And Stimming With Rainbows of Every Design

Monday, April 23, 2007

The post I've been trying to avoid making

I had been trying to avoid writing about the VA Tech killings if at all possible, but I'm going to anyway, or at least write about some of the responses I've seen. Right now they just keep circling through my head, and I want to get them out. I want to say beforehand that I am in no way excusing the actions of school shooters.

I know some information came out in the past few days that Cho may have been diagnosed autistic, although I don't know if anyone's certain whether the translation was correct. Since then, I've heard people say that if Cho had received ABA therapy, none of this would have happened. I've seen the massacre turned into anti-vaccination propaganda. I've seen someone say that this is what happens when an autistic "goes off his meds," like if we're not drugged we're automatically homicidal. The last was from the one-on-one aide of an autistic spectrum student at my school.

Okay, so on top of the bullying autistic kids already receive at school, we should add on even more invalidation at home? Right, because that doesn't go against anything we've learned about the circumstances that make a school shooter.

Treating autistics like defective NTs isn't the way to prevent things like this. Almost no autistics are naturally violent. When we are, it's generally a reaction to an autistic-unfriendly situation, that might not be as visible to the NTs surrounding us, but nevertheless is still present. We're certainly responsible for no more violence than NTs, especially because there are more of them. Neurotypicals are responsible for almost all gang violence, but I don't see people going around talking about the importance of using behavioral therapy to "cure" NTs.

Here are some examples of invalidation. Aside from physical bullying, the statements on this page are some of the things that bullies tell us in school. Uncomprehending teachers and adults say the same things. The most widely accepted therapy for autistics, ABA, does the same. It orders us to look like someone we aren't, denies the validity of our perceptions, tells us how we "should" feel and act. Therapists and professionals say things about us right in front of us that they'd never otherwise say within earshot of the person in question.

I've been reading through "How to Create a School Shooter" at The Republic of T. I found this statement from Woodham, the person responsible for the shootings at Pearl High School in 1997.
"I am not insane, I am angry. I killed because people like me are mistreated every day. I did this to show society, push us and we will push back. ... All throughout my life, I was ridiculed, always beaten, always hated.
Behavioral therapy of the sort that is most common today shouldn't be promoted as necessary for autistics in order to prevent school shootings. ABA is invalidating, it shows hatred for who a person naturally is, is often successful in teaching autistics to hate themselves. We're ridiculed and beaten down in the name of therapy, in cases where restraints and aversives are still used, literally. If this was Woodham's motive, how is applied behavioral analysis supposed to help us? How will neurotypicals' attempts at teaching us how to feel empathy by means of constant invalidation prevent us from doing the same as Woodham or Cho?

I'll just touch briefly on drugging, only to say it isn't required. The statement that we need to be medicated because of who we are naturally is just as invalidating, says just as much that who we are is defective. Medication might be helpful for dealing with anxiety and depression, but it doesn't have to and shouldn't be prescribed for autism in and of itself.

I know of autistics who were raised to accept who they are, and weren't forced through today's most popular therapies, weren't drugged every second of their waking life. I see them as some of the least likely people to kill even one person, let alone massacre thirty. So just stop using the tragedy at Virginia Tech as a means to claim your therapy is urgently necessary. It's not. What we need most is to be accepted as whole, healthy autistics, and not as broken neurotypicals.

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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.


Friday, April 13, 2007

This shouldn't be amazing, it should be *normal!*

I do intend to write in this blog, it's just that I got occupied with other stuff, then the internal drafts and templates for the posts that I had planned became inaccessible over time. So, here's an attempt at a new post. I've been having segments of it appear in my brain at various times, so hopefully I should be able to work off of those to finish it. Anyway, I don't know how to post topics to ease readers in, so posting will probably be about whatever is accessible for me to write on at a given time.

I think I managed to find a decent psychologist. One of the things that's scaring me about this experience is just how happy and wondrous the experience of finding a psych who had actually read writing by autistics, who doesn't believe that we lack empathy and humor, and who doesn't seem to view being autistic as being of less value, or needing to be repaired is making me.

I'm imagining a neurotypical wandering into a psychiatrist or psychologist's office (for the purpose of this section, the psych professional isn't NT, and medicalizes neurotypicality), trying to deal with anxiety and depression. I'll call her Renae, and she's thirteen years of age, so most of the control over her psychological "treatment" goes to her parents. She's evaluated during five forty-five minute sessions. The diagnostician uses both the DSM and the DSN to diagnose Renae with Neurotypic Disorder and Mood Disorder NOS. Renae is trying to figure out how to deal with anxiety first and foremost, but first receives specific instructions on her diagnosis of neurotypicality. [Note: the following is not at all intended to claim that autistics generally try to force NTs into becoming autistic or that being an NT raised in an autistic family is necessarily negative. This is essentially a flip of my experiences with a psychologist/cognitive behavior therapist to show how bizarre it should seem.]

