Why Would Speech Professionals Deny Autistic People The Right to Communicate?
Note: Below is an excerpt from an Opinion piece in The Wall Street Journal by Ido Kedar. There is a push to deny people with non-verbal autism methods of communication like Rapid Prompt. Disclaimer? My three daughters have been to see Soma of HALO and used Rapid Prompt. With success. I watched my Mia tell Soma she wanted to go to Israel. Bella spelled many short words with the letter board as her father and I sat nearby in tears. I believe in the ability of RPM to assist people to communicate. I've seen it in my girls. It takes time. Patience. Staff. And money to learn. As does any and EVERY treatment for our kids, allopathic, traditional or otherwise. I had the pleasure of meeting Chantal Sicile Kira's son Jeremy, who uses a letterboard. Within 20 minutes of meeting me he typed, "Kim is a good mother. I like the way she talks about her girls," from the backseat of the car. Alert. Receptively intact. Like my Bella - who is looked upon as a sad sack dummy by many. Because she can not speak.
In 12 years of schooling, Bella has not made 1 inch of progress with traditional speech pathology. It's a travesty really. Their goals are terrible and our school speech paths know precious little outside their ineffective boxes. They hardly know basic apps for an iPad and we live in a pretty progressive district.
Please read Ido Kedar's blog - Ido in Autismland to learn about the push by professionals to punish people with autism by taking away their choices for communication. He discusses the response of ASHA to his WSJ piece. From the WSJ - with a paywall, but still, it's pretty amazing the Opinion was published:
I Was Born Unable to Speak, and a Disputed Treatment Saved Me The Rapid Prompting Method taught me to communicate. But speech pathologists disdain it.
I have nonspeaking autism, which means my ability to communicate verbally is limited to a few words and well-practiced short phrases. Thanks to apraxia, even that is mostly unintelligible, except to those who know me well. While no one demanded that Stephen Hawking rely on his speech to prove his smarts, it's different with non-speaking autism.....
From Ido's blog:
Nonspeaking does not mean non-thinking. That’s my mantra. Nonspeaking may be caused by motor issues. That’s my message. Motor issues do not cause stupidity. That’s my point.
Being locked internally because of motor issues is not the same as a language processing problem and should not be treated as such.
There is an overwhelming need for professionals to learn about autism from those who live it and can describe it in words. I am referring to the nonspeaking typer who tries to explain autism from the inside out. There are now quite a few of us, and the number is growing. Our messages are always the same. Intact mind/disobeying body. Smart head/dumb body. Thinking mind/non-thinking motor system. Not speaking is not the same as not thinking.
In the six years since my first book, Ido in Autismland, was published, only one researcher ever contacted me to learn about autism from me. That’s kind of pathetic, if you think about it. I’d like to help guide their research based on my real symptoms to help improve treatments and theories. A fair skeptic and an inquiring scientific thinker might take the time to meet a proficient typer, to ask questions, to learn about their journey to increasing fluency. But they don’t, for some reason.
All this is due to the 3 P’s that preoccupy the skeptics. Proofs, prompts and presumption of competence (or lack thereof).
Proof
In ASHA’s response to my editorial, they say they need testing proof before they can entertain the possibility that RPM might have any validity. This intrigues me for a couple of reasons. There is a need to validate claims and I think we all recognize that, but there is more than a single way to get data. Observational data and longitudinal studies, including film, would be one way. Another would be well-designed studies that factor in the motor and anxiety issues people with autism describe. Without doing so, there is a significant chance of a poorly designed study producing skewed or incorrect results.
Augmentative and Alternative Communication and Possum Communication Boards .
Available to read online.
The Handbook of Augmentative and Alternative Communication By Sharon Glennon , and Denise C DeCoste .
Do those same old, self-serving, stagnated,institutionalised ,attitudes, still think that people with communication difficulties are only to be seen but not heard !
