Reflections after recent conversations with autistic adults
From a letter by Peter Weinberger published in today’s New York Times in response to Monday’s op-ed by Paul Shattuck and Maureen Durkin on the dispute about whether or not there is an “epidemic of autism”:
Any parent of school-age children knows, anecdotally, that there are far more autistic children these days than when we were in school. These are not kids who are “a little different”; these are kids who have very limited speech, if any speech at all. Kids who cannot communicate effectively. Kids who have limited ability to function in society.
Indeed, yes: On my visit to Charlie’s classroom yesterday, I saw him and five other boys, all with minimal or no speech and notable as “different.” And there are more autistic children in Charlie’s school, either mainstreamed or in a different special education class, or even undiagnosed (a mother recently wrote into a local paper about her son who was only diagnosed with Asperger’s as a teenager, of the bullying he suffered at the hands of the same students who win accolades for their athletic prowess, and of her more than frustrated feelings about how the administration has handled all this). There are a lot more autistic children in the public schools.
But: There are also a lot more people trained to identify, teach, and help autistic children: It was jsut a few years ago, that our school district did not have the program that Charlie is in. The seven professionals—teachers, psychologist, ABA consultant, aide, occupational therapist, speech therapist—-at Charlie’s IEP meeting all are educated in autism and trained in how to teach autistic children not only using ABA but with attention to the sensory needs of children. And parents, in my district for sure, know about these services and programs, know the basics of what autism is, and you can be sure if a young child—if a child at an older age, as the teenager who was diagnosed with Asperger’s while in high school—-has needs and is struggling, the parents will seek our evaluations and services.
When Charlie was first diagnosed, my mother-in-law said “there’s special schools” and Jim and I responded that efforts now go towards educating a child in local public schools (not that this always works). I would like to know where the kids who were my age in the 1970s—and who were autistic or who had other diagnoses such as mental retardation—went to school, if they went to school. I never saw them, both because they were not there to be seen, and because I was not looking.
But I am now, and few days go by now when I do not meet an adult who may have autism: This post describes the middle-aged woman who lives across the street from us. This post describes a map-maker whom Charlie and I shared a table with last Saturday in New York.
Who have you met recently?
12 opinions for Reflections after recent conversations with autistic adults
Club 166
Jun 15, 2007 at 1:42 pm
My sister is a chemist. She works in a lab with a bunch of other geeky guys.
About a year and a half ago she was describing what her nephew (then 5 year old Buddy Boy) had constructed in his bedroom.
He had made this tower out of building blocks, then strung a series of “lines” connecting the tower all over the room, using scotch tape and string. The lines went to his bed, the walls, and any other place he could reach.
When she told the guys at work about this she said there eyes all lit up, and they were all like “Yea, gotta meet this kid. He’s one of us.”
I have no idea if any of them qualify for a diagnosis on the autism spectrum, but they recognized a “fellow traveler” in Buddy Boy.
Joe
Joe
Club 166
Jun 15, 2007 at 1:44 pm
Oh, I forgot the most important part. When asked what it was that he was making, Buddy Boy stated, “I’m building a power source for the Inuits.”
Joe
Jun 15, 2007 at 2:24 pm
When I was in school, the system tried to hide me away. They could tell that I was different and they wanted to put me in a “special” class so I wouldn’t bother the “regular” kids.
My mom stopped them.
I bet that not all had the same quality of defender that I had.
Joeymom
Jun 15, 2007 at 2:58 pm
A little over a year ago, I had no idea how many autistic people I knew. Now, I seem to have friends coming out of the woodwork to tell me things like, “oh, yeah, they told my parents there was somethign wrong with me, but here I am.”
My own mom was told I would have adificult time reading. Turned out, I was ALREADY reading. I was in special ed for a couple years when I was litle- maybe I ought to ask my mom what for…
It seems that ASD kids from when I was growing up were considered gifted geeks if they could talk, and MR if they couldn’t.
Joe
Jun 15, 2007 at 3:06 pm
Joeymom,
I wish I’d been labeled a gifted geek when I was younger (I didn’t get that label until I was about 15.) I could talk and I was reading before going in to school. I was considered MR anyway, even though I tested at the top of my class in both the district and the state. My mom didn’t buy it though and told them over and over that I was bored not stupid.
