Alyssa Reads Uniquely Human: Part 11

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!

Alyssa Reads Uniquely Human: Part 10

Still reading Uniquely Human. The series begins here, and the prior post is here.
I'm now on the chapter entitled "The Real Experts."

So, Temple Grandin might be the first one to get famous this way, but she's not the first autistic person to write a book and get it published! Thanks to Mel Baggs for the detective work here, because sie compiled a bibliography of books by autistic authors, which is in Autonomy. Books in the same year or prior to Grandins include:

1. Eastman, David. (1985). Understand: Fifty Memowriter Poems.
2. Miedzianik, David. (1986). My Autobiography.

There's probably others, but one example is sufficient to say that she's not the first to do it, just potentially the first to get famous that way.

I think now is a good time to point out that there are issues even with the idea of articulate. I could have sworn Lydia (Autistic Hoya) wrote something about this and I can't find it ugh. But how often do we point out that neurotypical white men are articulate? For a different issue with the word, I did find the second piece I wanted to link, Julia's, "On Being Articulate." I strongly suggest you read it.

He points out three people who he says especially helped his understanding. Ros Blackburn (who he meets in Michigan at a conference she flew to from England in order to give a presentation that's described as "experiences growing up with autism," which makes me suspect she flew from England to be a self-narrating zoo exhibit. Michael John Carley, who founded GRASP. Stephen Shore, who recently joined the Board of Autism Speaks. You know, the organization that super duper needs to not, that I have an entire tag here devoted to why they are terrible, and that are work-stealing, white-texting liars? No one on this list is radical. Everyone on this list is white. Everyone on this list has at least a masters (Ros has an honorary masters, not sure if she has one from going to graduate school.) Everyone seems to be middle class to rich. The same can be said of Temple Grandin. I think they're all cisgender and straight, too.

(And yes, that means that including me would not fix the representation problem I'm pointing to here. I'm white, at least middle class, and have a masters degree in mathematics. I'm queer, but still, I'm not going to pretend that would lead to my helping with this issue.) I know (of) Autistic activists and writers who would, though, by being poor, by being a person of color, by being queer, by not having had access to higher education, or by several of the above. Kassiane, Lydia, Amy, Finn, Morenike,  the entire contributors list for All the Weight of our Dreams, and more. Always more. And not to be tokenized. Don't just listen to one or two and call this your "diversity" requirement.

Now, since that's about who he chose to write about rather than what they have to say (and what he chooses to relay to us/how he chooses to relay it to us,) let's get on to that.

What Ros has to tell us is good. She knows stuff about herself and tells people what she needs. Cool! The anecdotes her statements are coming in between are illustrative of what we do (behavior) but is a bit of a mixed bag on providing internal processes. 

Michael's story starts more with a biography than anything else. Also, "You might not guess that he has an autism spectrum disorder until he begins speaking about something he is excited about." (180). I assume this is supposed to be a compliment? It is not a compliment to pretend we are not things that we are. I'm glad Dr. Prizant pointed out that only two actual people on the spectrum were called to testify (because that is way too low a number) and would have liked some reference to why there were even the two. Originally there were none. Then autistic people made a fuss. (Ari Ne'eman was the other, and this reference to Ari is the reason he appears in the index.) 

I feel like Dr. Stephen Shore's story is again largely a biography interspersed with anecdotes, illustrating lessons that he may well have taught explicitly, but using behavioral examples. I did like the bit where he teaches piano to spectrummy kids but not neurotypical kids, because "he finds it difficult to understand how they think and learn." That is, autistic/non-autistic as a sort of cultural barrier.

Having read the chapter... I can't say this is really a case of treating us as experts on autism in general (and some of us are general autism experts rather than simply being experts in our own lives and our own particular autistic ways of being) but of us being framed as spreading particular messages that relate specifically to our own life experiences in the hopes that they generalize. He says we are experts, but devotes far more space to showing our behavior in anecdotes that illustrate things than to allowing us to speak for ourselves, as the experts he says we are. We're articulate... so he doesn't relay much of what we actually say, and the readers don't have to listen.

Part 11 here!

