Family School Autism Project

A major longitudinal study of parent involvement in educational programs for children with autism.

Context

Over the past decade, a dramatic increase has occurred in the number of individuals identified with autism, with the U.S. Department of Education reporting an astonishing six-fold increase in the number of children receiving special education services in the public schools. This unprecedented increase has had a major impact on families, school systems, and state agencies as they struggle to cope with the difficulties of educating and providing care for this rapidly expanding group of moderately to severely impaired children.

The Project

In an attempt to help school systems meet this challenge, in late 2001, Dr. Paul Benson, associate professor of sociology and senior research associate at CSDE, and Dr. Gary Siperstein were awarded an initial grant from the U.S. Department of Education to begin a major longitudinal study of parent involvement in educational programs for children with autism. The rationale for the project was predicated on the fact that while educators view educational involvement as an essential component of programs for autistic children, such involvement is often a very difficult to achieve and sustain due to the heavy care-giving demands placed on parents. Thus, educators are faced with a dilemma of how to actively engage parents in the education of their children without increasing family stress and burden. As part of the initial grant, data was collected over a four-year period from 107 families and 150 teachers drawn from thirty-six school systems or multi-system special education programs located in the Greater Boston area.

Results

Study findings to date present an intriguing portrait of the project’s cohort of children and families, and of the variety of ways that parents participate in the education of their children with autism. For example, over the course of the grant period, substantial improvement in functioning was observed in approximately one-third of the autistic children participating in the project. Improvement was most likely to be observed in children whose parents were most involved in actively promoting their child’s learning and development at home during non-school hours. The extent of assistance provided to families, by teachers, home trainers, and other school personnel were found to play a critical role in promoting educational involvement by parents.

Looking Ahead

In late 2004, Drs. Benson and Siperstein were awarded a new five-year grant by the U.S. Department of Education ($900,000) to continue and expand their longitudinal study of children with autism and their families. During the project’s next phase, CSDE staff will continue to examine how parents participate in their child’s education. More specifically, they will examine child social and academic development during the elementary and middle school years, how families adjust to changes in their children, and how the children’s educational and therapeutic services change as they move through school. An additional group of children with autism (including children identified with autism after age five) and their families will be added to the existing study cohort and also followed for the five-year period of the new grant.

For more information, contact Dr. Paul Benson.