Sunday, December 21, 2008

Stephanie Lynn Keil, An Autistic Person, Offers Some Autism Reality

Today I received an interesting comment from an anonymous poster who pointed out that a previous comment on my site was spam. That exchange jogged my memory of a very kind comment, definitely not spam, that I received a few weeks ago from Stephanie Lynn Keil , an autistic person who, unlike some of the persons who frequent the media circuit alleging that "autistics" do not want to be cured or treated, has a different point of view.

Stephanie has been severely autistic, now considers herself moderately autistic, and lived an institutional life for many years. She provides a realistic perspective on the challenges facing the moderately and severely autistic and offers her perspective on Amanda Baggs and the media circuit autistic celebrities. Stephanie also speaks about her artistic talent which can be seen at her site Stephanie Lynn Keil.

Stephanie's kind, and informative, words to me, which were previously posted on the Study Suggests Post-Natal, Environmental Causes of Autism comment , follow:

Stephanie Lynn Keil said...

Hello! I just wanted to let you know that I love your blog. I'm 20 and I have severe autism (well, "moderate" now) and it's nice to finally find someone rational. I came to the online world hoping to find others like me but I was very disappointed to find I was one of the very few who actually has autism.

Anyway, I talk very little and have great difficulty with it but can obviously type well so my doctors are now thinking I may have some kind of verbal-oral apraxia. I live with my father and barely leave my house and the only people I communicate with are my family and I barely communicate with them (I recieve disability). I spent years in institutions literally lost in "my own world," hurting myself, pacing all day listening to my headphones, had rigid routines, talking only when spoken to and using words and phrases I borrowed, until I was 18. A doctor told me that at around 17-20 the fronal lobes begin to activate and that this probably helped to contribute to my "breakthrough," along with treatment and helpful people. Makes sense to me since autistic people obviously develop at a much different rate. I call it my "awakening."

Anyway, Conor is lucky to have such a smart and loving father. I'm very naive and I first I believed that Amanda Baggs was telling the truth, but then I realized that it was obviously a fraud. Low-functioning autistic people able to type exist, but Amanda isn't one of them. It's completely illogical and I don't understand why so-called "aspies" and "auties" believe it. Maybe it's because they aren't autistic enough to see the obvious logic and instead want to be a part of a "social movement." I don't even understand Neurodiversity: I don't understand politics or anything social and can't understand how all of these "severely" autistic people understand it either. What's the point? "Autistic community" is an oxymoron. I can't get past that.

Anyway, I go to the local mental health center for treatment (God forbid I get treatment) and am hoping to move into my own supervised community apartment soon. I'm also a savant, which means that everyone in "aspie-land" hates me. I didn't even know I was talented until I was 18, until my "awakening." I never told anyone what I was thinking, it never occured to me because I thought everyone was exactly like me and knew what I was thinking. So, obviously, no one knew and they assumed I was mildly retarded. My favorite thing is art (I also have music, language, hyperlexia and memory) and I'm planning on being a painter because I can't make money doing anything else; art is my passion, or in clinical terms, "obsession." I realize how lucky I am to have savant talents and it makes me sad that no one likes me for it.

Your blog is one of the few autism blogs I read because yours is actually rational. You have a severely autistic child but you're not part of the "mercury" parents and you love your son for who he is and make sure that he recieves good treatment so that he can have the best life possible. Sadly I've found this is a rare occurance. I have a severely autistic couisn whose mother has fallen prey to dangerous treatments. I like your blog so much I may make a painting for young Conor.

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Stephanie said...

I hope you continue to take no "sides" until we have scientific proof. There is no current proof for environmental causes but there is proof for genetic causes [twins, sibilings, etc; I have other autistic people in my family and about half of my father's side could probably be diagnosed with a mild PDD, but they are just "weird" and "unique"]. The majority of autism sites are either 100% "changes diagnoses and social views [neurodiversity]" or 100% "environmental [and bizarre conspiracy theories]." It may be a combination of both or it may not be.

I don't believe anything without scientific evidence and I don't much respect the scientific opinion of parent autism bloggers since most only present their view. I realize that parents are emotionally charged by their child's autism and cannot be rational so I try to stay away from armchair scientific research.

Having dealt with government agencies for most of my life I can say that it sure feels like they are severely screwed up and I have been taken advantage of more times than I can possibly ever know.

But, at the moment, I highly doubt the existence of an autism "conspiracy theory." There isn't proof for anything, of course, so I, and no one else, can say conclusively.

I just wish people were open minded and not so black and white. And I'm usually the one accused of "rigid thinking," how strange.

So, continue every side possible! Environmental, genetic, vaccines, alien abductions, whatever. There isn't much hard evidence yet so no one can say what causes anything but it's always good to have information from every side possible.

farmwifetwo said...

Have you ever read "Autism and the Myth of the Person Alone" by Bilken?? It's a research book and has 6 or so severely autistic person's writing in it. I think you'd find it an interesting read.

I too have read writings online by those with Autism that although they admit they wouldn't wish to be "different" in their thoughts, ideas etc... but wish they had better control of or yes, a cure of, some of the more severe symptoms.

As you know I sit btwn neurodiverse and cure. My goal is independant, educated adults. Even though I appreciate that it may not be possible for the younger to be totally independant as an adult.

I see RDSP's, although no longer stuck in budget-land are now stuck in banking-land... grumble, grumble... sigh... soon I hope.


Stephanie said...

I've wanted to read the book but can't find it at any library around her so I'll have to do an interlibrary loan.

As far as I know Lucy Blackman is credible so I also want to read Lucy's Story.

I definitely have doubts about FC but from what I've read in Myth of Person Alone no one currently uses FC. I've never used FC. I began e-mailing my psychiatrist and he (and everyone else) were very shocked at my thoughts and doubted they were even mine. But obviously they are!

I just don't understand "auties" and "aspies" because they are so different from me. I've tried reading Amanda Bagg's website and Michelle Dawson's (and others) but my mind doesn't comprehend language well at all. I don't understand much of what they wrote. I constantly have to look up words that I "know" but don't really "know" if that makes any sense. I find myself looking up words like "bright" and "social" (and etc.) and every word that isn't completely concrete.

I've read experts of Myth and I've understood the writing because I can tell an autistic person wrote it. Lucy Blackman's writing (and the few others I read in the book) is very concrete, visual and uses short sentences. Perfect.

I usually only read short poetry because it is very concrete and visual (and because I love it) (like Williams Carlos Williams) and "autistic writing" with concrete words and short sentences, which is often very poetic because of individual metaphors and they way they attempt to describe the visual information in their minds, because it is all my brain will allow me to process.