Alyssa Reads Uniquely Human: Part 9

Still reading Uniquely Human. Please let it be over soon. (This is chapter 8. There are 12 chapters. I get to The Real Experts chapter after this.) The prior post in the series can be found here, and the series begins here.

Here I say that you are flat wrong, Dr. Prizant: "All parents aim to be the best providers, the most understanding caregivers, and the greatest supports for their children." (157). No. You are wrong. Plenty of parents see their children as accessories or extensions of themselves, and plenty of parents draw on their children for support rather than the other way around or even the give and take that could be appropriate as a child gets older. Don't pretend that all parents are trying to be the best for their children. Trying to appear the best to outsiders is not the same thing. Autistic adults can tell you all about the martyr parent trope, because it's a thing, and wanting to get as much attention as possible for the extremes your kid reaches is a thing whether or not the parent cares if the kids extreme was good or bad. Plus the general issues re: child abuse and erasure that aren't specific to disability. Stoppit.

Now, a parent turning to this book probably is trying to be all those things. Doesn't make this an OK statement.

I won't argue with the statement that "it can be more difficult for a parent to attend to a child's needs when the child is difficult to read" (158). I will point out that that's not, strictly speaking, an autism thing. Autistic parents often have more trouble reading their neurotypical children and less trouble reading their autistic children. Neurotypical parents often have more trouble reading their autistic children and less trouble reading their neurotypical children. That's, at least partially, a cross-neurotype issue, similar to a cross-cultural issue.

I actually do agree that community can be useful for parents, because community can be useful for basically everyone. I think parents need to be very careful what kinds of communities they seek, because martyrhood seems to be contagious and so does dangerous quackery. I'm not convinced I'm cool with a half-full vs. half-empty metaphor with autism, though if you wanted to tell me my cup is filled with a different beverage... (please not carbonated, please not carbonated...)

I am definitely not cool with the primary problem presented re: "direst prognoses: what the child will never do or accomplish." The presented problem is that it's not tender and that it can affect perceptions of the kid. The frankly bigger problem? We're talking about what a child will supposedly never be able to do based on their abilities in childhood, when we already know for a fact they're disabled in a way that means atypical developmental trajectories are a thing. As in, predicting what an autistic kid will never be able to do works even less well than predicting what a neurotypical child of the same age will never be able to do. It's flat wrong. (Autistic development is a thing!)

From the story given for "Insist on Respect" I think primarily he's saying it's important to respect the parents. And when it comes to parents who really are trying for the best interests of the kid? Sure. What about respecting the autistic person? Seriously, the ways these stories are shared (and with enough info that one of my commenters has figured likely real names for quite a few, since the first names don't seem to be changed...) is not consistently respecting the privacy and dignity of the people being written about. I don't care that the parents think trying to pee in the display toilet is a funny story, I care what the kid thinks of it being shared. (This one hasn't got a name attached, thankfully.) Like, yes, these parents are saying they want to be respected as parents and that they want their children to be respected, but just like I don't trust professionals as far as I can throw them, I don't trust parents of autistic kids to trust what is and isn't respectful of those kids as far as I can throw them. Not while they're making public the stories and videos that they do.

OH FOR PETE'S SAKE. WHY ARE YOU CONFLATING TANTRUM AND MELTDOWN. You should know better. You should know better. You should really know better stop stop stop. Also, talk about listing "deficit" behaviors that a parent gets to stop through, apparently theater? I thought you said you didn't think we should describe autism as a list of deficit behaviors? Follow you own logic.

Also I gotta say I mistrust folks following the "gratification and inspiration that comes from helping others." (172). Inspiration porn is a thing. Also, the state director for Best Buddies was all inspirational and such, and she was also the most condescending of anyone I ever interacted with by typing in person. And special education teachers? There are reasons that I don't trust currently practicing special educators, including the fact that they seem to think acting "less autistic" is a good goal. Come to think of it, that's the same reason I don't trust clinicians, including Dr. Prizant, who despite a lot of nice words on top, is totally still writing about "emerging" and reducing scripts and other things that are at best, code for acting less autistic rather than saying it straight out.


Part 10 here!

