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!

Learn Karate and Social Skills to Become Either a Victim or “Above The Game”

When I was a kid, I took martial arts lessons (not actually Karate, but something similar). I think my parents thought it was a good idea for two reasons – they wanted me to participate in something with other kids and they wanted me to learn to defend myself.

It didn’t work. Now, granted, I only did this for a year, so I suspect I lacked much insight or experience, and certainly learning from one instructor in one dojo doesn’t imply anything about any other instructor or dojo. But I do think I can talk a bit about why it didn’t work for me, at least with my limited experience.

First, the easy one: I didn’t bond with the other kids. Kids in the dojo, just as kids at the playground, recognized I was different. I didn’t fit. And I never would with them. Putting on a special outfit doesn’t change that. It ignored the problem by simply changing the setting – I don’t get along with kids in school, so maybe somewhere else I’ll get along with them. But it never addressed the root of the problem, just the setting where it occurred. But that’s not what I’m trying to write about today.

For the self-defense aspect, that didn’t work either. Sure, I learned a few blocks, kicks, and punches. I learned to stand one foot in front of the other. So I learned a bit of the basics. But even if I learned the advanced stances, blocks, kicks, and punches, and could perform them well, that wouldn’t have helped. I was missing something: the application. Memorizing muscle moves (even making them part of muscle memory) isn’t the same thing as being able to quickly analyze a situation and determine how to respond. I was smart enough to know that, even when being attacked by other kids physically, most of my moves would end up getting me beat to a pulp even quicker. Running was a better tactic – and I already knew that before class!

Now, I’m sure that plenty of people have used martial arts in self-defense, and that’s good. And maybe I should seek out a better instructor and dojo and learn now. So I realize the limitations of what I’m saying. But the key is that I wasn’t taught how to dynamically respond to a real-life situation, just how to statically respond to a scripted situation. There’s a huge difference between what the “attacker” might have done in the dojo and what he might have done behind the wall at school.

Did you see that? I told you the problem with social skills training, too – learning to respond to a scripted situation isn’t helpful.

Too much of today’s social skills is focused on the same stuff. Seriously. To be honest, I think the training methods may be why autistic guys too often think there is a magic set of steps to essentially get to have sex with a girl. They’ve spent too much time learning formulas, techniques, and scripts. We saw on Kickstarter this week when a “seduction guide” entitled Above the Game that sought funding. Among many problematic parts, the guide told the message that guys don’t have to listen to the girl, they can basically force themselves on her. Fortunately, Kickstart has since removed the guide and attempted to make amends. Kickstarter eventually recognized that the guide is standard “if you want sex, be an asshole” garbage.

The book is appealing to a certain subset of sex-craving men (now I’m not saying this group is generally autistic people or anything similar – although autistics, neurotypicals, and plenty of other groups all have these men in their midst). After all, it says that all the standard dating advice (you know, stuff like “don’t force her to engage in sexual contact without consent”) is wrong. That’s important – it’s appealing to a group of guys that haven’t had the success they want, and they may have even tried (or thought they tried) the “standard” formula. So this is a new-and-improved formula, one that “actually works” (Uh, until you do find a woman that can defend herself – you might end up rightfully having a coffee mug shatter against your own mug; But, sure, rape will get you sex if you’re able to overpower her).

The underlying premise of this seduction guide and all other seduction guides (besides for teaching people to be assholes) is promotion of the idea that there is a formula that you can follow to make – overpower if you will – people do what you want them to do. Give them the right input, you get the output you crave. Maybe it’s sex, maybe it’s something else.

That’s also the premise for much social skills work. You want someone to listen to your special interests? Pretend to be interested in them for a bit. Then you get what you want. Simple. You have control.

One fairly popular – but fairly ineffective – way to teach social skills is “social stories.” It’s ineffective for the same reason my Karate lessons were ineffective: a bunch of techniques or responses to scripted situations doesn’t teach the improvisation necessary in dynamic social situations (you know, like the…uh…”real world”). While it doesn’t have the formality of formal social stories, a variation on this is talking through a make-believe situation and doing role-playing to figure out how to respond. The problem is that this teaches someone a make-believe situation, not the real-life. In real-life, the other person (or group) is going to veer “off-course” pretty much immediately, leaving you lost if you’re expecting scripts to get you through things.

