Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Thursday, June 2, 2016

Alyssa Reads Uniquely Human: Part 1

I'm reading Uniquely Human: A Different Way of Seeing Autism, by Dr. Barry M. Prizant, with Tom Fields-Meyer. I'm not entirely sure what the "with" means here -- did they write together? Did Tom edit for narrative, since telling narratives is apparently his thing? Dunno. I'd like to be able to like this book, since it's pointing out that trying to eliminate stuff we do just because it's autistic isn't a great idea, and since it was recommended to me.

Anyways, I know how my commentary tends to go, and I'm dividing this up. Part 1 is all the stuff that isn't in a chapter: cover, reviews that are printed in the book, book jacket, contents, authors notes, introductions, the index, that sort of thing.

The first thing I notice is that Temple Grandin loves his approach. That makes me suspect that the book is 1) going to be better than, say, Autism Speaks stuff, but 2) probably aspie elitist1

On the book jacket: Everyone's using person-first language2, and it's all children3 with, not people with. That's expected, but not a great sign. I know Michelle Dawson is good, but I'm not so familiar with Geraldine Dawson. Are they related? I don't know the Rabbi. I know Tony Attwood, and his appearance is not a good sign. Famous, claims to be an ally, and his comedy is full of jokes that really are at the expense of the autistic people in the room. Doesn't like having this pointed out. I'm not sure who Elaine Hall is, but I approve of her stating that the true experts are autistic people. I get very nervous seeing that she founded something called the Miracle Project and wrote a book about unlocking autism. 

Moving to the inside of the book jacket: We start with criticism of how autism is typically "portrayed as a checklist of deficits," which is a good sign because that's 1) typically what happens and 2) a big problem. The shift Dr. Prizant is suggesting, that we think of autistic behavior as coping methods for an overwhelming world, is not new but the idea of explaining some of what we do that way is reasonable. My isolation headphones, for example, are exactly that. 

The inside "advance praise" comes from some names I know and some I don't. The autistic people on that list are both white authors who run aspie elitist, and I still see the goal of "help" to "gain a greater social understanding," as in helping us learn to understand (and presumably imitate) how other folks social. Which is admittedly useful, but without helping other folks understand how we social too it's one-sided. I'm thinking back to "What would meeting you halfway be?" here. 

The table of contents doesn't have much that jumps out at me, though one chapter title does: The Real Experts. Since I totally just did the cover art and wrote a contribution for a book by the same name, I take a glance. Seems to be about actual autistic people/people with autism, which is good. I don't know the language preferences of the specific people so here's both just in case. (I also notice page counts: there are 12 chapters, and only 1 occupies fewer pages than The Real Experts. Hrm. If we're the real experts, wouldn't we get a bit more space?)

Looking at the author's note, I see that it addresses some of the language cues that made me nervous. He doesn't say why person-first language is his preference, just that it is. (Why?) That's not satisfying. The occasional reference to Aspergers I get. Given how publication schedules and writing work, he probably wrote a good chunk of the book (the draft submitted to the publisher?) before the distinction was dropped in the official release of DSM-5. But! The way he's using it lines up with an error that is a personal pet peeve of mine. Just because a person is tested as having average or higher cognitive and language ability does not mean their label was Aspergers under DSM-IV, or that it should have been4. *Waves hi.* Ding-dong, you are wrong.

In the introduction, Dr. Prizant expresses concern over the environment of fear and anxiety around autism, where parents are super scared. I'm glad to see that, because yeah the fear is a problem. Of course, he's not really saying anything about where this fear comes from. (Because doing so involves pointing at colleagues, at organizations where colleagues work, and at resources he suggests?) Also, when asking “which treatment will succeed?” can we also ask what success means?

I like many of his examples here: pointing out that everything he's seen an autistic person do, he's also seen neurotypicals do, if at a different age or under different circumstances is a move I approve of. (I also think it's important to get into the differences of when and why, but that's different from thinking similarities between autistic people and non-autistic people are irrelevant or shouldn't be discussed.)

