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

Friday, June 3, 2016

Alyssa Reads Uniquely Human: Part 2

Still reading Uniquely Human, now on Chapter 1. Part 1 is here. Warning for mentions of abusive "therapies."

There's quite a few stories about students, like Jesse. (please tell me Jesse and all the other students referred to gave permission for their stories to be used, and I do mean Jesse and those students, not their parents, or in addition to their parents if they're still minors and parental permission is required...)

The point about asking why, about trying to understand our perspectives and experiences rather than trying to control behavior as the sole (or primary) goal is a good one. It's also something autistic adults have been saying for a long, long time.

Unfortunately this behavioral-assessment approach -- that is, using a checklist of deficits -- has become the standard way of determining whether a person has autism. (17)
I'm not sure that  behavioral assessment is the same thing as a checklist of deficits, though our in autism land they pretty much go together.

I like how he pointed out the circular reasoning where we're autistic because we flap and we flap because we're autistic. It's circular. Professionals don't usually point that out.

I also like how he questioned what success means here. I think more questioning of that would be good. (Maybe it'll come up again in later chapters? That's a what question and not a why question anyways, and "why is this the idea of success the one that's used" is addressed some.)

On dysregulation, which gets a good bit of attention in the chapter:

I'd like to ask if we're really more vulnerable to everyday emotional and physiological challenges or if we're tired because we're dealing with more of them. While I ask, I'd like to see how many neurotypical people can function while walking on an untreated broken foot. I'd also like to ask how many neurotypical people who unexpectedly found themselves unable to speak 10 minutes before they were scheduled to present at a conference would still present. Not more vulnerable than y'all, just dealing with more nonsense.

Also I'm fairly sure sensory and movement differences are core pieces of autism, not "associated challenges."

Looking at environmental stuff that makes self-regulation harder is a good idea.

I think saying we are unusually poorly equipped to deal with certain challenges (lower threshold) and have fewer innate coping strategies is a simplification at best and wrong in places. We wind up getting into trouble more, that's definitely true, but how would you cope in an environment designed for how I work? It's often about mismatches. Also, we have plenty of coping strategies. Noping out of bad environments (avoiding them) is an effective strategy when we're allowed to use it, but it often gets called eloping because for some reason y'all want us there anyways. Covering our ears is a semi-effective way to deal with loud. Those things that get taken as signs that we're getting dysregulated (and he does mention this later in the chapter! yay!) are often actually ways that we stay regulated, and that realization could (but only partially did) lead to the conclusion that we're not so much short on coping methods as disallowed from using them.

Like with Dylan. Is refusing to proceed dysregulation, or is it an attempt to avoid an environment that would cause dysregulation if he proceeded? I'm not in trouble yet but if I go into the supermarket I will be doesn't mean I'm overloaded, but that I'm trying to avoid overload.

I like the point that hands over ears+rocking in noisy environments is both a sign of distress and a coping method. I really wish this level of sensory sensitivity wasn't called extreme though, because it isn't. It's pretty common. I do that, and I'll stiffen noticeably too.

The idea of watching specific stims that tend to show up under stress as a way to gauge stress is a good idea. Good advice. Yes. Good pointing out the issue with "behaviors."

BAD statement:
In earlier decades many researchers aimed to rid children of stims, some employing punishment and even shock as a means to eliminate "autistic behaviors." (22)
Not bad because false. Bad because this isn't just the past. This is ongoing. This is now. The Judge Rotenburg Center, which is within biking distance of my high school, still uses shock. Centers spray vinegar in the mouths of children, and parents sign off on this. And if you don't think restraint isn't a punishment, if you don't think holding someone's hands down when you know they don't like to be touched isn't a punishment, well you are wrong. Those are punishments. Autistic activists and scholars get death threats for pointing out that this is ongoing, that this still happens, and sometimes even for pointing out that it ever happened though Dr. Prizant is saying that much.

The practical ideas for Glen's story sound good. Yay!
I'd like to point out with Caleb's (pretty good) story that 3rd grade is also within the age range where having imaginary friends is pretty normal even among neurotypical kids.
Pointing out that echolalia has use is important.
Pointing out that a lot of what we do is dealing with a world that is anxiety-provoking and that trying to get us to stop is actually killing our coping strategies is also important.

Gonna point out that people keep using "unpredictable" as code for "we don't know the pattern" and that those are different things: it happens in a lot of teacher descriptions, but Dr. Prizant does it in his own descriptions too on occasion. It's actually not unpredictable. (Seriously as soon as I read that Hesse used movement to regulate and that gym wasn't happening on a day when it was supposed to I could predict meltdown. Not unpredictable.) Also, Jesse totally knew what the problem was and what he needed. He wasn't able to act on it, but he knew.

Lots of stuff that's exactly what autistic people have been saying since ever repeated with/in stories about children. The hug thing is like that. (And remember that your body language confuses us just as much as ours confuses you -- what constitutes "warning" for a hug is relative.)

Slightly wondering why the modifier "social" is used with communication so often. ALL communication is social? It's got to have at least 2 sides.

Since all the examples given were kids at the time of the stories, I kind of get why children is used rather than people for the general case, but... really? This isn't like person-first vs. identity-first where there are people on both sides who'll get offended, and where there exist people whose personal experiences lead them to identify each way, no matter how strong my opinion in one direction may be. There is no group that is going to be upset by saying "people" instead of "children" when a statement is applicable to people of all ages. (I'm a mathematician. I like to generalize as far as actually works, but no farther.)

After this chapter, my take is:

The practical examples of advice from stories seems pretty good.
At least admits the punishment and shocking exists, but it's still happening and don't call it something from earlier decades while it still happens.
None of the advice is new to me. I have read all of it from autistic adults, and several times each. Heck, I've written some of it before. To be clear, that's not bad. It just means this isn't as groundbreaking as most readers will likely think it is. (Autistic adults make this same comment about research studies showing obvious things all the time. Dr. Prizant is in very large company here.)

Definite tendency to not question far enough, and to miss/not mention some important logical results of what he's saying. (If you found the pattern it's not unpredictable anymore. If what we find challenging is not what you find challenging, we could be (are) dealing with more challenges and running out of gas faster under higher stress doesn't imply a lower threshold.)

Still better than most autism books out there. (Which is very much a problem with all those other books.)

Part 3 (Chapter 2) can be found here.

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