Whose Planet Is It Anyway?

Thursday, May 08, 2008

Researchers Discover Happy Autism Parents

Earlier this week, the mainstream media reported on a study that showed higher rates of various neurological conditions, including schizophrenia, in parents of autistic children. The study focused on families in Sweden whose children were born between 1977 and 2003, and the sample included 1,227 autistic children and 30,693 non-autistic children. (Daniels et al., "Parental Psychiatric Disorders Associated with Autism Spectrum Disorders in the Offspring," Pediatrics, May 2008.)

The popular reporting on this study gave the misleading impression that large numbers of parents of autistic children had been diagnosed with some sort of psychiatric disorder. In fact, very few of the parents had any diagnosis at all. Schizophrenia, although it had a statistically significant association, was found in only 0.6% of the mothers and 0.7% of the fathers of autistic children, as compared to 0.2% of the parents in the control group.

There's a confounding historical factor to consider here: Prior to the modern use of DSM and ICD classifications for autism spectrum conditions, many autistic children were misdiagnosed as schizophrenic. In his book Unstrange Minds, Roy Richard Grinker describes the history of autism and child psychiatry, including the confusion between autism and schizophrenia (page 105):

During the 1960s and 1970s the only mention of autism in the American Psychiatric Association guidelines was the adjective "autistic" in the criteria for "Schizophrenia, Childhood Type." In other words, if you were going to use the official categories, a diagnosis of autism was, de facto, a diagnosis of schizophrenia.

Autistic children in Europe also were frequently misdiagnosed as schizophrenic. Because many of the parents in Daniels' study were growing up during this time period, it seems quite probable that some of those who received a schizophrenia diagnosis could in fact have been autistic. In other words, the study merely confirms the obvious: if you are autistic, your children have a higher likelihood of being autistic too. No surprise there.

What may surprise some folks, however, is that the study found very little depression among parents of autistic children. No association was found between depression and being a father of an autistic child. Although mothers of autistic children were more likely to be diagnosed with depression than mothers in the control group, the percentages were still very small (1.8% mothers of autistic children; 0.8% mothers of non-autistic children).

To put it another way: Contrary to the widespread stereotype of the suicidal, emotionally devastated autism parent, these families with autistic children were enjoying their lives just like other families. The fathers were no more likely to be depressed than any other fathers, and more than 98% of the mothers did not suffer from depression. These parents weren't wishing that their child would drown or fantasizing about driving off a bridge with their child. They were going through their everyday lives just like the rest of the world.

Some mainstream publications have been presenting a more reasonable view of the lives of families with autistic children. The Autism Hub's very own Kristina Chew is featured in an article in the May 2008 issue of Working Mother, which interviews mothers of special-needs children and shows a respectful attitude toward people with developmental disabilities. The article quotes a disability consultant, who himself has cerebral palsy, on the importance of parents taking pride in their children's positive attributes and making time to enjoy their lives. Kudos to both Kristina and Working Mother; it's good to see a more realistic and accepting perspective starting to take hold in society.

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  • The reporting on this piece of research bugged the snot out of me. Like you, I thought about past differences in diagnostic categories and wondered why they would find it significant that parents of autistic children had been diagnosed with some neurological difference once upon a time. DUH.

    And, like you, I'm glad to finally see the views of the vast majority of us displayed a little in the media - the view that autistic children are CHILDREN, a joy to their parents and individuals who have a unique set of gifts and struggles.

    In short, being a mother can be depressing, frankly. There is a lot of responsibility, a ton of drudge work, and zero thanks for it. On the contrary, we can pretty much count on the kids blaming us later for anything that goes wrong. If one's kids are drawing social scorn, and developmentally prolonging some exhausting and unpleasant mom chores, that can be depressing. But moms generally aren't in it for the glowing accolades, and a healthy mother sees this as service in love of her child (regardless of their neurological patterns). There are, along with the days when liquor is not optional, great and unbounded joys. That's parenthood!

    I wonder, sometimes, if the parents one sees on the Autizm Squeaks ads are part of the group that sees kids as a status symbol - something that was supposed to be a vicarious extension of themselves and provide endless accomplishments in which the parent could take pride. Geez. I suppose one should worry seriously about the future outcome of those peoples' NT kids, as well.

    By Anonymous Anonymous, at 1:05 PM  

  • Aha! How timely. Thank you so much for this.

    I'd also be interested to know why they picked Sweden, not exactly renowned as a country with a high happiness quotient.


