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Interagency Autism Coordinating Committee (IACC)
Autism Research Database
Office of Autism Research Coordination (OARC)
 
Project Element Element Description

Project Title

Project Title

ASD in Mid-Adulthood: A 40 Year Follow-Up of Individuals Served by the TEACCH Autism Program

Principal Investigator

Principal Investigator

Klinger, Laura

Description

Description

As the numbers of children diagnosed with ASD increase, there is a growing concern that the resulting increase in adults diagnosed with ASD will overwhelm current educational, employment, and residential support programs. Indeed, the emerging literature on transition to adulthood presents a bleak prognosis. However, little is known about the long-term outcome and needs of middle age and older adults with ASD. It is simply unknown whether the quality of life improves, declines, or plateaus for individuals with ASD who are past the transition to adulthood. Additionally, little is known about how symptomatology changes from childhood to mid-adulthood and what factors predict adult outcome. This is a relatively unchartered research field. The purpose of this project is to conduct a longitudinal study examining adult outcomes in middle-aged adults with ASD who were diagnosed during childhood by the University of North Carolina TEACCH Autism Program. This research capitalizes on a unique database of over 7,000 children with ASD served between 1965 and 2000 who are now adults. This database provides an opportunity to: 1) conduct a large scale caregiver survey describing the quality of life (education, employment, social opportunities, independent living skills) and service use and needs of middle-aged adults with ASD and examine the relation between childhood factors and adult outcomes; 2) conduct an in-person assessment of a subgroup of surveyed individuals to examine developmental trajectories of symptomatology, adaptive behavior, and intellectual ability from childhood through adolescence and into mid-adulthood; and 3) provide a platform for a longitudinal study following a well-characterized group of adults with ASD into older adulthood. The data generated from this research have the potential to make a significant impact on legislative and community service agency decisions that will contribute to improved quality of life for adults with ASD.

Funder

Funder

Autism Speaks

Fiscal Year Funding

Fiscal Year Funding

149997

Current Award Period

Current Award Period

2013-2016

Strategic Plan Question

Strategic Plan Question

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

Strategic Plan Objective

Strategic Plan Objective

Green dot: Objective has greater than or equal to the recommended funding. 6LB. 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.

Project Link

Project Link

ASD in Mid-Adulthood: A 40 Year Follow-Up of Individuals Served by the TEACCH Autism Program (External web link)

Institution

Institution

University of North Carolina

State/Country

State/Country

North Carolina

Project Number

Project Number

8316

Federal or Private?

Federal or Private?

Private

Received ARRA Funding?

Received ARRA Funding?

No

History/Related Projects

History/Related Projects

ASD in Mid-Adulthood: A 40 Year Follow-Up of Individuals Served by the TEACCH Autism Program | 149994 | 2014 | 8316
ASD in Mid-Adulthood: A 40 Year Follow-Up of Individuals Served by the TEACCH Autism Program | 149995 | 2013 | 8316

 
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