ASHA tells 50 million nonspeakers, “you aren’t capable.”
By J.B. Handley
PORTLAND, Oregon—We’re finishing up the filming for our new documentary, SPELLERS, a movie inspired by the book my son Jamie and I wrote in 2021 titled Underestimated: an Autism Miracle. Briefly, it's the story of the miraculous discovery my family made that our 17-year-old son Jamie was cognitively brilliant but “trapped” inside his own body. What freed him from this self-described “silent prison”? A communication method known as Spelling 2 Communicate, heretofore referred to as “S2C.” Here’s a great video primer on S2C:
Our book was released in the Spring of 2021. At the time, Jamie communicated on a held keyboard, meaning someone had to hold a keyboard in front of Jamie and he would type what he wanted to say into an app on an iPad. We did interviews that were seen by hundreds of thousands of people, with Jamie typing on this held keyboard and spontaneously answering interviewer questions. For the curious, here’s one interview we did with Jenny McCarthy:
Today, the miracle with Jamie continues unabated. Jamie no longer needs anyone to hold the keyboard for him. As you can see in the picture at the top of this post, Jamie is able to spell his thoughts and feelings independently, even with two cameramen filming his every move (well, you can’t actually see it yet, but trust me you will soon, that scene is in the movie!). At home, without the Hollywood klieg lights on, it gets even better: Jamie is now typing with two hands on a flat keyboard, communicating the way most of us do.
ASHA’s statement
I’m guessing half the people reading this article don’t know what the ASHA acronym stands for (thanks for sticking with me!) so here you go: American Speech Language Hearing Association. Basically, it’s a trade group that represents more than 200,000 speech language pathologists, is based in Rockville, MD, and is run by a woman named Vicki Deal-Williams.
For those of you not in the autism world, Speech Language Pathologists (we call them “SLPs”) are a big deal. They work with our kids. They try to help them talk. Some of them are great, amazing people. And, those who call themselves SLPs only do so for one reason: they have received the accreditation of ASHA. These credentials allow them to refer to themselves as SLPs, and these hard-earned credentials are everything to them. Therefore, what ASHA says carries huge weight with them, and they sure don’t want their credential pulled by not marching to their tune.
And, in 2018, ASHA did something with their weight that has had a giant impact on the roughly 50 million nonspeakers in the world: they issued a proclamation stating that what my son was doing on a keyboard was a magic trick, was not coming from him, and that SLPs should run, not walk, away from ever using a letterboard and should actively discourage parents from trying S2C, too.
I tell this to my friends. The ones who’ve watched Jamie spell in person. I tell them about ASHA, the way they have cast giant doubt over Jamie and all his friends and what they’re all doing on the boards. They don’t believe me. I didn't believe it either, but here it is, their entire statement. Read it for yourself. If you don’t feel like reading it, I’ll quote their five headline points that make up their statement, here you go:
There is uncertainty regarding who does the spelling
RPM creates dependence on another person, thus preventing independent communication.
RPM lacks evidence of effectiveness.
RPM holds the potential for harm.
RPM is similar to a discredited and dangerous technique called Facilitated Communication (FC).
(By the way, ASHA uses the word “RPM” throughout their statement. People in my world view RPM and S2C as cousins: related, but not entirely similar. ASHA states that RPM is “also known as Spelling to Communicate and a range of other names..” It’s ignorant, but ASHA considers them synonymous.)
ASHA’s Impact
ASHA’s statement was written in 2018. Jamie started spelling in late 2019. At his otherwise well-intentioned autism school here in Portland, we experienced the full brunt of ASHA’s statement when we proudly informed the school of Jamie’s newly acquired spelling skills:
The resident SLP, who had Jamie carrying around a $7,000 useless AAC device for 4 years, wouldn't even sit in the same room as Jamie to watch him spell and badmouthed the method throughout the school. He never approached Jamie or me to ask even a single question about this communication miracle we had experienced.
His homeroom lifeskills teacher, an ABA therapist (they also cite the ASHA statement as gospel), not only wouldn't allow the letterboard in her classroom, she also took it upon herself to call the parents of every other nonspeaking kid in Jamie’s class to warn them against using a letterboard. And, she too would never watch Jamie spell for herself.
The school faced a near mutiny from roughly half the faculty who were adamant that Jamie shouldn't be allowed to bring a letterboard into the school. To the school’s credit, they allowed Jamie to attend class with one of the few teachers willing to believe the words coming from the letterboard belonged to Jamie. She was an angel, but the overt hostility of the faculty members got to Jamie, and he chose to withdraw from the school.
Out story is very common. This is happening in schools all over the country, and it’s happening because of the ASHA statement.
It’s called skill progression
Jamie’s ascent to independent typing was no accident. In fact, it’s been a very linear progression of skill development that his amazing S2C practitioner, Dawnmarie Gaivin, laid out for him years ago, and it goes something like this:
Start with an 8-letter stencil board, use a held pencil to point at letters, and spell known words that your instructor asks you to spell.