    By Blogger Maddy, at 2:33 PM  

  • Anon: I also think that the AutSqks parents look upon children as a status symbol, and they're feeling cheated that they didn't get the most popular model.

    Maddy: They probably chose Sweden because its national health service registries had more information available than in other countries.

    By Blogger abfh, at 6:06 PM  

  • Agreeing with anon.

    Just had my 7 year-old's IEP on Friday...on paper it looks a lot scarier than it is...because in real life he's happy, he's a huge joy to me and his brother and just about everyone who meets him, much like most sweet 7 year-olds you might encounter.

    I was depressed before I had my sons. Having kids has given me so much happienss and focus that I believe it changed ME neurologically.

    I'm gushing. It is mother's day after all. Thank you for another great entry.

    By Anonymous Anonymous, at 10:39 AM  

  • You've mentioned a respectful attitude being shown toward auties.

    I've been confused about what shows a respectful attitude toward people with developmental disabilities. I have a son with autism. He is six. I try to honour his diversity and I look for the areas he is talented in and help him pursue them. I find him couragous, handsome, with a keen sense of humour and very intelligent. But, he is still unable to talk, or function in many of his small motor skill areas. He can't go out and have any of the independence that he seems to crave.
    Despite the fact that he seems to have alot of leadership ability and talent, he's stuck always relying on someone else.
    And he is becoming more and more frustrated with this part of his life.

    Of course, I've tried to help him overcome these obstacles related to his autism. I've tried to find therapies for him. Yet, I've read people's comments, who have autism and are grown up...as being very angry people saying that by trying to aid our child and "treat" them with therapies, we've commited some crime against humanity and are not accepting people as they are.

    Well, quite frankly, if my child had autism or not and couldn't speak, I'd get him therapy. So, I don't see why parents are come down on for trying to help their kids who do have autism???

    And I get the feeling that the auties are saying "No" that it somehow demeans them to have therapy.

    And that they want to left alone and just be seen as just another diverse type of people. And not a disabled person.
    Like a white person vs a hispanic. Or, a gay person vs. someone who is not. Well, fine. I guess that makes sense to me.

    But, I don't see many of the severely autistic as being able to function without help, or without being fully taken care of. And that I feel is a disability. Not because they are less of a person. But, because, they can't function as they'd like to. Parents want the most functionality for their kids and so they try to help them. Not, necessarily to take the unique and vibrant characteristics of "autism" away. But, so that they can have independence and the lives they want to.

    So we seek therapies. Well, then. What therapies are respectful of the autie themselves?
    I've done a mix of play therapy, visual therapy, auditory integration. I haven't done ABA. Couldn't afford it, if I wanted to. I don't like the way they forced the child to look at them.

    I'd like to introduce my child to some computer guided work so that he can speak via technology. So, is this considered dis-respectful by the autie community? I'm very confused. What are parents "supposed" to act like then when a child has autism? What's respectful to the child? Are we just supposed to sit back and let them drift through life as they will?

    I'll admit that for years I was extremely depressed. It's hard not to know what to do with or for your own child who is entirely different than you are and can't speak, or play, or communicate with you.

    And I was pretty much faced with doing it all on my own...whatever it was!

    We couldn't go on a vacation. Heck, we couldn't go to walmart for years. Because, this triggered a huge sensory issue for him. Screaming, wailing, crying. It's nice to say "well, these families went through life as usual." But, I didn't have that experience. And I can't think that many have. Everything was changed by autism. Mainly, because we just didn't get what to do.

    I think that most parents really try to understand their children from the autism perspective. They don't always know what's best. But, do their best.
    So, please give me some idea, or un-confuse me as what to do? What is respectful of auties, what therapies are ok, are any therapies ok?

    By Blogger autie mom, at 5:51 PM  

  • Autie Mom: I wrote a post last year about objections to early intervention programs. Here's the link:

    What's Wrong with Early Intervention?

    Most activists who complain about therapies are talking about ABA and its emphasis on being socially presentable at the expense of learning more useful skills. Like you, we also object to the way they force children to look at them. We are very much in favor of computer keyboards and other technologies that provide alternatives to speech for those who need them.

    I would define a respectful therapy as one that is intended to help the child to communicate and to build skills, while not suppressing harmless differences or forcing a child to conform to some arbitrary ideal of normality. I agree with everything that you wrote on that subject.

    By Blogger abfh, at 9:03 PM  

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