Spectrum

I hope that it is not offensive to anyone when I say that I am fascinated with autism. It is such an intriguing exceptionality, and we know so little about it. I mean, professionals have learned a great deal about how to diagnose autism, and how to provide useful therapy and support for people with autism… but we still don’t exactly know what it is. There are so many questions, not the least of which have to do with that whole “disability” term. Is autism a disability? Or is a differentability that the general population doesn’t know how to interpret? So many of the people I have known who have autism are brilliant in unusual ways, capable of processing facts and data in ways that most of us can’t begin to approach. Those with autism are not fully a part of this world, but do we know that that is a bad thing? We know nothing of the world they do inhabit.

When I was in high school (and I haven’t gotten to my ten-year reunion yet, so this wasn’t that long ago) I had barely heard the word “autistic.” I’m not sure how aware we were aware of it; Wikipedia suggests that we began thinking of autism in its current sense in the 1960s. It also tells me that incidences have increased dramatically since the 1980s, and that this may be due more to improvements/changes in diagnosis than in actual prevalence of the condition. There are a lot of kids and adults out there that are “on the spectrum,” which is the best way I know of to describe it. Basically, there is a spectrum of autism; if an individual is severely autistic, they have severe difficulty connecting with this world and functioning within it. If they are lower on the spectrum, they might have Asperger’s Syndrome (or “high functioning” autism) or simply some tendencies of the disorder.

MSNBC/Newsweek did a little quiz thing, some time ago, that allowed you to self-diagnose yourself. Of course, this is not a terribly accurate tool, but like any magazine quiz it might provide some insight that could lead to a useful discussion with a physician. I took it at the time and got a higher score than I did tonight; not sure what that indicates. Anyway, tonight I got a 24.

agscore

If you would like to take the quiz, click here.

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3 thoughts on “Spectrum

  1. Veeerrrrrry interesting. I got 25, but I’m pretty sure I’m “normal.”

    I’ve been working this summer with a seven-year-old boy with profound autism – pretty much a text-book kid, he fits your basic definition of “profound autism.” It’s been difficult, incredibly difficult. And frustrating. And I have to say, I haven’t really enjoyed my time with him. He’s non-verbal (not to be confused with non-vocal) for the most part (he has about a ten-word vocabulary), but gets very, very loud when he gets mad. He also gets very physical when he gets mad, which is difficult for me, being a person who doesn’t really like to be touched by mostly-strangers. What I find to be most frustrating with him is how he checks out. Literally. He’s just gone in his own world. And I have absolutely no way to find out what happens there. He can’t tell me, he can’t draw it for me, sign it for me or sing about it for me. The only way I can interact with him is by reading his basic human instinctual behaviors that have learned behaviors interspersed throughout. What does it mean when he’s in the back seat of my car staring out the window watching the other cars on Broadway and suddenly starts laughing histerically? What does it mean when he starts crying and grunting while trying to get me to put his Capri Sun and still-wrapped straw into my hand? What does it mean when he keeps scratching the same spot on the back of his left leg but there’s nothing there? It’s largely a guessing game with him, with me doing all the work. I know it sounds selfish, but I think that as humans, we’re conditioned to live, work and breathe together, giving and taking evenly as we go through our lives with each other. Children with autism aren’t. Children with autism can’t. And it’s not only difficult to recognize that, but it’s difficult to understand that.

    I think you bring up an interesting point about autism, that not being a part of “this” world isn’t necessarily a bad thing. I also think you’re lucky to have mostly known people with autism who also have a brilliant streak in some area – I know that’s not that common. I also don’t know that not being a part of “this” world is so bad, but if they don’t belong to “this” world, where do they belong? Can a human being thrive in their own, self-created universe? Do caregivers do children with autism a disservice by encouraging them to interact with the world around them appropriately, limiting the time those children can spend in their own worlds? Or is there no other world for them? Is it just an under-processed version of what the rest of us experience every day, therefore making it a necessity to teach them how to have eye contact, how to say hello or thank you, and how to use the toilet each time you need to pee?

  2. That’s an excellent point, Angela. I didn’t think my post out very well in my rush to post the MSNBC quiz!

    I haven’t known very many people with autism, and those I’ve met have all been older (at least high school aged). I know that they had also received years of occupational and other therapies to help them share their abilities and function at a higher level in “our” world. I do have some internet-friends with autistic children, and I know from reading their blogs that raising an autistic child is an unbelievable challenge – and heartbreak.

    The point I was hoping to make was that the mystery of autism is quite fascinating to me. I’ve always been intrigued by thought and what goes on inside our minds. I remember being very young and spending hours trying to figure out if my ears were hearing my thinking and, if not, how my thinking had a voice. I guess you could say metacognition has been a part of my life since LONG before I could spell it! Autism is quite a mystery of cognition.

    How did you get into a position of working with the six-year-old?

  3. I would question how accurate that quiz is. I scored 35, but I know I’ve taken it before and I think I scored higher. I’ve never been diagnosed with Asperger’s (or any sort of autism), and I’ve seen plenty of doctors who could have done so.

    I don’t really buy into the “spectrum” idea so much anymore. I don’t necessarily think that Asperger’s and full-blown autism are related. In fact, I think it’s dangerous to connect the two. There are a lot of Asperger’s people out there who don’t want to be “cured”, but they go further than that and demand that nobody with autism be cured (even the kids who are violent, non-verbal, and self-injuring). Having quirks or not liking social situations is hardly the same as having screaming fits and banging your head against the wall.

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