Understanding Autism in Adulthood Research Study

The research team at the UNC TEACCH® Autism Program is excited to find out how the clients who came to TEACCH in the 1960’s, 70’s, 80’s, and 90’s are doing as adults! We are looking for middle-aged adults who were diagnosed with autism, Asperger’s syndrome, or pervasive developmental disorder during childhood by the UNC TEACCH Autism Program between 1965 and 2000.

Professionals know a lot about children and adolescents with Autism Spectrum Disorder (ASD; including autism, Asperger’s syndrome, and pervasive developmental disorder), but very little research reveals what happens to people with ASD as they age. For example, little is known about the long-term outcome and needs of middle age and older adults with ASD. We simply don’t know whether the quality of life improves, declines, or plateaus for individuals with ASD who are past the transition to adulthood years.  Additionally, little is known about how symptoms change from childhood to mid-adulthood and what factors predict adult outcome.

One of our missions at TEACCH is to provide services to a growing population of adults with ASD. In order to achieve this goal, it will be necessary to know the challenges faced by adults with ASD and the services and supports that they need! The goal of this study is to survey 400 of these adults and their caregivers.  We hope the data generated from this research study can help to inform legislative and community service agency decisions that affect adults with ASD.

There are two phases of this research project:

    Phase 1: 400 adults with ASD and/or their caregivers will complete a survey about education, employment, and social opportunities and what current services are needed. The survey can be completed online or a copy can be sent to you. It will take approximately 1 to 2 hours to complete these surveys and participants will receive $20 as a thank you for participation.
    Phase 2: 100 adults with ASD who participated in Phase 1 will complete several in-person activities. The research team is interested in learning how ASD symptoms, language ability, and independent living skills have changed from childhood into adulthood. These in-person activities will take approximately 2 to 3 hours to complete and participants will receive $75 as a thank you for participation in these activities.

We hope the information obtained from this research study will provide a better understanding of the current challenges faced by adults with ASD and will also help determine what TEACCH can do to better assist adults!

This study is currently underway and
the research team would love to hear from you!

To learn more about this research study, please contact the Project Coordinator at: TEACCH_Research@med.unc.edu or 919-962-3303.