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

Wednesday, June 27, 2018

"They aren't having communication breakdowns"

I've heard plenty of arguments about why AAC isn't needed. Thankfully, I hear most of them in the context of people explaining what they do when they encounter them, rather than the context of people trying to tell me not to type to communicate. Today, Dana Neider, the blogger behind Uncommon Sense, gave the keynote for AAC in the Cloud today. She mentioned one that I hadn't heard before and I wasn't really expecting to encounter.

“They aren't having communication breakdowns.”

Now, I've studied a foreign language. I suspect many, if not most, of you have as well. I took Mandarin Chinese for 11 years (ages 11-21), and spent a total of a year, including the entire last academic year of study, in China. By the definitions set by the American Council for the Teaching of Foreign Language, I reached Superior proficiency for reading, writing, and listening, and Advanced High for speaking. This was hard work! Guess what's in the explanation of the Advanced High proficiency level? That's right. Occasional breakdowns that are based in language proficiency. (They don't talk as much about breakdowns that happen for other reasons.)

The next level up, Superior, is supposed to be equivalent to a college educated native speaker in terms of what you can say. (We're not expected to actually sound like one. Accents exist and every culture has its own common expressions.) So. One step down from a college educated native speaker, we're still talking about occasional language proficiency related communication breakdowns. And you want me to believe a K-12 student never has any? Sorry, but no. I don't buy that. I've met kids ever in my life. Heck, I've been a kid ever in my life.

Or. I'm a teacher. Trying to explain new concepts to people is literally my job. Do I use more than just speech to do this? Absolutely. (I presented at this same conference, about AAC in the classroom, for teachers who need AAC.) Do I experience communication breakdowns in the classroom on occasion? Again, absolutely. Of course I do. Students aren't sure what question I'm asking them. I'm not certain what question they're asking me. Communication issues always, always, have at least two sides. It's neither just me nor just them. If a tool can help either side, or both sides, repair the breakdown, still take it.

Besides, can you honestly say no one's ever misunderstood what you were trying to tell them? In the last few days, weeks, months, have you never been misunderstood, or misunderstood someone else? No one even got your coffee order wrong? Really? Because I got asked if I wanted a hamburger, and then got handed a cheeseburger when I said yes. I eat hamburgers, but not cheeseburgers (texture issues.) That's a communication breakdown right there. AAC wasn't required in order to fix it, but it happened.

So. We've established pretty well that I am 100% certain the person making this argument is wrong, not just in their conclusion, but in their premise. I don't think they're lying, but they're incorrect. Their student or client is absolutely experiencing communication breakdowns. Why don't they know?

  1. Their client or student doesn't have the needed communication access in order to say they're having communication breakdowns. I know, from experience, that if I need to use speech in real time, I'm not going to be able to correct most misunderstandings. It's just not going to happen. So you might not even know there was a misunderstanding. Give me AAC and I have a shot. Which, of course, now means you know there was a problem. That's actually progress!
  2. They've learned from experience that trying to repair communication breakdowns isn't worth it. Have you ever decided not to address a misunderstanding because you thought it wasn't worth it, or that it wouldn't work anyways? I know I have. And yes, I've done it in an educational context, with points for a class on the line. This past fall, even. In an environment where I had access to AAC and could totally have typed for the conversation. I didn't think it was worth the time or energy it would take, so I let it slide. Imagine that attempts to repair communication breakdowns mostly haven't worked in the past. How often are you going to try, even if the option is available?

Neither of these are reasons to skip the AAC. The first is actually a reason to provide it. The second … AAC won't fix this problem. However, if communication needs not being met was part of why past attempts at correcting misunderstandings didn't work, proper access to communication (likely including AAC) can have an effect on the decision-making process here. That doesn't mean they'll always decide to tell you about misunderstandings. Do you try to correct every misunderstanding you ever encounter? Or do you let some things slide, especially if you don't know someone well or don't trust them to change their mind even given the proper information? Besides, plenty of disabled people have reason to mistrust therapists. We might not want you to have the "correct" information! So providing AAC may or may not lead to you knowing about communication breakdowns when they happen, but if you think there aren't any, that just means you're missing them.

TL;DR: Everyone has communication breakdowns sometimes. If you think your client or student doesn't, that means you're not finding out about them. Maybe they literally can't tell you for communication access reasons, or maybe they've decided it's not worth trying to repair the breakdown. Make AAC available anyways.

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 not 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?