I have kept this post “alive” even though it is redundant since it was originally a Facebook post that I fleshed out to the full blog piece above (January 24). But I didn’t want to eliminate the comments attached to it. But if you read the full blog post, you can skip this.
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John Elder Robison’s latest blog post is: Does Mom Know Best, or Do We Presume Autistic Competence? Questioning societal presumption, when a person is “too disabled to decide.”
In response to Amy Lutz telling John Robison her son’s “…cognitive impairments are too severe” for him to choose where he lives, Robison writes:
“I had a hard time believing that. My dogs can pick which place they want to sleep, and they are non verbal with pretty low IQ. Yet they have no difficulty with that choice. In fact, most every animal chooses a place to sleep on its own. Was I to believe her autistic child lacks that ability?” Lutz responds by offering Robison the opportunity to spend time with her son.
Without commenting on Robison’s dog analogy (I’d rather not step into that pile), I have to wonder why he, and like minded advocates, find this idea — that many autistics would not be able to make such an appropriate choice for themselves — so hard to accept. I would extend Lutz’s offer to anyone who shares Robison’s view, to spend time with Ben. Not a day, just an hour would be more than enough. Or with any other resident of Ben’s group home. I have a hard time believing an intelligent person, typical or autistic, would suggest any of them would be able to make decisions for themselves regarding something as huge, for example, as where they live. It would be absurd.
The crux, to me, is this: How many guys and gals like Ben has Robison, or like minded advocates, interacted with?
Many Aspergers/high functioning individuals are out in the world, and can fully express themselves. We “typicals” interact with them, and they with us and each other.
Not our guys. Ben is far less “visible,” and what he is or isn’t capable of won’t be obvious to anyone watching him eat a 5 Guys burger.
High functioning autistics aren’t just in the world, they are of it. Ben and his peers live in the world, but are much less “of” the world, like it or not. Ben’s very survival, let alone a good life, depends on us, his Mom and Dad. Spending time with Ben, I believe, would turn doubt into acceptance of that fact.
Many autism advocates prescribe what they believe is right for ALL autistics, regardless of their true expertise and experience with the entire range. Parents like us are speaking for one autistic, the one we know best, and the one for whom we can best advocate.