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

Sunday, September 16, 2018

Five Meals

Hi all, long time no see, time for a "meet the blogger" type post to see if I can get myself writing. (It's been a rough year, and not just because of the political situation. Though being scared of that makes things much harder.) Anyways.

That's the short version. Food is an important part of culture, and of who we are. That's true of both the special foods (that cake!) and the everyday (mac and cheese).   Here's the explained version of why I think each of these five dishes tells you something about me.

  1.  Mom's chicken noodle soup means home, and it means comfort. When I get sick, this is what I want to be eating. It's a very concentrated broth (sometimes made by starting with store-bought chicken broth and then boiling the chicken in it) made entirely with legs and thighs instead of a whole chicken. Noodles are done separately so they don't get soggy, and so mom and I can have different soup:noodle ratios. I basically want a bowl of noodles and chicken with a few pieces of vegetables, barely covered by broth. (My non-Jewish stepmother actually makes a more "traditional" Jewish chicken noodle soup than my Jewish mother does, but that's because my mom modified the recipe so we'd like it better.)
  2. 拉面 is something I ate a lot of every time I studied in China. It's a noodle soup, but Chinese instead of traditionally Jewish. Long, thin noodles in broth, with some shaved meat (beef, where I got it), some vegetables, and a pot of spicy oil available somewhere if you wanted to make it spicy. At the place on campus at 浙江大学 (Zhejiang University), there were just the two options, a small bowl or a large bowl. Most other places where I ate this had a variety of noodle dishes, but this is the one that was already familiar. It was also the cheapest, and I was a student.
  3. Mac and cheese with cayenne and tuna: Think boxed macaroni and cheese, but we buy our own cheddar cheese powder in bulk so it's not technically box mac and cheese. It's the same basic recipe, but heavier on the cheese, butter, and milk (whole milk!), and then we add some extra spices and put tuna in it. Cayenne is the main extra spice. When I get queasy, this is one of my safe foods. I'm aware that's weird, but it works. (When I was in Tianjin and couldn't cook, I put noodles in my basket at local 麻辣烫 place for my safe option of "absurdly spicy noodles." At restaurants in the US that have it, a seafood alfredo is usually as close as I can get, and will be my order if I'm queasy.)
  4. Lamb vindaloo. From my sophomore through senior years of high school, I was on the Eastern Massachusetts team for American Regions Math League. (Well, the E team for it. We sent three teams and went A, E, B for some reason that I never understood and never really asked about.) While we were in Pennsylvania for the competition, I went to an Indian restaurant with some of my teammates. I forget what I got. A teammate with no spice tolerance got vindaloo. I finished his vindaloo, and it has been my favorite Indian dish since.
  5. Three layer chocolate cake with chocolate whipped cream frosting I make for my birthday. I got the recipe from my dad, who also makes it for his birthday. He makes it for one of my sister's birthdays too. We all have the same favorite chocolate cake. The recipe comes from a book of chocolate desserts. When I make it, I use a darker chocolate and slightly more of it than the recipe says, and we all take it out of the oven a bit earlier than the suggested time so as to get the suggested texture.

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 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.