In the olden days, Deaf Education tried to make the deaf look hearing. Deaf children had to learn lip reading and speech. The use of sign language was prohibited in schools. In those days many deaf people were born hearing so they knew what speech sounded like and what it felt like to talk before they were deafened by illness. Those children did pretty well speaking and lip reading as a result, and phenomenally better when compared to born deaf people who had never had the sound of speech to guide them. The schools touted their successful speakers as proof of their methods, and the so-called failures, un-touted, had to be stuck without sign language, the ability to speak clearly or the ability to read silent lips.
There is an obvious parallel to autism now. The successes of ABA have typically been children like the character, Peter, in my novel, In Two Worlds. For those unfamiliar with the story, the novel’s protagonist, Anthony has nonspeaking autism and is considered by professionals to be “low-functioning.” Peter, a boy his same age, is talking verbally and is considered to be “high-functioning.” But they are actually lumped as identical in terms of diagnosis. Moreover, they receive identical therapies. Peter is successful because of the methods, they say. Anthony is a failure because his autism is too severe, they also say.
Though the born hearing child and the born deaf child were both not able to hear, their situations simply were not the same. One had a distinct advantage with the educational methods provided because of those years having heard and having produced speech. So too, Peter is not the same as Anthony. His motor system performs more reliably. He is able to show many more skills. Their differing responses to the discrete trials does not take into account how different their symptoms are nor how one child may thrive with a treatment that fails another.
Anthony is bright but is severely trapped behind an uncooperative motor system that makes him appear foolish. He might get drills and flashcards to his dying day but it won’t give him the ability to show his intelligence. To do that he must be able to communicate in an accessible modality, by pointing to letters, and not by speech. When the deaf community insisted that they needed sign language in order to live fully and to not miss out on real communication, educational change happened. The deaf finally got a say in how deaf people were educated. I believe change in autism education and treatment will finally come when limited and nonspeaking autistic people demand a say in their education and mode of communication too.
Below is an excerpt from In Two Worlds from the chapter in which you meet Peter.
From Chapter 11: Peter, Autistic Superstar
Peter was the same age as Anthony. He had the same diagnosis. He also worked with Natasha, Nina, Charlotte and Alyssa in the ABA program, and Anthony and Peter also shared the same speech therapist. In fact, Peter was her star pupil. Their lives were practically parallel, but in every professional comparison with Peter, Anthony came out looking bad. Peter learned his drills faster. He learned to follow instructions quickly. He spoke with clear articulation and he looked fairly normal. He occasionally had temper tantrums, but otherwise Peter was the dream student.
To Anthony, Peter seemed to be the luckiest autistic guy in the universe. On the journey they shared, Peter was nearing the finish line and Anthony was barely out of the gates. The ABA data showed Peter learning new words rapidly, so rapidly he was doing the most advanced drills out there. Dr. Hagerty loved to remind people that he helped make some autistic kids lose their diagnosis. They may have been born impaired, but hard work, dogged perseverance and a little luck made a boy like Peter succeed. A case like Peter was the reason Dr. Hagerty had his reputation. He had many such cases, proof of the efficacy of his methods. Peter was an autism success story.
A stubborn case like Anthony confounded Hagerty, and everyone else. After years of intensive ABA, Anthony had progressed in his drills, but in no way was he looking even remotely close to normal. He had reached the point that many professionals believed to be virtually hopeless. They might help mitigate his symptoms but he would never “recover,” in the jargon of the trade. So, Anthony knew he was an autistic failure. He could not prove his intelligence, like lucky Peter. He knew that, because Nina and Natasha and everyone else also worked with Peter, they could not help but compare the boys. Anthony prayed inside to be like Peter. If only he could make his body obey him he could perform perfectly on his discrete trials too. But instead he was one of those frustrating kids who made Natasha and his team carry on with false optimism.
(I hope you enjoyed this excerpt from In Two Worlds. If you did, please consider reading the whole thing!)
(Also available as an ebook on Smashwords as well as kindle)
Peter’s probably getting messed up by ABA, too, even though he seems like such a success. He’s learning that he can’t be himself and he can’t say no, and his suffering is worth it to not be a mild annoyance to others.
Ido, please keep writing, keep advocating — for all of us. Your insight is profound and your ability and willingness to address these issues publicly is heroic. THANK YOU.
So important! Thank you for sharing. I am a teacher and I regularly read your blog and I have read your books. You have really helped me understand so much about non-verbal autism. I love how you have explored ‘high-functioning’ and ‘low-functioning’ in you novel. These terms are damaging and flawed. Thank you for exploring these topics and using your experience to educate. I have enjoyed your ideas and your creativity.
Hi Ido. I am autistic and have verbal speech, but I’m not very able to express my sensitivity with it, so I use AAC to supplement my communication. I am from Brazil, and my native language is Portuguese. I was wondering if you would be ok with me translating your texts to Portuguese on a blog? I run an autism page and a lot of parents read me, so I think it would be so important for them to read about the experience of non-speaking autistics. But I can’t share your blog directly there, because it is in English. I would credit your name, of course, and link to the original. Looking forward to hearing from you. If you don’t feel comfortable with that it’s totally fine, of course. I’m a big fan.
I would be happy to have you translate my blog posts in Portuguese and appreciate the links. Thanks for helping autistic people in Brazil.
This is fantastic! I’m looking forward to reading the book!
I recently found your blog through Philip Reyes’ blog, and I was so happy to find it! This is such a fantastic blog!
I was also wondering if you’d be interested in participating in an online survey that will help people understand how communication devices are helpful to wellbeing. I’m a senior at Lafayette College, and I’ve started collecting data for my senior thesis. I’m studying the relationship between access to communication devices in childhood and wellbeing in adulthood for nonspeaking populations. I’m hoping the results will be useful for nonspeaking individuals and their families.
I was wondering if you might be willing to participate? The online survey takes less than 30 minutes and you can be entered to win an Amazon giftcard as a thank you.
Here’s the link to the survey if you’re interested in
participating! https://lafayettec.az1.qualtrics.com/jfe/form/SV_3HSA7XwQr8SAsi9 Feel free to share it with friends who are or used to be nonspeaking, too!
I’d love to chat with you more about it if you have any questions! Hope you have a very happy new year!
I heard the expression ‘silent/still hands’ first in the experiences of the deaf who were not allowed to sign, so there are even more similarities 🙂 (silent and still are the same word in Dutch, my native language). Well, I’d better start reading your new book!