Why I’m Proud of my Community (including our allies!)

This week has been good and bad.

A major autism organization started this off by posting a really horrible essay (the comments are actually good on this one, though – another thing that makes me proud of my community) about their policy summit. Besides for other horrible stuff in the essay (we’ll get to that), the actual summit will apparently consist of a bunch of people chosen by Autism Speaks to tell government “what autism says.” One group is absent though: autistic people. Our voice isn’t important to the group that claims to tell people what autism says.

Immediately, several autistic-run organizations sprang into action. I was thrilled to see an organization I’m part of, Association for Autistic Community, quickly decide, YES, this is something we need to speak out about. We joined with ASAN, an autistic-run group that is extremely effective in advocating for the well-being of autistic people, in issuing a joint statement about what Autism Speaks has done.  But we weren’t the only ones to make a statement: Autism Women’s Network made a statement of their own.

Then, we saw a powerful advocate organize a protest of the Summit. From all accounts, it was a successful protest.

See that? In the span of about 48 hours, we’ve (autistic people, that is) issued formal statements and organized a successful protest against an event. But, uh, sure, we’re not qualified to sit at the table for discussions about what to do about the problem of our existence put on by an organization claiming to understand something intrinsic to our being.

I’m proud that our community did this.

But that’s not all we did. Many, many autistic bloggers wrote about the event. Here’s just a few:

Of course some of us did a bit more digging. Lydia discovered that Judge Rotenberg Center was one of the featured exhibitors at the Washington DC Autism Speaks Autism Walk (edit: I thought it was an upcoming walk, but it was a past walk). Lest you don’t know about JRC, you can watch the below horrific video used in a trial against them:

Again, this video is very disturbing, only click if you can handle that. In the video, a kid is shocked for refusing to remove his coat.

Ironically, Autism Speaks previously issued a statement against the use of shock by JRC. Now, they featured them as a resource to parents at their most well-known event, their autism walk. Disturbing indeed. For what it’s worth, the trial ended in a settlement. I’m proud our community stands up to this and continues to fight – and publicized the support given by Autism Speaks to the only school in the USA to use electric shock to discipline students (and, yes, other students get students that had problems in other programs, a common refrain used by people to justify awful behavior).

This morning, another surprise event – John Elder Robison, one of the only (if not the only) autistic voices on an Autism Speaks advisory panel, resigned. He wasn’t the only one. A mom, invited by Autism Speaks, who personally knew Suzanne Wright (one of the founders), spoke out about the hate as well in one of the most powerful pieces written this week.

But this wasn’t all – our other allies have been here too. Parents are fed up with being told that their kid is a horrible, diseased, terrible, a drain on society, and destroying their families. And they’ve shown themselves to be the allies we (and their children need) – and very much in disagreement that they aren’t “living” but merely existing (as, apparently, a family with an autistic family member exists, and doesn’t live, according to Autism Speaks). They’ve all written brilliant texts that show their main worry about Autism Speaks isn’t political gain, but rather the well-being of their child. Autism Speaks hurts their children.

 

(edit: I also came across this after I made the initial post) And then there’s people like Spaz Girl who aren’t parents of autistic or autistics but might be classified as “just an ally” (there is no such thing as “just an ally” – you all are very important). She wrote This is the Week that Autism Speaks Meets its Downfall.

(edit: added to the original post) Special education professionals also are speaking up! Tim wrote, “The Best Argument Against Autism Speaks: A Special Educator’s Perspective.”

(edit: also after I made the initial post) Even the Autism Society of America (historically hostile to autistic people, but this organization has seen tremendous change in the last few years) has made a statement.

I am proud of my community. I’m proud of these allies. I’m proud that there are people in my community who get it. Who understand that slick advertising isn’t enough, that there actually has to be some substance behind saying you care about autistic people.

I’m so damn proud. We don’t need Autism Speaks to speak for us. Thank God.

Autistics Speaking Day

I want to say something. So here goes: FUCK.A bunch of text, including *(#! #W:# and similar text, to stylistically represent internet cuss word obfuscation

Seriously.

