I was recently reading a great blog post by Meriah Nichols called Coming to Terms with Disability in my Life and it got me thinking about all the buzz in the autism community about whether we should be trying for "Autism Awareness" or "Autism Acceptance". Personally I have always said "both" but after reading this blog post, I got to thinking that we need to add at least another one -- "Autism Accommodations".
First off, we DO need to be aware that autism is out there. Despite all the fanfare and promotions that Autism Speaks provides (personally I have some issues with them, but still think that they have done some good) there are still a LOT of people out there that are not aware what autism looks like or how different all those folks are from each other.
For this reason, I do not think promoting Autism Awareness is wrong. I think it is still necessary.
And yet, so many higher functioning folks out there just need to be accepted as they are. They have learned to cope with their brain wiring. Temple Grandin has said that she would not get rid of her autism if she could. I don't blame her. She has come a long way and accomplished so much with her gifts. For her, autism has been a gift. Albeit she had some serious difficulties to overcome, but she did overcome them. Why should she change? She should be accepted as she is.
For this reason, I applaud the Autism Acceptance folks.
I still think a lot of the neuro-diversity (ND) movement is inherently wrong. I don't think that just having autism insures that you are "gifted". For every Temple out there, there is at least one Joe (who struggles to find a minimum wage job with a coach just so he can have a modicum of independence) and probably one Alan (someone who will never be able to live independently and will need round the clock care from someone or most likely several someones).
For this reason, I think we need to add Autism Accommodation into the mix.
Joe needs accommodations. For him, this will most likely mean a coach to help him get the hang of a menial job. But once he gets the hang of this job, he will probably do it happily and without assistance for years to come. We need menial labor. Like it or not, a society that is composed entirely of college graduates unwilling to do menial labor will not survive.
Even if ever single one of those college students works as a dishwasher/busboy/waiter/clerk/bagger during school, there will not be enough. And there will always be those that financially do not need to do the work or are unwilling or unable to work in those type of jobs while in school.
But what about the Alans out there? What about those kiddos that cannot hope to live independently? Can we hope for more than accommodation for them? Is it so selfish on my part that I still want a "cure" for Alan.
- Note that I use the term "cure" in quotes. I do not believe he is diseased, but I do firmly believe that there is some fundamental bad wiring in his brain. I use the term "cure" because it is easier than typing out "correcting whatever is wrong with Alan's brain through whatever medical or therapeutic or pharmacological means become available in his lifetime" every time I want to express this feeling!!
So why are folks in the ND movement convinced that they know what my child is thinking better than I do? I am the first to admit, I have no clue what Alan is thinking most of the time. I know that he is thinking. I know he is processing his environment and trying to adapt it to accommodate his wants and needs.
There is so much that needs to be changed to accommodate him that I can't help but think it would be easier to change him. Not to mention, even if we could change every aspect of his environment to accommodate him, it still wouldn't be enough. He cannot live alone and I can't help but think that is a very lonely way to grow up. If that means that ND folks think I am trying to change the essence of him, then so be it. I don't completely understand why the ND folks are so convinced that because I want to "cure" him, it means I don't love him.