Monday, June 7, 2010

Reading Autism Articles Like It's 1979

OK, so here is where we differ today versus 1979 per that ancient autism article in Rolling Stone:

There seemed to be no concept of the autism spectrum that we speak of today. When a specific symptom of autism is discussed, it sounds as if every autistic child is equally affected, such as this: “For the autistic, there seems to be little difference between ‘father’ and ‘light bulb’.” The author is referring to the emotional detachment of some with autism, but this is not true of Audrey (and many others with autism), who is very attached to and affectionate with her parents and others that she is close with. She knows perfectly well that there is a difference between her father and a light bulb...although Mommy remains unconvinced and really only considers one of them to be a consistently useful household fixture.

The author talks about “hyperskills”, some of which are familiar such as uncanny language, music, and memory skills, but also gross motor skills: “Autistic toddlers can often throw balls consistently within an inch of someone’s hand across a large room.” Huh? Audrey can barely throw a ball consistently within one inch of herself. An expert explains such skills with this pearl, “Some people can concentrate, others can’t. Then there are those who concentrate far too well.” I don't think that you would hear any "expert" today accuse autistic children of concentrating too well.

It appears that mostly the more severely impacted children were being diagnosed at that time: "Joey lives in an institution, as do many autistic children whose parents have given up." He also mentions extreme self-injurious behaviors like children who bite off their own fingers and scream until they blow out their vocal chords. We've come very far on this front. Today it is mostly the parents who are being institutionalized, biting off digits, and shredding their vocal chords.

The author observed behavioral therapy using the Lovaas method. They had only just recently stopped using electric shocks as a negative reinforcer, but were still using the "aversive no". Meaning that a therapist screamed "NO!" in a child's face every time they didn't elicit the correct response/behavior. To justify this method, the experts said "Have you ever seen a child pull out his own jugular vein?" and pointed out the much worse treatment they would get in an institution. Such rationalizations wouldn't fly today.

The statistics included in the story are interesting. I've heard it many times quoted that the prevalence of autism has grown from 1 in 10,000 in the 1980's to the 1 in 110 figure today. But this author says 1 in 2,000 were autistic in 1979. No source is given for that figure. He also says that at that time there were only 50 private autism programs in the country and just 150 public school classrooms dedicated to autistic students. For that reason alone I'm so happy to be living in the 21st century.

I'll end with a quote from the article with which I will definitely not disagree:

"The children often share a haunting, numinous beauty, as if the intrusion of coherent reality is the thing that ages and distorts the rest of us."

5 comments:

  1. I'm sure you have read as many articles as I have,about all the adults all across the spectrum,who have been diagnosed in the last ten or fifteen years.There are people in institutions thought to have been merely "retarded",who have been rediagnosed as autistic.I read about one woman in her 80s who this was the case with.There have been parents diagnosed with Asperger's,after their children have been diagnosed with more severe forms of autism.There are those,like my sister and I who had been diagnosed with a long laundry list of psychiatric,and developmental problems,who have been rediagnosed as being autistic.In my case,after a ten hour plus evaluation by the head of developmental psychology at a large teaching hospital.

    Getting an autism diagnosis has allowed me to take things to the next level,and finally get tested and diagnosed for all of the serious medical problems I had all of my life,which nobody could find a cause for,but are proving to be metabolic and chromosmal.When I was first diagnosed,they wanted to put me in a home,but then I found out about my metabolic disease. Treat the metabolic disease,and the autism improves.

    I frankly don't really see how some of the people who claim to have been diagnosed back in the day,were,because the seem so high functioning.Johnathan Mitchell,as much as I like him,is a good example.

    I could never catch a ball.I was not fully toilet trained until I was nine,or tie my shoes until I was twelve yadda yadda yadda.

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  2. Roger, you bring up an interesting point. Most of the "old-timer" autistics that we know of are pretty high-functioning. But the kids in this Rolling Stone story were not. At the time that I dug out this article, I thought about writing the magazine and suggesting to them that they do a followup on the children in the story who would now be pushing 40. I'd love to know how they progressed and where they are today. I never did write the letter, but you've inspired me to put it back on my to-do list.

    P.S.: You may be the only person who ever read this post!

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  3. *raises hand* I'm reading it... But I like to start at the beginning and work my way through new blogs. Your daughter is really adorable, but I admire your strength in raising her.

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  4. Hello Lynn, I realize this is an extremely old post, but I found your blog after seeing (in a March 2014 issue of Rolling Stone) a "this day in history" cover with the Autism story you are referencing. It grabbed my attention because (1) my 5 year old son is on the spectrum and (2) the time of that article, 1979, made me curious as to the perception of Autism being a "new" problem at that time...

    At any rate, I agree with your perspective - that it's better to be living now with this problem, in a time of more understanding. My own perception of Autism is that we, as humans, are basically all on the spectrum. That spectrum being, essentially, a combination of emotional/intelligance/physical. We are all different. I just hope I can find a way for my son to make a living and learn to interact with others. It's pretty much the same thing I wish for my other kids, it's just he has fewer opportunities.

    PS - I'm posting as anonymous only because I don't have any of the accounts in your "comment as" box... Regards, Carl

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    1. Hi Carl,
      So funny because I'm still a Rolling Stone subscriber and I saw that Ted Nugent cover in the recent "flashback" section. That article was the first I'd ever heard of autism...little did I know...
      I wish you and your son all the best! Thanks for reading and commenting...can't believe it's been almost 4 years since I wrote this!
      Lynn

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