Below are a few pieces (not very organized) of my informal and personal writing about autism and self-injury. I wrote these pieces for various reasons and various people, and they go back a ways. The last piece, which I wrote a long time ago on the TMoB board, was also included as part of my Statement of Particulars in my Canadian Human Rights Tribunal case.
The science in this area is extremely poor (as was testified at the Tribunal). When I wrote the below, Keen (2005) and Keen et al. (2005) had not yet been published. Both these papers support my informal observations in the area of autistic communication, as does the success of interventions designed to train parents to respond to their autistic children's communication (e.g., Aldred et al., 2004). Gernsbacher (2006) is an excellent review of this area. I also strongly recommend this, re the origins of so-called "challenging" behaviours from an autistic viewpoint.
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Self-injury doesn't happen out of the blue, though it's often reported this way, and doesn't result from "autism". I've written a bit about self-injury (my self-injury has been an issue in many legal cases). It might help to remember that privacy is an issue (meaning, it bugs me to write about self-injury, even though it's probably important that autistics write about this), and also that a lot of autistics don't have or can't reliably achieve privacy, and this has consequences. Two things essential to a lot of autistics: privacy (being able to hide) and freedom(being able to leave), and we're extremely likely to be deprived of both.
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I disagree strongly with the kinds of functional analyses of behaviour I see all the time in ABA programs, where the behaviour analyst makes all kinds of assumptions about the autistic, based on their ignorance of how autistics perceive the world and learn from it, and their total dismissal of our communication. This results in "last straw" behaviours. Your child communicates accurately to you a basic need, over and over, maybe ten or twelve (almost always this number) times. This is ignored, both because his kind of communication is considered "wrong", and because what he needs, which is different from what you need, is also "wrong". Then, having been honest and conscientious in his communication, and having been crushed by repeated failure, the kid bangs his head or hits someone or breaks something.
This is then the ONE behaviour that is noticed and analyzed. Then the child is taught how to communicate (he communicated perfectly in the first place, so really he is taught his own communication is wrong), and what he is allowed to communicate--not his real need (and this is almost always "need to know something", "need this small piece of information", or "need many, many pieces of information" when it is not "I am in pain and must deal with this") but the need everyone else has decided he was expressing when his behaviour became unacceptable. This happens to autistics who can talk, and talk very well, and are even called articulate, so speech (and speech is different from language or communication) is not the issue.
One of the hardest things that happens to some autistics is that after a great struggle to produce speech, we find it doesn't work either, it just continues to be exhausting. This is because our needs are different from non-autistic needs and our needs are called "wrong". And I mean what we need in order to learn, to achieve, to interact, to develop--our needs in all these areas are different.
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I was asked in a documentary why I hurt myself. This was some years ago; I was just at the point where I was starting to realize I was not totally appalling because I was autistic. I was in an "environment" where no other conclusion was available.
Anyway, what I said when I was asked was that it (hurting myself) was my vocabulary. I have to add at this point that the fact that I hurt myself is obvious, even though I hurt myself in private. I have scars.
Then I said that I'd worked hard all my life to learn language. This was very, very difficult and took pretty much all my resources. But I learned, and I learned two languages. Then I found out this language thing didn't work; I was not good enough at it; I somehow did it wrong. My very accurate words weren't heard. I was and am frequently told I've said things I've never said, and haven't said things I have.
I hurt myself to re-establish some form of accuracy. I establish something I've absolutely done. This is a way of regaining accuracy. So while it may seem that I'm frustrated, that isn't the case. Confusion, yes to some degree. But there is an essential need to re-establish, after repeated failed communication, the existence of accuracy, or at least the possibility of accuracy, in order to continue to function at all.
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References:
Aldred, C., Green, J., & Adams, C. (2004). A new social communication intervention for children with autism: pilot randomised controlled treatment study suggesting effectiveness. Journal of Child Psychology and Psychiatry, 45, 1420-1430.
Gernsbacher, M.A. (2006). Towards a behavior of reciprocity. Journal of Developmental Processes, 1, 138-152.
Keen, D. (2005). The use of non-verbal repair strategies by children with autism. Research in Developmental Disabilities, 26, 243-254.
Keen, D., Sigafoos, J. & Woodyatt, G. (2005). Teacher responses to the communicative attempts of children with autism. Journal of Developmental and Physical Disabilities, 17, 19-33.