Still reading Uniquely Human. The series begins here, and the prior post in the series is here.
This chapter is about thinking about the future, cause we grow up and aren't static and such. In theory. To me it looks like four stories that share the similarity of "so we didn't know what was going to happen in adulthood, but adulthood did happen!" Which, just to be clear, is true of literally every child who survives to adulthood. No matter how much parents might think they can predict, and even if they're right about a good chunk of it, we don't actually know ahead of time what adulthood will be like. The future holds surprises for everyone.
Oh hey, a mention of the fact that autistic people have developmental stages and that autism is not some sort of stasis! (Autistic development: it's a thing.) And I like the quote from an autistic adult here, too. (Though I'm fairly sure this one is a case where he used "on the spectrum" to avoid "autistic" for a person who prefers some variety of identity-first language...)
Then we get four stories. In the first: conflation of tantrum and meltdowns, calling autistic traits red flags of something amiss (despite the statement that we shouldn't be looking at autism as a collection of behavioral deficits), personality being portrayed as in spite of disability (wuuuut), and some "will never" assumptions. Seems like eventually a pretty decent position, though we only get to find out directly what the parents think of it.
In the second: Oh, hey, a parent that goes straight to fear, not so much of, what is kid going to be like, but "What are they going to do to him?" (193). I approve. The things they do to us (the things some parents seem to want eventually done to their kids, once they grow up) are actually pretty terrifying, because as a society we're pretty terrible about disability. Matt's definitely still being portrayed in behavioral terms, terms where the behavior makes sense, but still in terms of behavior. Also he's apparently never been told he's autistic? The heck? I mean, yes, you want to interact with the person in front of you and not just the diagnostic label, but that doesn't make it cool to not tell the person about their own label. FFS, you should tell your kids they're autistic. They've apparently given him a good bit of the surrounding info, but there are certain words that it's important to have access to...
Third story: Immediate warning for use your words type scary stuff, yikes! Recognition that it wasn't OK, at least, but I'm shaking after reading about it. Remember folks: If you don't use your words you won't be indistinguishable. (But also remember how terrible of a goal indistinguishability from one's peers is, who else is forced to have "average" as their highest aspiration?) So we need an explanation of why parents would not mourn for an autism diagnosis, apparently? Mourning is some sort of default and not doing it, or only doing it briefly, is the atypical thing that needs to be explained? Not cool. Not cool. It seems they eventually figured out that trying to get rid of "autistic-looking" stuff for its own sake is a bad idea and that when we act autistic it's because we are autistic and this stuff is useful to us.
Fourth story: I don't actually have that many comments. A good chunk of the story has already been told in other chapters, just in different pieces. The intro is just another "oh no!" moment, and the story of dealing with schools that don't get it is familiar. Paying attention to a talent or interest when it appears, as they did, is important. I hope they got his permission to share this story, since he's definitely identifiable.
Part 12 here!
This chapter is about thinking about the future, cause we grow up and aren't static and such. In theory. To me it looks like four stories that share the similarity of "so we didn't know what was going to happen in adulthood, but adulthood did happen!" Which, just to be clear, is true of literally every child who survives to adulthood. No matter how much parents might think they can predict, and even if they're right about a good chunk of it, we don't actually know ahead of time what adulthood will be like. The future holds surprises for everyone.
Oh hey, a mention of the fact that autistic people have developmental stages and that autism is not some sort of stasis! (Autistic development: it's a thing.) And I like the quote from an autistic adult here, too. (Though I'm fairly sure this one is a case where he used "on the spectrum" to avoid "autistic" for a person who prefers some variety of identity-first language...)
Then we get four stories. In the first: conflation of tantrum and meltdowns, calling autistic traits red flags of something amiss (despite the statement that we shouldn't be looking at autism as a collection of behavioral deficits), personality being portrayed as in spite of disability (wuuuut), and some "will never" assumptions. Seems like eventually a pretty decent position, though we only get to find out directly what the parents think of it.
In the second: Oh, hey, a parent that goes straight to fear, not so much of, what is kid going to be like, but "What are they going to do to him?" (193). I approve. The things they do to us (the things some parents seem to want eventually done to their kids, once they grow up) are actually pretty terrifying, because as a society we're pretty terrible about disability. Matt's definitely still being portrayed in behavioral terms, terms where the behavior makes sense, but still in terms of behavior. Also he's apparently never been told he's autistic? The heck? I mean, yes, you want to interact with the person in front of you and not just the diagnostic label, but that doesn't make it cool to not tell the person about their own label. FFS, you should tell your kids they're autistic. They've apparently given him a good bit of the surrounding info, but there are certain words that it's important to have access to...
Third story: Immediate warning for use your words type scary stuff, yikes! Recognition that it wasn't OK, at least, but I'm shaking after reading about it. Remember folks: If you don't use your words you won't be indistinguishable. (But also remember how terrible of a goal indistinguishability from one's peers is, who else is forced to have "average" as their highest aspiration?) So we need an explanation of why parents would not mourn for an autism diagnosis, apparently? Mourning is some sort of default and not doing it, or only doing it briefly, is the atypical thing that needs to be explained? Not cool. Not cool. It seems they eventually figured out that trying to get rid of "autistic-looking" stuff for its own sake is a bad idea and that when we act autistic it's because we are autistic and this stuff is useful to us.
Fourth story: I don't actually have that many comments. A good chunk of the story has already been told in other chapters, just in different pieces. The intro is just another "oh no!" moment, and the story of dealing with schools that don't get it is familiar. Paying attention to a talent or interest when it appears, as they did, is important. I hope they got his permission to share this story, since he's definitely identifiable.
Part 12 here!
The unexpectedness, yes.
ReplyDeleteFor a given value of "survive"; "child" and "adulthood". [that is the nearest I will get to snark today].
And the "future" and "surprises". I suppose the current way people are told/referred is to minimise bad surprises? And then there's the whole surprise/secret/tricky people boondoggle.
"because as a society we're pretty terrible about disability".
This is something which needs to be highlighted always.
And I think Matt might be identifiable also. There are so many Matts of that age and size and other characteristics. And the Matts I know in community know who they are [person + diagnostic label + surrounding info]. To varying degrees.
Okay: story one and the flags. Jean Mercer did a great thing about the CHAT and the yellow flags [at least at 18 months - the CHAT is done again sometimes at 24 and 30 months - and somewhere the yellow flags may become red - but the guidance is to watch and do for general development and less fear].
Where's the quote from the adult about development autistic-wise?
"Who else is forced to have 'average' as their highest aspiration?" Some people "choose" average; others do it out of fear of being exceptionally bad or exceptionally good; or might be OK with their exceptionality but not with reactions and consequences.
The mourning bit definitely is not cool. If the non-mourners read this, how did they feel?
Glad they did eventually figure it out. Maybe it could help someone else do it earlier or from the start.
If you can change the "they" and the "do" - and I would like to see how Story 2 did this or is doing this - will stuff be better?
"They've apparently given him a good bit of the surrounding info, but there are certain words that it's important to have access to..."
Of course. And the whole "access to words"/"use your words": there's a difference.
I would get people to rewrite these stories humanistically as a creative response.