Grandparents are often the first to suspect that a child may have autism and they play a major role in caring for children once they are diagnosed, according to preliminary findings from what is believed to be a first-of-its-kind survey of grandparents of those on the autism spectrum.

Initial results from the ongoing survey conducted by the Interactive Autism Network, or IAN, paint a revealing picture of life with autism extending far beyond the nuclear family.

Across the board, grandparents report being heavily involved in the daily lives of their grandchildren with autism. Over 36 percent say they take care of their grandchild at least once a week and about 1 in 5 indicate that they provide regular transportation for the child. Moreover, 72 percent of grandparents say they play some role in making treatment decisions for their grandchild.

In many cases, grandparents are sharply adjusting their lifestyle to accommodate a grandchild with autism. Many say they moved so they could be closer to their grandchild, while 1 in 10 report living in the same household.

Meanwhile, about a quarter of grandparents report spending up to $99 a month on their grandchild, with some shelling out over $500 or $1,000 monthly. And an overwhelming majority say they are making sacrifices to help provide for a grandchild with the developmental disorder — including going without something they hoped for, drawing on retirement accounts or borrowing money.

“It’s not so much what they spend, but what they give up,” says Connie Anderson who is heading up the grandparent survey in her role as the community scientific liaison for IAN. “They’re giving up vacation or feeling tied down in a way they didn’t expect in terms of caregiving,”

IAN is a national autism registry that has been collecting data on parents and children with autism since 2007. It boasts the largest collection of autism data in the world, but the survey marks IAN’s first foray into the grandparent sector. The survey, which began collecting responses in October 2009, came about after numerous grandparents inquired about sharing their experiences.

“The grandparents have their own journey that they’re going through,” Anderson says. “Some of them are very resilient and they really celebrate their grandchild with autism and some of them are still going through grief.”

IAN is continuing to collect survey responses for the next couple of weeks from grandparents of biological, adoptive or step-grandchildren with autism. Researchers will then analyze the data collected with hopes of publishing their findings in a scholarly journal.

Most grandparents who took the anonymous survey so far were ages 55 to 74 and were the parents of the child’s mother. They varied in their level of involvement, ranging from those who lived in the same household as their grandchild to those living across the country, though Anderson acknowledges grandparents who are uninvolved or in denial about a child’s diagnosis are unlikely to participate.

In addition to day-to-day involvement with their grandchild, nearly all grandparents said they read or do research to learn about autism and many report participating in fund-raisers or advocating on behalf of their grandchild. Moreover, almost 90 percent say they are closer to their adult child because their grandchild has autism.

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