Category Archives: apraxia

Proposed Position Papers by ASHA (American Speech Language and Hearing Association) Demean my Communication

The experts at ASHA, the American Speech Language and Hearing Association, have evidently become concerned that more and more autistic  people have broken through the communication barrier using methods other than theirs. Their response has been to put together a position paper condemning these other methods. It’s a bit ironic. In my own case, speech therapy didn’t accomplish much despite years  of expert instruction. Too often, the failed autistic speaker is blamed for the failure to speak because he is labeled as being too low functioning, too lazy, or too dumb to advance. And the speech therapist is off the hook for failing to made headway in communication with the non-speaking student since he’s written off as being low functioning, lazy, or dumb. It’s a great system, to be sure.

So certain methods that try to teach another way to communication are derided as a hoax. Hoaxes  certainly exist in autistic treatments. One must be vigilant because unknown neurological factors are at play and people can make treatment claims based on nothing more than the hopes of parents. But hopeful parents can  also spend 10 years  (or more) on well-established methods that give little result more than a few embedded phrases and some unclearly articulated words to show for it. When the end result of ten years of speech therapy is someone who speaks like I do, then from their point-of-view,  it seems a logical extension to determine that the method that gave me the ability to express myself fluently through letters is invalid. Of course, if  I had been left with my speech alone to communicate, I’d still be locked in and completely trapped. They reject my communication because they were not successful teaching me- or others like me- to communicate expressively.

So, no thanks. I’ll take a “hoax” that worked over a treatment that failed me any day.

The ASHA position is still in draft form. You can rebut or respond until June 24. Here is a link.  And here are some sample quotes that show their line of thinking. Note that the communication of typers, (and this is regardless of the degree of autonomy), is discredited.

“For both FC and RPM, there is no credible evidence that messages are authored by the person with a disability, and there is no credible evidence indicating authentic independent communication or any other beneficial outcome arising from FC or RPM (Lang et al., 2014; Tostanoski et al., 2014; Schlosser et al., 2014).”

“(ii) In RPM, there is no empirical evidence to show that facilitated messages are authored by the individual with a disability.”

“Both FC and RPM rely on presumptions of competency (Travers & Ayres, 2015). Presumption of competency is a risk to an individual’s safety when it is given more credence in treatment decisions than known facts about the individual or evidence to the contrary.”

“In the absence of evidence that messages delivered by RPM are authored by the person with a disability, RPM poses a potential risk of harm to the person using RPM and their family members. This is because, RPM being untested, there is a risk that the messages delivered via RPM are not authored by the individual but are instead authored by the “facilitator.” Other professional associations have warned members against using RPM (Irish Association of Speech & Language Therapists, 2017; Speech Pathology Australia, 2012; Speech-Language and Audiology Canada, 2018).”

Out of the Closet

 

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?

Autism Expertise

I think it is easy to misinterpret the behavior of non-verbal autistic people who can’t communicate. It happened to me often in my youth when I had limited output. Lots of interpretations of my actions were pure guessing by professionals, but I could do nothing to challenge them or correct their ideas. Recently, I have been talking to some professionals in order to fix this. They describe the puzzling actions of a non-verbal autistic kid, tell me their interpretations, and I get to give my two cents. This is important because my two cents is really different from their interpretations. Being autistic myself, I see the behavior in a totally different way than they do based on observation and theories.

The Benefit of the Doubt

Sometimes I read about other people and their challenges. It often gives me hope. This is a quote from Gabrielle Giffords new book about her brain trauma and rehabilitation.

“In the first weeks after Gabby was injured, she couldn’t say anything at all, which left her terribly scared. She felt trapped inside herself. By mid-February, Gabby had begun formulating words, but they were often delivered haltingly or incorrectly. Her speech therapist handed her a photo of a chair and asked her what she was looking at.
“Spoon,” Gabby said. “Spoon.”
When shown a lamp, Gabby said, “cheeseburger.”
She also got stuck on random words. No matter what she meant to say, the same word, “chicken,” often came out in a burst: “Chicken, chicken, chicken.”
For Gabby it was almost unbearably frustrating.”

Oh, does this ever sound familiar. It is interesting how Gabrielle Giffords got the benefit of the doubt. Pretty soon she got better too, so she is extremely fortunate. In autism we kind of live there all our lives. Each neurological challenge is different, but autism does not get the benefit of the doubt. People assume we get the word wrong because we don’t know the word. It isn’t true in my case. Is it possible in others? What do you think? Do autistic people deserve the benefit of the doubt too?