I like the statement about learning from autistic people, though I have to question how “rare” the “ability to explain their own experience of having autism” really is. Is it that it's rare to be able to? Or is it that through experiences where professionals conclude our ways of being and acting are to be eliminated without concern for why, and through getting asked the same questions again and again from parents who want us to translate their children, treating us as resources rather than people, we learn not to explain this stuff. It's ignored because our supposed lack of theory of mind means we “can't understand what it's like to be ourselves,” and it's ignored because the parent really wanted to know how to get the kid to stop rather than what the purpose was, and it gets more repetitive than even we want to be. Remember that explaining why we did the thing the staff person didn't like can be taken as further noncompliance. Are you sure it's that we mostly can't?

I now turn to the back of the book. The resources guide looks like a mixed bag. A lot of the titles make me question the perspectives and goals of the authors – intervention “for autism” is rarely a good sign, for reasons that Dr. Prizant actually pointed out in his own introduction, please follow your own logic. Floortime is “gentler” but definitely about engaging with the kid in their way in order to try to draw them into engaging and acting in neurotypical ways. I would be shocked if anything with “unlocking autism” in the title is decent, and I know enough about the social thinking curriculum to run the other way, far and fast. Pointing to AAC resources is important5, though, and Paula Kluth writes good things, including You're going to love this kid. I follow PrAACtical AAC and they're mostly good.

Websites and organizations are again … interesting. Anyone who suggests Autism Speaks as a resource rather than as a group to avoid loses MAJOR points in my book6. If you're talking about the fear and anxiety around diagnosis in the same source where you suggest them, you lose points for inconsistency as well as for suggesting that organization. You don't get to have it both ways. Have you read the stuff they put out?? ASAN and GRASP are at least run by actually autistic people. Autcom has some autistic leadership but after parents who used to be board members wore badges indicated they still were while defending inaccessibility to autistic people, yeah, I don't trust them. Also Autism Society of America impeded an autistic attendee in contacting police after she was stabbed at their conference7. That's a thing that happened.

Without any explanation of what “meaningful progress” means, I can't speak to the SCERTS model. Maybe I'll see more about that in the chapters? I'm a bit nervous when social communication comes up.

Looking at the index now:
Huh. The names of autistic people I recognize look awfully white and middle to upper class. Also fairly aspie elitist, and none of them show up on that many pages. I wonder how much their ideas are actually getting used, then. Echolalia as communication gets quite a few pages. So does adults as a cause of emotional dysregulation. Trauma is mentioned. These seem like good things.

After reading the not-chapter things, my bet is on:
"Pulls decent to good ideas from autistic adults and repackages them to be palatable for a wider (parent-centric) audience, but chooses autistic adults who are white, middle to upper class, and usually aspie elitist. May or may not cite autistic sources properly, depending on how much he's really pulling from them. Also doesn't follow his own logic of re-interpreting things as not pathological as far as he could."

Part 2 here.


Footnotes!



1 When I say aspie elitism, I'm talking about something very like what Mel Baggs means by aspie supremacy, but without needing the claim that the “aspies” are better than the neurotypical people – it's just about the relationship based on perceived/assumed place within the autistic spectrum that isn't actually linear anyways.

2 This tells me Dr. Prizant is quite familiar with the parent and professional perspectives. In the authors note he says he understands and respects “why some adults with autism prefer the label 'autistic.'” Which, I appreciate the gesture, but no. Some autistic adults prefer the label autistic (and some adults with autism prefer the label “with autism,” this one isn't about language per se but respecting identity and choice.) As in, the ones who prefer the label “autistic” should be referred to as “autistic” even if you're going with person-first as your default. Here's hoping he got that right at the specific people level even though he missed it at the group level.

3 Treating disabled people, especially intellectually, developmentally, and cognitively disabled people, as forever-children is a big problem. So is acting like autism is some “new” thing that only affects children because of how new it is, as opposed to something where there are a ton of un- or mis-identified autistic adults running around … and a lot who didn't survive. He does point out in the authors note that things often apply to teens and adults as well, but why not just say "people" when that's the case?

