Interagency Autism Coordinating Committee (IACC). 2016-2017 Interagency Autism Coordinating Committee Strategic Plan

For Autism Spectrum Disorder. October 2017. Retrieved from the U.S. Department of Health and Human Services Interagency

Autism Coordinating Committee website: https://iacc.hhs.gov/publications/strategic-plan/2017/.

About the IACC................................................................................................................................................................................................... IV

Introduction ...........................................................................................................................................................................................................V

Overview of Progress on Strategic Plan Objectives ................................................................................................................................. IX

2016-2017 Strategic Plan Objectives ........................................................................................................................................................... XII

Question 1: How Can I Recognize the Signs of ASD, and Why is Early Detection So Important? ............................................. XIV

They Progress into and through Adulthood? ...............................................................................................................................................72

Question 7: How Do We Continue to Build, Expand, and Enhance the Infrastructure System

to Meet the Needs of the ASD Community? ..........................................................................................................................................................86

Budget Recommendation .............................................................................................................................................................................. 100

Statement on Duplication of Effort ............................................................................................................................................................. 104

Conclusion ........................................................................................................................................................................................................ 106

Interagency Autism Coordinating Committee Member Roster ........................................................................................................... 163

Strategic Plan Working Group Members ...................................................................................................................................................167

Office of Autism Research Coordination Staff List ................................................................................................................................. 180

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee charged with coordinating

Federal activities concerning autism spectrum disorder (ASD) and providing advice to the Secretary of Health and Human

composed to ensure that the Committee is equipped to address the wide range of issues and challenges faced by individuals

and families affected by autism.

Under the CAA and subsequent authorizations, 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.

Through these and other activities, the IACC provides guidance to HHS and partners with other Federal departments,

Federal agencies, research and advocacy organizations, and the broader autism community to accelerate research and

enhance services with the goal of profoundly improving the lives of people with ASD and their families.

For more information about the IACC, see http://www.iacc.hhs.gov.

The Interagency Autism Coordinating Committee (IACC)

is a Federal advisory committee that advises the Secretary

reconstituted under the Combating Autism Act of 2006

annually. The IACC Strategic Plan, first issued in 2009, was

developed by the IACC – including Federal officials and

public stakeholder members – and each edition has been

informed by extensive input from researchers, adults on

the autism spectrum, parents, advocates, and the general

public. This inclusive process has ensured that the IACC

Strategic Plan reflects diverse perspectives from across the

IACC include in the Strategic Plan information concerning,

“as practicable…services and supports, for individuals with

addresses autism research, but also incorporates more

information about gaps, opportunities, and implications

related to autism services, supports, and policies.

This 2016-2017 revision of the IACC Strategic Plan is the

work of the IACC membership appointed under the CARES

Strategic Plan’s 78 research objectives, the IACC expects

that multiple funder portfolios will play key roles in

addressing different aspects of each objective in this Plan.

Furthermore, in light of the wide range of needs in autism

research and services, the IACC recommends doubling

the 2015 overall autism research budget level of $343

funding would not be sufficient to accomplish all of the

objectives described in this Plan, it would represent an

aggressive step toward progress.

and intervention. Today, our understanding of autism is

more nuanced. We realize that there are many different

that ASD affects several distinct domains of functioning

differently in each individual. We have come to understand

that autism is far more common than previously suspected

and there are most likely many undiagnosed children,

adolescents, and adults in the population, as well as

under-identified and underserved individuals and groups,

such as girls/women with ASD, people in poorly resourced

societal goals.

view of autism research progress, this update accompanies

two other annual IACC publications. The IACC Autism

Spectrum Disorder Research Portfolio Analysis Report describes

Federal and non-Federal investments in autism research.

The annual IACC Summary of Advances in ASD Research

use validated diagnostic tools can diagnose ASD by 18-24

months of age. Still, most children are not diagnosed in the

U.S. until four years of age, with disparities in diagnosis

related to socioeconomic factors, geographic location, and

race/ethnicity.