One of the only informational sources the psychologist permits her to view is the Institute for the Study of Neurotypicality's website. Stuff on the Society of Americans with Neurotypic Disorder's website (just ignore that the group only includes one token neurotypical for every other chapter) is also acceptable, as are some other autistic-written pages about Neurotypic Disorder. long as she has a parent to watch what it is. Anything written by other neurotypicals is off limits, since they are either more or less severe (though the psychologist can't imagine anyone less severe according to her narrow ideas of functioning) and nothing they say applies to Renae's specific case. Only professional non-NT researchers know about how this person should live and function. It's dangerous for the person to read anything written by other neurotypicals, and if they do, it's absolutely necessary that they read it with supervision by a non-NT so they can be informed what, if anything, pertains to their experience. Chat rooms are maybe permissible, but it's especially important that supervision is given in that case. It's highly important that Renae understands that she is a very high functioning neurotypical, even though only her aptitude at science and math is being used to determine this (and even though mathematical talent isn't necessary to be autistic and doesn't necessarily indicate that a person is autistic), and that what low-functioning neurotypicals say doesn't validate her experience.

Renae ignores this, and keeps reading the websites and books she has been reading, because none of this outsiders' perspective stuff makes sense. She's grown up mostly around family members, and most of her family members are autistic. The writing that she's been reading is easy to find, and makes so much more sense than what she's always heard and read before. She figures that she can just try to ignore what the psychologist is saying, but keep visiting to help her recover from the anxiety she's developed over time.

However, the most visible NT behaviors get in the way of the cognitive behavioral therapy that the psychologist wants to try out on her. Before any real progress can be made, it's absolutely necessary that she learns to stop making the natural eye contact that she has made with the NT friends she's managed to find. She needs to learn to re-modulate her voice, and to constantly evaluate the angle of her body in relation to the therapist, so as not to appear hostile. This constant self-monitoring leads to crashing during "therapy" sessions, and on a *good* day, she can go through a session without bursting into tears. She becomes more depressed than ever before, and can't understand how this is supposed to help alleviate, and not contribute to anxiety. In fact, they never get to any of the anxiety stuff, because everything is focused on learning autistic social skills and learning to act autistic at all times. When she tells a parent, she's told that therapy has to hurt to help. Finally, she convinces the parent that she wants to leave, but the psych informs her that a relapse of her depression will lead to a decrease in volume of a certain part of her brain, and therefore continuing this therapy is imperative. Luckily, the parent is disorganized enough to forget to make an appointment, and eventually, it doesn't even seem worth returning. This progression is ordinary for patients with Neurotypic Disorder at this clinic, though most are persuaded to stay, and never actually get to the very final step.

This should seem wrong and bizarre. However, a flip of this is essentially what I experienced during the short time I visited a psychologist. In my case, it was NAMI articles that I was supposed to be restricted to reading (ASA was sometimes okay too, IIRC, though I had to remember that I was "high-functioning"), though I disobeyed that instruction. (I had self-dx'ed autistic two years before through reading Moggy's archives at her old MovableType blog, and had been anti-cure since I had discovered that I was autistic. I got through that year of "therapy" by reading articles at the library and blogs of anti-cure autistics over and over again.) I didn't include the stuff with the psychiatrist trying to convince me to take Risperdal to "improve social connectedness." It was my grades and grades alone that were used to describe me as "very high functioning" despite not being nearly so high-functioning in other areas. I didn't believe in functioning labels anyway.

I'm posting this now because, though I stopped seeing a CB therapist like the one I mentioned in this article, her husband is still my psychiatrist, and still does medication management for me. Appointments with him manage to make me only slightly less depressed than appointments with her did. However, I think I managed to find a good psychologist in my area recently, who's read autism-positive books and given them good reviews, and who may even be willing to help me deal with my psychiatrist, or to recommend a decent psych for managing my psych meds. (Neurontin is the only thing I'm on right now.) Among other things, she doesn't believe the all-too-common myth that we lack empathy or a sense of humor.

Over the past few days, I've been thinking about my initial elation at discovering this person, and realizing how unnecessary it should be. Ideally, what I experienced would be considered as bizarre as the situation I created earlier. Currently, however, one would be described as right, and as an excellent therapy technique, and one would be described as very wrong. They're both equally wrong, it's just that right now, one type of person (neurotypical) is more valued in society, so trying to change them in such extreme ways would be regarded as highly inhumane and immoral. That's how it should be with autistics as well.

What I wrote of is mild. It's nothing compared to autistic kids receiving 40 hours a week of ABA therapy, and it seems very insignificant compared to what a lot of other autistics have been through. I often think that initially self-dx'ed autistics are lucky because they have the chance to find out what I discovered first and are then better able to notice the prejudices of others and determine that those people are wrong.

The prevalence of more extreme ways of treating autistics doesn't make the stuff like the example I gave any more acceptable, it just means that we have even more to try to change. I want the world to become autistic friendly, and I wish it were possible to just create a cure for prejudice, but failing that, I hope that one day, preferably soon, autistics will be able to receive help for anxiety, depression, and PTSD resulting from abuse by prejudiced NTs without the people supposed to be providing the assistance furthering the problem. Right now, it seems like the safest thing is discussing stuff with peers online, and not every autistic has access to that, or is confident enough socially to try to meet people online. (It took me almost 2 years to actually interact with people on the web and start posting myself, before that was just a lot of reading and learning.)

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