No, I’m not trying to make the blog unsafe for kids (that said, I’d love to meet the kid who hasn’t heard the word “fuck”).  But this is a huge part of what I want to say: we will say things people like.  And things they don’t.

We’ll cuss. We’ll insult people. We’ll talk dirty. We’ll lie. We’ll do all the things that the sanitized, nice, touchy-feely movies about escaping from autism or about how there are geniuses in the autistic population won’t say.

We say – if we’re allowed – these things even if we use speech devices. Too often, we’re silenced by being given devices that don’t speak these words. (hint to parents: if your child uses a speech device that uses a language system – not just spelling, but a word-based language system – and it doesn’t include some words you don’t ever want to hear said, the vocabulary is too small for your kid) Seriously, kids cuss. So should autistic kids. Just like neurotypical kids, we need to learn what is and isn’t appropriate in what context. Whether you like it or not, it is appropriate for two fifth graders to share lists of cuss words with each other. It’s not appropriate to do so in the hearing of an adult. That’s a pretty important social lesson to learn – that your communication needs to change based on audience. How do you learn that if you’re only options in language are always appropriate for the adults?

We say we’re horny. That we’re aroused. That we want to have sex. Maybe even that we want to fuck. Just like a neurotypical does. Sure, there are all types of sexualities among autistic people, including asexuality, but most of us aren’t asexual. So we want these things. And need to talk about it. Yes, there are more and less appropriate places. And, yes, we may or may not have our parents’ moral values. But we need the same rights that any other adult has – the ability to express our sexuality, including expressing it in ways that while legal may not be what our parents would like.

Too often, we live in group homes or institutions where the staff fears the complications that a sex life would bring into their own jobs. Or have religious views about what sex is or isn’t okay. That’s fine if we willingly agree to those rules and have real options and places to live that don’t include those rules. But most of the time, we don’t get that choice when placed into group homes or institutions – we have to take what we get, or run away. A neurotypical might choose to live in a monastery. An autistic shouldn’t be forced to. Yet, studies have shown that many – quite possibly most – group homes ban homosexual relationships while allowing limited (usually way too limited) heterosexual relationships. It’s another place where our desires don’t matter.

We also need to be able to say “NO.” As in, “No, I don’t want to go to work today.” Or “No, I don’t want to eat that slop.” Neurotypicals get to do this. Sure, there are consequences (although often we get away with some of this – how many people use a sick day when they aren’t sick?). Heck, sometimes a neurotypical might wake up in the morning and decide – for better or worse – that going to work sucks, that there is more in life than their job, and that they really don’t want to go to their job. Ever again. Yep, that causes unemployment sometimes, but it’s something many neurotypicals have done sometime in their life. They were allowed to. Sure, there are consequences. But they weren’t prevented from making the choice in the first place.

So I guess that’s my theme: if people want us to speak, you need to let us speak. Even when we say shit you don’t like. We’re not pets, we’re not puppets. We’re human. And that means you won’t like every moral choice we make. Just like I won’t like every moral choice you make. That’s life.

 

The iPadification of Communication

Remember Apple’s video about how the iPad is helping Autistic kids?

Ignoring the fact that a video about selling iPads giving people a voice doesn’t actually have anyone using that voice to talk about the issue (it has a parent, a clinician, and a product developer, but doesn’t use a person with autism except to give you something to look at – our words are obviously not as important), there’s an issue here.

The iPad isn’t a good tool for this.

Yes, I know I just pissed a lot of people off.  But, really, the iPad has some problems here. Big ones. Ones that can prevent communication.

I will say I recognize that there are tons of people communicating using the iPad, and it’s a wonderful, wonderful thing for those it works well for.  It’s also got a ton of advantages over other technology, like cost ($500 instead of $5,000 or $15,000), easy availability (where can’t you buy an iPad in the world?), lots of accessories, choice of different AAC software, relatively easy to write software for, nice big screen, non-stigmatizing appearance, and it’s easy to change things if it turns out the software is wrong for the user. It’s opened up AAC to tons of people that wouldn’t qualify for a funded device.

