Saturday, July 18, 2009

The Research: Water is Wet

According to a study by the University of Washington:

Mothers of children with autism have higher parental stress, psychological distress

Researchers at the University of Washington's Autism Center asked mothers about their experiences and found that moms of children with autism had higher levels of parenting-related stress and psychological distress than mothers of children with developmental delay. Children's problem behavior was associated with increases in both parenting-related stress and distress in both groups, but this relationship was stronger in mothers of children with autism. (Click here to read the UW press release).

My post's title refers to the press release's headline more than the study. It was an unfortunate choice of words. Many picked up on the obviousness of the statement, including the New York Times. It shouldn't be news that mothers of children with autism have more stress than mothers of children who are neurotypical (though, I am sure there are cases where that is absolutely not true). I think it's safe to say, however, that the degree of increase of stress is not widely known.

Another comment I've read in regard to the study has been, "What about fathers' stress?" Again, the release's shortcomings come into play. They probably should have at least addressed the topic. And, again, the New York Times picked up on it. They asked Annette Estes, the director of UW's Autism Center directly about the absence of any mention about fathers. According to Ms. Estes:

"We did try to study dads. When we started this study, the dads were not as likely to fill out the questionnaires. (And in other news, the sky is blue).

Ms. Estes went to say that although they didn't have enough of sample from the fathers; the dads were "really similar to the moms".

This absence of a sample from fathers is at the core of why I wrote Kicking and Screaming. Fathers don't like to talk about autism. I know I didn't - at least, not until I could discuss it with someone who "got it" (e.g. a fellow member of the club). Frankly, I still don't. Don't let the blog and the book fool you. As a friend once commented, "I bet this is an easier topic to read and write than to say and hear". This silence should be fertile ground for researchers like UW's Autism Center and others - if they could get any fathers to participate.

The key observation of the UW study was that the behavior problems associated with autism were the cause of increase of parental-related stress in mothers of autistic children than mothers of children with development delays. As a result, the researchers now believe that when choosing early intervention programs, those that address behavior problems should be a priority.

Bingo. I agree completely. Joy and I and several other parents we know have come to the same conclusion. We all wish we had addressed the social skills much earlier in the process.

Another conclusion of the study, one that the researchers found counterintuitive, is that no link was found "between a child's decreased daily living skills (such as dressing or toilet training) and increased parental stress and psychological stress".

I agree. I find that counterintuitive as well. I imagine there might be a difference between what is "hard" and what is "stressful". With behavior problems, fear is always lurking around just below the surface. A telephone call during the school day is a source of trepidation. Interactions with other children can be a roll of the dice. A simple request like, "let's go out to eat", will very likely be met with a tantrum. If you enter your child into a situation that you're not sure he or she can handle, you're on guard for that outburst to occur. You know if it does, everyone around you will be focused on you and your child and, as most of us know, they are usually not sympathetic eyes. Just judging ones. This doesn't even take into account the number of situations you avoid with the child because you are certain they cannot handle it.

I have one concern about the study. I'm not a fan of "Who Has it Harder?" contests. As hard as I think our situation with Robbie has been, I get no comfort from knowing "at least he's not (some awful thing worse than high functioning autism)". The hardest challenge any parent faces is their hardest challenge. I doubt any parent engaged in a parental struggle feels better by the knowledge, "at least our child's not autistic". Nonetheless, the lack of knowledge and understanding about autism creates a strong case for the need to educate the public about the issues and challenges everyone dealing with it has to face. It just doesn't have to occur at the expense of anyone else.

UW's study is an interesting one that probably created as many questions as it answered.

Welcome to Autism World.

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