Many of us who are blessed with being autistic rankle at the term “disorder” — our condition is a part of the natural order of things, and is, perhaps a “different” order, if you will.
I find this latest video by Autism Speaks to be quite alarming!
“There has been a lot of furor over the new Autism Speaks PSA I Am Autism.”
Here’s the commentary that starts with that sentence, with a link to the 4-minute video.
And, a good running commentary, with a full transcript, by the self-advocates at ASAN.
I am still too livid to compose a reasoned response, so stay tuned, and once I calm down a bit, I’ll post some thought-out commentary!
btw, to call it a “PSA” is misleading — it is a “PDA” — a public disservice announcement. đŸ˜‰
A shorter version of this post appears on my blog, where I will post follow-up commentary, and reactions from others.
I would welcome your reaction.
David, thanks for the rec.
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p>Judy, do., and for your “Breathe deep…” comment! LOL! You know me too well.
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p>I know I have an overdeveloped sense of injustice, and I wonder how much of that came from a lifetime of being subtly discriminated against. I’m not sure I suffered much overt discrimination, but in this case, perhaps perception is reality! đŸ˜‰
I thought autism is something we would want cured and I’m sure I would if I had it. The kids with autism I’ve worked with seem constantly very frustrated by their communication and sensory challenges. I have cerebal palsy myself, thankfully a very mild case. I live with it and it’s so minor that I generally don’t consider myself disabled (I wouldn’t apply as a disabled add-on delegate, for example, though I probably technically qualify.), but that makes it extra frustrating when I do run into a task I can’t perform. If there were a way to make my left hand fully functional I’d jump on it.
Autism is not a disease. It is, in the view of many in my community, not even a “disorder” as it is so often labeled. It is, rather, a different way of being.
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p>Autism is a neurological difference. That’s all. A different way of processing information. In many cases, this difference can lead to ways of thinking that are considered by neurotypicals (NTs), as we call them, to be creative, and even brilliant.
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p>Every community has its heroes. Ours include the suspected autism of historical figures such as Mozart, Newton, Jefferson, Einstein, and many others.
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p>Yes, as you suggest, it can lead to sensory issues, and communication problems (or “challenges” in the gentle language of the disability community). Yet, I wonder how much of that (and I suspect most!) is created by NTs, who make up 99% or so of the population. We are not presented with an environment that was designed for our comfort. We live in a different world (some would say on a different planet…) and we are expected to fit in with yours. Very little effort is made by NTs to understand our perspective, our needs, and what would make us comfortable. I don’t mean to sound bitter. That’s just the way it is when you’re a tiny minority.
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p>I have had a good life and a successful career, much of which I can attribute to my special abilities that come from my autism. Yes, I have had my share of heartache (again, much of which has been because of my autism), but who hasn’t?
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p>Would you try to “cure” left-handedness? To me, you might as well “cure” me of breathing as “cure” me of autism! It is part of my very being!
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p>Now, treatment is a different story. There are many strategies that autistics can use to better get by in an NT world. And, I’ve been involved (as a subject) in some research at Harvard Medical School to find ways to aid people with autism through electronic stimulation or other means, so there are possible ways to improve communication skills and other things.
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p>So, yes, what I have is technically a disability. And, in some ways it is. Yet, I am proud of who I am, and all that I have accomplished, and I would not trade that in for anything!
…do you believe it is a fair parallel between certain autism advocates and yourself with those deaf parents who object to the idea of cochlear implants that would enable their children to hear? Much of what you are saying is very similar to what I’ve read from some advocates from the deaf…is the comparison fair?
for people to remember that there are multiple levels of functioning across the autism spectrum. There are people with autism who are very high functioning, as can be the case with Aspergers; alas, this is not the case for everyone. One of my dearest friends had a child with autism, and he is not high functioning, and I don’t think his parents consider it a “blessing.” They consider it every parent’s nightmare.
