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 even though 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, November 18, 2015

Review: The Real Experts

Today, I'm reviewing The Real Experts: Readings for Parents of Autistic Children, edited by Michelle Sutton and published by Autonomous Press.

Or I'm reviewing most of it. The cover art is mine, and the essay on autism and language is also mine. I am not reviewing my own contributions, and will leave that to people who are not me. Suffice it to say that I would not submit an essay I disagreed with for publication.

Looking at the table of contents, I recognize many, but not all, of the contributors. Nick Walker, whose description of the neurodiversity paradigm I use frequently, wrote the foreward as well as contributing two essays in his section. Michelle, the editor and writer of the introductions (in addition to a short introduction for the book itself, each contributor gets an introduction,) is an online friend of mine. I know Emily. I am Alyssa, and I think I know myself. Kassiane, who coined the term "neurodivergent" because there's many ways to be neurologically interesting, has been a friend of mine mostly online, and we've met in person three times now. I've read Cynthia's and Sparrow's blogs. I've met Michael, Elizabeth, and Amy at conferences. Morénike I was not able to meet because of transit difficulties, but I was impressed by her distance presentation at Autcom. I don't know Ally or Briannon, but having read their pieces, I intend to look at their blogs now!

Nick Walker puts his metaphorical finger on the source of many issues autistic people face: the world isn't designed for people like us. Assumptions about what thriving means and about how you reach any given ideal of success were made with non-autistic people in mind and don't apply well to us. He reminds us of the "Golden Rule of Neurodiversity," modeled on the Golden Rule of treating others as we would want to be treated: "Respect the bodily, sensory, and cognitive needs of others as you would want your own to be respected, whether or not you understand the reasons for those needs." His words are important for those working with autistic children (or adults) to read, but what stands out most to me is not any broad statement on autism or neurodiversity. It's the title of a mix CD: The Logistic Difference Equation. I think I need to ask for the track list of that CD.

Ally, an autistic parent of autistic children, writes a letter to parents who are just finding out their children are autistic. She writes the letter she would have wanted to read. I love her words, and I love her metaphors. "Being autistic isn't being at a train station, it's being on a train." We learn. We grow. And maybe, just maybe, we ride trains. I ride a lot of trains, because I don't drive (yet.)

Emily tells us just how important it is to tell your kids they're autistic, because they're going to be different whether or not you tell them, and they're going to know they're different whether or not you tell them, and all you can do by hiding the word autism is make it harder to get useful information about how we work. Her essay is important.

Cynthia's got two pieces, one that reads to me like a (much-needed) questioning of the concept of socially appropriate, with stimming as the primary example, and another a specific defense of stimming. As a moderator of the mostly inactive Tumblr,  F, Yeah, Stimming, I am all in favor of stimming.

Kassiane writes about the unreasonable cost of indistinguishability from one's peers, that unattainable and constantly moving target that gets used as a reason that an autistic person must not really need whatever supports they briefly had. The lessons learned alongside therapy's consciously taught one of indistinguishability form unreasonable expectations, and seriously, do not do this to your kids.

Sparrow continues to write about therapy, specifically ABA, touted as the "gold standard" for autism treatment and therefore the label slapped onto as many kinds of therapy as possible, accurately or not. In an extremely useful move, she tells parents what to look out for in order to tell good therapists (meaning the ones who aren't actually doing ABA based therapies even if they're calling it that) from ones who are going to teach children that their bodies aren't really their own and essentially grooming kids for abuse.

Michael writes about the contradictions (and resulting problems) of being perceived as "not that autistic" while actually being ... that autistic. You see, being able to hide certain aspects of our autistic selves is very different from not having those aspects, just as much as it is different from not being able to hide them. She also has a perspective on what it means to be a teacher that is important for professionals as a whole to note: it's not about making her classroom as accessible and inclusive as possible for her, but for her students. If we (who supposedly lack empathy/theory of mind) can figure this out when teaching a mostly neurotypical abled class, well, y'all abled neurotypical teachers have no excuse not to understand this when teaching us.

Elizabeth writes from the perspective of a mother, on how things have improved since she was a child, and then on how she navigates social and sensory overload out in the world. Not "in her own world," but out in everyone else's world.

Briannon speaks to the exclusion she finds being Autistic herself, being queer, and being the mother of autistic children: queerness and autism both mean exclusion from the typical heterosexual mothers groups, disability from the queer groups, autism as identity and queerness both from the typical autism parent groups. So she builds her own space, and will fight to defend it. She speaks to the importance of having such a space, because the rest of the world isn't that space.