But, often, it’s chosen because it’s cheap and available, not because it’s the right solution.

And it’s often chosen because other options suck too.  Other solutions are expensive, ugly, hard to replace or repair, lock you into a specific language system, and are inflexible as the person gains more language ability. Too many have features like secret recording modes and configuration locks that prevent a user from truly having a personal voice.  So I’m not exactly in support of other devices.

But I’m definitely against the idea that a communication device should look like an iPad.

Here’s what I see missing – both from the iPad and from most of the dedicated devices (in some cases, all of the devices):

  • Durability. Seriously who doesn’t think a 7 year old will drop the thing? Heck, many adults I know would drop and break it! I’ve seen kids not allowed to take their device with them to play – because it might break. Well, duh – give a 10 inch piece of glass to an active kid, it probably will break.
  • Outdoor Usage. Fortunately the iPad wouldn’t work well outdoors anyhow, since it’s hard to see the screen. So I suppose keeping it away from play makes sense in that way. Okay, it doesn’t. People need to communicate everywhere, not just in classrooms and at home.
  • Charging. Watch someone without great motor skills try to plug in the charger to any speech device made. Why can’t there be a drop-in charger that self-aligns for a communication device? I know of none that are easy for someone without good fine motor skills to charge. And that seems important for an electronic device.
  • Feedback to the user. I talked yesterday about how the click of a traditional keyboard helps me communicate. I doubt I’m the only one.  Everyone is different, but if someone needs loud feedback to unfreeze them, the iPad isn’t it. Likewise, some people need an input method other than touching a touch screen – some of these have options on the iPad, some don’t.
  • Speaking of volume, volume. It’s nice to have a loud enough communication device to be heard in a loud room. Without having to put it on life support by taking along a lot of speakers and such. Tons of devices have this problem.
  • Pronunciation – I’ve not found a speech application in iPad that has two features I consider essential, particularly for a literate user: spell check confirmation (to avoid ugly pronunciation, it should prompt me when I hit speak to correct misspellings – not just highlight my words with squiggles, although many programs don’t even do that) and pronunciation overrides.  I should be able to say DOT is “Dee, Owe, Tee”, not pronounced like dot.  But, beyond this, I should be able to specify these by phonemes, not by just spelling out words as they sound.  Give me access to all the sounds, not just the sounds that I can write phonetically.  And while you are at it, give me a mode to speak long strings of numbers (like a phone number) or to spell out to someone a word.  I could do phonemes and many other things with Dectalk 20 years ago. Why not now (I can tell you: it’s hard to put into an API, although MS managed to do so just fine – why can’t Apple)? Hell, you could sing with Dectalk.
  • Speaking of voices…voices…  This is one thing that is good with the Android devices in particular – it’s easy to replace the system voice.  But there’s a lot of crappy nice sounding voices out there.  There’s a difference between a voice that’s easy to understand and a voice that sounds natural. Sometimes you can do both (I like AT&T Natural Voices still, but there are others). But there are plenty that sound good but suck for understandably.

These seem like reasonable things to want changed. But of course in the race to talk about how iPads are wonderful (and I do recognize they often are), we’re short-changing ourselves and people we care about if we don’t think of the ways they fall short.

We short change when we don’t think about what the person really needs, but think instead about what can be paid for easier.  Please don’t do that to yourself! Keep trying to get the right system for yourself, even if you don’t know how you’ll pay for it. Your voice is worth moving heaven and earth for. You have something worth saying.

 

Some Insights from Autcom

I won’t write about all of the insights at Autcom that impacted me, but I will say that one part in particular Melanie Yergeau‘s presentation was creepy. Don’t misunderstand – Melanie gave a great presentation that was really insightful and interesting. She illustrated one of her points about how some uninformed outsiders “hack” autism by playing this video:

Of course any video that starts, “Autism Speaks wanted people to experience how this must truly feel for parents…”  Of course I could comment on the choice of an Asian child that looks unhappy as the example of autism by a group of almost-exclusively white upper middle class people viewing it – there are definite shades of racism and cultural bias. But even ignoring that, again, our parents are what is important. And apparently the problem isn’t that the girl seems unhappy, it’s that she doesn’t make eye contact. To make the parent feel good.

