I have only met a rare few neuro-researchers and other autism specialists, representing the scientific study of autism, who consult with me for my insights. I have noticed that though more and more of us nonverbal autistic people can type now I have not seen an increase in scientists trying to meet us. My book was sent to many neuro-scientists when it was first published, but few answered, and none met me. The puzzling thing for me is why this is.
If I were a scientist researching autism, or a specialist treating autistic kids, or running a program for autistic students, and nonverbal autistic people who could communicate by typing began to emerge, I think I’d make an effort to meet them. I understand there are skeptics. I understand there is doubt, but I also know that ignoring things doesn’t change reality. I know that for those skeptics who attack as fake every autistic communicator who appears in the news, that it is also impossible for them to be certain of a person’s skills and abilities without seeing the person.
So many of us now type without any tactile support. Many of us are eager to collaborate and guide research ideas, but only a rare few researchers ask.
I have three dogs and if they go to the veterinarian with symptoms the vet must guess what is wrong because the dog can’t tell him. Many times we wished the dog could elaborate so the vet wouldn’t need to guess, occasionally incorrectly. Autistic people who are nonverbal have faced guesses too because of their long-time inability to communicate. Now many can explain symptoms but the “vet” doesn’t seem to be interested in asking.
I believe our explanations for our symptoms are important in informing researchers in where to look for answers and how to better educate us.
What explains this un-query?
Every day I meet new communicators. Not babies, but kids in elementary school, teens and young adults. Their lives had been limited in one way communication for way too many years. They listened but they had no way to answer. In any case, they heard people. Many of them heard their parents moan and groan and say comments like, “I don’t know how much intelligence is there. I don’t think he understands much.” They listened to their teachers say things like, “He isn’t aware of right from wrong. He isn’t aware of his surroundings. He is oppositional today.” They listened to ABA specialists tell them, “No, try again,” “No, try again,” “No, try again,” and “High five. Good job.” They heard a world that thought they were dumb. But the world in this case was wrong.
It isn’t a lack of intelligence to be able to think but to not be able to get your body to show it. It is being trapped. If I put your hands into baseball mitts and your tongue was trapped in gooey sludge and couldn’t move right and I bombarded you with questions, I think you would agree you would have a hard time showing that you had an intact mind, especially if those baseball mitt hands moved differently to your thoughts and wishes sometimes, and everyone assumed that people with sludge tongues and baseball mitt hands were intellectually low.
I know the way to escape this isolation is not to tell sludge tongues and baseball mitt hands to move in ways they can’t. It is to teach those hands to point to letters, to type with one finger and to communicate. There is now a steady tide of people, once thought to be dumb, once thought to need baby lessons and baby talk who are mastering communication on letter board and typing. And voila! Not dumb!
More than anything they find relief being recognized as intelligent. And some find even more; a mission, friendship, a life of meaning. But none will go back into the closet of silence.
I wonder if you are a parent, teacher or professional and you have seen a “dumb” kid prove himself smart, how do you react with other kids? How long should they wait for you?
Posted in "low-functioning" autism, ABA, apraxia, autism education, autism theories, autism treatments, Communication, letterboard, mind/body communication, motor planning, non-verbal autism, typing
The idea of treating autism as a mental illness is incredible. I somehow intuit that Bettelheim’s influence is at work in France where they still treat autism with psychotherapy. I don’t think much progress will be made though by emphasizing the wrong treatment. That being said, I did see a therapist when I was twelve, but she didn’t treat my autism. She helped me to accept myself with autism because I was getting so sad about my limitations. However, in no way could she have cured me of my neurological issues. Anyway, this is my insider’s point-of-view.
For me, exercise is a necessary thing. If I’m irritable I get poor impulse control. The tension is overwhelming inside, but if I jog or walk or do a Tony Horton tape, I stabilize. That is why stamina is good for fighting autism. Two and a half years ago I was sorely out of shape. I couldn’t run more than a short distance without real fatigue. I was weak in my abs and unable to lose weight. I was down too.
I was forced to exercise. My mom insisted that I needed to assume I could be fit. She pushed me hard and I was resistant and tried to make her quit. Stupid in retrospect. My mom and I persevered until she hired a wonderful- really wonderful- trainer for me.
I never had a guy who got me so well. It was hard, man. We worked on cardio and coordination and strength. I loved it eventually, and I stopped resisting. Truthfully, he was so much stronger than me I couldn’t have won if I tried.
My family is active so I needed to have stamina too. I think exercise helped me in so many ways. I’m not sad like before. I concentrate now in school better. I have much more body awareness, and I feel better than ever.
I should do more. I always get scared to try, but it’s silly. Formerly I couldn’t do much. I’m so much fitter now, but it’s good to go farther. So… work out here I come! Ha-ha.