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

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Monday, June 13, 2016

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.

1 comment:

  1. Direct questions can be ... direct! And scary.

    Tianjin person was good. Did she take that into consideration [that you are safe{r} in a meltdown alone than with someone] the next time you were in contact?

    "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."

    I have seen reactions. Not from Prizant, but evidence-based from others.

    Does Prizant work it through the parent and try to interpret from there?

    "Disembodied autism is not a thing" - this could make a good graphic, Alyssa.

    It is unusual about the writing and the learning and recognising it. [I sort of cut across this one by taking writing-intensive courses - where writing is already recognised as a form of communication and of learning and then normalised].

    Interesting to compare to the Theo Peeters list of "professionals who are bitten by the bug of autism".

    How does Prizant understand happiness + empathy?

    Have just read Denyse Whelan's WHAT IS A PRINCIPAL FOR. She had experience in a New South Wales school in a place with two autism units and asked her blogging friends' kids "What is a principal for" after a kid asked it.

    Yeah, don't override people's hopes and dreams by people who are close to/associated with them.

    And the bit about out-stubborning. Power struggles!

    The telling part just makes you [me] feel that all adults are against me.

    Maybe people who are good at problem telling and solving?


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