Like many others in the autistic community, “cure” is a significant four-letter word for me. And most of the time I am quite comfortable saying that I am comfortable in being myself. I like that I can become passionate about certain topics and spend large amounts of time on them. My research papers for school generally turn out to be at least two times longer than required, and far more detailed, and I wouldn’t want that any other way. I hope this will serve me well in the future. I like being able to provide myself with certain kinds of sensory stimulation, being able to occupy myself with just a small piece of paper or a string in my hand. I like living a lot of life inside my own head, which is often far more interesting than my suburban surroundings. I enjoy my kind of life. Most of the time.
But to be honest, sometimes it can be really hard for me to maintain the anti-cure stance. When I’m having a full-on meltdown about something which a “normal” person would handle in stride, it is hard. Hard not to think that yeah, there is something inherently “wrong” with how my brain works. Hard not to think that my “wiring” is just causing myself and people around me suffering.
That’s not how I feel most of the time, when my life is generally within my own control. But another 3% of the time, it’s hard. I guess all of this is to say that I do understand why some autistic people might want a “cure” for themselves, or why parents might want a “cure.” I prefer to think of my own goal as simply “coping”—as a person on the spectrum, but I can’t deny the difficulties, not all of which are entirely extrinsic. I do seek self-improvement, most definitely. But so do a lot of other people, autistic and not.
I am anti-cure. And whenever I see pro-cure advocates dismiss the neurodiversity movement as a bunch of “shiny aspies” with rosy lives who have no idea what suffering is like, I get irritated. While I’ve had it pretty good compared to a lot of other autistics, I know very well that certain situations can trigger significant suffering for autistic individuals. I do want to reduce my own difficulties, and those of others. But I want to do it as myself—as hard as thinking that can be for me to believe that in my worst moments.
This isn't really a conclusive argument or anything. I'm still working out these issues for myself. I believe in acceptance of autism--but acceptance is a process.
Thursday, July 17, 2008
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7 comments:
You know, for me, I kinda do have those days where, in a really tough situation, I just wish I could have days where I wasn't dealing with so much more than many of my peers.
But, for me, I do consider that in terms of "wow, I wish I had better skills for dealing with that", and many times I have developed them with effort. Having gone, in terms of skills, from one side of the spectrum to the other (diagnosed as classically autistic, and I still fit that label, but you wouldn't know it and the reasons why I wouldn't now be Asperger's instead are more technical), I tend to see things that way as a way of making things easier, and they don't really change who one is (over time, I have remained alarmingly similar, and actually pretty predictable to myself).
At this point, across the spectrum, a lot can get better for autistics for that ability to manage those stressors. That's not fundamentally different per se than anyone else, but the particular stress management skills that those on the spectrum might want might be better emphasized, rather than hoping for different people instead.
I find it easier to make a distinction between cures and treatments. I do think therapies for learning issues and life management skills (such as some modern ABA practices, FloorTime, Davis Orientation and Dyslexia Counseling, etc.), as well as pharmacological treatment for stress or anxiety induced illness, can be useful when applied to children and consenting adults on an as-needed basis.
The key word here is "consent" - that of the patient or, in the case of minors, that of the parents. These measures are not cures, they are treatments for specific issues or maladies arising from our neurological difference from the "norm" in terms of learning and coping strategies which most are often ill-equipped to deal with. It is our responsibility to help teach others how to deal with us.
Like Phil Schwartz, Ari Ne'eman, and Amy Gravino, we should all try to constantly grow as human beings and find strategies that allow us to successfully integrate with the world. Being "anti-cure" should not prevent us from doing that. It is our responsibility to ourselves.
My life is lots of crap, but I never see any point in blaming my wiring, rather the shit this world is made up of aswell as my bad decisions.
;P
You know, "normal" people have meltdowns too, but about different things... usually things that an autistic person would handle in stride. I've been meaning to write a post about that.
Anti-cure is not anti-support - that is what pro-cure people don't acknowledge. To cure means to remove an important aspect of a person, suport means teaching techniques and providing accommodations which help the person reach xyr potential as xyrself, with the framework of xyr self left intact. It's very hard to draw a line though, as some people, especiall children, are adamantly resisting the least bit of improvement, and feel that they'll lose themselves whenever they do something that's in line with social customs (I was one of them earlier). But dog-training methods, elecrtic shocks, dangerous drugs given for just being yourself, and chelation are obviously never acceptable.
On the surface, I'm living a normal life, e.g. I'm not institutionalized, I could graduate high school (albeit with a little help), I'm in the process of becoming a university student and I even have valuable friends (most of them aspies though). But I have hard times as well. Which is clearly not an indicator of a need for cure, rather, it's a sign of my financial conditions being poor from birth, and also a sign of incredible amounts of intolerance and ignorance in the society I live in. Okay, maybe there are some intrinsic things, like my heat intolerance (I feel like dying now as I type this, in 30 centigrade), but these are just "side effects" of my AS, and there are many advantages that help me forget these side effects that I would kick anybody in the groin who'd want to cure me.
(Sorry for the inconsistency, as I said, I'm close to overheat...)
As Lewis, a 13 year old boy with autism says at the end of this free autism spectrum podcast entitled
"Special Feature Interview with Douglas Giesel and An Update Interview with Lewis Schofield"
at www.mic.mypodcast.com....
"You can change a lightbulb, but you can't change AS."
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