Life with autism revealed
New national study confirms families’ everyday worries
Friday, December 19, 2008
A national study of parents with children on the autism spectrum reveals parents are most concerned about what the future holds for their kids.
The Living With Autism study, which set out to call attention to the challenges of people living with autism, identified independence, quality of life, financial well being and employment as areas of extreme concern for the families, says Susan Rusco, vice president of clinical services at Easter Seals DuPage and the Fox Valley Region.
"A lot of the data really quantifies what we hear on a day-to-day basis and it’s important for us because we can use the data to assist in advocacy for these families," Rusco says.
As a comparison, the study also surveyed families with children without special needs. Rusco says that comparison was important.
"Parents have these concerns for their children, whether they have special needs or not. Everybody looks at independence as something that they hope for their child. I think what makes this study unique is it shows that in the area, for example, of independence 79 percent of parents (with a child with autism) indicate they are either extremely concerned or very concerned about their child being independent in comparison to 28 percent of parents with children that do not have special needs. So it separates out those normal, natural day-to-day concerns that parents have about their children."
Rusco says the results validate parents’ concerns and should help them be stronger advocates for their children to make sure the schools and service providers are focusing on the biggest areas of concern. The results also may help support their health care appeals, she says.
If you go
Easter Seals DuPage and the Fox Valley Region will host the following community events related to the study:
• A free community forum, Easter Seals’ Living with Autism Study Findings & Local Resources Available for Families, at 6:30 p.m., Jan. 20, at its offices, 830 S. Addison Ave., Villa Park.
• Easter Seals Family Resource Expo, 1-5 p.m., March 14, at the Hilton Garden Inn, 4070 East Main St., St. Charles.