I didn’t actually think anything could lower my opinion of Autism Speaks as an organization. That was insight one: they are capable of new (to me) and surprising things.

You can look forward to me someday creating an autism simulation using a creepy white kid to stare you down no matter how you try to move out his creepy gaze.

Another insight was more personal, from Suzanne Oliver’s presentation. She’s a music therapist in the US who talked about the importance of rhythm in creating, stopping, or transitioning movement – and how some rhythms could enable an autistic person to move easier, while other rhythms might serve to trap a person in a sort of loop, and yet others might make it hard to move. She presented some research, which I wasn’t able to evaluate, so I’m not going to speak about the scientific basis of her theories – as I really don’t know one way or another about them.

What I will speak about is my personal experience, as an adult with autism. During her presentation, it “clicked” why I use my tablet-based AAC device so much less than my older keyboard-based devices. Certainly, being able to type at 100 WPM or faster makes me prefer keyboards, but there is more to that, and I think it’s applicable to other autistic people too. I set my tablet to provide a short vibration when I tap a key, but not to provide auditory feedback which I believed would disturb other people (probably true).

However, after listening to Suzanne’s presentation, I had an “Ah Ha!” moment. I learned to type on a real IBM keyboard – the kind you could hear three classrooms down the hall when the strong, real, “click” was heard.  Like this video:

This was when keyboards were keyboards.

I’ve never been able to type as fast on newer keyboards, but I never really thought much about why. But I think I know – for whatever reason, the clicks provide that feedback to get the next button pressed.

Sure enough, I tried it at Autcom – I turned on key clicks on my tablet, and sure enough I found not only could I type easier, but I could also think of my next word and thought easier. I could communicate better.

Is it placebo effect? Maybe. Is it something where the keypress rhythm is stimulating my mind in a better way? Maybe. I don’t know. All I know is that I was able to say what I was thinking again, using typing, in a way that I can’t as easily with speech. And I thought I had lost that when I converted to a tablet device. That’s pretty exciting. Being able to say what you think again is exciting! And I think Suzanne is onto something real.

It was also great to see some of my online Facebook friends and people whose writings I really admire.

So, overall it was a good time. Sure, there were moments that weren’t so good, but I won’t get into those right now. Right now, I’ll focus on how to build my creepy staring child simulator and how I might be able to actually use AAC again!

Why I don’t Use Trigger Warnings

Trigger warning: discussion of triggers…

Why don’t you typically see trigger warnings here? No, it’s not because I don’t care about others.

It’s because it’s overused.

The idea of a trigger warning, as far as I can tell, goes back to people who have very specific things that can trigger severe PTSD, possibly violence, flashbacks, and other ReallyBadThings. Those things are called triggers. For instance, a spouse of a war veteran might need to be careful about sneaking up behind their spouse, if their spouse could be triggered into a PTSD episode – and possibly, before realizing what is going on, attempt to defend themselves physically. That’s something both the person with PTSD and those around them will want to know about, and also take into consideration.

This got extended to other forms of abuse. For instance, a rape victim might not be able to actually think clearly for a bit after he is exposed to some graphic video that reminds him of his rape, even if he doesn’t have PTSD. He probably doesn’t like reading about something that is exactly like his rape. He’d probably appreciate a bit of warning that that video he’s about to watch contains graphic rape content.

There is of course many variations that make sense. It’s wise to warn your readers about exceptionally violent or harmful content. Absolutely. But it doesn’t need to be done with a trigger warning per se – it can be done any number of other ways (such as explaining in more neutral terms what is about to be shown before it is shown).

Unfortunately, the term trigger gets a bit overused. Rather than just used to represent something really significant and important to be warned about, often today they get overused. For instance, if someone links to an article where a Republican congressman is interviewed about cuts to social programs, there might be a trigger warning for classism. But is that really necessary? Perhaps just saying, “Listen to Senator … explain why the poor don’t need to eat” and then linking to the article would make it clear. A view that is unpopular with a community (even very strongly unpopular and considered evil) is not the same as a trigger.