Alyssa Reads Uniquely Human: Part 8

Still reading Uniquely Human. Still going blarglefeh at behaviorizing descriptions of autistic folks, even when the stuff we're doing is stuff that he's acknowledging has use. The prior post in the series is here, and the start here.

Within the book, I'm now on what he calls Part 2: Living with Autism. I am not even going to try to resist the snark option there. I have a cat named autism and she is soooo hard to live with. And when I was asleep, my autism got away and shaved the dog. Disembodied autism is not a thing. Disembodied autism is not a thing. Disembodied autism is not a thing!

Teachers and aides that we feel safe around or who even help us feel safe when other stuff is going wrong, however, are a thing. One of the teachers who's been like that for me was even a formal special educator. (Emphasis on former here.) She was my residence director in Tianjin, and she was the only teacher or administrator there who didn't panic when I melted down or decide that the meltdowns were tantrums. (She was apparently worried the time that I melted down, was alone, and she was several hours away over a weekend. Which is reasonable, since she had no knowledge of how safe I was alone during/after a bad meltdown. Pretty darn safe, by the way.) I've had a couple others at college, generally mathematics or engineering professors. As in, absolutely not trained in any "therapy" or "behavioral management" stuff "for autism."

What do all these people have in common? They're able and willing to notice both the things that I can do myself and the things I need support with, both my abilities and my needs, at the same time. They're aware that neither cancels out the other.

Concrete example: My ability to speak gives out on me pretty regularly. The first time it happens in front of a given person can be scary, because I don't really know how they're going to react. I'm also a graduate student. My ability to speak gave out on me during a graduate math class with a professor who didn't yet know that could happen, right after he asked me a direct question. (Timing!) I was able to communicate that I wanted a whiteboard marker (standing up and reaching for a marker is reasonably easy to notice, but I couldn't reach it so he asked if I wanted it and handed it to me after I nodded.) I started writing my answer instead. I wound up writing a lot in that class, and the professor was totally able to recognize both that the writing instead of talking was sometimes needed and that I was capable of learning the material. (No, I don't think that should be unusual. But it is unusual.)

I respect that he was willing to include a parent saying "I just want to tell all of you who are parents of young children that you can't trust professionals as far as you can throw them" (138), considering that he is a professional. I've got to wonder how he'd react to autistic adults similarly not trusting professionals as far as we can throw them, and how he'd react when he is the professional we're not trusting, but I've got no evidence in any direction there.

As far as the traits or instincts he's written for who tends to "get It" go:

• I'm cool with the way he describes empathy but still twitch at the word because of Simon Baron-Cohen and Theory of Mind associations.
• I feel like the question re: stimming is likely to be for the purpose of reducing stimming by way of reducing the perceived causes, which isn't cool when the stimming is how we're showing happiness or excitement. (And folks who think of stimming as negative/as purely a reaction seem likely to not realize the difference between happy stimming and not-happy stimming.)
• Oh hey recognition that we have body language and that some people (people who "get It" as a subset of this group) can read out body language. That's cool.
• Yay humor! (Make really really absolutely sure that the humor is considered respectful by the autistic person, not just by the family or the professionals we can't trust as far as we can throw them, k thanks.)
• Yay pointing out that strict behavior plans and therapy programs can cause harm by not reacting to the autistic person's reasons for acting.

I think I like this principal, who "understood that it wasn't going to help this particular boy for yet another adult to tell him that he was behaving poorly or that he needed to settle down." (142). Does that help anyone, really?

I also like pointing out that professionals can cause problems through stubbornness and inflexibility. (HEY autistic folks aren't the only ones who can be stubborn. Also, trying to out-stubborn an autistic person is probably not going to go well...)

The problems he points out as far as how people fail to "get It" are pretty good. I'd like to add that it's not just the parents hopes and dreams they are often insensitive to. However insensitive to those goals educators can be, they tend to recognize that those goals exist. The idea that we, the autistic students, could have our own goals that are not the same as those on the IEP or those of our parents seems not to register as even a possibility. Remember whose life this really is. I'm not living my mom's life or my dad's life or my teacher's life. I'm living mine, and at the end of the day it's my hopes and dreams that matter. Not my parents hopes and dreams for me. That is: remember our perspectives and shoes.