I’ve also seen this with AAC (augmentative and assistive communication). One of the first things people learn when they use (or see someone use AAC) is that it’s slow – painfully slow sometime. The obvious, but wrong, solution is to create a system that stores sentences or thoughts as a whole unit. There’s just one problem – it turns out that even things you think you say all day long are actually unique to the situation most of the time. Sure, sometimes some stored phrases in an electronic device have use, but if you expect more than 1% of your communication to be accomplished that way, you’ll be in for a big surprise when you try.

Karate, seduction guides, social stories, and stored-sentences all have this in common: they work great in a make-believe, scripted situation. And they’ll cause you pain and hurt if you don’t also know how to handle course changes and improvisation.

Another problem with Karate, seduction guides, social stories, and stored-sentences is that they may just plain be the wrong thing, even in a situation that is very similar to the scripted situation. For instance, an example PDF of social stories includes:

Stethoscope –
The doctor will listen to my chest with a stethoscope.
This helps him/her hear if I am breathing properly and my heart is working well.

The doctor will lift up my shirt, put the stethoscope against my chest and ask me to
breathe in and out.
The stethoscope will feel cold and may tickle but it will not hurt.
I can do this for the doctor and he/she can tell I am ok.
The doctor will be happy and mum will be happy.

Really? It won’t hurt? How does the writer of this story know? They might know it doesn’t hurt themself, but they have no idea about someone else, particularly if that someone else has sensory differences! Certainly it would be better to talk about how the stethoscope may be uncomfortable or cold, but won’t cause lasting hurt them even if it feels like it will. Maybe it’s better to explain “it will be over quickly.” I’m also not a fan of the outcome where the kid is okay – maybe he is, maybe he isn’t – maybe the doctor actually finds something going on. Maybe he/she can tell me if my heart and lungs sound ok. And, no, mom and Doctor better not be happy if he does find something, but they should be happy they found it and can provide medical help.

Is there value in the above? Certainly – you can explain what things someone might expect before a situation. But, once you start making assumptions about how they will experience sensations, or once you start (like most social stories) expecting things to follow a script, there are problems.

There’s tons of other criticisms from autistic adults on many social skills training programs – I won’t go into things like how they may be making an unreasonable demand on an autistic person (“don’t stim” or “look at the person talking” come to mind) that may be counter productive.

What’s a better approach? I’m not entirely sure. But I know we (autistic people) need accurate information. We need accurate information about how to appropriately satisfy our sex drives (hint: it’s not through raping women), deal with the doctor’s office, or defend ourselves from bullies. But, in addition to being accurate, the information needs to teach flexibility and thinking, not just a bunch of memorized sentences, techniques, or scripts. There’s no magic method here – it’s hard stuff for anyone to learn (and even harder to teach). People aren’t tools I use to get what I want. I treat them decent not only because that might help me get something I want, but, more importantly, because it’s simply the right thing to do.

What is Wrong with the “Is FC Real?” Debate

It’s asking the wrong questions. It’s that simple.

The question that it’s asking, typically, is, “Are all instances of FC (Facilitated Communication) true communication, or are they all bogus?” Typically, at this point, some FC detractor will pull out some study about how it demonstrated there was no communication from the FC user, but rather from the facilitator.

But let’s back up. What is FC? FC is a form of AAC (Augmentative and Assistive Communication) that uses the touch of another person or the support of a wrist by another person while the communicator (who typically does not talk) types or writes something. The controversy arises because someone holding the wrist of another person can obviously move that wrist, possibly typing their message yet claiming that it is the words of the person who doesn’t talk.

There’s several things I’ve seen people try to say about FC.

