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

Wednesday, June 8, 2016

Alyssa Reads Uniquely Human: Part 5

I'm reading Uniquely Human. The start of the series is here, and the previous part here. I've been loving the comments so far -- very informative! Please keep telling me things :D

Somehow the description of Derek's internalizing Dr. Prizant's pattern/rhythym of September visits rather than October ones is reminding me of the description of David's rules in, well, Rules: Derek has an idea of how the world should work and that's a rule, but we don't get to see why it's a rule. It's just a rule. (And David's Rules were given as an example of behaviorizing depictions in that Disability in Kidlit article y'all should really read. Just pointing that out.)

I raise my eyebrow at the idea that autism is a disability of trust. I raise that eyebrow very high, figuratively. Literally I don't raise it much because my eyebrows remain on my face and my forehead isn't that big.

The idea that we can't always trust our bodies I buy -- I can trust that if my body is giving me information, then the information is good, but there's a lot of information I don't consistently get. Am I hungry? Cold? Tired? I don't know. I've broken bones and not known it. This isn't quite the same as the mistrust that Dr. Prizant is describing: he's describing not understanding what minor illnesses like colds are (could it be that no one bothered to explain to us that these things exist and are minor and will pass? Also, look back at the echolalia chapter for the "Do-ahhh" example, kid knew full well what was wrong even if he couldn't say it in the standard words.)

I think "routine changes and unexpected things are hard" is getting framed as being about trust in the world, which, I can kind of get, but I don't fully agree with. A lot of autistic people have funky circadian rhythms, and I know the way mine is funky is that it is tied very firmly to the sun. That is, I don't actually care what the clock is doing for the purpose of determining when I am alert vs sleepy and when I get hungry. I care what the sun is doing. My troubles (or lack thereof this year, when I was able to shift most of my schedule a clock hour when DST started) with daylight savings aren't about trusting when things happen. They're about "uh I don't care what the clock says, I wake up when the sun rises and then I want food" and similar mismatches caused by following the sun.

Similarly, while trust lost in the world could work, approximately, for the other example given, it's not the only explanation possible and just saying "trust in the world" isn't satisfying. Plus the descriptions, even with some level of "trust in the world" explanation given, are at best mostly behaviorizing with a touch of humanizing in there.

Oh god I think the trust in others part is going the Theory of Mind route, though without using those words. Apparently most people are hardwired to be able to predict the behavior of others and read body language and such. Which others? Others like themselves. Most people can't read my body language for beans. If this isn't Theory of Mind itself, it's got the same rhetorical issue: theory of whose mind?

The constant vigilance related to this trouble predicting people (who are often terrible to us!) is dead-on, though. Oh, my goodness, are people exhausting to deal with, because they're unpredictable and don't think they are.

Fear and anxiety are definitely also things. (Holy wow do I have anxiety. A lot of folks think I don't get scared easily because they don't recognize my body language well enough to tell when I'm scared and because I don't make that much effort to avoid the things that scare me (too many things!) plus I definitely have Gryffindor tendencies anyways. They're wrong. Sensory issues, people having actually been terrible (still no mention of how much more frequently we are victims of abuse by parents or teachers, which would totally cause disregulation and fear) , unpredictable animals, and more.

I like how Dr. Prizant mentioned that things other people might like could be scary for autistic people. I also like that he realized (at least in the case described) that forcing a student to participate in the scary thing would be a bad idea, and said so (plus why!)

I like how he points out that when we try to control situations, there are actual good reasons we might try to do so! Pointing out that professionals often try to seize control is also handy, but can we talk a little bit more about how much of autism therapy is about the therapist being rigid and controlling? Because is it ever!

I know "selective mutism" (or apparently "elective mutism") is the term used, but ugh. As someone who loses speech, and not just from anxiety, I really, really hate descriptors that imply I am choosing to have speech go kaput on me. (Also the kid may well have been situationally not capable of speech in addition to sometimes choosing not to speak. This is a thing that happens.)

The bit on how children exert control is definitely behaviorizing in the depictions. Since the birthday party is for Jose, not sure why the parents and therapists are so stubborn and rigid in their insistence that it be planned their way, as in, expanded beyond the group Jose originally said he wanted to invite :p.

By persistently giving the message "You must change," we are inadvertently communicating "You're not getting it right. You're screwing up." (90).
Inadvertently? Inadvertently?!  Folks, if y'all can't figure out that telling us constantly to change everything about ourselves is telling us not just that we aren't "getting it right" but that we are inherently wrong, then we are not the ones lacking in empathy here unholy pancakes what even is this. You don't get to do this stuff and then claim it was an accident. (Plus I remember Lovaas, there's the pieces but the therapist needs to build the person?)

The advice for building trust seems OK on the surface though I don't pretend to trust the ways it'll be interpreted and used by parents and educators. The celebrated "successes" will likely be times where an autistic person acted in neurotypically expected ways. (As a contrast, and illustrate to what else success could mean, one of my big goals this year was switching over to writing or typing as soon as doing so would be more efficient than speaking, rather than waiting until speech was entirely gone.) The choices offered are likely to be superficial things like which sandwich we want or which approved activity we want rather than the choice to not participate in any of the social options or generally to reject all the suggestions and come up with something entirely different. ("When do you want to practice eye contact?" Um, literally never, thanks.) Which isn't a problem with the advice, but it is a problem that I want to warn parents and educators about.

You can find part 6 here.


  1. A description I often use for mute moments which last is "imposed" or "enforced mutism". "Enforced" in the sense of "enforced leisure" that people have when they're unemployed or not otherwise occupied.

    When it is a person affecting the conditions, "imposed" comes into play.

    What, no models for celebrating autistic successes in autistic ways? [Okay - Autistic Pride Day is in 10 days!] And the thing about choices and the problem.

    And yay for switching over to writing and typing at the time when you could write and type.

    Change - it is very often a purposeful thing ... Holy pancakes!

    Doesn't Greenspan do "Trust in the World"? Along with "Self-Regulation"?

    And so often a minor illness is not minor by the time it is picked up. "Poor registration"? [the thing Grandin talked about - seeking; avoiding; white noise; hyper-; hypo; poor registration].

  2. Okay:

    I can talk about the "disability of trust" further.

    Post-traumatic stress is a fundamental betrayal of trust, particularly in its interpersonal, chronic and complex effects/manifestations.

    Depression, anxiety, pain, fatigue - move the trust goalposts a lot.

    We do not have enough examples of Autistic people and their trusting relationships and how they develop.

    Nor do we see how it might develop in great chaos and inconsistency and challenge.

    "And then I want food".

    The constant vigilance related to this trouble predicting people (who are often terrible to us!) is dead-on, though. Oh, my goodness, are people exhausting to deal with, because they're unpredictable and don't think they are.

    The "don't think they are" is important. How do you all register unpredictability of each other? Surely there's more of that between you...

    Autistic behaviour MAY be predictable but Autistic humanity most probably is not.


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