"But AAC Increases Speech!"

So this is one of the big arguments I see in favor of giving people who don't talk, or who only talk a little, access to augmentative and alternative communication (or, as sometimes I think of it, maybe-actually-working communication. Because most of the time, if parents and teachers are considering AAC, that means that the communication that the person has is not working. Maybe it's a matter of not knowing all the words, maybe it's a matter of other people ignoring the behavior side, there's always multiple sides in a communication breakdown but that doesn't change the not-workingness.)

And people worry that if they let their kids use AAC, their kids won't talk.
Study after study shows the opposite, by the way, that if you do speech therapy type stuff and AAC stuff at the same time there's both a better chance of speech and more speech than if there was only speech therapy stuff. Even just "we're doing speech therapy, here's an iPad AAC app too" increases speech more than just the speech therapy.

But.

Here's my question.

Let's say that a person did decide, after getting their AAC device, that they were done trying for speech. Let's say that a person did decide that typing or picture cards or whatever else just worked better and they were done trying to make mouth sounds.

WHY IS THIS THE THING YOU ARE AFRAID OF?

No, really.

Why?

Where is the problem with this?

If a person is happy with how their AAC device is letting them communicate, which means it's working for them, why the insistence that they must also speak orally? Why the insistence that one method of communication is standard and ideal, while the other is, well, "alternative and augmentative." Why is AAC even needing to deal with the accusation that it could reduce a person's motivation to speak?

Cause I'm not going to lie. My motivation to speak is lower when I can just type. If I feel like I'm on the edge of speech going kaput, or speech is getting tougher, or whatever else? Once speech is an effort much of at all, if typing is an option I really do just go, "Screw it, I'm typing." And I fail to see the problem with that! It's me choosing the method of communication that works best for me, and that should be a good thing, not used as the reason to keep AAC out of people's reach.

The Beginning of Her Hell

It's another short story! This time, I'm following an autistic girl named Leah, stopping in to take a look every so often from when she's about six months old through sometime in high school. Other people are... realistically terrible.

You can get The Beginning of Her Hell on Amazon for $0.99.

Image is of the cover of "The Beginning of Her Hell." The title is in orange text along with the author's name, Alyssa Hillary. The background is white, with a pair of blue eyes looking out over a typewriter.

One Reading Suggestion

I don't know how many of you actually read through that whole list of things I either cited or made notecards for about the erasure of queer autistic people, and that was so long ago that you probably wouldn't remember if you had... but there is one person where I cited seven of her articles. Those were part of a series called Double Rainbow, and I really, really suggest reading the series. For once, I'd even say read the comments- most of the commenters are Autistic people who get it, so far as I can tell. There are some exceptions, one of whom I cited as contributing to the erasure of Queer Autistic people, but mostly it was good.

Anyways. Heads up for a quote from that bad comment, because I'm handing over the notecard I got out of it.

Java Junkie claims that “Your critique of this fact makes me wonder if you realized you were reading a book about autism instead of gender identity.” despite the blog series being specifically devoted to the intersection of autism, gender, and sexuality, and argues that “Sexual identity is much to complex of an issue (ESPECIALLY for autistics) to address it more in depth than they did in a book that's meant as a general overview.” In doing so, she says that Queer Autistic people are too complex to address.

The fact in question is that parent guides were really bad on the subject of gender. They told parents to make their daughters do gender normative stuff. [Shaving legs and pits for girls was on this list.] Which, I understand that this is socially expected, and I can totally understand explaining to folks that it is (now try to explain why it's expected, good luck coming up with anything other than sexist nonsense because you can't.) What's not OK is making someone do it. We have the same right to knowingly go against norms everyone else does, even if/when a little extra checking in to make sure it's knowingly sounds like a good idea.

It's not that much more complex to say "Make sure kid understands what's expected and that if they don't do it some folks will use that as an excuse to be terrible, then let them chose." It's especially not that much more complex once you get into the question of "How would I make kid do the thing, anyways?" We think it's more complex because there's assumptions that "Tell kid what to do" and "Do socially expected things" are simpler, in this case the socially expected things being gender conformity, but... it's really not? The perceived simplicity is artificial, since attempting to keep up with gender norms is actually really complicated.

Anyways, assuming that "wants to write about a thing" leads to "actually writes about a thing" (meh, see the month long absence when I tried to convince myself the next thing I would write about would really be Li Jinsheng,) I will eventually talk about some other sources I cited in my paper that I think are good to read. Also, the paper is now a chapter in Criptiques. 

