- 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 for adults with ASD. Longitudinal studies designed to capture the range of possible outcomes for adults with ASD are best suited to inform public policy decision-making, service and support delivery, and funding strategies. Also it is important is to improve public understanding of ASD in adults, including older adults, so that they may receive support from communities to help them lead fulfilling and productive lives. Efforts to improve public awareness and community supports could help foster acceptance, inclusion, and appreciation of people with ASD.
ASD poses economic and social costs for people, their families, and society at large. Although ASD symptoms vary greatly in character and severity, the disorder 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 care for all Americans with ASD during their lifetimes exceeds $35 billion, and that each person accrues approximately $3 million in costs over his or her lifetime (Ganz, 2007). Families often incur large debts related to medical and educational services not covered through public programs or medical and dental insurance. In addition to financial challenges, ASD can lead to emotional hardships for people and their families throughout life.
What do we need?
Although considerable research has focused on the earliest phase of ASD, through optimized diagnosis and early intervention, far less effort has addressed the adolescent, adult, and older adult phases of life. Minimal guidance exists for individuals and families about the trajectories of ASD across the lifespan. Although the general assumption is that higher functioning children can sometimes excel as adults, and children with more narrowly defined autistic disorder grow up to become adults who are lower functioning, the evidence base for these ideas is lacking. Scientists have not yet identified key prognostic factors or detailed information about how adults with ASD currently function and how they are best supported.
There are a number of areas in which prevalence studies could be improved: continued estimation and evaluation of prevalence in the same population over time; assessment of ASD prevalence in the context of other neurodevelopmental disorders; collection of data beyond core ASD symptoms, including genetic data and co-occurring medical, dental, and behavioral conditions; and expansion of studies across ages.
More research is needed to tailor treatments, interventions, services and supports to the evolving needs of school-age children, adolescents transitioning to adulthood, and adults with autism. There is a need to address co-occurring conditions and developmental changes that coincide with transitions from adolescence to adulthood, to better assess functional outcomes (e.g., school-to-work, independent living, access to healthcare, including oral health care) in older people, and to develop improved quality-of-life measures for adults with ASD that assess dimensions other than intelligence and language skill. There is little information about the number of adults with ASD within the criminal justice system.
Finally, merging and analyzing health care, education, and social services administrative databases that include information about people with ASD will facilitate the study of whether early diagnosis, entry to services, and type of intervention, affects the course of ASD over time. Methods for merging such databases and linking investigator-recruited samples to these merged databases have been used in other populations and in specific locales with success.
Aspirational Goal: Advances in Intervention, Education, and Services will Support and Enable People on the Autism Spectrum to Lead Fulfilling and Productive Lives in the Community
- Longitudinal studies of both people with ASD and their families to follow trajectories that account for clinical, psychosocial and biological heterogeneity.
- The scope and impact of ASD in adults, including how to diagnose ASD in adulthood, their needs during critical life transitions, assessment of functional and legal outcomes, family relationships, and co-occurring health issues.
- Use of existing administrative databases for information relevant to diagnosis, course, interventions and long-term outcomes for ASD.
- Develop and have available to the research community means by which to merge or link databases that allow for tracking the involvement of people in ASD research by 2010. IACC Recommended Budget: $1,300,000 over 2 years.
- Launch at least two studies to assess and characterize variation in adults living with ASD (e.g., social and daily functioning, demographic, medical and legal status) by 2011. IACC Recommended Budget: $5,000,000 over 3 years.
- Conduct at least two clinical trials to test the efficacy and cost-effectiveness of interventions, services and supports to optimize daily functioning (e.g., educational, vocational, recreational, and social experiences) for adolescents, adults, or seniors living with ASD by 2012. IACC Recommended Budget: $8,000,000 over 5 years.
- Conduct a needs assessment to determine how to merge or link administrative and/or surveillance databases that allow for tracking the involvement of people living with ASD in health care, education, and social services by 2009. IACC Recommended Budget: $520,000 over 1 year.
- Develop at least two community-based interventions with individual specificity that improves outcomes, as measured by educational, occupational, and social achievements by 2015. IACC Recommended Budget: $12,900,000 over 5 years.
- Develop and have available to the research community means by which to merge or link administrative databases that allow for tracking the involvement of people living with ASD research in health care, education, and social services by 2018. IACC Recommended Budget and Time Frame: To Be Determined.
- Conduct a cost/benefit analysis on provision of services and interventions over the lifespan with regard to long-term benefits including employment, productivity, and the need for federal/state assistance. IACC Recommended Budget: $2,300,000 over 3 years.