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.
Have there been studies and internal reviews in the so-called “evidence-based” autism treatments, such as ABA and speech therapy, as to why a significant number of nonspeaking people struggle to progress using these evidence-based methods? It is too easy an out to say progress doesn’t occur because the person is “low-functioning.” If that’s the case, it doesn’t take ten years of costly treatment to find out. On the other hand, some so-called “failures” of evidence-based treatments go on to become successes, as I did, when the treatment adequately addresses the motor issues impeding performance.
Prompts
In ABA the prompts are constant, duly noted in logbooks. In speech therapy the prompts are constant too. There are prompts in PECS, Adaptive PE, in school, in every moment, in every treatment, every day of an autistic kid’s life.
RPM uses prompts too. No surprise really. The acronym stands for Rapid Prompting Method. But the prompts do not consist of motoring someone. People are moving their own arm independently. The prompts are to look, to scan an array of letters, to reach far enough, to help someone gain skills in motor precision and in hands and eyes synchronizing for the purposes of communication. Beginners get lots of prompts. Fluent people get few, and mostly just type, though someone may say “keep going,” or someone may hold a letter board steady. As skills improve, prompts go down. Why are prompts acceptable in every autism treatment except touching letters for the purposes of communication? It’s illogical. And it’s all due to this issue:
Presumption of Competence
Well, you can either presume I’m incompetent or competent. I prefer the latter.
There are two philosophies guiding much of autism theories and education. In one there is no presumption of competence. Rather, the nonspeaking individual is determined to be low-functioning intellectually and not properly processing human speech, thus requiring simplified lessons and constant drilling. This is the prevailing theory.
In the other, there is a presumption of competence— that is, an intact mind may be buried behind a messed up motor system caused by neurological factors. Therefore, if the person is taught to move properly to point and spell words, that person may learn to express thoughts and potentially get a more normal education. Many, once thought to be hopeless cases, have proven that, like books, they shouldn’t be judged entirely by their cover.
That has been true for me and for many, many others. That is why I wrote my editorial, my blog and books. The professionals who insist they speak for science too often ignore evidence that may intrude on their theories, but facts will out. There are more typers each day, and once someone has a voice, he or she wants to speak out.
Ido, in the first chapter of your book, In Two Worlds, the last line is — if I may say so — a real kicker.
I also thought the whole chapter was “very Ido.” But, heck, if the RPM skeptics can’t handle it, maybe they should award the Pullitzer to your mother.
Ido, in the first chapter of your book, In Two Worlds, the last line is — if I may say so — a real kicker.
I also thought the whole chapter was “very Ido.” But, heck, if the RPM skeptics can’t handle it, maybe they should award the Pullitzer to your mother.
Very well said Ido. Thank you. I have a loved one who types,he learnt via FCT and can now type without any physical touch. You are not alone in your passion for research and change. Xo
I agree with you totally Ido. MY wife and I have bought up a nonverbal autistic grandson [Ora]who is now aged 24, but learned to type on an iPad using facilitated communication at aged 18. just this week we took him and his speech therapist to a lawyer to update his will. he was able to answer questions from the lawyer and when requested by the lawyer to sign the document with a cross,he did so with the lawyers hand touching his. the lawyer commented “I felt him moving the pen,it was definitely not me”
Thank you for being a voice! I have loved both of your books (almost done with your second one). They have absolutely made me a better exercise/brain integration therapist regardless of the level of disability a child/adult that I work with may have. I am currently working with a non-verbal autistic teenager right now and your books have been invaluable! He is definitely a brilliant young man! We are working hard on making brain/body connections through crossing the mid-line, body separation, eye-hand coordination, and core strength, so that he can have the confidence and accuracy to use a letter board. I love being a therapist that is like none other. I have been meaning to reach out to you for quite some time and I apologize for not doing so sooner. You are right, in order to “prove” to government-funded entities research studies, unfortunately, need to be established. I look forward to helping out many more non-verbal autistic individuals as I am around many through my church’s special needs ministry. Feel free to reach out to me if you would like to have more conversation.
Well said, Ido. It sounds to me that you may be the researcher needed to address these issues. You will undoubtedly find colleagues and support in the process. Keep up the great work, Raye Robertson
You are a leader, Ido, and much appreciated by so many, including this humble SLP who regularly learns from her clients. My mantra has been that “non-speaking, minimally-speaking, or unreliably-speaking is not ‘non-verbal,’ that speech is just one modality of verbal output. Verbal = words, and they can be expressed through sign language, typing, AAC, and writing.” I think the other gift from Soma with RPM has been her clever way of inputting via the right ear, the quick reception by the left brain, and the low-motor output of the right index finger. At the learning stage, this seems to help many who are so right-brained-brilliant.
How do we start rpm with my 3 yr old autistic grandson who is now in a a?
3 is a little young but you can prepare him by working on literacy skills since you have to be able to read in order to type to communicate. Start by reading to him (age appropriate books), watch tv programs with captions, etc. Find out if anyone qualified teaches typing to communicate in your area. You can reach out to us if you’re not sure.
Hi, Ido!
I am a speech pathologist who is highly supportive of you and all of your extraordinary accomplishments as a writer and nonverbal communicator. I have a serious question for you: I work with 3-5-year-olds who present on the spectrum. My gut tells me that many of them are locked inside as you describe yourself. What is your suggestion for working with these little ones who cannot yet read or spell or keyboard? Right now I work from all angles, trying to see if we can break through the apraxia and at the same time offering an AAC iPad with pictures. Your advice would be so valuable to me!
Here is what I suggest: talk normally to them. (My advice to everyone – No more ABA style speech. It’s beyond irritating). They need to be read to and to see writing and how words are spelled in order to learn to read. Once they can read thye can learn to touch letters to communicate. My mom and I are developing an online course to teach how to work on communication with nonspeaking autistic people. Lots of steps to the journey but you have succeeded in step one- realizing that a smart person is stuck behind an uncooperative motor system.
Thanks so much, Ido! I do speak very normally to my preschoolers diagnosed on the spectrum, unless my intuition tells me that there is an auditory processing component to their difficulties, in which case I may simplify, but I do NOT ever use ABA-speak!! In the case of a child with auditory processing challenges as well, early literacy experiences and emphasis on visual support for learning is invaluable. I look forward ro your online course; please keep my little ones in mind!!
Hi ido, an on-line course would be amazing! We were discussing facilatated communication, as our son uses it. We were having chinese food, and this was our son’s “fortune” found in his cookie, ….”one’s mind, once stretched by a new idea, never regains its original dimensions.” How fitting, as I think it applies to all of us here!
Thanks to all for this post and discussion. Our 21 year old daughter is a speller and it has completely changed her life and ours. After years of traditional speech therapy, we had made little progress with communication or behavior. Now after almost ten years on the boards, she is taking classes and working towards independent living. We have also observed more meaningful vocalizations when she does talk. She is finally able to access a meaningful day and life. The future is bright – not something we had to look forward to when we were on the ASHA train.
Ido,
Keep going. We just started RPM with our 21 year old, and we had a very powerful session. It’s complicated and it will probably not work for everyone, but Dustin is off to a good start. I saw your WSJ article and just signed up for your Blog. Keep going !!
Hi Ido,
I just got your books, and am very much looking forward to reading them. You have an important voice, and I’m grateful for the way you are speaking up.
Much love, brother.