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The 2010 Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research - January 19, 2010

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Question 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 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.
  • Improved understanding of the challenges associated with accessing community housing for people with ASD.

Short-Term Objectives

  1. New objective
    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.
  2. New objective
    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.
  3. New objective
    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.
  4. New objective
    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.

Long-Term Objectives

  1. New objective
    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.
  2. New objective
    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.
  3. New objective
    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.
  4. New objective
    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.

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