So I haven't written here in a while. It's been a crazy few months, which I will update about in full later because I have other things I want to talk about right now.
I was browsing one of my forums today when I came across a thread about a college student with asperger's syndrome. A discussion was being had about how the RA could teach him a few basic social rules if he wished to help him be more comfortable living in the dormitories at the college. This led to one man coming in and posting the following...
"This is a genuine question and I hope it isn’t taken otherwise, but can Aspergers be resolved through therapy or some kind of social training? Went to a business dinner last night and had someone seated at my table who clearly had Aspergers, given the things described here. It was the most awkward night and frankly a waste of time for everyone else at the table to have to deal. I don’t understand how a 35+ year old man doesn’t understand that they can’t ask a woman out on a date three times in one evening when she obviously isn’t interested, can’t ask her if she does drugs, can’t ask if she has any interest in starting a business and when she says no, a half hour later ask ‘so you’re still not interested in starting a business’ and never senses anyone else’s discomfort as a signal to stop talking. I realize that people with this syndrome need to be taught how to act, but can’t that be done by parents from birth through age 18? I’m not clear on why this is an issue at college, for RAs etc. I also don’t understand how one can act this way and stay employed, except in certain very academic professions where academic knowledge trumps everything else -- he was in a financial field where the ability to hold a room matters as much as your intelligence. "
I provided for him the following response, which I wished to post as I think it may be helpful for others who struggle to understand as the man above did, and the desire to share this is my reason for updating the blog today...
"I understand why you'd ask that question. I know it's very difficult to understand. I have autism myself, but mine is quite mild and sometimes even I struggle when I am around people with much more severe autism than mine. Some autism symptoms can be helped through therapy, but the therapy required is intense, it is difficult, and it is very difficult to come by. As has been mentioned, asperger's was not a recognized diagnosis until not all that long ago and before then the people who had it were left with no supports. Even now we are well behind the times, my own wasn't diagnosed until I was well into my 20s because none of the doctors I had seen up to that point were educated enough on the subject to see it.
And let's say, for arguments sake, someone IS severe enough to be more easily diagnosed in this day and age... testing costs a fortune. It can be anywhere from 3 to 5 thousand dollars. Insurance usually doesn't cover it. Finding doctors that do the tests, especially on adults, is extremely difficult. Autistic people have a VERY hard time advocating for themselves and navigating this system that is difficult for normal people can be impossible for them, if they did not have the experience of trying to get diagnosed as children so that their parents could advocate for them (which I and your colleague obviously did not have, as autism diagnosis was too new when we were dependent children) it can be impossible to do.
And then let's say you get the diagnosis. Services for adults are almost impossible to find. I have yet to find ANY doctors, ANY services, and ANY help that actually applies to me-- it's all for children. Much of the medical world is under the impression that autistic children never grow up into autistic adults. Check your local library for books about autism-- I bet all but one or two of them will be about children. I've been actively looking for someone to help me learn how to cope with my autism symptoms since I was diagnosed almost two years ago and I have yet to even find a psychologist who feels equipped to administer talk therapy, or even a general practitioner who can manage to treat me when I have a cold without being grossly offensive because she doesn't have a CLUE what asperger's syndrome is and tries to tell me to just get over it. And if you can FIND someone to administer services for autism, it costs a fortune and-- you guessed it!-- often isn't covered by insurance.
And let's say you managed to get diagnosed AND find doctors to care for you (at this point you've probably won the lottery as well, so insurance isn't an issue)... autism is not curable. It often takes a very long time in very intense therapy to even see a marked improvement. It is a very, very difficult struggle.
I'm not saying your colleague isn't obnoxious and that he couldnt do better, but you have to avoid the impulse to liken him to a bratty child. Autism isn't caused by bad parenting and cannot be cured or even drastically improved by good parenting alone. It requires intense medical intervention, preferably from a very young age, and that intervention is EXTREMELY difficult to get. It's rare, it's expensive, there are a lot of quacks out there who still haven't learned about high-functioning autism and yet will try to treat you anyway and set you back further, and by the nature of the disorder it is very difficult for autistics to seek and coordinate care at that level. It's not just like your parents never telling you not to talk with your mouth full, it's like trying to permanently relocate to a foreign country where you don't speak the language and no matter how long you spend there you CAN'T assimilate. It's like trying to learn how to verbally pronounce words in a foreign language when you're deaf and can't hear what anyone is saying to you. Getting better than he is is the struggle of that man's life and is something he is going to grapple with, painfully, for the duration of his life. Try not to judge him more than absolutely necessary. It's not easy to be this way."
Saturday, October 8, 2011
Sunday, January 9, 2011
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