Purpose

Purpose of the Study:

This longitudinal study focuses on the development of individuals with an autism spectrum disorder (ASD) through adolescence and adulthood, and how family members adapt over time. In 2000 we began this study of over 400 families of individuals with an ASD who live in Wisconsin or Massachusetts.  This research focuses on the following questions:

  1. How do the symptoms of autism change over the life course and how do these changing symptoms affect the well-being of parents and siblings?
  2. What roles do mothers, fathers, and siblings take in the lives of individuals with autism through adulthood?
  3. What resources (social, familial, psychological) are most important in maintaining parental and sibling well-being?
  4. What community resources are the most important in supporting the individual with an ASD to maintain as independent a life as possible?
  5. What are the major policy issues that need resolution to ensure appropriate services and options for adolescents and adults with an ASD?

Acknowledgements:

This project is supported by a grant from the National Institute on Aging (R01 AG08768) to Marsha Mailick Seltzer at the Waisman Center at the University of Wisconsin-Madison. We are also extremely grateful to the families of the adolescents and adults who have given so generously of their time and shared their lives with us.

Sibling Research:

Over the years, Dr. Orsmond has conducted research with siblings in these families, both in adolescence and adulthood.  A prior study conducted with adolescent siblings in these families was funded by the National Institute on Child Health and Human Development (R03 HD039185).  Information about this research is included in reports below as well as in publications.