4 Yes, I know people who had speech delays that made them ineligible for the Aspergers diagnosis who got that label anyways because they learned to speak before the evaluation happened. Back in 2012 I saw an Australian study that suggested fully half the people who'd gotten either the Aspergers or the PDD-NOS label actually qualified for “Autistic disorder,” which means their diagnosis was wrong – you weren't supposed to give either of those two when criteria for “Autistic disorder” were met. And a lot of these incorrect labels? Are because people falsely assume average or higher performance on IQ tests and language tests implies Aspergers. 1) This is a pet peeve and Dr. Prizant just hit it with his description of who'll get referred to with Aspergers. 2) If anyone knows the formal citation so I can point at it instead of just “I remember seeing” that would be great.

5 I use AAC part time, and sometimes write about doing so. Also, Typed Words, Loud Voices exists.

6 I've got a whole “Problem with Autism Speaks” tag on my blog for a reason, folks. Sam Harvey's masters thesis also discusses some … issues with their rhetoric and the results.


7 Link is to a picture of the scar. Check the description and the comments of the photo from the story.   

9 comments:

  1. "I know Michelle Dawson is good, but I'm not so familiar with Geraldine Dawson. Are they related?”

    I hope not! Geraldine Dawson is an autistic-hating clinical psychologist and eugenics researcher who used to be Chief Science Officer for Autism $peaks. An endorsement by her is a bad sign indeed.

    ReplyDelete
  2. I haven't read this book although I probably should. Or maybe I will just read your posts.

    I HAVE read the SCERTS model 2 volume handbook. I rate SCERTS as Not Terrible on the Nightengale Autism Resource Rating Scale, which is actually a really good rating from me. I just made up that scale but I kind of like it, the NARRS.

    A piece of information you may not have is that Barry Prizant did his research (not sure if masters or doctoral, possibly both) over 30 years ago on the functions of echolalia. Not surprisingly, he found it has functions. I read his thesis/dissertation/whatever it was about a month after I wrote my own list of proposed functions which occurred after a temper tantrum when someone at work called echolalia "nonfunctional" again:

    http://nightengalesknd.livejournal.com/101853.html
    (Darmok and the developmental pediatrician at Tenagra)

    The SCERTS model rates as Not Terrible in my mind because it makes some effort to recognize autistic perspectives and autistic learning styles. It recognizes sensory needs and needs for breaks and multiple communication methods. It is pro AAC. I don't know any other named therapy/model that does those things.

    But it privileges play with non-disabled children over solo play or play with other autistics. It privileges certain kinds of play over others. It privileges verbal speech over other forms of communication And possibly most infuriating of all, it privileges spontaneous language over echolalia, and this from the guy who literally wrote the paper on the functions of echolalia.


    I wrote about it more here
    http://nightengalesknd.livejournal.com/102492.html (Fun is fun so long as it's fun)

    Anyway. I look forward to reading the rest of your reading.

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  3. I'm reading at a rate so that I can do 1 chapter post per weekday, so I *just* got to the bit where he did research on the functions of echolalia today!

    And seeing that (plus your comment on SCERTS) gives me two reactions: 1) ok that's a citation I want and 2) OH COME ON FOLLOW YOUR OWN LOGIC TO ITS CONCLUSIONS.

    ReplyDelete
    Replies
    1. (The OH COME ON is directed at Dr. Prizant, not at you, Nightengale, to be clear just in case. I agree with the things you said.)

      Delete
    2. Yes, I get what you meant since I had the same reaction - read your own research!

      Delete
  4. Me again, I come bearing citations. That's echolalic from Greeks Bearing Gifts. I come bearing links to abstracts also. I acquired these via Google Scholar "Prizant echolalia" and there's a few other articles in there I haven't read.

    Prizant, Barry M., and Judith F. Duchan. "The functions of immediate echolalia in autistic children." Journal of Speech and Hearing Disorders 46.3 (1981): 241-249.

    http://jshd.pubs.asha.org/article.aspx?articleid=1774931&resultclick=1

    Prizant, Barry M., and Patrick J. Rydell. "Analysis of functions of delayed echolalia in autistic children." Journal of Speech, Language, and Hearing Research 27.2 (1984): 183-192.

    http://jslhr.pubs.asha.org/article.aspx?articleid=1778014&resultclick=1

    ReplyDelete
  5. Could it be the Real Experts chapter is the second shortest because the Real Experts use language in a way that is information-dense?

    ReplyDelete
    Replies
    1. It's possible, I guess I'll find out!
      I don't trust it though.

      Delete

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