Families & the Community

Parents of Children With Autism Pessimistic, Survey Says

By Christina A. Samuels — December 16, 2008 3 min read

Parents of children with autism tend to have a more pessimistic outlook about the educational resources available to their children than parents of children without disabilities, according to a new survey.

The parents of children with autism are also more worried about their children’s health, future financial independence, and community support. However, there are differences among families dealing with autism, with the parents of children with Asperger’s syndrome, a less-severe manifestation of the disorder, indicating that they generally had more positive feelings about their children’s futures.

The study was released today by Chicago-based Easter Seals and MassMutual Financial Group, in partnership with the Autism Society of America. MassMutual, based in Springfield, Mass., offers financial and life-planning services to families of people with disabilities.

“The results were not a surprise to us at all,” said Lee Grossman, the president and chief executive officer of the ASA, headquartered in Bethesda, Md. “There are tremendous unmet needs for these people and their families.”

Autism is a developmental disorder characterized by repetitive behavior and impaired social interaction. There are a number of disorders on the autism “spectrum,” including Asperger’s syndrome and “pervasive developmental disorder-not otherwise specified,” which is a diagnosis given to a person who exhibits some, but not all, of the characteristics of autism.

Answers to the online survey were gathered between June 16 and July 17 of this year, and included responses from 1,652 parents of children under the age of 30 with autism and 917 parents of typically developing children. For many of the questions, the survey was able to break down the answers into parents of children with autism, parents of children with Asperger’s, and parents of children with PDD-NOS. No margin of error was available, according to Harris Interactive, which conducted the poll.

Preparation for Life

About 70 percent of parents of children with autism said they were concerned about their child’s education, compared with 36 percent of parents of typically developing children. About 56 percent of parents of typically developing children said they believe their children have “received education to adequately prepare him/her for life,” compared with 19 percent of parents who have children with an autism-spectrum disorder.

However, breaking down the results by diagnostic category showed that parents of children diagnosed with autism were the most affected, with 74 percent saying they were concerned about their child’s education. About 56 percent of families affected by Asperger’s felt that way.

Eighteen percent of families with autism said their children’s education adequately prepared them for life. Parents of children with Asperger’s were slightly more pleased, with 20 percent saying their child’s education left him or her adequately prepared for life.

In the survey, about 50 percent of parents of children with disabilities said their children spent all or most of their time in special education classes as opposed to “mainstream” classes. For children with autism, parents reported that 64 percent were always or mostly in special education classes, compared with 45 percent of children with PDD-NOS and 21 percent of children with Asperger’s.

Schools play a critical role in the lives of children with autism, because for many, it’s the first place that may suggest that their child has a developmental disorder that needs further investigation, said Barbara Gaither, a parent who attended the release of the survey results. School is also the primary provider of services for younger students, she added. Her son Scottie Gaither, 9, has autism and is the Easter Seals’ 2008 National Child Representative.

Though Ms. Gaither said she is happy with Scottie’s school in Columbus, Ga., “I’m still a little worried about middle school and high school.” There tend to be fewer services for older children, she said.

Patricia Wright, the national director for autism services for Easter Seals, said the survey will be used raise awareness of the issues faced by parents of children with autism.

“The one consistent message Easter Seals hears from the families we serve, after the initial apprehension and anxiety of learning their child has autism, is an overwhelming concern about the lifelong supports their child with autism may need to be independent,” she said.

A version of this article appeared in the January 07, 2009 edition of Education Week

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