Autism poses challenges to family life that are as complex and poorly understood as the disease itself, often leaving parents struggling to find appropriate care for their children.
That's one conclusion from the largest longitudinal study in America on families who have either an adolescent or adult child with autism. The study, involving 427 families from Wisconsin and Massachusetts, is the first of its kind to shed light on how individuals with autism are coping into adulthood, and how parents respond to the lifelong needs of their children.
"Individuals with autism have a very complicated diagnostic profile, and it indicates a need for different services that deal with the complexity of all these symptoms," says Marsha Seltzer, a University of Wisconsin-Madison professor of social work and a principal investigator in the study.
"Right in the middle of all this is the family," Seltzer adds. "Parents often have to serve as brokers for services for their children. They don't have a service system that's tailored for them."
The study, which began in 1998, is a joint effort between UW-Madison researchers Seltzer and Jan Greenberg and a team at Brandeis University led by social policy professor Marty Wyngaarden Krauss. The first round of findings are being presented at the International Association for the Scientific Study of Disability Thursday, Aug. 3, in Seattle.
A growing medical research effort on autism in America is being driven by sharp increases in the number of diagnosed cases. Seltzer says the autism spectrum has become broader in recent years to include milder forms, such as Asperger syndrome or pervasive developmental disorder. But there are growing fears, as yet unproven, that environmental toxins or child vaccinations could be triggering the disease. An estimated 400,000 people on America have autism.
In profiles of the study group, the researchers found that 83 percent of individuals with autism have at least one secondary diagnosis -- a fact that speaks to the difficulty of managing the disorder, Seltzer says. Those added diagnoses included 60 percent with mental retardation, 24 percent with obsessive-compulsive disorder, and 23 percent with seizure disorders.
Other key findings by the group:
-- Symptoms of autism change across the life course. While behavior problems such as repetitive actions or aggressive behavior tend to prevail in adolescence, the behavior problems become less intense in adulthood. As a result, mothers of adult children with autism tend to have fewer problems with depression and anxiety than those with adolescents.
-- About one third of all individuals with autism in the study live outside the home. Those who have been placed outside the parental home are more likely to have greater behavior and social problems than those who live with parents. Just over half of the individuals are in school, 40 percent are in vocational programs or hold jobs in the community, and only 4 percent have no day activity.
-- Many parents in the study felt that the service system for autism does not adequately address the needs of their children, Seltzer says. The manifestation of autism can be quite different from other developmental disabilities, and is often not reflected in the programs. Parents have also been frustrated by doctors' failures to diagnose autism quickly enough, or missing the diagnosis entirely.
Seltzer adds that appropriate care can be in short supply, which has led some families to move to communities that have established programs in schools or treatment facilities.
"These families will do almost anything to get the services their son or daughter needs, and it's not surprising since studies are showing early intervention can ameliorate or reduce the symptoms of autism," Seltzer says.
Adults with autism have literally fallen off the radar screen of researchers until this study, which has about 40 percent of the total sample falling between the ages of 20 to early 50s. "Most families have no idea what to expect when their son or daughter reaches adulthood."
One end goal of the study, funded by the National Institute on Aging, is to identify the types of necessary services for autism that are not being provided, and help inform future policies and funding priorities. The project is administered at the UW-Madison Waisman Center, a national center devoted to research on childhood development and disabilities.
Brian Mattmiller, 608-262-9772; bsmattmi@facstaff.wisc.edu