as small as a world and as large as alone, If you have even a chance of being nonverbal in...

4:38am October 12, 2014

If you have even a chance of being nonverbal in public, you should have one of these at all times. They are as low tech as a letter board can get: one side the alphabet and some useful phrases like “start over”, “repeat”, “yes”, “no”, and “stop”. The backs come in several versions but the ones I haven’t lost yet, have a blank back that you can use to put communication stickers on, with a word and a symbol. Seriously these are important, especially if your main communication device craps out.

These are made of sturdy plastic but you can make them at home with any materials and laminate it if you can handle the glare. You can even track your most frequently used words and phrases and build a communication board out of those. And you can build as many as you want, saying as many things as you want. You don’t need picture symbols either, you can make it out of pure text if that’s your thing. For me, even if I’m not getting meaning out of the pictures, they somehow break up all the words and make it easier for me to communicate. I’d be curious to know why that works in someone with such severe visual processing issues.

One of my friends uses a Ouija board as their low tech aug comm device, as a private joke against those who think FC isn’t real. Not many people get the joke, I imagine. :-(. But it’s great you’d think it’d been tailor made for the purpose. For those who care about such things, the woman who gave it to them made sure to get one that hadn’t been used before. If you even slightly believe that energies or spirits are involved, I’d
advise caution. (I think it’s mostly the ideomotor effect, but there’s no saying some kind of invisible nasty couldn’t take advantage of that. Superstitious? Maybe. Playing it safe? Yep.

And no, I don’t think most FC users can be compared to Ouija boards, or Clever Hans (who was more clever than they gave him credit for), or other insulting and dehumanizing comparisons. I still remember the autistic woman who broke her ankle trying to run away from an asshole who disrupted AutCom by demanding autistic people perform like trick ponies. Such a demand was devastating to her and she reacted like anyone would when bring asked to make a performance to prove she’s real.

Simply the fact that she bolted away from this guy should show him she understood his purpose perfectly well. FC users are especially sensitive to bring made to perform because the stakes are their communication itself, it can be taken away as easily as it was given, and returning to silence after years of communicating has driven people to suicide before. But their suicides are only recorded as them wandering into traffic or not understanding what happens when you jump off a bridge. So the true suicide rate among nonverbal autistics is unknown, but when it happens the day your communication system, it’s painfully obvious. Not all those who “wander” are lost, and not all of them “just happen to wander” into traffic or train tracks or bridges or bodies of water.

Now imagine that you’ve gone decades knowing that you could communicate but not being able to get the words out. Then imagine someone shows you a way to get the words out. At then imagine that just as you’re getting used to this new life, someone takes it all away from you, saying its a hoax or that you are a trick horse or that your hands are the planchette on a Ouija board. That could drive lots of otherwise emotionally stable people to euicide, and people who have been without communication for years are often not emotionally stable.

Now imagine that you can keep your communication device and your method of accessing it, but you’re living with the constant threat of it being taken away. A die hard behaviorist signs up for your conference and starts demanding Turing tests of all the FC users. You going to run the other direction and break a bone falling off the stage, hoping he won’t notice you? Right again, and this man had no remorse because he thought he was saving the poor little oppressed autistic people from people exploiting us. The fact that we stuck by the facilitators for the most part, and tensed up, lost verbal skills, or ran away from the behaviorist, says everything.

There are huge problems in FC, and even FC users will admit this when they aren’t feeling pressured to perform perfectly. I’ve gone over a lot of it in my #FC tag:

http://withasmoothroundstone.tumblr.com/tagged/fc

But this is not how you approach it. You don’t do it by antagonizing FC users. Ever want to know why many FC users are full of praise for their facilitators to a degree that feels wrong – overblown, disproportionate, even dishonest? It’s one part sincere gratitude, and s thousand parts fear that if they annoy the wrong person they won’t be able to communicate in words anymore. Think about that. Think about your communication being based on someone’s whim. Even FC users with the best care spend most of their day unable to communicate because nobody is around or willing to facilitate. This means ingratiating people becomes a survival skill. Then facilitators mistake that ingratiating attitude for a wonderfully spiritual one, or as showing forgiveness above and beyond the call of duty. Sometimes maybe. But when I see it, I can see the fear coming off the person like waves. Terror of being lost to silence again for the rest of their lives. One of the worst things you can do to a person is give them something they desperately needed, and then take it away, even threaten to take it away. That’s how to create the most total despair known to humanity.

Anyway I didn’t mean to get sidetracked into FC, it just happened, but I’m putting it on my tag because it’s important stuff that very few people are willing to talk about.

By the way, I have been given Turing tests in public by strangers. I always fail, despite being normally a proficient ten finger typist whose speed tends to range from 100-160 words a minute, the higher figures being faster than I can translate ideas to language. I fail because I’m too angry to type (emotions affect cognitive, sensory, and motor skills in autistic people). I fail because being in the presence of someone who believes I can’t communicate, frequently renders me unable to communicate in words – this happened with speech when I had it, too, even more so than typing, but nobody ever mentions that. I fail because I feel stubborn and insulted. I fail because I’m so afraid of the stakes not for me but for the next nonverbal person they meet, possibly an FC user.

And if I fail Turing tests based on up much less, imagine the stress a person must be under whose entire future is at stake. Try to communicate under that much stress, I dare you. I was so impressed with Anne McDonald who, having to prove her competence to the court so she could leave an institution, and to prove her FC was real. They showed her three words with no facilitator in the room, then had the facilitator come in and help her type them. She got two out of three right, and the last one was only off by a couple letters – seemingly on purpose as a fuck you to the system, because that’s the kind of woman she was, full of hatred for a system that chewed her up and left her to die, then offered her freedom but only if she jumped through more degrading hoops.

People who’ve never been degraded in this manner may wonder what the big deal is about typing a few words. Aside from all I’ve said about stress and motor skills, among people with any severe motor condition including autism and cerebral palsy. There’s the fact that you’re being constantly made to prove your existence in a way nobody else has to prove theirs. Even Helen Keller went through this when she accidentally wrote a story from memory instead of from her own head – people began to doubt that any of her communication was real. Having people doubt such a fundamental part of you leaves scars on your soul. You don’t trust them, you don’t want to trust them, you can’t afford to trust them. And so you do things like deliberately misspell words in high stakes situations… Just to prove to yourself that you’re still alive and in control.

Also a friendly reminder:

AAC, aug comm, augmentative communication, alternative communication. These are all words for things that let you communicate without speech.

Assisted typing is any form of typing where a person needs assistance to access the letters or pictures on the AAC device.

Facilitated communication or FC is a controversial form of assisted typing. I believe it’s sometimes real and sometimes not, I’ve seen both in action, and getting it wrong either way can be devastating. But FC is not another word for AAC, it’s a word for a specific training technique starting out with support at the hand, then fading back up the arm to the shoulder to the back until eventually you aren’t touching at all. Some FC users have gone on to type independently, speak independently, or speak the words they typed. I’ve known several personally and that’s why I know it can be real.

Rapid prompting method or RPM is a separate kind of training people with severe communication impairments to type or hand write. (They favor handwriting because it is much easier to prove it comes from the disabled person.). It has it’s own problems which I might discuss later.

But basically: FC and RPM are not just another word for AAC, they are specific forms of assisted typing and writing used in specific ways. They both have the goal of independence, but not everyone reaches that goal. Assisted typing is an umbrella term for all typing that requires physical or emotional support to accomplish. (Many people with autism have severe. Exposure Anxiety and FC helps them in ways that go beyond just motor support.)