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.

Monday, June 6, 2016

Alyssa Reads Uniquely Human: Part 3

I'm now reading Chapter 2. The previous part (Chapter 1) is here, and the start of my reading Uniquely Human is here.

I think I've put my finger on one of the things that's been bugging me. Yes, we go on to (at least partially) reframe the ways the students Dr. Prizant describes are acting, but it's still a behaviorizing (or sometimes partially behaviorizing) portrayal. The behaviorizing portrayal is then followed by investigating motivations on some level, but we're still starting with the standard tropes.

It's part of the general theme I've been coming to, where this is better than most autism narratives (I haven't thrown the book at the wall!) but there's a lot of "has a good idea but doesn't quite follow through on it."

Another example is the big idea of not thinking of autism as a bunch of symptoms/deficits. Yes, this is a good idea. But then, re: echolalia:
In children who can speak it is often among the first indicators to parents that something is amiss in a child, when, instead of responding or initiating with the child's own language, the child echoes words or phrases borrowed from others. (37).
Reaction the first: Uh isn't that describing a symptom or deficit.
Reaction the next: I think original language is what's really meant, echolalia is our language for a lot of us... (see also my echolalic poetry, here, here, and here. Really want to argue the recombinations aren't my own language, even if the pieces are echoed?)

Parents apparently worry that echolalia will mark kids as... quirky. Yeah, I've got a complicated relationship with that word. (Comparative and deceptive) safety, erasure, "soft" disclosure, so many meanings behind that word.

I'm not sure why the part of trying to stop echolalia that is worse is the part where it's on the path to learning more "standard" communication (what I assume he means when he says learning to communicate and connect, since he's said in other spots that echolalia is communcation) as opposed to the part where it's silencing current communication (which he also points out as a problem.)

In this chapter I finally get to see advice from an adult on the spectrum cited as such, where he's learning from us as the experts he says we are rather than from (more humanized than by most clinicians) objects of study. The tendency has definitely been to treat us as subjects that he observes, which, yes there's useful stuff to be gained from observation but it took a while to get to the "actually using information you can get by asking us" for a book that calls us experts.

I really do approve of his pointing out that for none of the children that he worked with was echolalia actually meaningless. This is important! He studied this fairly heavily, it seems, and I would love to grab the citations because as much as echolalia as communication is one of those things autistic adults have been saying since ever, I don't know of too many clinical/academic citations to back it up. Finding that we use echolalia for all the same reasons and functions neurotypical folks use more "standard" language for is a handy thing to be able to cite.

However: If we're going to call echolalia part of language/a language, maybe we shouldn't call it a path to acquiring language, with no modifier on language? Echolalia really can be a path to acquiring non-echolalic or less-obviously-echolalic language, but 1) it's made of words and 2) serves the purposes of language so it's already language, so we should really note what kind of language it can be part of acquiring. I'd like to point you to the last three full paragraphs of "If you don't use your words you won't be indistinguishable" now. Really the whole thing but those last three paragraphs are what's most relevant to my points here: less-obviously-echolalic language is not the same thing as not-scripting or not-echolalic language. It's often a defense to make the echolalic nature less obvious, because folks will often assume the speech is meaningless if they know the speaker is autistic and they recognize that it's an echo/reference. (As opposed to neurotypicals apparently being clever when they make references?) Privileging language that you can't tell is echolalic, whether or not it really is, ties in to that same problem. Stop that.

Similarly, we don't take our "turn" in the coversation by merely echoing and "not really respond" (47). Remember that echolalia as studied and described here is 1) made of words and phrases and 2) serves the purposes of language so it's already langauge and is a response. That doesn't mean it's not useful to break long and complex sentences into smaller chunks. It is. Doing so gives us a larger library of phrases to work with and recombine, if nothing else (and it probably helps with understanding in ways that make recombination easier anyways.)

Then we get a story where Dr. Prizant asks a student why they do something. Yay, asking us. (So when I started reading Folk Psychological Narratives, which I swear I will eventually finish and then poke holes in the places where it doesn't follow it's own logic when applied to autism either.... the point is Hutto repeatedly emphasizes that the best way to get information on why a person acted as they did is to ask them. There are times where that could not work, but autism is not inherently an exception.)

In Justin's story, I think that there is some interesting framing of motivations, or some interesting motivations, even if the actions are good. Justin was getting nervous, and he was scripting (and the script was noticeable because it was not normative for the situation,) seemingly out of anxiety. So:
To replace this unusual greeting with a more conventional one, his parents prepared an index card with reminders of what to say in social situations. (49).
So we're doing this to replace the unusual greeting? Not to ... help with the anxiety? (Which could absolutely have a side effect of a more conventional greeting happening.) Interesting priorities there. If we're doing it because of the greeting, that really is trying to get rid of autistic behaviors because they're noticeably autistic. If we're doing it because in this case the script is a sign of anxiety, we're trying to help reduce a source of stress. Rather different goals.

Continue to Part 4 here.


10 comments:

  1. "Silencing current communication" - who is doing this? Prizant? The person? The parents? The onlookers?

    "Trying to help reduce a source of stress" - yes, I can see why this would be a different set of goals.

    Prizant's first paper on functional echolalia is one I definitely remember the man for. And his behaviourist goals shine out very clearly from that. Has he tried to hide or mask them over the past 30 years? And doing what he would have us do?

    In the secondary literature: two chapters about Learning to Communicate from learning ace which is a education site.

    Language and Communication Disorders in Children: [2009] Bernstein and Tiegerman-Faber
    Exceptional Lives [2013: 7ed] Turnbull A and R; Wehmeyer; Shogren.

    It made me wonder what "shared meaning" Prizant was able to find in the quotes and their uses. How sensitive is he?

