Far too little is made about:
*The developmental delays.I was not toilet trained until I was seven years old.I could not dress myself,until I was about ten,and I was at the "severe" end of the spectrum for problems in motor coordination,and development a MAJOR PROBLEM for me,that I only had to accommodate,and adapt to. Oh,and I also had profoundly delayed puberty.
*The headbanging.
*The eloping was also a big issue for me,until well into adulthood.I wandered away from my mother.I wandered away from school.I mean actually wandering away from the school property,and walked aimlessly for blocks,or miles.When I was in kindergarten,and first grade,I did this naked.And nobody cared.I had no idea where i was going,or why,sort of like someone with senile dementia.I would eventually come around,with no clue as to how I got where I was.
It was only after megadoses of GABA,and Acetyl L-Carnitine,that this,and a lot of my other more serious neurological aspects of my autism improved.Including improvements in my ability to communicate.
This in addition to all of the usual obsessions with flapping,spinning,jerking stuff up and down,breaking stuff,and setting fires.
Riddle me this,Batman :
WHY IS BEHAVIOR LIKE THIS SOMETHING TO CELEBRATE???
The answer is it isn't.
Nor is autoimmune disease.The autism activist community largely ignores,what is a major part of life,for me,and others with classic infantile autism.We have become largely forgotten.Severe inflammatory bowel disease,chronic pneumonia, and autoimmune interstitial lung disease,rheumatic heart and joint disease,and recurring meningitis,are some of the fun stuff I have been living with ever since I was a baby.This,to me,should be considered both part of the spectrum,as well as part of the diagnostic criteria for autism,but not be a deciding factor for everyone. But genetics,and family history should be.
But then this might push some "auties" "off the spectrum",and we can't have that can we ?
I was too out of it and unaware of things to be in on the formative years of autism activism.When I started to learn about just who made up the activist community,I saw no real place for me.There was a lot that I was,for lack of a better word, repulsed by.For me,the "it's not a disease,it's a way of life" argument is just as dangerous,and flawed,as the claims of crackpots like DAN!,CAN!,and the "vaccines cause autism" crowd.
If autism activism is ever going to be taken seriously,it needs to undergo some serious self-examination,become more inclusive,and realize that not every aspect of autism is something to celebrate.
These are my goals as an activist,who here is willing to help me ?
I second these. I am sick of seeing people who claim to be advocates for the autistic spectrum making silly remarks that pertain only to themselves, or to a small minority of autistics (much as it is annoying when Schafer makes the claim that only people who can't speak, write, or sign qualify as autistic).
In the gay rights movement, many of the more "normal" appearing advocates tried to distance themselves from the drag queens and the butch lesbians - I see today many autistics who can "pass" will try to distance themselves from autistics who cannot, autistics who usually have much more disability.
While I have never been considered LFA or anything (I don't put much stock into those labels), I was not able to clean up after myself after using the bathroom until maybe age 9, nor could I dress myself until age 6-10. I also remember numerous times I got lost in malls, or even at school, as happened a few times (one of which was a rainy day, and I was wandering around school grounds for over an hour). I have also wandered out the house in the morning a few times (probably would've been more, except I was a late-sleeper). And I had many tantrums, lasting hours upon hours, days upon days. Headbanging was a big problem, as were depression, and later, post-traumatic stress.
So, while I am proud to be autistic and would not want a cure, I would hate for people to think that by this I mean that autism is a wonderful dream everyone should have, or that it is not a disability, or that we are merely "quirky."
I once learned to blow my nose, briefly when I was about 10 after trying very hard, but I can no longer do it. Fixing myself meals, doing laundry, making a phone call, these are all very challenging to me. I also have seizures, which complicate things to a further degree. The thing is, since I had no delay of speech and score well on tests, particularly those of mathematics and writing (reading comprehension is exceedingly difficult for me, however, and I gain points mainly by guessing). Maybe that's why I wasn't diagnosed until age 10, and why I haven't received appropriate speech therapy until ages 17 and 18. I say that I have difficulty doing X, Y, or Z, and I am told outright that "No, you don't have a problem with those things, you're too high-functioning." I wish I could show them all the video Amanda Baggs made to explain the apparent contradictory nature of abilities and disabilities we have as autistic persons.
I agree that our advocacy cannot be effective without solidarity - a solidarity that understands and appreciates the diversity within the own community. After all, if we cannot accept the diversity among autistics, how can we expect NTs to accept the diversity among humanity, to include autistics into that big picture? I personally would feel morally tarnished to advocate such a shallow hypocrisy. I should get on writing that essay I've been meaning to write - that you don't need to be a savant to deserve human respect and services you need.