Handwriting: Not for everyone

So I pulled up some old notes from my iPad about NCIE over the summer. Specifically, I pulled up some notes from a session about Universal Design for Learning, which is a cool thing. People should be doing more of it. It's important. Not everyone learns the same way, and making sure everyone has at least some things they can do to learn (and that it's OK not to be able to do all the things) is a Big Deal.

Warning for school stuff and ignoring/invalidating access needs

So here's relevancy from there in case you didn't feel like looking at the notes.

"I want all students to write because that's what gets assessed on those horrible tests." NO. You want to change those tests. I'm sorry, no, you're talking about universal access, do it for real. Handwritten thank you notes can be an access thing. Not everyone can learn to handwrite. It's just not possible.

I don't honestly remember if the person giving the presentation said this, or if another person in the presentation said this, or if it was getting criticized. Just so everyone is clear, I have no clue 
who I am criticizing. Which means I'm criticizing the sentence "I want all students to write because that's what gets assessed on those horrible tests," and that's really it. Well, I'm doing it talking about universal access, since I'm doing it in the context of a presentation about universal design, and I'm going to be talking about disability, but there's no person attached to these words.

"I want all students to write." From the context I have, the meaning was "hand write." This actually is a problem. I know, there will be people who bemoan the "death" of handwriting, but a lot of the people who are now not hand writing at all are people who couldn't have done it legibly before. So all that's changing is the thing being complained about: illegibility or the decision to do something other than writing by hand. Wanting all students to be able to write by hand is already not being universally accessible. Some students can't do it because of CP. Some students can't do it because of other motor issues, like not being able to hold a pencil/pen properly, dysgraphia, etc. Some students can learn to do it properly, but it's so much effort to hold the pencil or pen properly that they can't also come up with new and creative words at the same time. Some can write without pain, but if you think anyone's going to be able to read what they wrote after... yeah, that's not going to happen. That's where I am, by the way. I got banned from handwriting my math homework a couple times, because my teachers couldn't read my handwriting. I can't always read my handwriting, honestly. If you want to see what it looks like, here. This is the typed up version.

So there's where I'm coming from as the main reason it's bad. I don't much care why you're trying to make everyone do a thing that not everyone is capable of. Not sorry, I don't care. Don't force the kid to do a thing the kid can't do. Go advocate for accommodations on "those horrible tests." And yes, the tests are bad. I did well with them because I read fast and can bubble things in and can use the test to take the test in many cases, but that doesn't make them good. It just means that they lined up pretty well with my specific set of abilities. Universal design means making sure enough of the tests line up with the students abilities that they can show what they know and pass. Don't break your moral of universal access because someone else doesn't get it. Go demand accommodations. The ADA is your friend here.

Someone must have mentioned handwritten thank you notes. I had to do those after my Bat Mitzvah. It was not fun, largely because it had to be legible. Ha. My handwriting. Legible. That is not a thing that happens, so it took obnoxiously long and it actually got painful because trying to make it legible does start hurting after a while. If typing thank you notes is an access need, you type those thank you notes. If a word processor not connected to the internet (heck, a text editor with no spell check on a computer not connected to the internet) is what you need to use for your essay questions because it's an access need, it's what you do. It's the ADA and IDEA and whatever else, you sue people if they try to tell you that's not a reasonable accommodation. It is. Yes, try to teach writing by hand because it's useful, but if a kid can't do it, accept that. Seriously.

