosis until school age, and use data collected by others to
diagnosis was further delayed explore hypotheses not considered
among disadvantaged or rural by the original investigators. The
populations (Mandell et al., 2007). expectations for data sharing have
It is critical that the field enhance increased with the recognition that
methods for detecting ASD earlier larger samples are needed to
in life and across diverse answer many research questions
populations, in order to bring and with the sense of urgency for
about earlier intervention. making progress. Databases for
Furthermore, a recurrent theme neuroimaging scans and genomic
expressed during the scientific sequence are already proving
workshops for the Plan was the important for ASD research. Wide
need for biomarkers to identify adoption of a standardized data
ASD risk before the behavioral sharing system like the National
manifestations and the delayed Database for Autism Research
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