First, many people say, “FC shouldn’t be used. There are lots of computer programs and ways to communicate other than FC. One of them should be used.” I agree, when this is possible. FC immediately draws a user into a controversy, and his words are immediately suspect in the eyes of many. For that reason alone, it’s good to have a way that is less controversial to communicate. But the next question is whether or not such a way exists for the communicator. There’s a bit of an assumption that anyone can type/point/whatever without physical assistance when it’s assumed other means might exist. Not everyone is the same, and even though someone’s differences might be incomprehensible to you, it doesn’t mean those differences aren’t real. But, yes, when possible, other means should be used. I believe the FC community agrees with this and there is no controversy here.

Next, some people say, “FC is bogus because person X or study Y showed it to be.” Of course one person or one study just says things about one person or one study’s population, not necessarily everyone. Yes, some studies claim FC is false on the basis of studying some people who participated. There are critiques on some of these studies, but even if they do show what they claim to, it’s still possible that someone, somewhere is truly communicating with FC. I find it amazing that it’s okay to dismiss the potential for communication in someone else – and take away their voice – on the basis that someone else (or a lot of someone elses) was not truly communicating their own words.

The third thing is that there is an assumption about the intelligence and ability of people who have certain patterns of disability. Some people simply find it hard to believe someone who doesn’t talk, who needs full-time assistance, who doesn’t type independently, etc, could possibly have intelligence or things to say. It is surprising, which is why I think FC has received so much attention over the years, from both supporters and detractors.

Now, I know some FC is real. I can say this with certainty, because I believe it should take extraordinary evidence to question someone’s own self-reports. And there have been self-reports by former (and current) FC users that make it clear it is real communication. I’m not talking self-reports using FC to validate FC, but rather self-reports from people who now or also communicate through other means. If someone tells me, using speech, that their FC is real communication, I’m going to believe it unless I have extraordinary evidence to the contrary. Some names to look up (just two now, but there are more): Lucy Blackman, who now types independently and talks about how when she used FC, it really was communication; Sharisa Kochmeister also now types independently and supports FC.

I also think the “Is FC real?” debate, in addition to ignoring the voices of those who clearly know if it can be true communication and today communicate without any controversy, also ignores the real problem with communication and autistic people: influence. How many autistic people can truly communicate independently? Do you say the same thing with your mom in your room that you might say to a close friend (with mom nowhere nearby)? Now, imagine that you are always, in public, with a certain person. And imagine that this person is an abuser. What’s the chance you’re going to report abuse? Pretty much zero – you’re not going to do that in the presence of the abuser. That’s influence. Let’s go further and say that the only reason you don’t live in an institution is because one particular person is your support person. Are you going to say anything bad about that person, even when they aren’t around?

In addition to well-publicized apparently false allegation of abuse communicated with FC, there have also been real allegations – substantiated by FC and other evidence. It’s scary to me that abuse allegations by an FC user are now automatically dismissed (and also that unsubstantiated equates to false allegations in many people’s minds – that’s terrifying as well).

Influence, whether it’s someone moving your wrist or someone preventing you from speaking about abuse is influence. It can be done even without the person in the same physical space. Yet, this type of influence – which is exceptionally common for autistic people (too many of us do not have support systems that include enough people to continue to have support if one person left) – is pretty much completely ignored if the person types or talks “independently.” Yet we’re talking about things like reporting abuse. People need to be able to independently communicate. But the debate on FC has made us believe that “independent” communication can exist for someone who cannot truly communicate freely, due to dependence on or presence of another person.

It also goes the other way. I find I can express myself much more clearly and strongly with certain people around. So it’s not just a matter of getting us alone. It’s actually complicated.

We need to think a bit more broadly in this debate. It’s not black-and-white, no matter how nice it would be if it was. Sometimes, I might not know if someone is communicating independently using FC. That’s okay – particularly when the absence of that communication would have me listening to the person facilitating to represent the communicator anyhow! But I feel it can be an even worse error to immediately discount someone’s ability to communicate, when any possibility exists that they really are communicating. I also think we need to think long and hard about influence – and not just physical manipulation, but the emotional and social influence of, in particular, caregivers on autistic people. And we need to remember not everyone shares our abilities or situation.

I still hope for the day when every autistic person has ways to communicate with minimal influence (nobody in society communicates with no influence). That’s what we need to focus on.