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 7, 2018

Assigned "friends" and unintended lessons

I often hear about things like "assigned friends" and "friends of the day" in disability contexts. It creeps me the heck out.

Essentially, a student who is presumed to be abled is assigned, in some fashion, to a classmate who is presumed to be disabled, is new to the class when no one else is, or is presumed to "need help with social skills." Sometimes this means the person is assigned to be their partner (or in their group) for any partner and group activities that happen that day. Sometimes it means the person is assigned to sit with them at lunch, or play with them at recess. Sometimes it means the person is assigned to assist with some disability-related task (which makes me wonder if saving money on aides and services is part of the rationale here.) Sometimes it's a combination of these things.

I've actually been both the assigned friend and the person to whom friends are assigned, at different points. Neither was good. I learned things from both that were ... probably not what I was supposed to learn from either. Or at least, not what the teachers would have claimed I was supposed to learn. So, in no particular order, here's some things I learned that they probably didn't mean to teach me this way.

  • School bullies, like all other abusers, know how to be sneaky. Do I think the teachers meant to assign my bully to be my friend? Or me to be my bully's friend? No on both counts. (Yeah, the kid I was assigned to the one time I was the presumed abled kid in this equation was also a bully. Disabled people aren't immune to being bullies ourselves.) But it happened, because bullies know how to be sneaky. And yes, I had a bully who requested that she be "assigned" to me as a friend in order to get and stay closer.

  • Playing alone at recess isn't an option. These "friends" tended to get assigned more after I had been playing alone on the swings or alone looking for (and finding!) four leaf clovers at recess. Or running laps around the field. Yes, really. I ran laps around the field alone at recess for most of fourth grade, because my actual friends a year below me didn't have recess at the same time I did anymore. This got me assigned so-called friends in my own grade a few times. The assigned friends were usually people I had common interests with and were often people who bullied me when the teachers couldn't see. I did have one actual friend in my grade, but he was never my "assigned" friend.
  • Since "friends" are the people who are basically assigned to put up with me, anyone who's spending time with me is probably just putting up with me. They don't actually like me. Yes, this is a factor in my social anxiety. I'm not alone in learning this lesson about friendships, and teaching indistinguishability as a goal can teach this lesson too.
  • I don't get to decide for myself who my friends are. "Friends" are whoever I'm told to be friends with, or whoever is told to be friends with me. So not only do I not get to decide who I'd like to be friends with (not the kids who would ever get assigned as friends, by the way), but I also don't get to decide who I'd rather avoid.
  • Teachers don't think about the effects of further singling out the "weird" kids. Or they don't care. Look, if you are 1)  assigning kids to be closer to their bullies and 2) pointing out who the weird kid was at the same time, you either don't know or don't care that this is going to make the bullying worse. Those are the options. I am giving you the benefit of the doubt when I assume you don't know.
So, are these the lessons you want to teach?

Wednesday, May 23, 2018

I'd rather see a student psychologist. Really

I'm in therapy right now. I have been (in this iteration) since late January, both dealing with deaths in the family (three this semester, one of which hit me harder than most - that was my grandfather near the start of January) and trying to get something resembling a handle on my anxiety. On the to-do list is gender-related stuff, eventually, since I do have some physical dysphoria in addition to the social stuff. But that's not the point. The point is that I actually prefer to have a student as my therapist, and there are a few reasons.

