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Grandparents Play Vital Role for Autistic Children

Many help with child care, treatment decisions and political advocacy, study finds

FRIDAY, April 30 (HealthDay News) -- Children with autism often have more than just their parents in their corner, with a new survey showing that many grandparents also play a key role in the lives of kids with the developmental disorder.

Grandparents are helping with child care and contributing financially to the care of youngsters with autism. In fact, the report found that grandparents are so involved that as many as one in three may have been the first to raise concerns about their grandchild prior to diagnosis.

"The amazing thing is what an incredible asset grandparents are for children with autism and their parents," said Dr. Paul Law, director of the Interactive Autism Network (IAN) at the Kennedy Krieger Institute in Baltimore. "They have resources and time they can offer, but they also have their own needs, and they're impacted by their grandchild's autism, too. We shouldn't ignore them when we think about the impact of autism on society."

At the start of the IAN project, which was designed to partner autism researchers and their families, Law said they got a lot of phone calls from grandparents who felt left out. "Grandparents felt that they had important information to share," he said.

"There is a whole level of burden that isn't being measured. Grandparents are worried sick about the grandchild with autism and for the parent -- their child -- too," said Connie Anderson, the community scientific liaison for IAN. "If you're looking at family stress and financial burdens, leaving out that third generation is leaving out too much."

So, to get a better handle on the role grandparents play in the lives of children with autism, the IAN project -- along with assistance from the AARP and Autism Speaks -- surveyed more than 2,600 grandparents from across the country last year. The grandchildren with autism varied in age from 1 to 44 years old.

And, they learned that many grandparents play a vital role for their grandchildren with autism and their families. For example, the survey found that:

  • Thirty percent of grandparents were the first to suggest that their grandchild might have a problem before the child was diagnosed. Another 49 percent supported others who raised concerns about the child.
  • Fourteen percent of grandparents moved closer so that they could help, and 7 percent combined their households to help out.
  • Nearly three-quarters of grandparents play a role in treatment decisions.
  • Almost one-third of grandparents provided direct child care at least once a week.
  • Half of grandparents take part in fund-raising efforts, such as autism walks. One-third are involved in political advocacy.
  • Just under one-quarter of the grandparents surveyed said they had done without something they wanted so they could help their grandchild financially, and 11 percent reported dipping into their retirement funds to help with their grandchild's needs.

"One of the issues in autism is that there are some proven treatments that may not be covered by insurance. If you know that there's a treatment out there that might help your grandchild, it's difficult not to raid your retirement fund to help pay for it," said Law.

Anderson said that one important thing that often gets overlooked is how much these relationships mean to the grandparents. She said there's a stereotypical idea that kids with autism are cold and unfeeling. "But, children with autism aren't cold most of the time, and some grandparents reported loving the child with autism even more than other grandchildren," said Anderson. "The grandparents really wanted the public to understand the disorder better."

"For many years, what I heard from families was, 'My parents don't accept my child with autism,' " said Cathy Pratt, chair of the board of directors for the Autism Society and director of the Indiana Resource Center for Autism at Indiana University in Bloomington. But, the increasing incidence along with greater awareness of autism has helped bring grandparents back into the family fold, she said.

"Now that people understand more and more, autism has become a family disorder. More and more grandparents are stepping into a supportive role, and aunts and uncles are, too," she said.

More information

Read more about the survey and the role of grandparents in the lives of children with autism from the AARP.

SOURCES: Paul Law, M.D., Ph.D., director, Interactive Autism Network, Kennedy Krieger Institute, Baltimore; Connie Anderson, Ph.D., community scientific liaison, Interactive Autism Network, Kennedy Krieger Institute, Baltimore; Cathy Pratt, Ph.D., chair, board of directors, Autism Society, and director, Indiana Resource Center for Autism, Indiana University, Bloomington; April 2010 The IAN Research Report: Grandparents of Children with Autism Spectrum Disorder

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