Given the unprecedented growth and

organization of the brain during the first three years of life,

parent-report screening tool, shows that with the

50% of children who test positive are later diagnosed with

ASD, and if all developmental delays are also considered,

then over 95% of children who test positive are diagnosed

with either autism or some other type of developmental

However, administering follow-up

compared to the estimated prevalence

with

which

While these findings suggest a future of

and has

early treatment engagement as afforded by screening

could be more directly examined. In terms of new, future

(intervention versus no intervention) may not be feasible

and the health impact is high, other complex forms of RCT

models could be used as well as utilizing administrative

data. Several states collect state-level data on youth who

receive ASD screening and subsequent developmental

children with and without early screening in terms of

variations in developmental outcomes.

Screening in and of itself does not determine if and when

evaluation and treatment engagement, nor does it determine

factors that follow after screening has occurred.

also calls for the need to standardize

qualify for special education at school-age are still not

are diagnosed on average more than a year later than their

White peers.

However, it has been demonstrated that

when physicians follow a standardized screening protocol,

including immediate referral for screen-positive cases,

disparities in age of diagnosis are reduced to approximately

1 month.

Therefore, access to screening for all children,

regardless of sociodemographic characteristics, language

spoken at home, and geographic locale, is crucial to

adhering to screening protocols, also is a critical gap in

the existing literature.

Developmental Disorders Monitoring (ADDM) Network

study,

White children were 20% more likely to have

indicators of ASD in their school and health records than

Black children, 40% more likely than Asian and Pacific

Islander children, and 50% more likely than Latino children.

A variety of factors, including economic challenges,

communities. A primary barrier to ASD early diagnosis is

the limited availability of diagnostic clinics with providers

trained in ASD diagnosis, leading to long waiting lists

and poor reimbursement for comprehensive diagnosis.

This limited availability is especially pronounced in

resource-poor and rural areas, with many children not

diagnosed until entry into the school system.

In addition, family level variables such as insufficient

financial resources, lack of insurance coverage, language

It is imperative to have a system

such as the

might put other underserved populations of ASD at a

disproportionate risk of not receiving a clinical diagnosis.

Based on recent literature, there appears to be a diagnostic

gender bias, which means that girls are less likely than

boys to meet diagnostic criteria for ASD at comparatively

high levels of autistic-like traits.

different symptoms from boys, which may make current

screening and diagnostic tools more likely to miss ASD

in girls.

While research is necessary to

trained in the identification and diagnosis of these disorders,

pathologists. Early detection of ASD will require training

young children, including primary care providers and child

care providers, to incorporate effective screening and

referrals in their daily practice patterns. In response to

However, primary care providers face barriers

to implementing screening that include the time necessary

to identify ASD, the cost of conducting screening and the

Also, practitioners may lack the technical training to review

and compare complex psychometric information on the

quality of developmental screening tools. Training for this

workforce is needed to improve their ability to screen

effectively, recognize ASD symptoms, communicate clearly

with parents, and refer appropriately for evaluation and

intervention services.

There is a need to raise public awareness of the early signs

of ASD, to encourage parents to observe and track their

child’s development, and to encourage them to discuss

their concerns with their child’s doctor, teachers, and other

care providers. The “Learn the Signs. Act Early.” campaign

developed by CDC, and the “16 Gestures by 16 Months”

series developed by the First Words Project are examples

of strategies that can be utilized to raise awareness and

facilitate parent-provider collaborations. However, there is

still a critical research gap on understanding how parent

coverage is inadequate to meet their myriad of complex

screening may improve screening rates and more readily

become a standard procedure in practices. A systemic

There is a need to validate tools in diverse settings and

populations. There is a need to evaluate the effectiveness

of universal screening for improving outcomes in ASD.

There is a great need to understand the disparities in access

and/or utilization of screening and diagnostic tools, and

entry into intervention services. In addition, research is

needed to develop, adapt, and validate tools that will enable

detection of autism in children with intellectual disabilities,

girls, and adults. The challenges and barriers include gaps

in the evidence base for the benefits of early detection in

intellectual disabilities.

• Improve family engagement and help build an awareness of healthy developmental milestones and warning signs of concern.

• Demonstrate the validity of different screening and diagnostic tools for culturally diverse communities.

• Increase services in high-poverty and underserved regions; improve inclusion of these populations in research.

• Address differences in state policy requirements for Medicaid and the requirement of a diagnosis to receive services.

• Develop a culturally competent and more culturally diverse workforce.

regions in response to sound or touch. The extent of this

reduced connectivity was related to parent reports of

sensory over-reactivity.