  1. Students are usually less confident. That might seem like a disadvantage, and I suppose it could be for some people, but in my case it's important. I am very good at being an outlier. Someone who is confident in their expectation that things that work for most people will work for me ... is not going to be a good match, because they are often going to be confidently wrong.
  2. Students knowledge is as up to date as it is ever likely to be. It's a reality of graduate school that we have to be reading a lot of recent research. It's a reality of regular practice in most fields, including psychology, that people don't have time to be reading that much recent research. There are, of course, exceptions, but in general your best bet for the most up to date information is a current graduate student.
  3. Those two things combine to increase the likelihood that students have heard of neurodiversity and are at least open to the idea. I'm not actually the one who brought up neurodiversity in my sessions, because my initial focus was on grief. My autism was only relevant in the way it's always relevant: the way my brain is wired up affects how I process literally everything, including grief. At some point it was relevant and the therapist I'd been seeing asked me if I'd "heard of" neurodiversity. (I think this must have been the day I my ability to speak went out part way through the session and I switched over to typing, because I didn't burst out laughing immediately.) Yes. Yes, I have heard of neurodiversity.
  4. The psychological consultation center on my campus doesn't take insurance, but it runs on a sliding scale based on income, and sessions are $5 for students. That's cheaper than co-pays even on most good insurance.
Between these factors, I'd really rather go to a clinic where students are being supervised. Folks there are more likely to be a reasonably good match for me.

Monday, May 14, 2018

Not the way you mean

In my experience, a lot of questions get asked as proxies for other questions. Sometimes the two questions have different answers. Most of the times I can think of this happening have been somewhat medical. Which might be its own pattern, or might be because I notice/remember it more when the difference matters more. I'm not certain.

Example the first: Have you fallen in the last six months?

Every time a doctor has asked me this, they've wanted to know if I have balance issues (kinda, but they're not getting worse). They may or may not have appreciated being told that when a beginner ice skater crashed into me from behind, I did hit the ice. They may or may not have appreciated being told that my brother successfully tackled me during a backyard football game. They may or may not have appreciated hearing that I wiped out once on a week long ski trip. Whether or not they appreciated my precision in answering the question they actually asked, it's not the information they were really looking for. Mostly, I'm a clumsy person who tries to athlete anyways.

Example the second: Have you had any bruises where you don't know where they came from?

Bruises without having some sort of noticeable physical impact or injury first can be a sign of a bunch of health issues. If we have bruises and don't know where they came from, that's a possible explanation. In my case, a bruise that I don't know the exact source of is actually a bruise where I can't tell you which of the assorted desks, walls, chairs, tables, or poles I clipped my hip on actually left the bruise. It is over-explained, not unexplained, but I technically don't know where it came from.

Example the third: Have you been convinced something is wrong with a food or beverage when everyone around you says it's fine?

This was at a psychology intake. Given the context, I'm reasonably certain she wanted to know about paranoia. Here's the thing. I have sensory processing issues. Most people around me think scrambled eggs are food, but the texture means I disagree. Strongly.

Example the fourth: Have you ever been convinced something was medically wrong when the tests were coming back fine and the doctor said you were fine?

Psychology intake again, probably about paranoia again, but let's be real: this also happens to most people with a chronic illness at some point, and they (we) are 100% correct that something is actually wrong. Also, I have an 8 year old dent in my shin that wants you to know doctors can miss broken bones on X-rays.

Example the fifth: Have you ever heard things that other people around you did not hear?

Psychology intake still, standard question I'm pretty sure. They've asked me that every time I've had an intake. Yes. I hear things other people around me don't hear. It's called being 25 and still being able to hear up to 20000  hertz. In combination with sensory processing issues, this is really not fun, because that sound that I am experiencing significant pain from is completely outside the range anyone around me can still hear. Ow. It's not an auditory hallucination, though.

Monday, December 4, 2017

What if they're stimming with the device?

In response to the fact that it is not OK to take someone's communication device away, ever, apparently it is common to ask, what if the person is stimming and (we assume) that's interfering with communication.

There are a few points I want to make in response to that. Some I've seen elsewhere. Some, less so.

