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Autism Reshaping Grandparent Role, Survey Finds


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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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Comments (6 Responses)

  1. david.wetherow says:

    The survey questions focus almost without exception on ‘burden’: care-giving / expense / sacrifice / going-without / giving-up / transportation / advocacy / worry / stress / denial / conflict / ‘coping’, etc. (follow the link in the article above to [collect survey responses], then [Take the Grandparents of Children with Autism Spectrum Disorder Survey] to get the picture).

    At its most benign, this is an example of a ‘compound question’, or ‘loaded question’ (see the Wikipedia entries on [loaded question]), which limits direct replies to be those that serve the questioner’s agenda.

    Several years ago, I coined the term ‘competitive misery’ to describe the perverse incentives that families and disability advocates get drawn into as they compete for ‘system’ resources. The IAN survey reflects this direction, reinforcing a broad set of negative stereotypes and social roles that are attached to people with autism: burden, object of pity, object of charity, etc.

    Unfortunately, this negative imagery impacts the families themselves. Even if the family doesn’t consciously embrace the ‘burden’ message, the portrayal of the child, his place in the family and community, and the roles played by the family and extended family members are always in a delicate balance.

    What would be the impact if instead of focusing on burden, a survey of grandparents were based on a set of questions that inquired about the role they play (or might play) in bringing other trustworthy connections into the child’s life?

    In identifying and mobilizing the child’s interests and capacities?

    In introducing the child into community places (workplaces, places of learning, community associations) in which the grandparent already has ‘standing’?

    In following the threads of the child’s interest in the direction of companionship, connection and contribution?

    One of the gifts of grandparents – in addition to wisdom and unconditional love – is that their relationship networks and connections to the larger community are likely to be extensive, mature, and still intact. A strategic and thoughtful inquiry could help to identify, strengthen and mobilize that gift.

    David Wetherow
    Parksville, BC

  2. bootsie says:

    I find this topic very relevent as my grandparents are helping me raise my child with autism. It is a very hard decision to make as a parent but it is what is best right now for my child.Grandparents can love a child just as much as a mother can.It takes a village to raise a child with autism you cannot do it alone. thank you.

  3. NumberOneDude says:

    As a Christian, I understand that there is a difference between “burdens” and “crosses.” I was reminded of this difference as I read (and appreciated) David Wetherow’s comments. Extra expenses, sacrifices, worry, stress are all reality factors which inherently have negative connotations. When applied to my wonderful eight-year old grandson, I consider them aspects of the cross that I bear. With love in my heart, intellectual understanding and compassion for her situation however, when applied to his mother, my daughter, they are burdens. Put simply, to spend twelve hundred dollars at one clip (which delays retirement by $1200 ++) is a cross which I bear, thankful that I have twelve hundred dollars. To have his mother not only NOT give him the extra cost supplements (because it is too difficult), and feed him junk food when I am not at home, can only be regarded as a burden.
    Luke’s Grandmother

  4. John says:

    Not my finding we get no help from any family members just the old we don’t want to over stim so we do nothing.

  5. Tammy says:

    I’m a grandparent who’s raising one of our grandchildren, who’s on the spectrum. we’ve been raising him since infancy, he’s now 7. I knew by the age of 2 there was something wrong, and low and behold..BAM! There it was, the diagnoses, that I had never heard of. I didn’t have time to grieve, my husband on the other hand stayed in denial up until a year or so ago(semi denial I should say), it is the most challenging and rewarding experience, but extremely trying one as well, we often don’t sleep, we both work full time, and it’s hard. but he is a blessing, we are learning more on how to help him cope with his anger and we’ve had to take the CPI classes so we could learn how to properly restrain. It has gotten to that point, not every day but at least twice a month. He has been in a unit for a 7 day in patient program. I can say, it’s very different them raising our own children. And unless you have the funds,there are ALOT of services you can’t get. SHAME it is, these children NEED it, and ASD is on the rise.

  6. Danielle Underwood says:

    Wow. I love david.wetherow’s comments. Fantastic ideas, David. Your research idea could lead to so many positive applications and useful teaching tools. I don’t think the topic of the research above is all bad. As in most things, I think it’s important to stay balanced. We don’t want to deny the true challenges parents and grandparents face when it’s so easy for these sacrifices to be invisible to the world around us. I’m a parent of a child on the spectrum who depends heavily on my parents for their support – not financial, but every other kind you can think of – and didn’t realize we were in line with this kind of trend. But David’s idea takes us from a focus on survival mode to “thrive-al” mode, if you will. That’s the direction we need to head. My guess is this is happening, too, unseen and to a lesser extent. David, I suggest you contact IAN with this research suggestion. You’ve obviously thought a great deal about it, and can be an effective mouthpiece for this shift in focus. Well said, sir.

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