The Other I

March 25, 2011

At home with Asperger’s syndrome

Filed under: Depression and Autism — theotheri @ 3:47 pm

When I was a graduate student, autism was seen as a form of childhood schizophrenia.  The category didn’t seem very satisfactory, but at the time, no one had come up with anything better.

We know now that autism and schizophrenia are quite different syndromes, and our understanding of autism is much greater than it used to be.  It is not a form of mental illness, but in essence is a learning disability in relation to social interaction.  It exists across a spectrum of very severe to more moderate forms called Asperger’s syndrome, occurs more often among males than females, and is unrelated to intelligence.  There are brilliant scientists and musicians who are known to suffer from autism as well as people of more average abilities.

One of the great benefits of actually having a recognized category called Asperger’s syndrome or autism is that it helps both the individual and the family deal with it realistically.

Asperger’s syndrome, especially, often looks to the uninitiated like egocetrism and selfish insensitivity.  With the best will in the world, parents, teachers, and family members can demand what seems to be simple normal courtesy from someone who, as a matter of fact, is simply incapable of knowing what you are talking about.  Asking for what we might consider normal interaction from an autistic person can be like asking a tone-deaf person to pay more attention and sing on key or a color-blind person to distinguish between green and red.

It’s not only the family and acquaintances who benefit from an accurate  diagnosis.  So does the individual.  It is possible for them to learn what they do not understand as quickly or easily as other people.  They often can learn to understand.  It takes longer but even knowing that one has certain blind spots makes a difference.  If I know that I shrink from a human touching me in ways that others don’t because I am suffering from Asperger’s, I interpret my own responses differently.  I know I’m different, and I know why I’m different.

Yet recognizing forms of autism is not simple.  It does not obliterate the individual personality and can show up in quite seemingly contradictory forms.  An Aspie (as sufferers of Asperger’s syndrome are often called) might in some situations show an appalling lack of social sensitivity and in other circumstances and even in relation to the same people, have amazingly penetrating insights into them.  They may lack an ability to understand metaphor and symbols and at the same time show great mathematical dexterity.

For some years now, I have strongly suspected that I come from a family in which Asperger’s syndrome is a marked feature.  I can see it in some of my relatives.

What I don’t know is whether I myself suffer from the syndrome.  I am appalled occasionally when I remember the insensitivity I have sometimes shown.  I hate to make small talk and meeting new people is always fraught with anxiety beforehand and teeth-gnashing afterward.

On the other hand, I could be suffering from an annoying case of self-absorption.  Or intellectualizing.  Which, unfortunately, is not the same thing as being smart.  But more navel gazing on that subject another time.

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6 Comments »

  1. I’m currently reading John Elder Robison’s book, Be Different, because we finally understand that my older son (now thirty-two) is Aspergian. One therapist with whom he did neurofeedback for ADD when he was in college suspected Asperger’s, while another who knew him said no–so the diagnosis sat on the shelf as a possibility for a very long time; recently, another therapist who works with Asperger’s clients confirmed the earlier diagnosis (“it’s unmistakable”). People with Asperger’s can learn to imitate “normal” social behaviors and thus escape notice (though not difficulty), especially if they are, like my son, high functioning and very bright. If they escape or survive the gauntlet of school, their special focusing abilities and even obsessions can become career assets. They don’t necessarily look like they are “suffering” from something, or disabled–even though they may suffer greatly from the effort to fit in and the consequences of failure. Diagnostic differentiation is hard because of other comorbid (to use an unfortunate term) issues–anxiety, for example. Or for that matter, brilliance. Or being what Elaine Aron calls a Highly Sensitive Person. It takes someone with experience with Asperger’s to sort all that out.

    Robison wasn’t diagnosed until he was forty. He’s written a couple of NYT bestsellers that I haven’t read; I bought this one because it completely sidesteps the usual clinical, often depressing, recitation of Asperger’s symptoms. There’s nothing intellectually fancy in this book, which is why I’m enjoying it; Robison simply tells stories from his adult life that reveal his mindset, and his heart, in a way that the DSM never could.