Morénike writes about the importance of social media, challenging the idea that it is somehow fake and that getting off social media and going out is more "real" than the interactions that happen online. This piece is not directed exactly at parents, but at people in general, and the anti-social-media backlash in specific. Given the social and sensory overload that Autistic people frequently deal with outside in the "real," world, a challenge to the idea that things online are somehow less real is needed for Autistic people and those supporting us. Offline isn't always accessible.

Amy writes about attitudes. Not so much the attitudes of the disabled person themself, but that of others around us. Attitudes in general, attitudes towards our communication (when does it get to be seen as real?), attitudes about our value as people and how it is tied to a system of grading people as more or less similar to able people. Given how much the attitudes of people around us show in the supports we do (or don't) get, and in the expectations for our educations and lives, attitudes seems a good way to close out the book.

Every essay was great. Every essay said important things, without much in the way of duplication, but with connections between some essays. I definitely get why Michelle chose the pieces she did, and I am glad all the contributing authors said yes to this use of their work. Seriously, my TL;DR: version of the review would be "Go get the book now."

Tuesday, November 17, 2015

URI Honors Colloquium on humor and disability

Every fall semester, the University of Rhode Island has an honors colloquium in which they run a lecture series around a topic, and the lectures are open to the public. This semester, the theme is humor, and tonight R. Bruce Baum came to talk about disability and humor. I was nervous at first, because I looked him up and he's a professor emeritus in a special education department that won't even call itself that -- it calls itself an exceptional education department. I was also nervous because, so far as I could tell (and I was confirmed correct at the lecture,) R. Bruce Baum does not have a disability himself. I still feel it would have been better for the Honors Program to get a disabled comedian or disabled humorist to speak on the topic of humor and disability, but that is a separate concern from whether or not Dr. Baum did a good job with his talk that actually happened. By and large, I think he did.

One of the things I liked about his talk was that he used a lot of examples of comedy by disabled people. He mentioned the comedians with disabilities act, and he mentioned the work of John Callahan, Dan Wilkins, and Michael Giangreco, along with other comedians with disabilities. His examples of modern disability humor, of good disability humor, came from disabled comedians. He included comedy that pokes fun at the special education system, which was another pleasant surprise.

That's not to say everything was perfect. He does come from a special education background, and as such he unsurprisingly seems to think person first language is more widely expected and wanted by people with disabilities than is actually the case. It's not a bad rule of thumb for disability in general, and it really did start with self-advocates, but the particular example he gave, in a pretty common error, was one of the disabilities that actually frequently goes with capitalized identity-first language. (Whoops.)

He also asked audience members to make eye contact with each other and shake hands with each other at the start as a sort of engagement thing. Eye contact and engagement are not actually the same, speaking as an autistic person. He did recognize that not everyone in the audience would be able to stand, which was nice, but I'd have liked some recognition that not everyone in the audience can make eye contact either. Autism isn't even the only disability where eye contact could be an issue, not to mention cultural differences.

And there was one potential benefit of humor that I think could have been done better. It's not even that he's wrong about it -- humor absolutely is good for an appreciation of life in general. It's just that the way he says it, it really came off as able people telling disabled people how to be better at being disabled. Humor can apparently "assist persons with disabilities to develop an appreciation for living," and honestly this reads a bit helpy helpers who help-esque to me.

Still, the bits that made me go "ehhhh" were comparatively short (probably five minutes total between the three things, in an hour long event) and I spend quite a bit longer fist pumping at cool stuff, like the T-shirt that read "severely normal" and cartoons poking fun at pity narratives as well as at assumptions about disability in general. I liked how he pointed out the differences between using disability as the joke, as happened with the speech disabilities used in Looney Toons, versus disabled people making jokes about their disabilities and about others reactions to their disabilities.

The historical bits were interesting as well. He didn't shy away from the fact that institutionalization is a big part of disability history, and he talked about both the exploitation of freak shows and the fact that some people with disabilities who were in freak shows chose to be there because they considered it a better option than the work house or the poor house or the institution.

Overall, I'm glad I went, and while a lot of the explanations of the humor were directed at the audience he (probably correctly) assumed was mostly abled rather than at disabled people, the examples of disability humor he gave were really good. Better yet, he came right out and said that he knew better than to speak to a disabled audience about disability humor, because they were the ones who'd be creating it, not him.

Sunday, November 1, 2015

Autistics Speaking Day 2015

Autistics Speaking Day 2015 was a day when I did not speak aloud.

Not because I couldn't.

Because I didn't need to.

I used social media sites to talk to the people I wanted to talk to, today.
I rode my bicycle around the town, exploring, and then I sat and watched a river flow by, today.
I worked on applications to PhD programs, today.

And because I did not spend the energy on speaking aloud, I have the energy for other things.

I write.

