Services Research for Autism Spectrum Disorder across the Lifespan (ServASD)

Presenter

Beverly Pringle, Ph.D.
Chief, Child and Adolescent Mental Health Services Research Program
Division of Services and Intervention Research

Goal

The goal of this initiative is to support research to develop and test the effectiveness of services strategies to improve functional outcomes and quality of life for people with autism spectrum disorder (ASD) at three key life stages: early childhood, transition from youth to adulthood, and adulthood.

Rationale

As the prevalence of ASD diagnoses in the United States increases, so does the need for a science-base on which to build optimal, integrated service systems that provide early diagnosis and engage people with ASD in developmentally appropriate care to reduce symptoms; enhance functioning; and, improve health, safety, and quality of life across the lifespan. ASD begins in early childhood, affecting about 1% of children in the United States. It also affects growing numbers of youth and adults, as children with an ASD diagnosis age into subsequent stages of life.¹ The ASD diagnosis is shared by people who vary widely in abilities and symptoms.² This heterogeneity in presentation, coupled with development over time, has expanded understanding of ASD, including the wide variation in service needs and attendant service delivery challenges across individuals and over the lifespan. While there has been considerable progress in biological research on autism, important knowledge gaps in the provision of effective services and supports for people with ASD persist. For example, available tools  for identifying ASD early are not widely used; only a fraction of children with ASD are identified in the first years of life, which is of particular concern given evidence that early intervention can change the course of ASD by raising IQ levels and improving language skills and behavior.^3,4 For youth with ASD, exiting high school is associated with a steep decline in receipt of services and with disparities in service use on the basis of race, socioeconomic status, and mental skills.⁵ Scientific evidence about effective services for adults with ASD is underdeveloped, and the extant research does not adequately reflect impairment heterogeneity, the range of service needs, and the necessity for coordination across service sectors.⁶

Accordingly, the state of the science on care and service delivery for ASD differs at these three stages. For very young children, there is a critical need for effective strategies to consistently and comprehensively identify those with ASD and link them to treatment at the earliest age possible. For youth with ASD who are “aging out” of the services and supports delivered via K-12 education and other child/adolescent service systems, research is needed on how to help them realize capacity for independence, to the extent possible, and optimize normative functioning in the adult world of continuing education and training, meaningful work, independent living in the community, and social support services. New research should incorporate effective services strategies to reduce or eliminate documented racial, ethnic or gender disparities in the identification of ASD and the receipt of intervention services. It is time to yoke together education and social science, and mental, behavioral, and physical health sciences in a concentrated effort to achieve these goals by focusing research on the service needs and research gaps associated with specific age groups.

This three-component initiative aims to support studies of services interventions to improve functional outcomes and quality of life for people with ASD across the lifespan. NIMH encourages, where possible, the leveraging of existing practice research infrastructures, including but not limited to the NIH-funded Clinical and Translational Science Awards (CTSA) and the Mental Health Research Network; the Health Resources and Services Administration-funded Autism Intervention Research Network on Behavioral Health (AIR-B), the Autism Intervention Research Network on Physical Health (AIR-P), and the Developmental and Behavioral Pediatrics Research Network (DBP-RN). The three components are as follows:

• Studies of early identification and linkage to services for ASD. This component would focus on enhancing service system capacity to identify, evaluate, and engage children with ASD in care by 2 years of age. Strategies for achieving these goals include but are not limited to the broader use of established surveillance methods and existing empirically validated screening and assessment tools, plus successful linkage to evidence-based services.
• Studies of services for transition-age youth with ASD. This component would develop and test strategies to involve transition-age youth and their families in planning for and shifting to adult life and actively engaging in the adult service system. In targeting transition-age youth, this component focuses on individuals with ASD who, in the coming months or years, will age out of the services and supports delivered via K-12 education and other child/adolescent service systems.
• Pilot studies of services strategies for adults with ASD. This component would develop and test services strategies to optimize capacity for independent functioning in adults with ASD. Of interest are strategies that improve availability of, engagement in, and/or coordination of services that target social functioning and community support; educational, vocational, housing and employment programs; health and safety management; and other services for adults with ASD.

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References

¹ Morbidity and Mortality Weekly Report (CDC), Surveillance Summaries, March 30, 2012 / 61(SS03);1-19; Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008; Autism and Developmental Disabilities Monitoring Network Surveillance Year 2008 Principal Investigators.

²Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition - Text Revision (DSM-IV-TR).

³ Shattuck PT, Durkin M, Maenner M, et al. Timing of identification among children with an Autism Spectrum Disorder. Journal of the American Academy of Child and Adolescent Psychiatry. 2009; 48:474-483.

⁴ Dawson G, Jones EJH, Merkle Kristen, et al. Early behavioral intervention is associated with normalized brain activity in young children with autism. Journal of the American Academy of Child and Adolescent. 2012; 51(11):1150-9.

⁵ Shattuck PT, Wagner M, Narendorf S, Sterzing P, and Hensley M. Post-High School Service Use Among Young Adults with Autism Spectrum Disorder. Archives of Pediatric and Adolescent medicine. 2011; 165(2): 141-146.

⁶ Shattuck PT, Roux AM, Hudson LE, et al. Services for adults with an Autism Spectrum Disorder. The Canadian Journal of Psychiatry. 2012; 57(5): 284-291.