"When Your Voice is But a Whisper " by Capability Scotland Youtube
Posted by: Morag | October 16, 2018 at 03:48 AM
Hi Patricia Costello, Firstly, I am glad your son is doing so well. Congratulations!
Re sign language, my son has apraxia, motor planning issues, and disabled fingers. He still learned sign language. We taught it from when he was a baby . Heres milk. (sign for milk). Water (sign for water) same thing, day after day, the signs he was most likely to want to know.( my son is not autistic, though many of his social challenges and speech apraxia are extremely similar) but he has a rare chromosome disorder, and we were told at birth that he was likely to be mute, also possibly never able to walk)
Kids with cerebral palsy can learn to sign as well. There is an autistic non verbal young man at my son's school who has made up some gestures, and uses some signs, but no one at school seems interested in teaching more of it to him, or talking to him with sign.. A lot of teaching sign is the repetition, time and time again, of useful things, though of course, everyone is different, and things one finds easy may be hard for another..
Posted by: Hera | October 15, 2018 at 06:59 PM
My 22-yr-old, non-verbal son has done spectacularly with RPM for the last 3 years, after zero progress with 16+ years of speech therapy. My response to Carol regarding sign language is that those with apraxia, like my son, can't learn it due to their severe motor issues. I can't speak for all autistics, but I've never seen any in our area
who use it.
Posted by: Patricia Costello | October 15, 2018 at 05:55 PM
Hi All, I think that firstly, many people who cannot speak are much more aware and intelligent than they appear.
I also believe that any time there is an interpreter being involved in someones speech, the interpreter needs to be tested for accuracy. That means the communication is accurately representing the disabled person, not the imagination of the helper. Anything else is less than fair to a disabled person. no one else has a right to pretend to be their voice.
If the disabled person is typing for themselves , then the ideas are coming from them, no question. If someone else is needed to help, then the ideas need to be verified. It is not hard, and doesn't have to require "expert' testing. Simply ask for information the helper doesn't know. Change breakfast and get the unaware helper to ask what they had for breakfast that morning, or did they enjoy it, or other similar , socially normal questions. This is testing the helper, not the disabled person, and it is a basic requirement for any type of communication.
To give another example , if someone represents themselves as a sign language interpreter, but doesn't understand the signs used, and instead makes guesses as to the appropriate answers, then they aren't giving the disabled a voice. They are taking away their voice.
My son was intially non verbal, we taught him sign language.Now he has speech, slower than usual, and we have indeed had to fight throughout his life to convince teachers etc of his right to, and ability to learn rather than placing him in warehousing "lifeskills" classes where all he does is listen to the teachers gossip.
But the reality is, at least for him, his problems with expressive ( not receptive) language apply to writing too. There is no way he can type fluent sentences. He can read much better than he can write, but the expressive language part of his brain makes writing sentences an extremely laborious and very difficult process for him.
Though every child is different, I know that despite his brightness, (he is in a psychology class right now and enjoying it, with some accommodations) there is no way he would have miraculously been able to type when he was non verbal. Sign? yes. Point to picture boards, yes. Read much more than he could speak; yes. Write or type fluently; no.
Being bright doesn't always mean being able to communicate using words. And sudden , unexplained written fluency does need to be checked to make sure of whose voice is speaking.
Posted by: Hera | October 15, 2018 at 04:01 PM
Any gesture-based language would be difficult for someone with sensory and motor issues. Remember: if they could, they would. It’s their uncooperative bodies that keep them from talking, writing, signing, because they have difficulty starting, stopping and executing.
I am a SLP. ASHA missed the boat on this: it could have been in the forefront of RPM and FC years ago, controlling how each was taught and implemented, but instead chose to be on the wrong side of history. When used conscientiously, there is very little room for influence by the communication partner. Even with FC, which has been unfairly maligned, the goal is typer independence.