In the domain of touch, reduced

regions to a soft caress compared to typically developing

children, while increased activation was seen in response

to non-caress-like touch in the brain’s primary sensory

cortex. This over-activation may be related to the hyper-

sensitivity to touch seen in some ASD individuals.

individuals with ASD.

in adulthood. During these early critical time periods,

Identification of genes involved in syndromic autism enable

the study of the human phenotypes associated with those

genetic syndromes as well as phenotypes of genetic animal

models carrying the same mutations. The study of several

forms of syndromic ASD have revealed nervous system

differences such as differences in abundance of certain cell

pathological findings by making it possible to image brain

tissue in live subjects throughout the lifespan. These kinds

of the data by a variety of computational scientists.

the balance between neuronal excitation and inhibition,

networks that may impact early perceptual and cognitive

processes.

These processes may be measured through

provide a better understanding of how the brain develops

brain function and how early interventions may shape our

brain throughout our lifespan. Such coordinated efforts,

with standardization of data acquisition and analysis, are

needed in other imaging methods, such as EEG or MEG,

and in the integration of multiple modes of imaging

(structural and functional), particularly as they relate to

later behavior. Ultimately, these studies will lead to the

More

Another recent

response to a developmental disturbance, changes that

may be either beneficial or harmful, adaptive changes in

brain function and structure that predict response to

interventions, and developmental changes that inform

core developmental features, such as language or

nonverbal cognition.

symptoms. ASD most likely occurs due to a complex genetic

architecture composed of multiple interacting biological

pathways which combine to cause the phenotypic richness

that can be observed even between siblings.

In preliminary

studies that require replication, genetic associations have

been found to segregate to some extent with specific

phenotypes such as ASD with and without intellectual

aggression, anxiety, theory of mind (ability to understand

and reason about the thoughts of others), language

development, attention, and social cognition is still not

completely understood, but fundamental advances would

enable the search for disturbances in persons with ASD to

eventually understand phenotypic variability. To accomplish

this, it is necessary to standardize the classification criteria

addition, MRI studies have traditionally been difficult in ASD

individuals with intellectual impairment because of the

requirement to remain still and understand directions in

the MRI scanner; more of these studies have been done on

high-functioning individuals. However, new methodologies

have been developed that capitalize on the large body

methodological standards. For example, the Autism

project is focused on developing biomarkers for ASD

subgroups based on evaluations of brain function, visual

attention, as well as behavior and speech in children aged

6-11. Such studies will enable investigators to determine

the presence of mechanistically meaningful subgroups and,

in the absence of true subgroups, to understand continuous

relationships among biological processes and quantifiable

designed with longitudinal components that can offer

insight into changes associated with human development

across the lifespan. The National Database for Autism

Research (NDAR) provides a medium for making datasets

publicly available to benefit from the universe of analytic

laboratories carrying out the research.

There have also

as well as decreased quality of life for persons with ASD.

the prevalence and underlying biology of conditions that

commonly co-occur with ASD, including gastrointestinal

(GI) disturbances, epilepsy, sleep disorders, psychiatric

children with ASD are more prone to specific symptoms of

abdominal pain, constipation, and diarrhea.

Importantly,

many of the genes implicated in autism are also expressed

in the neurons outside of the central nervous system,

including those that innervate the GI system. However,

relatively little is known about autism risk gene functions

in the digestive tract, as well as in sensory perception

and motor function.

may impact function of both the brain and GI system.

in ASD.

Current research suggests that disturbances

application of modulators such as probiotics, helminths,

and certain special diets may prove useful for the

treatment of ASD.

and autism overlap.

increased prevalence of epilepsy in individuals with ASD,

well above the general population risk, and some suggest

development and contribute to the development of

social and cognitive impairments later in life.

It has been estimated that 69% of patients with ASD suffer

A major challenge for the biological sciences is to utilize

common data elements, and sharing of data and analysis

tools. Follow-up validation studies are a necessary part of

this process, and data sharing should be integrated into

Institute of Mental Health NDAR platform is a valuable

enable re-analysis of data and facilitate collaboration

to accelerate research progress.

autism has been made, but considerable challenges remain.

in brain function on development is needed. Basic science