After months of tireless work, move to a 26-letter stencil board and answer questions directly from a lesson.
After months of tireless work, start to answer more “open” questions on that 26-letter stencil board, begin to express your own opinions about the material and the world around you.
After months of tireless work, move to a 26-letter “laminate” which is basically a laminated 8.5x11 sheet of paper with the alphabet on it where you going with your fingers at the letters.
After months of tirelsss work, move to the aforementioned held keyboard, with the output captured on an iPad (see our interview with Jenny).
After many many month of tireless work (this step was actually the hardest), rest the keyboard in a “cradle” (see above picture) and let Jamie spell independently.
And, finally, after many more months, switch to two hands typing on a flat keyboard, a process we are still working on and practicing every day (thank you, typing.com).
Those 7 steps represent approximately 3 years of Jamie’s life, and he’s known as one of the faster spellers to develop his skills. The simple truth is that the kid has worked his butt off, and we are far from done. His goal is to be able to sit in a college classroom and type on a laptop just like every other student. I’m betting on him.
ASHA’s own statements make them look like…denialists
ASHA published a shorter primer about their 2018 statement, trying to help people understand what they were saying. I’m very thankful, because it highlights their superficial and incomplete thinking. Here’s the first statement I want you to read:
“With RPM [and S2C], you can’t tell whether the words being spelled out belong to the autistic child—or to their aide. The aide holding the alphabet board may move the board unintentionally in the direction of the letter that they think the child should select next. This is called facilitator bias, a documented phenomenon in which a helper unintentionally influences the message produced. Aides might well have good intentions, but in using RPM, they may unknowingly insert their own assumptions and thoughts into the message. A simple way to reduce facilitator bias is for the aide to place the alphabet board on a table or mount instead of holding it in the air.”
So…wait a minute? If the board is held, it’s a magic trick, but if the board is mounted, it’s actually the kid doing the spelling? Here’s a another picture of Jamie, from last month:
Notice anything about the picture? That’s right, it’s a mounted keyboard he’s spelling on! So…according to ASHA…this is appropriate…but the only way Jamie got to this point was by having people hold the board first until he was ready…are you getting my drift here? ASHA, it’s called skill progression! Like, you know how someone runs along beside you when you’re learning to ride a bike and then at the right moment they let go?
ASHA then doubles down on apparently not understanding how children progress from held letterboards to mounted keyboards with this statement:
“RPM creates dependence on another person, thus preventing independent communication. The primary goal of speech-language intervention is independent communication, which is a basic human right. Independence is critical: It ensures that the words, thoughts, and feelings an individual expresses are indeed their own and not the words of another person.”
I watch Jamie communicate independently every day. He expresses preferences, shares emotions, resolves conflicts and problems and, importantly, shares things with other communication partners that they never would have known. When he has an acute need, he picks up the letterboard and hands it to me so he can tell me what’s up. I’m watching him learn, slowly, to type with both hands on a flat keyboard. From day one our singular goal has been clear: independent communication. The way we got here required help. The way we got here required a held letterboard and then a held keyboard. Then we mounted it. Now he’s using a laptop.
ASHA, through their denialism, has cut this progression for so many children off—they’ve kneecapped the roughly 50 million nonspeakers around the world!
ASHA, how do they ever get to independent communication if you are forbidding your 200,000 therapists from helping them ride with training wheels first?
(Super important note: many nonspeakers don’t progress to a mounted communication device. This may be due to their motor challenges, personal circumstances, or preferences. I’m in no way saying their words aren’t ALSO valid, I’m simply making the point that the powers that be at ASHA deem MOUNTED communication to be valid and independent. When I ask Jamie if the words created during the time he used a held letterboard were his, he tells me they very much were.)
What about the most famous letterboarder in the world?
Most people have heard of the New York Times bestseller, The Reason I Jump, written by then 13-year old Naoki Higashida from Japan. I suppose few people realize that Mr. Higashida (he’s now a 29 year old man) began with a held letterboard just like today’s nonspeakers using S2C or RPM. In fact, in the movie version of The Reason I Jump, the founder of S2C, Elizabeth Vosseller (a former SLP) is on screen holding a 26-letter stencil board and working with Ben, a nonspeaker who uses a pencil to poke out his words. (I’m surprised ASHA didn't protest outside the screening of the movie at Sundance, where it won the audience award in 2020.)
In 2014, soon after the English version release of The Reason I Jump, a child psychiatrist and a child neuropsychologist published a commentary in The Journal of Developmental & Behavioral Pediatrics questioning the validity of the book. Their arguments mirrored ASHA’s statements, and their criticism was withering:
The process by which Naoki communicates is strikingly reminiscent of “facilitated communication,” a process in which a “facilitator” helps the autistic individual with more or less direct physical support to type messages that he or she is unable to speak. In many cases, the gap between the sophistication of the typed messages and the much more limited cognitive level of the individual as ascertained through multiple other means, immediately calls into question the affected individual as the actual source.