    Jim Foley had some good ideas in 2014 and 2015. And this post in February 2016:

    Principles for Psychotherapists: the first one is "Join the client where they are"

    Jim Foley's funny poem based on the Blind Men and the Elephant

    ***

    Prizant cites. There is also a person called Amy Wetherby.

    http://jshd.pubs.asha.org/article.aspx?articleid=1774931&resultclick=1
    [The functions of immediate echolalia 1981]

    http://jshd.pubs.asha.org/article.aspx?articleid=1775056&resultclick=1
    [Understanding the 'whole' of it 1983]

    http://jslhr.pubs.asha.org/article.aspx?articleid=1778014&resultclick=1
    [The famous 'delayed echolalia' paper 1984].

    http://ajslp.pubs.asha.org/article.aspx?articleid=1777138&resultclick=1
    [Profiles of children 1998]

    http://www.sciencedirect.com/science/article/pii/S0890856709657221
    [Communicative Intent 1987]

    http://onlinelibrary.wiley.com/doi/10.1002/9780470939352.ch10/summary
    [Critical Issues 2013]

    http://link.springer.com/chapter/10.1007/978-1-4757-4806-2_10
    [From the Schopler/Mesibov series with Schuler: Communication Problems]

    http://ajslp.pubs.asha.org/article.aspx?articleid=1774351
    [Socioemotional Aspects 1993]

    http://link.springer.com/chapter/10.1007/978-1-4899-2441-4_5
    [Preschool Issues: Communication]

    http://jshd.pubs.asha.org/article.aspx?articleid=1775379
    [New and Old Information - 1985 - with Caleb]

    http://eric.ed.gov/?id=EJ285326
    [1982: What is the role of a speech language pathologist?]

    http://lshss.pubs.asha.org/article.aspx?articleid=1779381&resultclick=1
    [1992/3: Understanding School Aged Children]

    Found these from Google Scholar! Lots were from the American Journal of Speech and Hearing.

    ReplyDelete
    Replies
    1. The person "silencing current communication" would be whoever is trying to stop all echolalia. He's (at least on the surface) arguing against extinction of echolalia, at least not without figuring out what it's supposed to be accomplishing first!

      And yes, he's at least trying to mask behaviorist tendencies here, what with a (supposed) thesis that you should ask why autistic people are doing whatever we're doing and that eliminating behaviors for the sole purpose of seeming less autistic is maybe not so great. Plus arguing that autistic behaviors (still calling them that often) are ways of coping with the world.

      Buuuut the focus on behavior over *internal* motivations is definitely showing through. Thanks for the citations btw.

      Delete
    2. I have no great love for silencers.

      And thank you for making this opportunity to discuss UNIQUELY HUMAN in the first place. It's been one of the 3 autism books of 2015: NEUROTRIBES and IN A DIFFERENT KEY the other two.

      Have read some British-based books where actual autistic people are asked about their lives; even and as when nonspeaking.

      "Ways of coping with the world". That is probably an "inadequate defence".

      "figuring out what it's supposed to be accomplishing" - still a behaviourist goal?!

      Delete
    3. Yeah all of those things.
      (Also if you know any of those British-based books off the top of your head, I would much rather be suggesting those!)

      Delete
    4. 1982: Everard [Peggie]; Newsom [Elizabeth] and Dawson:

      THE NATURAL HISTORY OF THE AUTISTIC ADOLESCENT AND ADULT.

      Jessica Kingsley Publishers: a series Autistic Adults Speak. Edited by Genevieve Edmonds. 2004-2008.

      Jeanette Purkiss and Wenn Lawson are both originally English and now live in Australia. Purkiss has a good Mental Health book which came out this year.

      Sex and Drugs by Luke Jackson [A user guide to adulthood].

      Books by Sarah Hendrickx.

      Ros Blackburn and Robyn Steward who wrote about Being Safe.

      Delete
  2. I've read the part of Eliza and "Got a splinter".

    Barry is a doctor, yes? He makes Eliza feel anxious? And it reminds her of the time she had a splinter or a splint?

    And maybe someone talked about her splinter skills in front of her?

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    Replies
    1. Barry is a doctor and the teacher at least thought it was about an incident where she had a physical splinter.

      Though I'd not be surprised if someone had also talked about splinter skills in front of her.

      Delete
    2. All too unsurprised.

      One of many possible interpretations. Wondered if I were being over deterministic - had a sense of strongly being near.

      Good to see the teacher thinking!

      Splinters, for me, are so painful and wanting-to-avoid that I would not talk about them at the time or afterwards.

      Or she might have had a Teenage Mutant Ninja Turtle toy of the eponymous rat. [Splinter the mentor figure to the Turtles].

      There is a lot of "got a" and "gotta".

      Delete
  3. So Aidan said "Are you a good witch or a bad witch?"

    That puts people on side and makes them pick a side.

    Either way, we're still witches!

    ***

    Justin is Justin Canha, as best I can tell. Prizant said he was a "successful artist".

    (I remember talking about JC with Lindsay of The Autist's Corner and admiring his beautiful and vivid succulents).

    So the greeting was "Who's your favourite cartoon character"?

    (Justin - I could never say! And the "What's your favourite [thing]" is indeed a common question - a way to break the ice).

    Okay - my favourite cartoon character is probably Pepe Le Pew or the Road Runner.

    ReplyDelete
  4. More cartoons and stories.

    In Namir's world PETER PAN was very important.

    His family bought him figurines and they used them together to create original and fun scenes.

    I don't remember Namir being anxious like the other people in the chapter.

    Was it because they [parents and therapists] did pay attention to "words and gestures and context"?

    ReplyDelete

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