For 12 years, Dr. Orsmond collaborated with Dr. Marsha Mailick at the University of Wisconsin-Madison to conduct a longitudinal study of families of adolescents with adults with autism spectrum disorder (ASD). Prior to 2000, there was virtually no systematic research about families of adolescents and adults with an ASD, about the transition from adolescence to adulthood, about the experiences of individuals with an ASD, or the impact on the family. Thus, the primary purpose of our study was to examine the lives of adolescents and adults with an ASD, the impact on the family, and the challenges of coping with a family member with this diagnosis.
In 2000 we began our longitudinal study of over 400 families of people with an autism spectrum disorder who live in Wisconsin or Massachusetts. In addition to examining the bi-directional effects of the symptoms of the individuals with autism and the well-being of their family members, our goals were to describe the quality of life of these families, assess the extent to which their service needs are adequately met, and to examine the plans they made and put into place for the future.