If you were going to participate in a survey of autism grandparents today, what questions would you like to be asked? What would you like to ask other autism grandparents?
In 2010 the Interactive Autism Network (IAN) published findings from their survey of more than 2,600 autism grandparents from all 50 states.
IAN is careful to explain that the survey sample is not representative of the percentages of autism that exist in various demographics. IAN also explains that the survey findings have not gone through “peer review” or been featured in formal research publications. But the survey does provide information that confirms that we autism grandparents have meaningful roles in the lives of our grandchildren.
Following is information from the survey.
95% of the 2,600+ participants were Caucasian. 78% had educations that included at least some college. 77% were either retired or getting ready to retire. 83% of the participants were grandmothers (rather than grandfathers). And 77% of the participants had grandchildren who were 4-12 years old.
The participants were asked to rate (among 4 levels) how much they worry about their grandchild’s parent(s). Over half (57%) rated at the highest level: “a great deal.” They were also asked how well they (the grandparents) are coping, and 86% said either “fairly well” or “very well.” Only 2% said “not well at all.” [I wonder if today, 10 years later during COVID-19, the percentages for this question would be different.]
Who in your family was the first to notice that something was not “normal” about your grandchild? 30% of the survey participants said that they (the grandparents) were the first to notice.
How close do you live to your grandchild?
57% of the survey participants lived within 24 miles of their grandchildren. Almost 30% lived 100 or miles away.
How involved are you in the decisions about your grandchild’s treatments and therapies?
21% of the survey participants said “a lot.” Nearly 50% said “a little,” and nearly 30% said “none.”
Are you your grandchild’s primary babysitter? [I am.]
Only 17% of the survey participants said they are their grandchild’s main babysitter.
Do you spend money to help your grandchild? How much?
92% said they spend less than $100 per month on their grandchildren. And nearly half of those said they spend $0. [The survey participants’ answers to this question surprised me. I thought the financial contributions would have been greater. I wonder what the numbers are for the summer of 2020?]
IAN’s report included several of the narrative passages that the participants included. Some focused on significant challenges:
“My grandson is nine and is severely challenged by his autism,” one weary grandmother told us. “We are the main providers of respite for him, and as he’s gotten older the care has become more difficult. I compare this to getting hit by a train and continually dealing with trying to survive it. The biggest issues concerning the care are: He's not potty trained, he's non-verbal, and very physical. When he's upset, he'll have meltdowns where he'll bite, scratch, and pinch. Perhaps the biggest challenge is the continual need to keep him safe... He has no sense of danger at all, and requires constant watching.”
And others discussed good things:
“The relationship that I have with my grandson is one of my greatest joys. We have a special relationship… My heart nearly burst when he began saying my grandparent name, Baba. If I go for a visit, and he comes running and screaming 'Baba' with a smile as big as Texas, I feel so elated. I can't imagine my life without him. I love all my grandchildren, but he holds a special place in my heart.”
The survey provided a wonderfully heartening finding: nearly 90% of the participants said that autism has brought them and their adult child closer together.
It is certain that having a grandchild with autism can present challenges for our relationships with our adult children, but it is encouraging to know that those challenges produced closer relationships for the vast majority of the participants in this survey.
The survey report concludes with the following:
Grandparents participating in the IAN Grandparents of Children with ASD Survey have taught us so much, bringing new insights to researchers, professionals who work with people on the spectrum, and the entire autism community. We have learned what a significant role they play in identifying ASD in their grandchildren, and what tremendous contributions they make in terms of care giving, finances, moral support, and advocacy. They have shared their worries for their grandchildren on the autism spectrum, and for the children’s parents, their adult sons and daughters. They have beautifully described the contradictions inherent to ASD: how the diagnosis and its aftermath can be like “being hit by a train,” yet relationships with these grandchildren can be some of the most joyful they have ever known. In brief, anyone investigating ASD and its impact on families leaves the grandparent generation out at their peril.