• 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 $2 million to $3 million in costs over his or her lifetime (Ganz, 2007; Knapp, Romeo & Beechum, 2009). 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, including 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 misdiagnosed. Although issues surrounding the direct support workforce are well documented, we do not know if they differ with respect 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.

2011 Addendum To Question 6: What Does the Future Hold, Particularly for Adults?

What Is New in This Research Area, and What Have We Learned This Past Year?

The continuing lack of services research on youth and adults diagnosed with ASD (as well as those who go undiagnosed), public comment received by the IACC in 2010, and the 2008 and 2009 IACC ASD Research Portfolio Analysis reports continue to highlight the urgent need for additional scientific research specific to this group (IACC, 2010a,b (PDF – 1.7 MB)). In 2010, several national advocacy organizations devoted private resources to initiatives on adult services that have been brought to the IACC's attention.

In September 2010, the Department of Health and Human Services (HHS) announced a joint grant program administered by the Centers for Medicare & Medicaid Services (CMS) and the Administration on Aging, in part to expand the Aging and Disability Resource Centers to better assist people with disabilities, older adults, and their caregivers (HHS Press Release, 2010). As greater numbers of adults with disabilities, including ASD, access the strengthened infrastructure, more research is needed regarding their support needs. To help define a national research agenda on autism and aging, a privately funded conference, "Autism and Aging," was held in March 2010 that brought experts in the field together to discuss what is currently known on the subject and what future research is needed. Participants identified several priority areas, including the development of diagnostic criteria and instruments for diagnosing and assessing the needs of older adults with ASD. They also cited the need for descriptive studies that examine the symptoms and behaviors, neuropsychiatric features, and related medical conditions in the population, as well as the progression of these characteristics over time (Piven et al., 2010).

Several articles related to transitioning from entitlement-based education services to the adult services system and higher education were published in 2010 (Chappel & Somers, 2010; McDonough & Revell, 2010; Schall & McDonough, 2010; Wehmeyer et al., 2010 (PDF – 811 KB)). These indicated that early collaboration between services system partners greatly increased access to adult services and employment. A small survey of Japanese adults with ASD who did not have intellectual disability suggested that higher levels of education increased the likelihood of obtaining employment, but that education did not improve the likelihood that the job would be retained (Yokotani, 2010). Studies from the United States indicated that the transition from high school may actually have the most negative impact on individuals with higher cognitive levels, who are more likely to lose services (Taylor et al., 2010a,b).

In July 2010, President Obama indicated the Administration's commitment to expand disability employment in the Federal workforce, emphasizing the need for additional research in the area of ASD employment across the spectrum.

In other new research, recent studies examining the role of behaviors and co-occurring conditions in adults with ASD indicated that many people with ASD, especially those with intellectual and developmental disabilities (ID/DD), have ongoing deficits related to independence and quality of life (Chowdhury, Benson & Hillier, 2010; Cohen et al., 2010; Esbensen et al., 2010; Hove & Havik, 2010; Smith & Matson, 2010a,b).

A 2010 article on the prevalence of ASD in Iceland also indicated that ASD may be about 50% underdiagnosed in adults, especially in people who have ID as their primary diagnosis (Saemundsen et al., 2010). This finding is consistent with recent State data specific to ASD from the National Core Indicators Project, sponsored by the National Association of State Directors of Developmental Disabilities Services (NASDDDS) (National Core Indicators Project website).

Finally, an environmental scan of interventions for people with ASD, sponsored by the Centers for Medicare & Medicaid Services, examined interventions for adults with ASD and found effectiveness for only nine interventions for adults (Young et al., 2010 (PDF – 2.44 MB)). Only a third of the interventions evaluated rated as "evidence-based." The report also highlighted the need for further research on effective community-based services for adults. For example, adults with ASD commonly attend "day programs," but no formal research exists on the practice.

What Gap Areas Have Emerged Since Last Year?

Although some minimal improvement is predicted for State budgets in 2011, State and local governments are anticipated to face continuing fiscal constraints (National Governors Association & National Association of State Budget Officers, 2010). Budget cuts, somewhat mitigated by ongoing Federal financial assistance, have resulted in fewer optional services in programs including Medicaid, which provide many poor adults who have ASD with acute care, home- and community-based services, and other supports (Johnson, Oliff & Williams, 2010 (PDF – 751 KB)).

There is little research specific to older adults with autism and their caregivers, although some research from the University Centers for Excellence in Developmental Disabilities (UCEDD) program, supported by the Administration on Developmental Disabilities (ADD) and Administration for Children and Families (ACF), is directed at cross-disability aging issues (Association of University Centers on Disabilities website). Although some research is focused on adults on the ASD spectrum and their families, more is needed, including greater utilization of the participatory action research (PAR) and community-based participatory research (CBPR) models (Viswanathan et al., 2004 (PDF – 3.14 MB)). The Administration on Developmental Disabilities (ADD) supported development of a PAR Toolkit, which could serve as a potential resource (Oregon Health & Science University, PAR Toolkit).

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.
• It is important to include people with ASD and their families in the scientific research process. The use of models such as participatory action research (PAR) and community-based participatory research (CBPR) will facilitate full participation by people with disabilities and their family members in the planning, implementation, and evaluation of research. (Added 2011)

Short-Term Objectives

Note: Dates that appear next to the objectives indicate the year that the objective was added to the Strategic Plan. If the objective was revised in subsequent editions of the Plan, the revision date is also noted.

Dates 2010	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.
Dates 2010	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.
Dates 2010	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, and track outcomes with consideration of ethical issues (insurance, employment, stigma) by 2015. IACC Recommended Budget: $8,400,000 over 5 years.
Dates 2010	D.	Conduct at least one study to measure and improve the quality of lifelong 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

Note: Dates that appear next to the objectives indicate the year that the objective was added to the Strategic Plan. If the objective was revised in subsequent editions of the Plan, the revision date is also noted.

Dates 2010	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
Dates 2010	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.
Dates 2010 Revised in 2011	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. Topics should include: Community housing for people with ASD; Successful life transitions for people with ASD, including from post-secondary education to adult services, employment, sibling relationships, and day programs; and Meeting the service and support needs of older adults with ASD. IACC Recommended Budget: $6,000,000 over 5 years.
Dates 2010	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 over 21 on the ASD spectrum by 2023. IACC Recommended Budget: $4,000,000 over 5 years.