  • What would you do if a kid was vocally stimming, with their natural voice, and you thought that was impeding their communication? Still not taking away their voice, right? Even if you think they're doing something noncommunicative with their voice, you're still taking their voice in that example. Never means never. (This is mentioned in the PrAACtical AAC post, but it was also my immediate gut reaction.)
    • Or what would you do if you heard me stimming with my AAC device? Cause yeah, I'm an adult and you know I can communicate and all, but I do that sometimes. Would you consider taking my device? I'm kind of assuming it's a no there because the idea that you might try is a bit too scary for me to look at right now, but why wouldn't you do that to me, if you would to them? (This is somewhat an explanation to my immediate gut reaction.)
  • Keep in mind that communicative echolalia is a thing. In my experience ... yeah, sometimes repeating words or sounds because it feels good is a thing but there's often a meaning. (pickles pickles pickles pickles pickles resulted in my getting pickles, in college. It was also stimmy, as a side bonus.) For those looking for citations on the communicative functions of echolalia, Barry Prizant did some work on that (Prizant & Duchan, 1981; Prizant & Rydell, 1984). I don't trust him on the whole, remember my reactions to Uniquely Human, but communicative functions of echolalia is a useful thing he did.
  • Echolalia, repeating words and phrases is also how a lot of autistic people learn language in the first place. The thing that is how we learn language is not actually a barrier to communication and if this is what's going on, your assumption that this is a barrier to communication is just wrong. Do not pass Go. Do not collect $200.
  • Also, is the babbling stage a thing with AAC use? Cause it usually is with oral speech and it's not successful communication yet but it has to happen in order to get to successful communication later. Exploring language and using it in unexpected ways is part of learning language. (This shows up in the PrAACtical AAC post.)
  • Stimming is great. I am usually stimming in some way. It's not usually vocal because that's just not what tends to work for me, but I am usually stimming. Hence, fidget spinners and blanket pieces. The fact that a person is, in fact, stimming does not mean you should stop them from doing whatever it is they're doing to stim. Suggesting alternative ways of stimming can be OK under some circumstances, but seriously, "they're stimming" doesn't mean "they should stop." Similarly, "it's echolalia" doesn't mean "they should stop."
Academicy Citations

Prizant, B. M., & Duchan, J. F. (1981). The functions of immediate echolalia in autistic children. Journal of speech and hearing disorders, 46(3), 241-249.
Prizant, B. M., & Rydell, P. J. (1984). Analysis of functions of delayed echolalia in autistic children. Journal of speech and hearing research, 27(2), 183-192.

Thursday, November 30, 2017

Self-regulation, AAC access, and arguments that should not need to be

One of the big things with augmentative and alternative communication devices is that you're not supposed to take the device away from the person who uses it. The idea that you don't do that came up in the AAC class I'm taking this semester. The reason that came up is a bit different from the visceral, that's how I talk wtf reaction I have as a part time AAC user, but it came up.

The video was, "AAC in the Classroom for Students with Significant Disabilities: A Progression Strategy From BIGmack to SoundingBoard and Beyond!" It can be found on AbleNet under Ablenet university webinars, registration required but free. This quote led me to respond.
The only time they get a voice is when you give it to them. You need to leave the device with them so they start learning self-control.”
I suppose a student could have a self-control issue? Here's the thing: you have no way of knowing if that's an issue, if taking away the device has been a thing, because a person's natural self-regulation doesn't apply so well in scarcity, even if they already have the ability to regulate themselves. It's not just about regulating myself -- it's also about not knowing if the thing will remain available. If I think someone else might finish the chocolate cake before I get any, I'm going to go for it when I'm not quite as hungry (and haven't had quite as much of the healthier options) than when I know it'll still be there if I wait. The same principle applies with talking: say everything you can, while you know you can.

Scarcity over time absolutely can mess up any self-regulation that's been learned, too. Even if teaching self-control is a concern here, it's not always so much, "leave the device with them so they learn self-control." Sometimes it's, "leave the device with them so you don't destroy whatever self-control they have."

That's all besides my main issue: I've never heard anyone use the need for a speaking person to learn self-control as the reason they don't tape this person's mouth shut. Most people seem to get that taping someone's mouth shut is not OK. (Most, not all. In the context of really nasty abuse, it happens, and be warned if you decide to look at the details.) Most people don't need a self-control argument in order to understand that taping someone's mouth shut is unacceptable.

An argument about the need to teach self-control shouldn't be needed here, either. If we have to consider teaching self-regulation (a useful skill, to be sure!) as an argument for why we shouldn't be taking away a person's communication access, things have already gone badly wrong.