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).
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.