Studies on Developmental Disabilities

The School of Social Work's major researchers on developmental disabilities include Marsha Mailick and Jan Greenberg, and explore topics such as autism, Fragile X syndrome, and caregiving for adult children with developmental disabilities or mental illness. See current studies in process below.


Families of Adolescents and Adults with Autism

This is a longitudinal study of 406 families of adolescents and adults with autism. This project will ultimately collect data from families nine times over the 12-year study period. This is the first longitudinal study of adolescents and adults with autism and their families and, as such, is providing basic knowledge about how this disorder unfolds as the individual moves through the life course. This study has incorporated biological measures (i.e., patterns of daily cortisol activity) to elucidate how daily caregiving stress takes a toll on parents’ physiological as well as mental health.  See to read more about this research. This study is funded by the National Institute on Aging (R01 AG08768, 2000–2012).


Families of Individuals with Fragile X

This new study is funded by NICHD through the University of North Carolina and is part of the national network of NIH-funded centers on fragile X syndrome. This study examines the longitudinal course and determinants of the well-being of the biological mothers of adolescents and adults with FXS, the nature of the daily stresses experienced by these mothers, and the family context that is both shaped by and shapes the individual with FXS.  A sample of 150 mothers of adolescents and young adults with (FXS) are being interviewed at three points in time over a 5-year period.  Given the centrality of the family in the life of a person with FXS, the reliance of the service system on the family as the primary source of support, and the stress of lifelong family caregiving, there is an urgent public health and scientific need to understand the range of factors that influence the adaptation of individuals with FXS and the well-being of their families.  The need for such data is particularly pressing for the adolescent and young adult period because this period is associated with a decline in IQ, a slowing rate of adaptive behavior development, an increase in severity of autistic-like behaviors for individuals with FXS, and increased parental contacts with the service-delivery system.


Comparison of Maternal Caregiving Effects: Developmental Disabilities vs. Mental Illness

Since 2002, Professor Mailick and her colleagues have been pursuing the question of the lifelong impacts of caring for a son or daughter using the Wisconsin Longitudinal Study. This research has been supported by the National Institute on Aging (R03 AG15549; R01 AG20558; P01 AG21079; Mailick was PI of the R03 and the R01, and is currently PI of Project 3 in Professor Robert Hauser’s P01).  The WLS is a study of approximately 10,000 persons who graduated from Wisconsin high schools in 1957 and approximately 5,000 of their siblings. Professor Mailick and her colleagues have published papers to elucidate the between-diagnostic group differences in life course attainment and well-being that characterize parents of adults with developmental disabilities and parents of adults with mental illness, versus a comparison group of parents whose adult children are without disabilities. In addition, they have investigated the impact on maternal employment patterns across the life course of parenting a son or daughter with developmental disabilities, and their work in this area has revealed the gendered impacts of long-term family caregiving.  Also, she and her colleagues have used the WLS to reveal the impact on siblings of having a brother or sister with a disability (developmental disability vs. mental illness).


Professor Mailick and colleagues are posing many of these same questions using data from a large-scale national probability sample study, the Midlife in the United States (MIDUS) In particular, MIDUS contains sub-studies incorporating daily diary data and biomarkers with global psychosocial measures on the same sample members.  In the first published study of the stress hormone cortisol in parents of children with disabilities, Professor Mailick elucidated the extent of daily stress experienced by this population and related this to dysregulated patterns of cortisol expression.  This is a highly innovative and new direction for research on individuals with disabilities.

Last edited by karnaky on Thursday, July 10, 2014 | Printer Friendly Version