Autism in the Blood? Autism Parenting

Trigger Warning: Early Intervention, Possibilities of Eugenics
Leslie, the same person who wrote "How did I know my daughter was autistic?" and possibly "Wholeness and Completion" (unsure, but the daughter's name is the same and the writing has the same extra commas,) also wrote the final article of the December issue, "Autism in the blood?," discussing blood/genetic testing for autism.
For a blood test, the reasoning seems straightforward enough. If we can diagnose earlier, interventions start earlier. Considering what the current interventions tend to look like, that worries me. If the ways that we changed our educational methods for autistic children were ways that worked better for them, instead of making them more convenient for the teachers, parents, and caretakers, being aware that the kid is autistic sooner would be awesome. So this is a mixed bag for me. In an ideal world, this would be really cool. Just as a matter of curiosity, I'd love to know which blood tests currently can and can't tell that I'm autistic. But with the ways that autism is currently handled, I am not comfortable with giving them any information on my genetics that could help them figure this out. Get me a world where knowing you're autistic ASAP is definitively better, not for "acting normal" as most therapies prize, but for navigating a world not designed for you, and we'll talk. In a world where one of the things I am most grateful for is how long it took people to realize that I'm autistic? Not so much.
I still think that the "oh hey, more genes associated with autism means more evidence that autism is genetic" thing is cool, though. The more evidence we have behind genetics for how autism comes about, the better I can smash people who try to tell me that I'm vaccine-injured or something.
The other big worry I have, which wasn't addressed at all despite the fact that the study about it was mentioned, was the issue with prenatally predicting autism. Australian scientists really did develop a genetic autism test using 237 genetic markers that is 70% accurate for, well, white people. (Bayesian inference and an assumed 1% autism prevalence rate gives an actual 2.5% chance that a fetus that tests positive will be autistic. It takes 99% accuracy to make it a 50-50% chance that the kid who tests positive will actually be autistic given a 1% prevalence rate, for reference.) Since the Australian one was designed as a prenatal test, my worry, of course, is selective abortion. The idea of people aborting because the fetus is likely to have a brain wired like mine is terrifying, and it's not something the author is talking about. I envy her innocence, I think.
She's talking about tests and hoping to diagnose toddlers and getting them "closer in relation to their peers by the time they enter school." I'm reading that and wondering: "closer how?" If we're talking about getting whatever forms of communication we can up so that they have similar overall communication abilities (AAC is success here) then I am all in favor. If we're talking about looking normal, I am decidedly not in favor. I don't think we need to abandon all teaching for autistic kids, but I do think we need to be taking a look at what therapies we're using as a higher priority than getting potentially harmful ones to everyone. Take a look at the correlations between ABA and PTSD before we keep calling it the gold standard and getting everyone to cover it?
Increasing social and language skills is great. Make sure you know the cost of the teaching methods, and make sure it's social skills the way they are actually done, not compliance or the way you wish social skills worked. Compliance opens people up for a lifetime of abuse, the way you wish social skills worked isn't going to make them any more friends than the way they think it should work, maybe fewer. Their natural ones will at least work with other autistic people.

I Am No Angel.

Every so often, I see quotes running around. Sometimes they are good. Sometimes... not so much. This one is sufficiently poor that it gets two posts dedicated to explaining what is wrong, as there are two huge problems with it. When I say huge, I mean huge. Take a look, and get ready for the first:

Assume the person with Aspergers is not intending to offend you. Intention to offend is actually a complicated line of reasoning that someone with Aspergers doesn’t have…People with Aspergers want to be nice. It’s very important to them even though you would never guess that by their actions. So if you tell the person what you want, and give specific direction, they will always try their best to do it, because they want to be nice. That said, them trying their best might look to you like not trying at all…Just because someone with Aspergers says no right now doesn’t mean it’s no later. No is a defense mechanism for “I don’t like change.” You can try asking again a second time later.-Petunia Trunk

