Photo by Tong Nguyen van
What this is about and why it’s important
“Behaviour is communication.”
This is a popular saying in the autism industry, and it’s used by both sides of the behaviourist debate: those who want to stop autistic people from behaving autistically, and those who accept alternative ways of being and communicating.
But the notion that all behaviour is communication is problematic. Some people’s autistic meltdowns look much the same whether they’re in public or private. And think about the non-autistic manager sitting pensively in his office, clicking his ball-point pen, clickety-click… who’s he communicating with? Himself? God?
OK, so we could perhaps argue that not all behaviour is intentional communication. Like, the wildebeest may not be trying to tell anyone that a lion bit her and she needs help, but since you can guage from her limp that she’s probably injured, the limping still counts as “communication”.
Assuming she actually is injured.
There is something super-problematic about ABA therapists (who don’t understand either autism or autistic apraxia), saying, “Behaviour is communication,” and then trying to change that behaviour based on what they assume the behaviour means. Not only do they often miss or misinterpret the behaviour, but there may be many times that behaviour is not communication. At all. Even if there is laughter. Or screaming. Even if the behaviour contains words.
Here’s something for you to check out if you thought behaviour is mostly communication.
See? When your body does not obey your mind, behaviour is not communication. (And if that blew your mind… then check out every link in this thread.)
You may be going, “But wait… how do I know which behaviour is communication, and which behaviour is not? Must we a completely disregard body language now?”
You may also start realising why the communication rights of non-speaking autists should be a key focus area for more of us in autistic advocacy.
Some implications for advocacy
You can’t effectively advocate for the communication rights of non-speakers unless you also realise that many people — even some autistic people — are actively trying to block non-speakers from accessing the means of communication that works best for them.
Many non-speakers who finally have access to nuanced communication, speak out against ABA; and key roleplayers in the multibillion dollar ABA industry are trying to silence these non-speaking autistics. Yep. there are a number of autistic people who have achieved independent communication through typing, having first used letterboards in methods involving prompts. Guess who are at the forefront of trying to shut down methods which provide a bridge to independent typing: ABA people.
I realise that if you’re new to this field, it sounds highly unlikely: professionals claiming to work for the betterment for profoundly disabled people actually trying to shut down the communication of profoundly disabled people? But think why some people in power might want to do exactly that. Why would people want this guy (below) to not communicate these words, in which he says his behaviour does not reflect his intent? (It took him years to get to this level of motor proficiency, by the way.)
That’s exactly what the ABA industry tries to do: They try to silence people like Damon. They don’t merely not help. They actively try to prevent guys like Damon and Jordyn (featured earlier in the thread) from getting the kind of help they need to communicate.
For many autistic people, the most disabling feature of their autism is a movement disorder.
The US government pays for ABA. Professional reputations have been built on its alleged effectiveness. Autism Speaks talks of how the streamlining of ABA is a win-win for investors. Thousands of people have bought into this industry. They’re even trying to legislate it into Africa now.
Parents are emotionally invested. Imagine putting your kid through years and years of ABA, believing it to be a good thing, only to be told that you were wasting the kid’s life and effectively abusing them — all while you actually cared deeply about your child? Nobody likes to hear that they’re an abuser, especially when they see the therapy “working” and the child’s behaviour becoming more compliant, including hugs and smiles. Nobody likes to hear that they’re destroying a child’s coping mechanisms when what they’re doing has been expertly designed to “help the child cope better in the world”. Few people like to listen to a bunch of emotionally damaged, sweary, clearly-not-mainstream misfits (also known as “those high-functioning neurodiversity people on Twitter”) telling them that their kid is like them and should be respected as such. (“Ew, no. My child is not like you awful people. I won’t let my kid turn into your ilk. Autism doesn’t define who he is, I refuse to call him autistic.” Et cetera, da capo.)
Pulling parents out of their years of ABA investment is sometimes difficult.
Non-speakers ask us to accept that for some, speech will never be a reliable means of communication. Autistics of all flavours ask the world to accept their repetitive movements. But ableism teaches parents that non-speaking communication and flapping and rocking makes a person less worthy. Ableism promises those parents that if they persist with ABA, their child will become more worthy.
Ableism blocks meaningful communication.
A summary of the basics
For apraxic non-speaking autists, pointing to either YES or NO on cards can be unreliable, because their bodies may do the opposite of what their minds intend. Once they acquire the control to point to each letter separately (e.g. Y-E-S), you have a more reliable reply.
When you have a problem with purposeful movement, your feet may rush to destroy your brother’s sandcastle for no reason at all.
When you have a problem with purposeful movement, your mouth may shout, “I love Britney Spears!” repeatedly, hundreds of times per day; and while your loving family respond by buying you all Britney’s music… you actually hate Britney Spears.
When you have a problem with purposeful movement, your hand may touch the picture of the house when you know the answer is “tree”.
When you have a problem with purposeful movement, behaviour is not always communication.
What can you do?
When non-speaking people tell you in typed sentences and paragraphs what this is like, then it’s purposeful movement that has taken a long, long time to develop, and you should respect that effort and read it. Believe them when they say how difficult this is, and how necessary it is to get the right help to really communicate. Fight for the right of non-speakers and other apraxics whose mouth words are blunt and mudded, to tell the world, using letters, what’s really going on.
Share the words of non-speaking autistic people. If you do this, other people will do this too.
Because my friends and I are doing this, children are being saved from ABA.
Because we’re doing this, therapists, parents, teachers and other communication partners are getting training to support autistic children and adults who struggle with purposeful movement.
Because of this, 10-year-olds, 30-year-olds and 50-year-olds are getting access to proper, full communication for the first time in their lives.
Share the words of non-speaking autistic people.
Not sure where to start? Try here.