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p>On the Discovery Channel, there is a program called Autism X6 about a family with 6 autistic children, with varying degrees of ability/disability across the Autism spectrum – from Asbergers to a very impaired little guy. Their home looks like a war zone, as the more impaired children destroy their rooms, living room, etc. This couple makes those 2 knuckleheads from Jon and Kate plus 8 look like the ingrates they are, with 8 healthy kids.
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p>We need to remember that we are dealing with individuals, not cookie cutter disabled people, and one-size does not fit all.
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p>Autism is not a “blessing” to a lot of people. As you rightly point out, the spectrum of disability/ability is wide, and for those parents with low-functioning autistic children, there’s not much in the scenario that looks like a “blessing” at all. Indeed, for the severely autistic, like those who live in sheltered houses like Archway in Leicester (where my best friend services clients), there’s tremendous anguish for both residents and families in dealing with this condition.
Asperger’s syndrome. Some are very high-functioning, college-bound, and have a developed sense of self-self-awareness. They have taken AP English, for example. There are others that are destined for less productive, though, not necessarily unhappy lives.
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p>I had once boy (call him Max), for example, who couldn’t grasp the concept of opposites. He was also a pleasure. His thing was memorizing the TV guide. Give him a station and a time and he wouuld tell you the show. I didn’t overdo it, but I would give him a time and station, and he’d give me the show. While this wasn’t “normal,” I don’t see it as significantly different than the regular kid who talks about football.
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p>Max was also funny. One day I was on lunch duty, and he was talking to a table of kids. When the table erupted in laughter, I went over to make sure he wasn’t be made fun of. I asked one of the kids, a very nice kid who shared a special ed study with him, what happened?
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p>The boy had said to the kid, “Hey, I went out with your girlfriend last night.”
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p>The kid said, “Oh really?”
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p>Max said, “What could I do, she said she was horny!”
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p>The kid he said this to sort of looked out for Max. He and his friends thought what Max said was funny. I still think it was funny. Certainly, some of the humor came from Max’s (dis)ability, it was somewhat socially inappropriate, but so is much humor.
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p>Did Max need to be cured? I don’t know. Would he want to be able to go to college, live a “normal” life, be financially independent? Probably. Do his parents fear for him in the future? Probably. Is he a good, enjoyable person? Yes.
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p>Max is a marginal case. His autism is part of who he is and he’s extremely likeable. But without a good family, he would face some serious life problems as an adult. It’s important to remember that there are kids somewhere banging their heads against the wall, can’t communicate, and lack any sort of self-awareness or direction. It’s as presumptuous for us to assume that those kids don’t want to be cured as for us to assume that Michael needs to be cured.
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p>Michael, thanks for sharing part of who you are with us. It doesn’t have any bearing on your contributions here, but it’s nice to be reminded that we aren’t all the same and that is a good thing.
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p>Mark
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I don’t think anyone denies that. I don’t know MFW super well, but from what I can tell he is high functioning, as am I regarding cerebral palsy. I’m not sure I’d go as far as he does and call my situation a blessing, though the one advantage I can think of is I could not be drafted for combat duty.
have had autistic and Asperberg’s kids.
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p>My most memorable student with autism was cognitively highly intact but socially hugely disadvantaged. He had a variety of OC issues, the most striking of which was his obsession with plumbing. He spent most of his time in class drawing toilets and its plumbing, which was a bit of a challenge. His toilets and plumbing pictures were beautifully drawn, intricate in detail and rendering. (He also took a creative writing elective that year in poetry, and, you guessed it, his portfolio of 50 original poems was an ode to modern plumbing.) I had him in an elective, too, Utopias/Dystopias, and his final project was amazing, but also heavy on the plumbing.
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p>He presented me with a gift before he left of a toilet so finely rendered you could almost sit on it. I had it professionally framed (in bathroom tiles) by a friend and it hangs, to this day, in my home.
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p>He was a joy on many levels, but extraordinarily difficult to manage in a classroom due to his many OC behaviors (e.g., kids coughing created tremendous anxiety & tears). This student will never live independently, and its hard to view his disability as a “blessing” in any sense of the word.