    I had to laugh out loud when I read his summation of why he learned to set an internal timer on how long he let himself speak, and thus improved his social life dramatically: “It was a sad day when I finally realized that most people do not care about the 66,000-horsepower MAN B&W diesel engines in the big American President Lines containerships. The world is just filled with important and fascinating facts, yet nypical people just choose to remain indifferent.” Substitute the railroad equivalent, and you have my son! Serial obsessions are, by the way, one of the telltale symptoms.

    Anyhow, I recommend Robison’s book as an informal diagnostic tool for adults asking questions like yours. Asperger’s is on a spectrum, of course, and not everyone has the same symptoms–but Robison’s stories clearly render the underlying common mindset, and–most importantly–describe how terribly misinterpreted such individuals can be. It’s not that they don’t care. Not at all. It’s more like they care too much.

    P.S. (And wow. The Alice in Wonderland mirror thing again!) I’ve been out of the blogging loop for a while, but took a break from work when your current post hit my inbox, and then pinballed my way to this post via your sidebar, propelled, I guess, by common interests.

    I

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    Comment by Barbara Sullivan — February 19, 2012 @ 8:09 pm | Reply

    • OMG. I just read your About page and realized that you are a clinical psychologist. Forgive me for running off at the mouth about what you obviously already know!

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      Comment by Barbara Sullivan — February 19, 2012 @ 8:14 pm | Reply

  2. Barbara, do not apologize! First of all, because I am not a clinical psychologist. I’m a developmental psychologist, and even then my specialty is cognitive psychology. I’ve learned all the basic stuff in the DSM, but for some reason I’ve always been more interested in the development of thought which is not essentially psychotic or neurotic. As Abraham Maslow suggested, there’s far greater individuality in the development of the normal than in its stunting.

    In any case, the study of Asperger’s is so new that even those at the cutting edge of the research can learn something. I know I certainly can. Simon Baron Cohen is doing some of the most interesting research. He’s here in Cambridge — where I strongly suspect are also some of the world’s brightest Asperger’s.

    I haven’t read Robison’s book but read a review just last week and put it on my to-read list.

    Double thank you.

    Terry

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    Comment by theotheri — February 19, 2012 @ 9:34 pm | Reply

    • Oops–I misread that c word. Still, as a specialist in cognitive psychology, you have all the more reason to be way more informed than I am, so my apology stands. 🙂 I’ll be interested to know if you recognize anything in Robison’s account of his experience. It’s anectodal, of course, but I think sometimes stories can be just as illuminating as data.* One of the examples Robison gives is how he learned to “see” music when he was working with electronics; he realized later that he had developed an understanding of the fundamental reality underlying the language of calculus, which he didn’t know. I think stories that honor reality by rendering it as accurately as possible, though not scientific by any stretch, are a kind of parallel for his experience–hence their enduring and pivotal role in human, and individual, development. (Of course I WOULD claim, that, being a writer!) 🙂

      *(By the way, I applaud your idea that research “data banks” in general ought to include dead-end studies, because they help develop a more holographic view of the known simply by delineating the unknown.)

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      Comment by Barbara Sullivan — February 19, 2012 @ 10:48 pm | Reply

  3. Can I just say what a comfort to find someone that actually knows what they are talking about on the web.
    You definitely realize how to bring an issue to light and make it important.
    More people need to check this out and understand this side
    of your story. It’s surprising you are not more popular given that you surely have the gift.

    Like

    Comment by bancuri becali — December 12, 2012 @ 8:04 pm | Reply

    • Thank you for such encouraging feedback. It helps a great deal to hear you say that you think I know what I’m talking about – especially about something as important as Asperger’s.

      Like

      Comment by theotheri — December 13, 2012 @ 2:16 pm | Reply


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