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| Autism is a family affair |
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State researchers are involved in long-term study of families An often forgotten component of autism is the effect it has on the family. Caring for an autistic child causes severe stresses on families. Behavioral problems are often the biggest struggle family members face with an autistic. Divorce rates are higher for parents of children with autism than the general population. Among the many projects being conducted at the Waisman Center in Madison, researchers are studying how autism affects families. Leading that research is Waisman Center director Marsha Mailick Seltzer. “The predominant pattern, not just in our study but in other studies, that the most stressful period is in the early childhood period,” Seltzer said. “We have a paper under review right now looking at divorce rates. They are higher in families of children with autism than the general population.” But, she adds, in 2000 the Waisman Center, in collaboration with researchers at Boston University, embarked on a 12-year study of 405 people with autism and their families. “In our longitudinal study, 75% of the biological parents are married to each other. So it’s not like divorce is inevitable, by any means,” Seltzer said. “We also have data about the effect of the environment, and that warm parents who are accepting and not critical of their child, that kind of parenting environment has shown to lead in greater reduction of symptoms. So there is a lot parents can do.” Seltzer and her associates recently published a paper on the daily stress on families with adolescents and young adults with autism. “We looked at the relationship between daily stress and the stress hormone cortisol, which showed an atypical pattern of cortisol expression during the day, which is a physiological consequence of living with stress,” she said. Her team is preparing another journal article on the health consequences of mothers living with the stress of autism. “We have, I think, fairly good evidence to show an elevated rate of different types of medical problems with mothers of individuals with autism,” Seltzer said. “We all hear in the general public that stress takes a toll on your health, and that’s what’s happening here. The profile of cortisone expression of the mothers in our study is similar to the profile of cortisone expression in post-traumatic stress disorder.” Yet the Waisman Center researchers have also found that many families learn and grow closer because autism has touched their lives. “The challenges are greater but they are not fundamentally different. The same message we give to parents about loving their children and appreciating their strengths and overcoming their weaknesses are the same messages we give with autism, but it’s much more challenging. Seltzer said. “I think from the outside it’s difficult for people to understand why there are both joys and frustrations, yet when you speak to families, it’s quite clear they love their children,” she said. “Most families love their children, not in spite of their disability but with their disability. There are aspects of autism that bring new knowledge to a family. For instance, it also develops coping capacities with families, a sense of purpose in life. We have heard eloquent commentary from families about how this journey has taken them to places they never would have gone and developed skills they did not have – advocacy abilities, knowledge, connection to the community.” “Even when they’re adults, families continue to be very involved with their children. Those families show high levels of warmth and positivity for their children, even though there are these stresses,” said Leeann Smith, another researcher at the Waisman Center. “It’s a lifelong disability, so we need to be understanding how individuals and their families are coping across the life course. It’s the entire family that is affected and coping together. Many families remain intact and are coping well and seeing improvements in their children over time. The developmental course of Marsha’s work has shown that autism symptoms improve over time, and as they grow into adults, the behavioral problems decrease, and that’s a very hopeful message for families. Autism remains and there still may be challenges for families, but there are improvements.” And that, Seltzer said, is an important message for the service system. “These families need access to services, and not just when the child is young. They need access to services throughout the child’s life because the families are providing support and care, and this extends even after the son or daughter moves out of the home. Families can’t be left alone to do this on their own. The service system has to be in partnership with the families.” |
