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Autism Consulting Service
There is this thing that happens sometimes.
Parent has an autistic child. Autistic child doesn’t speak, or their speech isn’t an accurate window into what they are thinking. Autistic child is presumed to be very significantly intellectually disabled.
Years later, a method of communication is found that works for the child, and it turns out that they are in fact very smart. Very smart! The parents are overjoyed. They begin talking about presuming competence, the least dangerous assumption, that not being able to speak is not the same as not having anything to say.
They are so, so excited.
And they start talking about all the incorrect assumptions they had. If we’d known, they say, we wouldn’t have done X. If we had known they could read, think, hear us.
And it’s a big problem, because the way they talk…..they think the problem was that they treated their child like they were intellectually disabled, and they weren’t. But that’s not the problem. The problem is that they thought their child was intellectually disabled, and so they didn’t treat them like a person.
These revelations, about presuming competence, human dignity, and the least dangerous assumption—they don’t apply only to kids who are secret geniuses. They apply to everyone. They are the most important for the kids who really do have intellectual disabilities, who really can’t read or use full sentences and who really do need extensive support. The people who came up with these terms came up with them for a population where there is very little doubt that significant disability is a factor. These terms don’t mean assume they aren’t actually disabled. These terms mean assume they are a person, and remember what you don’t know.
When the neurodiversity movement first got its legs, oh so many years ago, we got a LOT of pushback from people who thought we were denying disability. And we had to be clear that we meant everyone. And I worry, more and more, that certain very academic circles have left that behind, in practice as much as in theory. It makes liars out of the rest of us, and it makes a lot of work very, very difficult.
If I told the parents in question that I am thinking about this, they wouldn’t understand.
They’re not saying intellectual disability doesn’t exist, they would say. But the truth is, they’re either saying that, or they’re saying thank god, it wasn’t my kid.
And it’s a slap in the face, every time.
(Note: read more by Julia on her blog Just Stimming https://juststimming.wordpress.com )
Quotes on Presuming Competence:
"All my life I was enrolled in classes for the profoundly retarded. The pain of the isolation, I can't describe. Some classes consisted of putting flashlights together and then they would be taken apart for the next days project. I never spoke or made eye contact. I hummed and self stimmed. No wonder they thought I was hopeless. I was always well treated but my intellectual needs were never addressed because nobody knew I had any intellect at all. Sad to say, many like me remain in the same hellish situation."
"In the midst of the chaos and confusion, the learning was going on. However, it was dormant until it was needed. I felt like I was two people. The normal person, trapped withint the autistic person. When the autistic veneer began to crumble, the information was there, ready to be used."
"While I remained in the various programs, I became educated by noticing everything around me, and by observing from a safe distance, the interaction between people. I taught myself to read at about three years of age, and from that time on, read everything that I saw in print from the great poets of the world, to drama, to dull subjects like physics. As a result of this ability to read, I was determined to educate myself to the maximum level and become a contributing member to a society that gave me little in the way of encouragement to attain goals that were higher educationally than those of the rest of the group who were considered both illiterate and my peers."
Wally Wojtowicz, Jr.
"When a teacher is well prepared and assumes all students are capable, I sit quietly and behave. When the teacher is disorganized and assumes we are stupid, I can't control my outbursts. Awful feelings come over me and I have to leave the classroom."
"I wanted to live up to the potential of my brain, but I was confined to this body that seemed to have its circuits crossed or shorted out. I attended special education classes that were conducted on a preschool level. That mean I had to do boring tasks such as stringing large wooden beads or placing pegs in a pegboard. Or I had to listen to a word spoken by the teacher and then point to a picture of the object.
To fight boredom, I resorted to my dream talk conversations. Sometimes I just sat by myself and rocked back and forth. Or I stared at my fingers. I found it helped me to turn off my busy mind so I would not have to think about how bored I was. At other times I would spit on my finger and hold it up to the window, because by doing that, I could see all sorts of pretty colours as the sunlight shone through the spit. I'm sure everyone thought I was behaving like a mindless idiot, but to me, it was a form of amusement.
But I did learn to read. Mommy had a cassette tape of the alphabet, which she used to play for me, over and over. I learned my letters. Then when I was watching TV with the family, I would connect those letters with the little ones I saw in the commercials. Little, by little, I began to read words, then sentences. I even leaned over the back of Daddy's chair and read from his book or newspaper. Eventually I became a very fast reader, able to recall a whole page after just a glance."