Sunday, October 14, 2007

Allyship: My Story

Returning visitors here know that I usually write objective reviews about science in autism. Today’s post will be quite different. This will be a subjective article about experiences with autism advocacy. Specifically this is my journey. It is the brief tale about learning to be an ally and my experiences with the philosophy of nuerodiversity. In the post I try to define some difficult concepts. Others may disagree with the way I have defined such. I should say that my objective here is not to offend or to speak for the group, but to speak for myself.

My story begins as university Sophomore. A friend talked me into… well actually she made me… be a volunteer in a local special education school to get some “resume building” done. It wouldn’t be so bad she suggested, it was just two hours a day and we would get to work together. My friend was placed in classroom for students with a cognitive impairment. It turns out though that they had enough help there. They said they could use me more with in a pre-school classroom for children with autism. And thus did my journey with autism begin.

I had already worked a little bit in my last semester in High School as a teacher’s aid with students with autism. I didn’t know very much however, except that these folks were an interesting mix of strength and weakness. But now, I was completely fascinated. I spent my nights studying the late, but much missed “Oops Wrong Planet Syndrome” and various related autism websites.

I was also in a tricky time in my own life. I was trying to decide whether I should zig and stick with psychology, or zag into pre- med. To help me reach this decision I elected to take a Philosophy of biology course in my second semester. The course was tremendously hard and tremendously fascinating. It was a revelation. I remember being caught up in Gould’s clear gift for prose, Dawkin’s lucidity, and Oyama’s complexity. And the topics that were drawn into the class were amazing; red shift, cryogenic earth, the central dogmatic fallacy. For the first time in this class I was told what a “strawman” was. Up to this point I had figured that college had nothing to teach, that my undergrad years were here to “fill in the gaps” from High School.

This one class taught me more new information than the sum of my Freshman year. It also left me three world views that have lasted since. It directed me (not on purpose I think) into behavior analysis and into skepticism. It also humbled my newly found behavior analytic bent by having me read “As Nature Made Him”, a powerful reminder that no animal is a tabula rasa (blank slate), and thus directed me into Oyama’s developmental systems theory.

I spent my Junior year learning the basics of behavior analysis and I continued to read books old and new about autism and visit autism based websites. Then late in my Junior year I began to stumble across sites very critical of ABA. Some of these criticisms seemed vacuous at the time, and years later, I am even more certain that they are vacuous. However a few sites made good points. I began to interact and debate with these better sites.

This all went on several years. It was a tremendous education. Suddenly I had to go back, check references, and explain things in a logical manner. If I couldn’t do so, I had to cede the point and modify my worldview in small ways. I honestly think that I understand behavior analysis on the level I do compared to my peers, because I spent so much time debating the basics of it on the internet.

But more than that changed, I met people who didn’t talk about autism just as a collection of behavioral excesses and deficits. The reminded me what psychology often teaches, but sometimes forgets, that normalcy is a statistical matter, not a yardstick to which others must be bent. The autistic persons and their allies, who held these views, were passionate, strongly opinionated, and vocal. But they were also like all groups of people. They were not homogenous. Some argued using science and logic, some argued using ad hominems.

I was turned off. Many of the points weren’t just too tart; they were plain not very well thought out in the first place. I strongly disagreed with a lot of what I read or heard from these folks. Being called an “ally” (no one said “ND” yet) wasn’t something I saw a good thing, at this time. I told myself that “I drink no ones cool-aid”, whether it be behavior analytic or otherwise. I had a real set to with a few such people over certain issues. I came very close a few times to stopping my discussion with them at one point. I think that it was the presence of a few solid science based arguments that kept me around.

In September 2005, I started this blog. Initially most of my work was graphing or discussing the autism epidemiology. My blog was not so much pro ND as it was against the argument for an epidemic. It wasn’t even anti- quackery or pro- skepticism at first. These are changes that happened later.

However, this blog was relatively popular (in a small way) with autistic self advocates and their allies. But even at this time I wouldn’t have strongly identified with them. It was inclusion in the Autism Hub that finally caused the change in my view. The hub became a locus for other excellent science and logic based blogs on autism. Not mercury, Do’C, Prometheus, Autism Diva, Joseph, Caitlin, the gang at LB/RB, and Michelle (Love ‘em or hate, their work and criticisms are science based).

I think I learned that Neurodiversity is partly, but best summed up as remembering the old psychology lesson that the average alone does not = what everyone should be.

I think that I have learned that being an ally is very similar to being a true friend. Meaning that an ally both supports those with differences in terms of maximizing their ability to self- determine and being able to tell them when you think they are wrong, without hesitation.


Anonymous Ms. Clark said...

Thank you for including Autism Diva in your list of science based blogs. :-)

8:23 PM  
Blogger Joseph said...

That was an interesting read. Thanks for the link as well.

10:33 AM  
Blogger isles said...

I am always interested to know people's backstories. Thanks for this, and for your excellent ongoing statistical analysis.

7:30 PM  

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