More Stress on Stress

Just last month I posted on an ongoing study about stress in the mothers of autistic children being done by researchers at the University of Wisconsin-Madison under psychologist Marshal Seltzner. Another study on stress in mothers of autistic children (we have more stress according to the study---findings I am not exactly surprised at) has been published in the most recent issue of the journal Autism.

Researchers at the University of Washington under Annette Estes, associate director of the University of Washington Autism Center, had 73 mothers fill out detailed surveys which measured: parenting stress, psychological distress, problem behaviors and adaptive functioning level (daily living skills). 51 of the children were on the autism spectrum and 22 had developmental delays. Most of the children were under 3 1/2 years old, male, and white.

Estes (in a Science Daily post) noted that it was "psychological stress" and not psychiatric disorders that was tested and I'm glad for that distinction. While it's possible that women with a history of psychiatric disorders might be more prone to stress, it would be inaccurate, and potentially misleading, to make any kind of connection between mothers of autistic children. Regretfully, such a connection was quite readily made by the likes of Bruno Bettelheim and others in a previous generation, and this is certainly one reason that there's more than some wariness in approaching the topic of stress in parents (and mothers in particular) in autistic children.

Back to the University of Washington study, which suggests that parenting an autistic child is more stressful than parenting than a child who is not disabled: I suspect that most parents, and most mothers, of children on all parts of the spectrum, would answer in the affirmative. My son has been doing well but that's because my husband Jim and I have put 100%+ of our energy, thinking power, financial resources, and I don't know what else into him. Charlie's 12 and looks older than he is because of his height and build. But his needs are not those of a "typical" 12-year-old: He needs someone with him all the time; at school, he needs one-to-one teaching. He's able to do more and more, understands more and more, but will need support and care from us and others throughout his life.

That's taking the big picture. One other thing about life with Charlie is that we sweat the small stuff more than we might.

I've not teaching summer school and don't have as many administrative duties as I used to at my job, and have been home more. Thursday I had to go into work early to help register the incoming new students. I took an early train and, though I was trying to sneak around to get ready to go, Charlie woke up. And, as Jim told me, stayed up, running around excitedly and then frenetically. Jim attempted a ride in the car and Charlie ate half the contents of his lunchbox as they drove around and told Jim "no school."

I got the call about all of this just as I was standing up to deboard a train packed with commuters in Hoboken. As I relayed instructions about making an impromptu visual schedule to get Charlie through the time till 8.40am when the bus was due to appear, many of those commuters did the averted gaze thing or stepped a few inches back. My phone lost the connection as I stepped into the entryway to get off the train.

Even though Jim called to tell me Charlie had gotten on the bus fine, I spent the rest of the day feeling uneasy,. Some pervasive worry just took root, all through riding the PATH train, walking down Kennedy Boulevard, sitting down at a computer terminal in the Roy Irving Theater at my college, registering new students for fall semester classes, walking back down Kennedy Boulevard and taking the PATH train and then NJ Transit again, greeting Jim and Charlie at home and heading about Charlie's day at school and watching YouTube videos with Charlie, eating dinner at a diner, seeing Jim and Charlie off on their second bike ride. Only after they'd left on their bikes and I had turned on some music did I realize, I didn't feel stressed.

Charlie's our only child so I don't know a "typical" child would have exactly responded to this change in the routine this morning. Maybe he would have just gotten upset for a brief period and been fine, end of story. I don't think that I would have spent the whole day with a gnawing feeling of worry---small things can set off "fireworks" for Charlie.

As a friend pointed out on a previous post on stress in mothers, life is even more stressful for my son, Charlie. Charlie has far fewer ways of alleviating stress---indeed, some part of his education is about teaching him ways to self-calm and communicate his often overweening anxiety---and I've got plenty of ways to lessen mine, from talking to Jim and family and friends to writing (this post included).