Today, like every Autistics Speaking Day, is November 1st. That's the first day of National Novel Writing Month. I am a bit of a NaNo Rebel this year, because what I am working on is not a novel, but I am participating. I have quite a bit of writing that I am working on -- statements of purpose and personal history statements and various other essays that I need as I apply to PhD programs, short fiction with autistic characters, either of the two novel ideas I've got on the back burner, blog posts, poetry, narrative of some sort for Autonomous Press -- the list goes on, I'm sure.

I read.

Like most writers, I read a lot. I read fiction, both in the genres I write (science fiction and fantasy, mostly) and in other genres. I re-read Watson and Holmes: A Study in Black today. I started reading Accessing the Future today. I read blogs. I read non-fiction. Right now I'm reading Biopolitics and Utopia, and also Neurotribes.

I meditate.

Like many Autistic adults, I have pretty bad anxiety. Meditation isn't a miracle cure, not by any stretch, but it calms me down a little. One more tool in the box is always handy, in any case.

I speak, metaphorically.

Because I have the time and energy and platform to do so, I can tell my stories to anyone who'll listen. I can tell people how oral speech doesn't matter that much to me, that whatever they might imagine being unable to speak is like (for the folks who have to imagine), that's probably not how it is for me.

Here's the thing:

I don't actually care when speech gives out on me, not in itself. I might be annoyed about the reason, like when flickering lights gets me. I might be frustrated if it's disproportionately hitting one activity (sorry, measure theory.) I might be scared if I'm around people whose reactions to speech going offline are as yet unknown, because sometimes people do react poorly. I might need to think about the logistical question of how best to communicate without speech, if it's the first time I've needed to in a given environment.

These are all different from being upset about the inability to speak. Some of them boil down to being upset about ableism, whether about access barriers or about biases against people who don't speak with their mouths. Even the logistical question could fit under that category, since there'd already be an easy answer if society were really set up for people who don't speak orally.

My concern about disproportionately losing speech during one particular class I'm less certain on how to classify. Partially, as much as the professor and my classmates seem to be totally fine about my not always being able to speak and my writing on the side board instead when I can't, I'm worried about what they're going to think. As a teaching assistant, I teach a class, face-to-face. As much as I know teaching without speech can be done, as much as I know people who do it, I haven't done it yet. Not classroom teaching with 30-50 students in a lecture, while I can't talk.

I've done tutoring without speech, and I gave a conference presentation without speech, but I've not done regular classroom teaching without speech yet and I don't really want my colleagues wondering how I would manage that until after I've got an answer I know works.

Whatever it is, it's still not finding the inability to speak inherently frustrating. And I've solved the logistical questions for most of the environments I spend much time in.

And here's what I don't do:

I don't purposefully avoid methods of communication I know I can use, and effectively. I don't think that doing so would teach me what it's like not to be able to use those methods, because times when speech is working fine but I am choosing not to speak for some reason (someone else is talking, sore throat, not actually having anything to say) are very different from the times when speech isn't working.

That's what Communication Shutdown would have been, and it's what taking an hour of silence (at a time you choose, too!) to try and understand what it's like not to always being able to speak would be. 

Saturday, October 31, 2015

#AAC Awareness Month: When speech output isn't best

First, an explanation of the abbreviation. AAC stands for Alternative and Augmentative Communication, and it's basically the fancy professional word for how disabled people communicate when we can't talk or when speech alone isn't meeting our communication needs. I've written before that I'm not a huge fan of it being considered alternative because that implies speech as a default, and I still think that, but I am a huge fan of people knowing more about the ways we communicate when speech isn't working or isn't enough, and I am a huge fan of better support for folks who use other communication methods.

I am usually able to speak. I am often highly verbal. I am reasonably fluent (but not always speaking) in two languages --English and Mandarin Chinese. I am definitely literate, and I type about 60 good words per minute. That's not typical conversational speaking speed of typing, but it's still pretty fast, at about 85th percentile of typing speeds overall.

I have several methods of communicating when speech isn't working. Two of them have speech output: eSpeak on my laptop and Proloquo4Text on my iPad. These two see the least use of all my AAC options. Not the most. The least. It's not because these are the wrong sorts of speech generating devices for me, either. I have iPad, laptop, or both with me most of the time, as a college student, and as a quick typist with little use for visuals and a good understanding of language in general, typing out what I want to say is going to be faster than searching for saved phrases. Word and phrase prediction are handy and can sometimes speed things up, but Proloquo4Text has that capability.

It's not that these are the wrong speech generating devices for me. It's that my speech generating devices are not usually as effective as my other AAC options, in the environments where I spend most of my time.

That still leaves the question of what I do use, because I absolutely don't just stop communicating when speech stops working! And I don't hide away, either. I still go to class, and I still go to sports practice, and I still get on the field and play points in Ultimate (Frisbee) tournaments.