Linda Sullivan
Jun 15, 2007 at 3:37 pm
In the 60’s and 70’s “they” were in “substantially separate” classrooms, aka the basement. Chapter 766 came along in 1976 guaranteeing education for all children. It has only been in the last decade that educational services for children with autism has begun to be defined and delivered. You are a pioneer in this.
natalia
Jun 15, 2007 at 6:01 pm
club 166, i used to do the string thing, too, though i forget the backstory. i *figured* it was a ’sign’, though… (^_^)
kristina, i was in middle school and highschool in the 80’s with some ‘obviously autistic’ people. 2 that i remember were in special ed and one of them and (as well as a probably aspie guy who had some unofficial connection with special ed, maybe like i did, but more than just visiting) were mainstreamed in some of the same classes as me. i wish i had known i was ‘one of them’ back then, even if only in order not to have considered them as ‘Them’, as supposed to some ‘normal Us’ that i was not really part of, any more than they were.
did that make sense?!
Jen
Jun 15, 2007 at 8:41 pm
I only graduated highschool in 2004, but one of my best friends and I recently realized that one of our other friends was so clearly an undiagnosed aspie. We didn’t know it at the time because we just had no idea about autism at all. Actually, I sorta think so about one of my other friends, and the kid I went all the way from elementary through highschool with who lives behind me. He was in special ed, though I have no idea what for. He was great in science and history, but terrible in math, and horribly disorganized. When we had science together in middle school, it was my job to keep him organized, and he explained all sorts of science to me. Last I talked to him, I think he said he was a history major, because he couldn’t do the math involved in any area of science he was interested in.
Actually, since I started school before autism was added as a category, maybe the people I went to school with were identified under other categories. Had they been a few years younger, maybe they would have been labeled differently.
Jen
Jun 15, 2007 at 8:48 pm
Forgot to add
One of the students I work with has an uncle who is autistic.
I also saw an autism speaks bumper sticker on a car not too long ago outside Value City. It did not take me long to guess that the car belonged to a woman in the store with a man who appeared to be in his late teens or early 20s. Since they left the store at the same time as me, I found out that I was correct in my guess.
Daisy
Jun 16, 2007 at 10:43 am
I often recognize similar traits in myself after watching my teenage son, an Asperger’s kid. I am almost certain that my father had it and was undiagnosed. Maybe I’m on the spectrum? Maybe, maybe not.
Karen
Jun 18, 2007 at 7:47 pm
It’s almost an embarrassing story I have.
I work with a guy at work who does a bit of the hand thing — holds them up at his chest. He’s got what I call autistic eyes. I don’t know how to explain it, but it’s something I associate with my brother’s stare — pale blue eyes that seem to start behind themselves. He also shuffle-walks like my brother.
He’s got an adorable six or seven year old boy. This kid flaps his hands, strokes things, talks in the sing-song voice, and wanders in circles when he visits his father. One day, I was talking to my co-worker about my brother, and I said, “And, you know, your son’s autistic –”
“No he isn’t.”
Without thinking, I said, “What does he have?”
“Nothing.”
I apologized, but wow. That kid is so SMART and talkative, but he’s just … I’ve been around autistic kids all my life, and this was one of the most autistic-yet-talking kid I’d ever met. He’s got to get some extra help for learning in school, and I just wish his parents would at least have him tested. It’s hard to follow a curriculum structured for the more ‘mainstream’ kids when you’ve got a whole special set of abilities that the rest of your kids don’t have.
And the guy, friendly, sweet, smiley, and quiet, always lingers on my mind as well. But, hey, he’s done fine for himself. :)
Aidoann
Jun 20, 2007 at 12:18 pm
I only graduated high school last year, but I know for a fact that there were people who were either HFA or had AS who went to my school. One of my closest friends has a brother who is autistic. I also suspect that one of the teachers (who no longer works there) may possibly be a little bit AS.
I was considered a bit of a geek when I was younger (and I probably still am now) and I learned to talk fairly early, though I never talked much around anyone but my immediate family and few close friends.
-Aidoann
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