And Stimming With Rainbows of Every Design

Wednesday, April 18, 2007

Autism Prerequisites

I've been perseverating on autism for four years now, and over that time, have read a lot from people with any type of connection to the autistic spectrum, from being on it to being the grandmother of an autistic, or just having heard about autism from an online friend. I've seen an equally wide variety of ideas about cure. Unfortunately, it seems like autistics aren't allowed to be as varied, or at least not be different from other autistics and still be regarded as autistic.

There’s something I’ve seen, especially among the pro-cure crowd, though it’s just as possible for people who have only heard about us from the accounts of NTs, or have had very limited exposure to autistics and autistic experience. It’s almost like in order to be considered a “real” autistic, and not one of those “fake online autistics,” I have to meet 20 prerequisites. The deadline has already passed for 15 of them, and I’ve only managed to meet five. I’ll be suspect that if I meet the remaining five, just because I already knew about autism, and clearly must have put in an effort to meet those five simply so I could become more convincing.

The items on this checklist are arbitrary and take into no account the context I grew up in during the time before the deadline. They vary based on the experiences of the person who makes the internal checklist (though many items, such as specific therapies and time of diagnosis factor into most of these people's checklists), and these checklists may contradict each other. My date of birth might be taken into account when evaluating me, but then it will be used as reasoning for why I especially should have met the person's criteria. The same will go for my location. Any exceptions beyond that aren’t even considered. Clearly, if I was born after 1990, and in a wealthy area of California known for its high rates of autism diagnosis, I must have had the same limited set of experiences that their kid had. If not, I must be faking.

I’m one of many (most?) autistics who doesn’t neatly meet these prerequisites. Real life is a lot more complicated than two facts. I didn’t receive the same therapy as the kids of these people because of factors far more important than my age and location, and the lack of receiving this therapy doesn't mean that I was all that different from their kids. In my case, it was obvious that I was autistic or otherwise developmentally delayed from the time I was 18 months old (maybe earlier, I'm not certain), and suddenly lost public speech. I still spoke a little at home, but not much. I regained speech several months later, but at least until I was five or so, from preschool and daycare records, I can guess that almost all of it was echolalia. (I have lots of papers where a teacher had told me to tell them a story about “that fish,” and my response consists of “That fish. I love my mommy and daddy.”) I certainly had people attempting to persuade my parents to get me evaluated when I was a toddler, and probably would have easily been accepted into speech therapy, or an ABA program if I had ever been taken to be officially diagnosed with autism. I was kept in preschool until I was six in the hope that I would magically become normal, socially and language-usage-wise, and kept in classes with younger students throughout early elementary, because they were thought to be closer to my developmental level.

However, I never was diagnosed even then, and never sent to a professional. To a lot of people I may have been visibly autistic, but to my family, I was “visibly like Mom and Dad, and even more visibly like Grandpa.” That idea just got reinforced when, at 3, I became very perseverative on factual stuff about dinosaurs and pandas, and echoed books about them. My parents would talk with pride about how I went around speaking a memorized National Geographic caption about the Woolong Preserve, and they just decided that I was even more like my mother's father, who had come to be a very well-known geologist in his specific focus area, mainly as a result of a perseverative interest. I had hypersensitive hearing and vision, but that didn't seem that odd for my family.

I also have a medical disability, and no siblings, so a lot of stuff that would have far better been explained by autism was just attributed to those two factors, regardless of how much sense it made.

I happened to go to what was close to the perfect preschool and elementary school for me, which focused on accepting the kid's developmental path, and not on forcing standards by a calendar. It was designed as a school that was supposed to be good for kids in general, and just happened to be very autistic developmentally friendly, without pressure on my parents to make efforts to normalize me, and without pressure on the part of the teachers to look NT. I ended up becoming a lot more able to function as I am than I probably would have otherwise, even (or rather, especially!) if I had been given conventional therapies.

All of this stuff in my early childhood resulted in my skipping a bunch of "autism prerequisites", that, while it might be permissible for me to have skipped if it were possible to see that I had "festered," (even if I could write online about how my parents had let me fester) aren't so permissible if I've become adept at writing, and have learned to happily function as me, and say online that I can do so.

There are, in my opinion, experiences that I have had which are just as important if not more so, in proving to a person that they are indeed on the autistic spectrum. For me, it was the two real friends I had in elementary school, who, in retrospect, were both obviously autistic. I remember how effortless communication was with them, and I remember how difficult it was with all of my other peers at the time. I also remember being literal enough at age six to think that writing in the English language was outlawed by copyright law ("No part of this book may be used or reproduced in any manner whatsoever without written permission." Words are parts of books, albeit miniscule parts, so I thought that I couldn't reproduce any word I had found in a book with a copyright notice.)

Those are just two of the many things that I can look back on today, and say, "Hey, that wasn't officially noted, but it was real, and looking back, I can see what it said about me." They're also the kind of things that, despite their significance, do end up ignored, precisely because they're small and unofficial. I often have periods of anxiety, where due to not meeting the more common checklists, I become afraid that I'm just pretending to be autistic, and those are the things that I grab onto. I keep a file (or not quite, but that's the closest verbal approximation for it) in my memory stored for experiences like the ones I just described, precisely for those times, and have a file in my computer with scanned in images from my early childhood affirming that I am autistic. This is also the main reason I keep my scribed stories that my preschool teachers gave my parents.

I'm not trying to say that I'm exactly like every other autistic kid in existence, or even like 25% of autistic kids. I'm not trying to claim that I am just like some curebie's son. I'm not. It's just that I'm tired of reading that it's impossible to be autistic if one doesn't fit a bunch of individually constructed criteria based on another person's stereotypes and limited experiences, and tired of hearing that based on my not having had these experiences, I can't have anything in common with any autistic kid. I don't like hearing that autistic advocates can't have anything valid to say based on not getting to check these boxes on their list of Autistic Life Experiences for various reasons, that, even if they almost certainly aren't my own, are no less valid.

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1 Comments:

  • I have gotten online all kinds of flak for not being exactly like their autistic kid - and they think that if I have the least bit more adaptive skill at age 17 than their 3 or 5-yr old, I'm not truly autistic.

    Especially it annoys since I don't claim that I have the same exact difficulties as their kid, or that everything I can do that he/she could and should do.

    Notably, on YouTube, I posted a response to a video, in which I included that I found it offensive that she referred to the existence of many autistic kids as a "slaughter" - and she responded with much fury, and then wrote along the lines of "oh, and I suppose YOU do behavior X and behavior Y?!"

    It happened that I had done them, up until ages of, 5 and 10 I think they were, so I noted this in my reply, even though she had threatened to "and if you post again i will wipe it"

    Other prerequisites I fail to meet, since I am considered to be "high-functioning", are often of "You must be a genius in..." Another thing that annoys me is when people say to me, "You're so high-functioning..." I feel as if they had just picked my up be my head and transferred me into the RainMan movie.

    By Blogger AuStim, At 4:04 PM  

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