In my math classes this semester, I sit in the front row all the way to the right. Because of the classroom set-up, I can reach a side board from my seat without needing to get up. I carry a white board marker, and if speech isn't meeting my communication needs, I'll uncap my marker and write on the side board. I came to this solution when speech went offline unexpectedly in measure theory (one of the math classes I'm taking this semester) and needed to improvise. Since then, I've brought the iPad to class a couple times and even tried to use it once. For the classroom environment I'm in, the board is a better choice.

I also write on a white board in my office, in my classmate's offices, and in the graduate lounge. I answer questions about our homework assignments and have full conversations this way, just not very loudly since writing on a white board is nearly silent. I tutored someone in real analysis (senior math class) writing on my white board once as well. The white boards in the math department see quite a bit of use from the times when speech isn't working for me.

Picture of me writing "This is my most used communication board" on a white board. 
Take yesterday for an example. Two of the lights in my building started to flicker, and completely predictably, this did a number on my ability to talk. As soon as I saw the first light, I reported it (seriously those are a safety risk, photosensitive epilepsy exists, my losing speech is nowhere near the worst thing that could happen because of a flickering fluorescent.) I also knew that I needed to make sure I had a workable communication method other than speech at all times for the rest of the day. As it turned out, speech stuck around until about 1pm, then I got it back briefly around 2:40. It went kaput again right before 3 and came back around 4, after which it was iffy but extant for the rest of the day. Two of the three no-speech hours, I wrote on a white board to communicate. Writing on a white board is definitely my most-used "AAC."

It's also something every single one of my colleagues does as a supplement to their communication when teaching, but it doesn't go under the "augmentative and alternative communication" umbrella when they do it.

After writing on the white board, my most-used communication method is probably Flip Writer, on my iPad. This is an application designed for use as AAC, unlike the white board marker which was not designed with disabled people in mind. When I'm having a conversation one on one, probably sitting down, where it'd make some degree of sense for us to be on opposite sides of a table, I'm using Flip Writer. Yesterday, when I wasn't expecting speech to stick around, I brought my iPad to lunch with a professor. (Lunch wound up being the last thing I did before speech went.) I actually used Flip Writer yesterday before seminar to talk to a classmate, and I used it at Autcom to order food at a restaurant when I couldn't speak.

Next up is regular old pen and paper. I've used this at ultimate practice a couple times to talk to a captain or the coach, and I've used it when I didn't have the iPad with me and either didn't have my laptop or didn't want to take it out for something fast.

Now we get to my speech generating devices. I tried Proloquo4Text once in measure theory. Once. Technically it was after class had ended, but everyone was still in the room. I tried it for one sentence and went straight back to the white board I could reach from my seat. I really do use Proloquo4Text on the side lines at Ultimate (Frisbee.) I also used it meeting with my department chair when I needed a permission number to register for measure theory. I typically use Prolquo4Text when I'm in a small group, want to address everyone in the group, and don't have easy access to a white board.

I use eSpeak for similar reasons to Proloquo4Text, under similar circumstances. The big differences between eSpeak and Proloquo4Text are that my laptop takes more time to set up than my iPad, eSpeak doesn't have word prediction, and eSpeak can generate speech in Mandarin Chinese. Proloquo4Text currently can't do Mandarin, so this probably the biggest reason I use eSpeak. It works with Chinese. (So does Flip Writer.)

Wednesday, October 21, 2015

(Sometimes) Wearing Pride on My Bag

I am fairly open about being Autistic, about using AAC (Augmentative and Alternative Communication) both online and offline. Fairly open. When I am a student in a classroom, the teachers know, and most of my classmates usually know too. As an athlete, my coach knows and my teammates are aware if they remember. As a person on my college campus, people who look at my backpack may well see the buttons -- usually.
Purple backpack with three buttons on it."Our homes not group homes" is obscured by glare, while "disabled & badass" and "I USE AAC" are legible.

As a teacher, my supervisors know. My students don't.

Or at least, I haven't told them. I put some thought into arranging my schedule so that speech is still working while I teach, face-to-face, in the classroom. I don't tell them that speech going kaput on me can happen sometimes, so if it ever does happen, they'll be finding out it's possible right as it happens. I don't tell them I'm autistic. I only tell the ones who are seeking accommodations and seem nervous about it that I'm disabled at all, and the information they get is that I am also registered with disability services. Not that I'm autistic, not that I use a speech generating device part time, not that I can't always speak.

I take the buttons off the back of the backpack before I go teach, and I put them back on after class.

I know full well that my department would back me up if some of my students found out that I'm disabled and decided to take issue with it, and I suspect that most of my students wouldn't take issue, but there are some chances I am not ready to take.

My buttons represent my disabled pride. I remove them to teach because pride is an act of bravery, and I only have the energy to be brave some of the time. Not all of the time.