I'm not even getting into the fact that this is supposedly just about Aspergers. Aspergers and classic autism aren't as different as many people think, and the differences in criteria are not the same as the differences in how they actually get diagnosed, and it's basically a mess. Speech delay is a pretty arbitrary line anyways, especially with the fact that people can gain and lose speech and how people can learn to use AAC instead of speaking and do just fine that way. (I have an AAC app on my iPad and a text-to-speech on my laptop. I have needed the text to speech.) It's an issue, but I just gave a reasonable explanation of why in a paragraph. This next one? It's big.
It's this: Autistic people can insult and offend on purpose. Sometimes we are jerks because we don't know better, and sometimes we are jerks because we really are jerks.
Claiming that "Intention to offend is actually a complicated line of reasoning that someone with Aspergers doesn't have" is wrong. Complicated lines of reasoning are totally fine. The social rules that will tell us what will and won't offend can be difficult (I don't always get them, to be honest,) but that has little to do with the intent to offend. It goes both ways, really. Autistic people can offend without intent, and we can fail to offend when we were trying to. We can even attempt to offend and then have it turn out that we did so in a completely different way than the one we intended. The issue is not with comprehending and having the intent to offend, but with knowing what words will satisfy the intent or lack thereof.
Claiming that people with Aspergers always want to be nice is false, it's silencing (Oh, they don't know what they're saying!) and it's reinforcing the Autistic Angel stereotype. You know, the one where the cute little children with autism are perfect angels who would never do anything wrong on purpose, they just don't know any better? It's one that comes from compliance being a high goal in all our therapies, from everyone just trying to make Autistic people do as we are told and not be mean to anyone ever.
And we do know what we are saying.
We might not always be aware of the exact emotional effects that what we are saying will have on a reader or listener. No one does- no one is actually a mind reader, no matter what some people might think. I could believe that I am worse at guessing the effect my words will have on a neurotypical reader than the typical neurotypical writer. I really could.
Guess what that is an extremely different statement from?
It's got nothing to do with my knowing the content of my words. I know exactly what I am telling you. Really, I do. We do. And people keep conflating "can't predict the emotional effect that words will have" with "doesn't know what they're saying." That's a huge problem.
I'm not usually trying to offend you, I'll admit that (Sometimes, offence is the only way I think I can get your attention, and I will try. So... yeah, I can intentionally offend as well.) But I am trying to make you think, and I am trying to point out problems that I see in the world. If I offend you in the process? I really don't care. If I make you uncomfortable in the process? I really don't care. If my words have that effect, it's because there are things in you that you need to be looking at.
In your rush to defend my intentions, don't deny me tools of communication. I have the same right to offend when I so choose that you do, and I have the same ability to do so, both intentionally and not. I know people like to think of Autistic people as being angels, but we only seem so when you deny every action and intention that is not in line with your idea of us as such, either by teaching further compliance or by questioning if we are really Autistic. We have the same range of temperaments that you do, and I am no angel. 

Not Children

Trigger Warning: Infantilization of people with disabilities

If we recognized that children are people, that children have thoughts and feelings and needs, that in any conversation about what should be done about a child (a sign that we're already looking at this wrong when we're doing something about a person...) the goals the child has actually matter, that there is such a thing as child abuse, that there are limits on what is and is not acceptable to do to a child all need to be thought about before the convenience of the adults, the whole mental age thing wouldn't get one whit more accurate. It would probably get less creepy, since being seen like a child is seen wouldn't imply the same loss of control over one's own life that it does now, but it would be just as inaccurate as it ever was.
A developmentally disabled twenty-year old might not be able to communicate her emotions in speech any better than the kindergardener next door, but that doesn't make her somehow equivalent to a kindergardener. There's still fourteen or fifteen years of life experience, fourteen or fifteen years of maturity, between the two. Even if there are problems communicating these differences, they are still there. We didn't somehow stop developing emotionally when we were five or six and just get stuck there.
We don't somehow have only the intelligence of a toddler, and a toddler is not somehow unable to comprehend what happens around them either!
We're not somehow children trapped in adult bodies, not any more than you are. (Yeah, I know- sometimes you might feel like you didn't really mature and that what on earth are you doing in the adult world you're not ready! We might have that experience too, but it's not evidence that we actually are still kids any more than it is evidence that you really are still a kid. Be consistent, here.)
When I can't speak, I don't suddenly become five months old again. (Yes, I was talking at six months. It happens.) When you get laryngitis and can't talk for a few days, even, no one thinks that you are whatever age you learned to talk again inside. No one considers you an infant for it. When I lose speech, it's not based on a sore throat, but the effect on parts of my thinking other than "make the words I am thinking actually come out using my vocal cords and mouth" are unaffected. (They might have been affected by whatever caused me to lose speech... but generally, once my brain gives up on that I've got enough energy to keep everything else running normally. As far as my other mental processes go, I'm probably better off losing speech than not, since the energy has to come from somewhere and if I'm at risk of losing speech, I'm already pretty overloaded and something has got to go.) The point is, the rest of my mind is working fine. The reasons may be very different, but the effects aren't as different from laryngitis as you might expect. Consistency says that the reactions to each shouldn't be so different, then. Niether somehow reflects on the "mental age" of the person it happens to. It doesn't work that way when the reason for the inability to speak is a motor control issue, either. It's still not a reflection of mental age. It never was, and it never will be. People just sometimes act like it is, and that's wrong, both factually and morally.
If we treated children like autonomous beings who just needed a little more help, it might not be as creepy to make this sort of argument, and there might not be as much of a moral issue with the whole concept, but it would still be factually inaccurate, and I'm pretty sure it would still need to go. Those added factors just make it worse.