It is puzzling why ASHA refuses to recognize the overarching feature of autism: dyspraxia resulting from sensory and motor difficulties. I’ve heard professionals state (in all seriousness) “What do you mean he have motor difficulties? He feeds himself and can find videos on YouTube!” These are learned behaviors that have nothing to do with novel, intentional movements. In fact, many of my clients lament their own behaviors, as it gives others the impression that they love childish things. Their own impulses are their worst enemy! Only by giving them the accommodations they need can they break free of the mind-body disconnect.
Posted by: Lisa Keller | October 15, 2018 at 03:57 PM
My heart hurts so much over the prejudice against so many of our children who have found a way to function in this world that has been a prison for them. I get it ABA IS POWERFUL, and they wish to be the only game in town. But so many of our children have tried, for years and years we’ve all tried what the “experts” tell desperate parents to do! We try it all. We spend our life savings trying it all. Then something works! Something outside of their level of expertise. Something the “experts” discourage t because truly they have no real experience with it. Just what they’ve read or been told. My son who was so violent. So impossible is now a calm, poised happy person. He changed completely when he typed! He will be independent soon so all the naysayers will have to swallow their pride and admit it was always REAL! The. What? What do u say to those who are lucky enough to become Independent? U can discount them the . Will you really silence them all AGAIN? It’s true I’m saddened, but more than that I’m appalled at the arrogance. There are not many with autism who are older than my son (27) we are some of the first to hit the world with this condition. We have barely touched the surface of what might help! Don’t hide behind your degrees and say u know better! You spend 27 years trying everything! You push and read and research and find something that works!!! Then have an expert deny its validity just because some other experts said so. You won’t be able to stop this from happening! Because it is happening, within autism families all over the world!
Posted by: Teresa Holman | October 15, 2018 at 02:23 PM
Thank you so much for posting this.
Non-speaking, non-reliably speaking autistic people need communication!
It is so short-sighted on ASHA's part to dig in their heels regarding RPM, as many people have learned to spell out their thoughts, even independently, like Ido Kedar. ASHA's Ad Hoc committee did not consult with non-speaking people or their families and advocates, and ignored calls for review of their position. Despite their agenda to advocate for only "evidence-based" treatment, ASHA has no "evidence" for their position.
The difficulties with fine motor skills, with initiating movements, and with motor planning, however, are well documented in research. I can't help but wonder whether ASHA is deliberately ignoring these differences which affect communication.
Listening to non-speaking people as they inform us of how they communicate is likely the first step in understanding.
Looking at ways to work with motor planning and initiating of movement, rather than assuming cognitive impairment, will likely develop ways in which non-speaking people can communicate fully.
Posted by: Shanni | October 15, 2018 at 01:58 PM
Thank you for this! RPM rocks! I don't understand why ASHA would speak out so strongly against it when they haven't tested it! It's kind of like being sure that vaccines don't cause autism before you've done that vaxed/unvaxed study!
Posted by: Nancy | October 15, 2018 at 10:39 AM
Thank you
For you post this bring me tears because I can truly relate. I know our kids are in there. We just have to give them the “right” tools to help them navigate this world! Much love
Posted by: Silvia Martinez | October 15, 2018 at 09:59 AM
My 26 year old, non verbal, grandson loves the county I live in and he loves Beanos (a uk comic dating back to 1930s) He knows I always have a supply.
When I knew he was visiting Cornwall recently, I made a word board. On the day he came here with his mother he had already been to several places. I decided to leave giving him the Beanos until I had tried out the word board. Soon after arrival, I produced the board and asked him which was the favourite place he had seen. Without any hesitation, he spelt out 'Beano'. Result!
(His mother had told me his favourite cake, which I had ready, so I asked him which cake he liked best and, again, no hesitation - 'chocolate'.)
Posted by: Susan Welch | October 15, 2018 at 08:54 AM
Can autistic kids learn American sign language (or any kind of sign language)? I realize this would mean that parents and siblings would have to learn it too, but that's not beyond the realm.
Posted by: Carol | October 15, 2018 at 07:58 AM