Whose Planet Is It Anyway?

Wednesday, May 14, 2008

Structural Fatigue

In response to my discussion of the recently published study of neurological conditions such as schizophrenia and depression in parents of autistic children, Joey's Mom wrote a post pointing out—quite correctly—that there are many parents of special needs children who feel exhausted and overwhelmed and who may be suffering from subclinical depression, even if they do not have a diagnosis. She wrote:

Exhaustion lurks around every corner, haunts every house, lingers in the corners and hangs in the air; exhaustion on a level I do not see in homes without special needs children, exhaustion I never see etched on the faces of mothers with no disabled children. In other homes, in other parents, there is a laugh-it-off: jokes about having drinks are lighter-hearted, comments about bad days are less edged, giggles about sleep deprivation are followed eventually by a nap or a day at the spa.

What is even more interesting is that we seem less permitted to be tired. We have to attend more meetings, talk with more teachers, run around to more therapies, and meet more needs. Many of us can't just tell the kids to go out and play while we fix dinner. Every moment is a teaching moment, every chore a lesson in life skills. Many parents doubtless think nothing of having their child dress in the morning, come down to breakfast, eat their food, put on their coat and backpack, and get on the bus. For many families I know, each step of that process must be carefully choreographed, supervised, assisted, broken into smaller steps and specifically taught.

These concerns are indeed very real for many families, and I am not trying to downplay them or to find fault with the parents' way of thinking. In my view, however, these exhausting family schedules are not an inevitable part of raising children with developmental differences. They are a consequence of the hectic pace of modern life in general, of the failure of our schools and communities to understand and accommodate our children's differences, and of rapid changes in cultural expectations. They are structural problems in our society.

A few centuries ago, a family raising a child with developmental differences would not have been struggling with any of these issues. Instead of meeting with teachers and scheduling therapy sessions, the parents would have taught the child how to do chores on the farm, just like the other children in the village. It wouldn't have mattered much if he took longer to learn, and the parents wouldn't have felt that they had to spend every moment teaching life skills. When the child played outside, he would have been under the watchful eyes of older siblings and cousins. There would have been no carefully choreographed early-morning rituals; if the child didn't dress himself properly before going out to work in the fields, a parent or sibling might perhaps have helped, but it wouldn't have been a major concern.

Of course, life was far from perfect for autistic children in those days. Many of them went through their lives illiterate and with only minimal ability to communicate. Now that our society has more understanding of developmental differences and is in the process of developing useful therapies and technologies, we have the potential to do a much better job of educating the autistic population. Still, I think we've swung too far from one extreme to the other. The villagers of the past accepted autistic children as part of the community while knowing very little about their differences and putting very little effort into educating them. Modern society has the attitude that autistic children can't be part of the community unless all of their differences are extensively catalogued and then, at great expense, thoroughly squashed. Parents are made to feel guilty about relaxing for even a moment, lest they miss some critical teaching opportunity and their child suffer a lifetime of social exclusion as a result.

We can and must find a middle ground. Autistic children, and others with developmental differences, can indeed receive many benefits from modern therapies and technologies, but the goal shouldn't be to force them to fit into a narrowly defined concept of normality; rather, our society needs to learn how to appreciate the diversity of human thought. Parents shouldn't be expected to treat every moment in their children's days as a teaching moment, frantically racing against the clock to mold their children into acceptable future job applicants in an intolerant culture where most hiring managers might as well have a large sign in their offices declaring that the abnormal need not apply.

Just think what we could accomplish if a fraction of that energy went into changing the world instead.

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  • I completely agree.

    Another difficulty that is added to the mix is the fact that, because of the pace of change, we do not have any idea of what sort of life our (typical or exceptional) kids will lead when they grow up. We can't say, they'll work on the farm, or in the mine, or the mill, in the family business. So we are trying to rise them to be flexible generalists. It strikes me that, of all the things that autistic people are good at, being a flexible generalist would be near the bottom of the list for many.

    By Blogger VAB, at 6:39 PM  

  • However, it was exactly in past cultures of the type you describe where different minds were found so monstrous that changeling "hypotheses" were proposed.

    By Blogger Maya M, at 1:19 AM  

  • VAB: That's a very good point about the unpredictability of modern life. In olden times, an autistic boy who had a particular talent or interest might have been apprenticed to a master craftsman, but today's parents have no way of knowing what sort of work will lead to a secure job.

    Maya: Yes, and autistic women sometimes were victims of witch hunts too, but if you read older literature you'll find many references to people with autistic traits who were accepted as part of society. Jane Austen, for example, describes many characters who would today be considered autistic.

