Disorders in the spotlight

It’s amazing what you can learn by looking a word up in the dictionary. Especially if it’s an online dictionary — it’s been a long time since I’ve used a printed dictionary, though we have a couple around the house somewhere. I generally use dictionary.com, which is convenient, easy to use, and doesn’t require a magnifying glass to read the definitions.

Of course, some things I learn there have nothing to do with the words I’m looking up. Dictionary.com has a blog, The Hot Word, with not-quite-daily posts on topics related to words. Earlier this week I was reading about the origins of the letters C and Q. Last week I read about Gaelic, and last month about Catalan (a language I can actually understand a little of in its written form).

 But today’s was so interesting, it wasn’t enough just to read the linked article – I promptly went to Google to learn more. Normally I wouldn’t bother with an entry about American Idol, but this one also mentions Asperger Syndrome and Tourette Syndrome. My sister’s son has Asperger Syndrome, and a friend in Michigan has a grandson with Tourette Syndrome. I don’t know anyone with both, though apparently they do tend to show up together.

Since people with Asperger Syndrome tend to have poor social skills, and people with Tourette Syndrome often avoid social situations where they may be made fun of because of their uncontrollable tics or verbal outbursts, I was impressed that James Durbin would put himself in the spotlight by auditioning on American Idol. Apparently he is a talented singer – though from the descriptions I read it’s not a sort of music I would enjoy listening to.

The blog post points out that “Durbin is helping to change the perception many people have of these two very misunderstood afflictions.” I don’t know what impression most people have of Asperger Syndrome, since I never heard of it until my nephew was diagnosed with it, but I agree that it’s good that Durbin’s success can help not only him and his family but many other people affected by those two disorders.

One article I read, however, points out that this positive (at least so far) treatment of Durbin on American Idol is quite a contrast to how some other people have been treated on the show who may have similar disorders.

Why is it that someone like James, who’s publicly identified as being on the spectrum, is profiled as being inspirational, while the very same producers feel perfectly OK humiliating others with similar skills and social patterns but happen not to be labeled?   … Why do we have to have a label to hang on someone before we can treat this with compassion and respect? 

I’ve thought about this sometimes in connection with my own son, who has mild autism. Often people are surprised to learn that he has autism, as he has learned to interact with other people, speak normally, and only does the “hand-flapping” when he is walking around by himself. Yet he has difficulty dealing with certain kinds of situations, and if he didn’t have the “autism” label I don’t know whether people would be as patient with him as they are.

I’d like to think they would be — some are even without knowing about the autism. The other students in his classes, and the Scouts in his Cub Scout pack, and now his Boy Scout troop, have been — for the most part — patient and kind with him. So have adults who work with him in school, at Scouts, and in church, for which I am very grateful.

But it’s not hard to imagine situations where people would make fun of him, shun him, or bully him. Since autism is diagnosed based on behavior (there is currently no physiological test that can be done for it), if he didn’t display quite enough of certain behaviors to be considered autistic, he wouldn’t “qualify” for the label. Instead of being “worthy” of patience and extra help, he might just be considered strange, annoying (who isn’t, sometimes?), and become the butt of jokes or pranks.

What does it say about us, that if you’re a lot strange, you get sympathy and help, but if you’re only a little strange, you get made fun of? Until I had Al, I never really thought about these things a whole lot. But reading about various disorders (not just autism – when he was in preschool we didn’t know yet what specific disorder he had), one thing I learned was that getting a “disorder” label is often a matter of degree.

There’s no such thing as a completely “normal” person except in theory. Every one of us is odd in various ways and to various degrees. Some unusual traits are considered positive (though just about any trait brings with it certain problems if one is too far from average), others are considered negative. Generally people are considered within the range we call “normal” as long as their peculiarities, whatever they may be, don’t get in the way of dealing with everyday life. When they do, then the “disorder” label comes into play.

I’ve often thought how glad I am that Al was born in an era when he could get extra help at school instead of being considered stupid or rebellious (neither of which describes him at all, but at one time some of his behavior could certainly have gotten him labeled that way). Wouldn’t it be great if people with odd behaviors could generally get as much love and support as he has, even if their behaviors don’t have a label?

[Note: Lest someone think I mean tolerating bad behavior, that’s not what I mean. Al’s teachers don’t let him continue to disrupt the class when he has an outburst. “Love and support” doesn’t mean that. But it means that instead of punishing him, they teach him coping strategies.]

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2 Responses to Disorders in the spotlight

  1. modestypress says:

    Although many people like to think of “absolute values” and “permanent standards,” in fact even a rudimentary look at social history reveals that “normal” changes drastically over the centuries.

    I remember in junior high school one of my classmates had bizarre behavior patterns–running around and making noises as if he were an airplane–and the rest of us mocking him. I wasn’t the worse, but neither was I as impeccable as I should have been. That was about fifty years ago; today he probably would have had a label and more supportive treatment.

    These changes vary across the spectrum. When I was in high school, one of my classmates was so brilliant in science and math that the rest of us were in a shadow compared to her. In all her years of high school, she never missed a question on a mathematics exam. The boys in particular found her intelligence threatening and intimidating. She took on a persona of almost complete politeness and modesty so as not to call attention to herself. Even so, I remember one of my fellow male students saying to me, “I just don’t like Donna; there’s something about her that really bothers me.”

    Even though I wasn’t an icon of feminist sensibility at the age or 15 or 16, it was apparent to me that his problem was clearly She is so much smarter than I am that it makes me really insecure.” She told me once she wanted to be a cosmologist. Her very supportive father told her: “Go to a woman’s college where you won’t have to deal with threatened boys.” She graduated from Wellesley with a degree in Astronomy. I looked her up years later. After gaining a doctorate in astrophysics at Cal Tech (where people who are too smart for MIT go), she was a professor at University of Nevada at Las Vegas and worked on the Hubble Telescope project.

    She told me that there only three women in her class at Cal Tech. One day a senior professor called three female astrophysics doctoral students into his office and read them the riot act. “If it were up to me, you wouldn’t be here. You will just get your degree and drop out of science and have babies. You are just taking up spaces men who are serious about their science work could use.”

    Donna told me after that experience, she mad it a point to mentor and support young women pursuing careers in mathematics and “hard science.”

    Our “norms” do change to a remarkable degree over different generations. As you know, my granddaughter (now seven and possessing a very high IQ) thinks it is perfectly normal to have “two mommies” with whom she lives and “two daddies” who live in Chicago and visit her frequently in Oregon.

    Even though our society is rapidly accepting that homosexual relationships are a “normal” part of our society, when I glance at worldmagblog, the evangelicals still foam at the mouth about homosexuality and are still certain they know what Jesus thinks about it. I don’t know whether Jesus was divine (as you know, I doubt it), but I am quite certain he wasted very little time and energy fretting about homosexual marriage, for all the evangelicals claim they know His mind on the topic. If He is the Prince of love, then He loves the little autistic and Asperger children and wants us to love them also, tough as it is.

  2. Karen O says:

    Pauline, my younger daughter, Chrissy, falls into that category of not having a label, but being not quite “normal”. New situations, where a “normal” person would feel some apprehension or anxiety, induce panic in her.

    Remember that Autism Spectrum test that was on Facebook a while back? It did not surprise me that she tested high on that, at what autistic people would test on average. From reading I have done, I think she is very close to having Asperger’s Syndrome, but not quite.

    Then again, if I’d taken that test at 18, I would have tested a lot higher than I do now. Part of that is due to maturity & having experiences in life, & part is due to God’s work in my life.

    I have told Lee that we need to help Chrissy face adult life by easing her into it, with plenty of love, support, & understanding.

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