I try to warn people when I include particularly graphic discussion in my writing, or if I link to something that I think is particularly graphic. But at the same time, if I write an article about abuse I suffered, it’s usually clear within the first paragraph that I’m going to write about abuse, and it’s usually not particularly graphic at that point. As an example, in my blog entry on Why Don’t Kids Report Bullying, I started the article by saying:

HRC posted a piece on why kids don’t report bullying to school employees.  The article’s a good read, based on fact, but it brought back why I didn’t report bullying.

It was simple: reporting the bullying didn’t help.

I was kicked, hit, sexually assaulted, burned, choked, manipulated, humiliated, insulted, excluded, scapegoated, and teased for 13 years of public school.  13 years.

Okay, this could be hard for someone to read. It would be hard for a survivor of abuse to read. It could be hard for a school administrator (who isn’t bullying) to read. It could be hard for a parent to read. Just because it’s sad and hard to read doesn’t mean it doesn’t need to be read by those groups.

I also think – as an abuse survivor – the the message of my posts, even when they include some horrible things is overall positive: I’ve been through hell and escaped it.

Now, if I was to suddenly spring into a vivid physical description of being sexually abused, in a context where it would be completely and totally unexpected, I probably would find a way to give some warning. But, in general, discussions of hard topics IMHO don’t need warnings. If it’s not a hard topic, and it’s not kittens and puppies, it’s probably not worth talking about in the first place. But, heck, I’ve never been one for sports (that said, our recent history with teams in, say, Mississippi universities clearly make it clear that even that isn’t always going to be a comfortable feel-good topic).

So, if my blog was about puppies and kittens, and the feel-good aspects of them, I would probably warn people before I put up a post where I describe step-by-step the acts my assailants did to me. I wouldn’t just stick a kitten picture up and then launch into the description. But I don’t think most people would do that (there are some very nasty people out there that might, but I hope I’m not one of them). I try to give an introduction to what I’m talking about in the very beginning of my topic, although, yes, good writing (or even “okay” writing, as I strive for!) doesn’t lay all the cards out on the table immediately. But generally there’s enough to know if you’re going to be triggered.

Heck, some lists of trigger warnings would include pretty much every post I write.  See this list for example (the linked site’s current home page has a flashing animated graphic in the first post – that’s something that people should be aware of ahead of time! That’s why I didn’t link to the homepage of the blog, and why I mention it here). Note I’m not saying it’s bad to think about these things when you write, and to try to not startle your reader – or far, far worse, actually trigger them without some warning.

I’m not sure that a reader of my blog could differentiate the stuff that was explicit or violent from the stuff talking in general terms if I labeled every post that fit that list. Now, I’m not saying I’m right on this – I’m not sure if I am or not to be honest, just that this is the view I currently hold based on research and my views of the world. My views of course aren’t always right, so I welcome other views to tell me I’m wrong.

Now, if you are triggered by my writing and find this style of writing to not provide the warning you need, I would like to have a dialog with you to figure out what I could do. I may even change my views, as I know that I don’t know everything there is to know about abuse or PTSD. But what I don’t want it is to be a label applied to anything that people might disagree with or be uncomfortable reading. Nor do I think it’s helpful to overly protect people from seeing things that make them uncomfortable (that said, it’s definitely not a bad thing to let people know that the extremely vivid descriptions are coming, but it doesn’t need to be a formal trigger warning).

Finally, I’m not saying that if someone uses trigger warnings, then they are a horrible writer or wasting their breath. I don’t find them particularly horrible to use either, just not particularly useful or necessary in some cases. But I do see the usefulness they have in some cases. They should be saved for those types of things that go beyond mere discomfort. They should be saved for things that aren’t already obvious by a title or (depending on context) introduction. In that context, they are fine. In other contexts, I’m not so sure they do much beyond dilute the word trigger to mean not “really, really serious bad thing could happen if this warning isn’t there” but instead “there’s something here I might not like.” That’s not cool or fair to people who have various triggers.