Stress? This Is Not Exactly News

Autism care takes biological toll on mothers reads a headline in the Science News, about an ongoing study being done by psychologist Marsha Seltzer of the University of Wisconsin–Madison. Professor Seltzer has been following 406 teens and young adults on the autism spectrum, along with their immediate family members; she reported on her study on June 4 at the annual meeting of the Jean Piaget Society:

Analyses of saliva samples collected from women near the end of the study period showed that those caring for offspring with autism produced unusually low levels of the stress hormone cortisol throughout the day. In mothers caring for teenage or young adult children free of developmental problems, cortisol levels rose sharply throughout the morning and then declined to a level that still remained well above that of mothers tending to kids with autism.

“We’re seeing remarkably low levels of cortisol activation in mothers caring for their children with autism, which may reflect the toll taken by chronic stress and fatigue in their lives,” Seltzer said.

Cortisol is known to increase in response to stress, and is believed to be a response that helps people deal with threats.

More than the language and social difficulties associated with autism, long-standing behavior problems of some diagnosed youngsters — including disobedience and physical aggression — showed a particularly close tie to mothers’ lowered cortisol levels.

As I interpret it: Being the mother of a child on the autism spectrum (who does have some of those "long-standing behavior problems" and who requires 1:1 care all the time), I (and other mothers like me, though I think more than a few fathers would qualify) am exposed/subjected to so much more stress than "ye average mother" that my body has some kind of "biological" response, in the form or producing less cortisol. This is said to be an "adaptive response that makes it possible to handle prolonged stress or a maladaptive response that fosters physical problems down the road."

In other words, because there's more stress more often in my life, I get inured to it.

Well, of course, was my first thought on reading about Professor Seltzer's study. Charlie has always needed more care (he's always been in classrooms with a 1:1 teacher-to-student ratio) and, too, needed much more specialized care. His limited language has meant that it's very hard for "ye average person" to understand what he seeks to communicate (and he has lots to communicate). Just figuring out the basics of school and his daily activities can be stressful (consider the typical IEP meeting......), not to mention the reality of needing to plan for his future---and for his future when Jim and I are gone. (Sure, let's imagine all the things that can happen for an aging autistic adult when both his parents are gone and he has not relatives and he gets........ok, stop right there.)

Professor Seltzner notes that "many researchers shy away from families of these children for fear of being associated with once influential but now discredited claims that bad parenting causes autism"---as a parent, one sometimes hesitates to talk too much about stress and strain, as if doing so implies that one isn't up to the job. As much as life with Charlie can be a bit of a (may as well say it) high-stress experience, I don't wish only to make it sound like that is all there is to it; that life raising a child like Charlie is "so stressful" that it would be better not to have to do it.

Jim and I like being Charlie's parents. We like taking care of him, and for all of those (tune up the violins) reasons: We're better people. We've changed a lot. We've discovered things about ourselves that we thought we could never do. We've learned things about the world we'd never have known, had experiences (of love, joy, sorrow) we never would have had otherwise. Things with Charlie have been unexpectedly extra challenging lately, but we still know that life with Charlie is a good life---extra-stressful, all right, and extra better too.