    By Blogger abfh, at 8:41 AM  

  • Sorry, I have to agree with Maya. Yes, many people with autistic traits might have been grudgingly accepted, but if a person could not work on the farm or in the factories or were simply never given the chance--then they were even more shit out of luck than they are today. There were no McDonald's back then, no grocery stores with shelves to stock, no Walmart's to pay you to say "Hi." It's still relatively recently that the disability gulag has been swallowing fewer and fewer people, and as you go back into the past, things simply do not get more progressive. The admittedly more hectic pace of modern life notwithstanding, one cannot take the example of a few eccentrics lucky enough to have high IQ and strong bodies as evidence of some disability golden age. Concepts such as atavism and eugenics came about during the time period you're talking about. It is more accurate to say that what barriers modern life brings with it simply replace the barriers of yesteryear. Physically disabled people are obvious, but they aren't the only ones. The removal of mentally unusual people from their families, when they are not lucky enough to be able to pass for mere eccentrics, is a long-standing tradition. Someone like me probably could have worked on a farm, but I don't have the coordination to work in a mill without losing a limb very quickly. My sister would have been in an asylum, assuming the hole in her heart didn't kill her at infancy. Her capabilities never even would have developed, let alone been given a chance to be explored. Conservatives can wax teary-eyed about those wonderful by-gone days before labor laws and public education, but the answer to our troubles is to look ahead. We will gain nothing by romanticizing the days when eugenics walked the streets with its head held high and its name unwhispered. Nor will the creation of a false past do us any favors; nay, it will lose our argument for us. We must see our rotten wretched past for what it was, and tell people why it was wrong, and show them why it is wrong to do what they are doing now.

    By Anonymous Anonymous, at 3:18 AM  

  • I read over my post, and it seems I may have implied more of a romantic attitude than you were expressing. I apologize for this. I was reacting more to an attitude I see on forums and places, where people talk about how they would not have been treated so badly "back then." I'm very sensitive to this attitude, and I may have overreacted. I stand by my statements, however. The lucky few who could pass as eccentrics do not strike me as all that significant compared to the many whose life was far more of a dirge than it would have been today.

    By Anonymous Anonymous, at 3:33 AM  

  • Farson: You are quite correct that asylums, eugenics, and other such horrors were commonly accepted a century ago. I was describing life in pre-industrial villages, before asylums existed, and my post was mainly about the parents' more relaxed attitudes, rather than about the quality of the children's lives.

    Growing up in a medieval village certainly wouldn't be my idea of a wonderful life, either. Children had no protection whatsoever against abuse, and if the parents had a bad harvest, they might end up selling one or more of their children into slavery so that they wouldn't starve over the winter.

    By Blogger abfh, at 9:33 AM  

  • Yeah, I interpreted this post not as a paean to some long-lost "golden age" for autistics, but a comment on how the modern age has brought with it a new set of attitudinal problems and prejudices even in the face of some actual technological and social progress.

    IMO, what's problematic now is that a lot of people just take it for granted that "things are better now" than they used to be years ago, while others take it for granted that "things were better back in the 50s or in pre-industrial times". Idealizing any era (including the present or the future!) is a bad idea, and doing so seems to me a symptom of lazy thinking. Real progress happens when people can look at the good and the bad of their situation, while looking to the past primarily for lessons and to the future primarily for inspiration.

    By Blogger Anne Corwin, at 7:42 PM  

  • Also, to me, looking at the past for lessons/ideas sort of reminds me of looking at how other cultures do things -- that is, it's a way to perhaps get a sense of what things in your own time and culture are potentially malleable toward positive ends rather than "set in stone". A person who knows nothing of history or of cultures other than his/her own will likely grow up thinking that the way things are where and when s/he exists represents the only way things might potentially be done. And that simply isn't true.

    By Blogger Anne Corwin, at 7:45 PM  

  • Anne: Yes, exactly. People often aren't aware that their experiences are based largely on their particular cultural environment, rather than being universal and inevitable experiences of all people in similar situations.

    By Blogger abfh, at 4:02 PM  

  • Step One: Decide that the ways of being and doing things of a category of people is bad. Convince parents that they are irresponsible if they don't...

    Step Two: Spend a lot of time and money trying to change this. Eventually, they are going to...

    Step Three: Complain bitterly about how expensive and frustrating step two is, when step one was the problem the whole time.

    That's what I took as the main point of this post. And I thought it was very well made, indeed.

    By Blogger Bev, at 1:49 AM  

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