Continue to part 9 here.

Alyssa Reads Uniquely Human: Part 7

I'm still reading Uniquely Human. I am getting very tired of running into the Exact. Same. Problems. every chapter. Can I just at this point write, "Assume every description and anecdote is written in a behaviorizing way, or at best partially behaviorizing," have y'all take it as a given criticism, and write that fewer times already? Please? And since I've linked that same Disability in Kidlit article for the last several parts, can we take it as background material y'all reading this post have also read?

Anyways, the preceding part of my review is here, and the series begins here.

I take the usual issue with the anecdotes.

The comparison of learning social rules and learning to read body language to learning a second language in adulthood is actually quite apt. I've heard quite a few autistic adults compare body language to a foreign language, and not a particularly logical foreign language. (I think by logical vs. not logical in a language, the metric is how many exceptions there are to the "rules" of the language? English, for example, is not that logical because the exceptions have exceptions and we rifled through the pockets of other languages for spare grammar.)

Another side of the "foreign" language bit is that, well, autistic body language and neurotypical body language are different, even within the same macro culture. Neurotypical people usually can't read my body language very well, and often can't read it at all, because they aren't used to interpreting autistic body language through learning what things mean and tend to simulate what would it mean if they were using that body language. It doesn't work well, because they are very different from me. Autistic people tend to be better at reading me, and I'm better at reading other autistic people, but since most people are not autistic, it looks like the non-autistic folks can read (general) body language and autistic folks can't.

Dr. Prizant notes that one problem we run into is that we learn the rules and the exceptions, but it's another (and again unwritten ugh) rule that "generally people don't talk about the rules, they just follow them." (115). Which I'm going to point out is something in neuronormative culture that, yes, it's useful for us to know, but it's also something where changing that expectation is a required part of meeting us anywhere but the 97-3 split y'all like to pretend is halfway.  He doesn't point that out, by the way. I think he's still about helping us fit into a version of the mainstream where some people are a little more understanding while teaching us how to fit, rather than realizing that the mainstream is going to need to change big time.

Some more anecdotes follow with the usual problem. Blech.

One good point here: a problem with getting an assignment done could result from the assignment not making sense to the student. (Been there, done that, didn't get the T-shirt because the paperwork involved made no sense to me and no one believed me enough to help me with the paperwork...) Which is actually sufficient explanation on its own before shoving in the extra assumption that we don't realize it's a good idea to do class assignments and please the teacher. (Hint: I know full well that not doing an assignment is a bad idea. I'm still not going to push myself into a meltdown trying to do stuff I can't do, unless I know for a fact that letting the teacher see that result will get them to stop pushing me to try the thing I can't do. Self-preservation, not lack of social awareness. You can get a decent idea of my internal panic around the language utilization reports for my study abroad here, here, and here. The eventual resolution was "your residence adviser will help you" followed by "after her report from the attempt, we're not making you do those anymore." )

Also I feel like this tweet from real social skills is relevant here, since accessibility of assignments is getting discussed, even if it's not really getting framed that way:

Treating an accessibility problem as a behavior problem ends poorly whether or not you use punishment to address it.

— RealSocialSkills (@rsocialskills) June 10, 2016

Good idea pointing out that labeling pictures with emotions is different from understanding emotions or recognizing our own. (Did you know that we can't actually see our own faces to see if we look like w're smiling without the aid of a mirror?)

Soooo Lovaas got mentioned, but the apparently problem is that he insisted incorrectly that the ability to make eye contact when asked was needed in order to learn other skills. And that is a problem. But that as sole cited problem is really icky. (This is the guy who thought electric shocks were a good idea. This is the guy with the "you've got to build the person" idea. Very ew. Talking about him as an autism specialist and not as a horrible human being who didn't think we were human? Thanks, but no thanks.)

I have to wonder how much of what he's interpreting as not having the instinct to communicate what's bothering us is actually:

1. Compliance training having explicitly taught us not to communicate what is bothering us.
2. Difficulty initiating communication, which is right in DSM-IV and therefore shouldn't be a surprise to a clinician. 
3. #1 making #2 even more of a thing.

Continue to part 8 here.