Category Archives: Self determination

History Repeats Itself

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 o
ne 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)

My Speech at the Autism Society Self Determination Conference

When you think of your future, you have lots of ideas.

So do I.

Remember when you finished high school? What were your plans?

My plans are similar. I want a college degree. I want independent living one day. I want a relationship. I want a fulfilling job. I must try to get these despite my autism and my not speaking and all the challenges this brings.

From our earliest ages people with autism are used to being told what to do.

Touch your nose!

Touch your head!

Look at me!

Hands down.

All done!

Self-determination means having the right to express what I need to achieve my goals.

This means that the unique and individual needs of people with disabilities need to be addressed. My needs are different than the cookie cutter. This means that agencies, like Regional Center, and others, that support us in our adult lives, need to be adaptable.

I want to get the right support. The support I need may be very different than what other people with disabilities, or even other people with autism need, to succeed in college and in a career. I am a bright enough guy to know my needs and the kind of support that will enable me to achieve my goals. I want to be sure that the support and services I will receive after high school will be what I truly need and not based on the needs of other people with different plans or different talents.

My experts have missed the mark most of my life. Kind of like a tennis player who keeps missing the ball or hitting it to the wrong court.

That’s why I would really like to plan my own course and have a say in my own life.

We need partners to support us, not planners to tell us where we belong.

Isn’t that supposed to be the objective of all the services we have received all our lives anyway?

I warn you about one thing though. A consequence of teaching autistic people to type is that we have opinions and we have determination. Once we can express them we will demand a voice in our own futures.