Oddly, the authors are forced to reconcile a puzzling aspect of Mr. Higashida’s current form of communication: the fact that he has progressed from someone helping him move his hands to spell (when he was younger) to a person typing independently on a keyboard (today as an adult). Their explanation for his seemingly indpendent communication is, in my opinion, the Achilles’ heel of all these denialists, see for yourself:
Naoki calls his current writing system “facilitated finger writing” (in the translation of his 2009 talk at Tokyo University) and then describes how he gradually reduced the amount of physical support he needed from handover-hand to support on the elbow, shoulder, then back, and finally independent typing. In a video of his communication from around the time The Reason I Jump was written, Naoki is seen sitting with his mother. Although we cannot say that he is always in physical contact with his mother, in this video, she appears to have a hand on his back, shoulder, or leg most of the time. It is possible that he is receiving physical cues from her about what to type or that he is typing independently, perhaps typing previously memorized text and that her physical prompts are to keep him engaged in this activity.
I was curious to see what the authors were talking about, and video of Mr. Higashida is readily available online, so just take a look for yourself at this video of him typing very independently with his mother sitting next to him. It seems that denialists hit a rational wall trying to explain what’s going on when nonspeakers are doing the very thing they claim would prove it’s them doing the typing: they create another, even less rational explanation. I this case, Mr. Higashida must have memorized all this typing in advance with his nefarious mother pulling all the strings because…it couldn't possibly be him doing the typing!
The heart of the issue: Ableism and entrenched thinking
There is a tidal wave of nonspeakers learning to spell to communicate. With each passing day, more of them are moving to MOUNTED communication devices, demonstrating the very thing that people like ASHA claimed would validate independent communication. For example, during filming for the documentary SPELLERS, my son Jamie has two cameras on him while fielding unknown questions from the film’s director. He answers these questions on a mounted keyboard. At times, Dawnmarie is sitting next to him. At times, it’s me, and either way Jamie spells away, his answers totally unpredictable. In a few short months, the world will see this footage for themselves. What will ASHA say then? My guess is that they will contrive some new explanation, much as the “experts” above did to refute Mr. Higashida.
The root issue here is obvious: both ASHA and other therapists who work with children with autism (most notably ABA therapists) believe our children are cognitively disabled. Their entire way of working with our kids is based on this presumption. Ever seen an ABA session? It looks more similar to dog training than learning. I get it. I used to think this way. I thought my own son’s speech (of which he has very little) represented his cognitive abilities. None of his highly trained autism specialists ever disabused me of this perspective…until Jamie met Elizabeth Vosseller in late 2019.
Speaking of Elizabeth Vosseller, she’s a member of ASHA, a former SLP herself, and she didn't stand idly by in 2018 when ASHA made their statement. Her rebuttal is a work of art, 20x better written than this blog, and it really should be read in its entirety, I’m just going to quote one of its many perfect parts here:
Why is there a persistent belief that nonspeaking individuals cannot possibly have the language skills to communicate? Testing. All tests of language, academics, cognition, and intelligence require a motor response such as speech, pointing, gesturing, touching or manipulating objects. If motor differences are at the core of autism, those with motor planning and control issues significant enough to affect speech will not be able to respond reliably to standardized testing. When an assessment is used that takes advantage of autistics’ strengths (e.g., pattern-matching) and involved making responses that were familiar and well-practiced (e.g., fitting pieces into puzzles), Courchesne et al. (2015) showed that many minimally speaking or nonspeaking school-aged children’s intelligence was vastly underestimated. In fact, a systematic evaluation of data by Edelson (2006) concluded that when appropriate measures of intelligence are used to account for the interference of autism, a significantly lower rate of intellectual impairment was found relative to rates commonly reported in the literature. Despite this finding, the practice of assuming significant intellectual impairment in nonspeaking individuals continues. During an IEP meeting after the team reported his poor performance on triennial testing, my client Ben spelled, “With all due respect, your tests measure my motor skills not my cognitive skills.”
Although my 24 years of clinical experience and reading of the literature makes me confident that my nonspeaking autistic clients experience significant–almost unimaginable–motor challenges, what if I (and many others) are wrong? That is a possibility. But what if the motor perspective is right? If we ignore the implications of motor in autism and assume a lack of interest, motivation, ability, intelligence or desire to learn, how might we fail our nonspeaking clients? This conundrum is called the least dangerous assumption (Jorgensen, 2005). On the one hand, we can accept low standardized test scores as resolute fact, interpret out of control bodies as intentional behavior, and view limited speech as the extent of cognition. On the other, we can believe that testing does not account for all skills, that speech is not an indicator of intelligence, that motor differences can make regulation difficult, and that autistics–just like non-autistics– learn best when valued and will excel when challenged and supported. Both approaches are not without danger if we later learn our assumptions were incorrect. If we put our faith in the results of standardized tests and years later learn that those tests were not an appropriate way to measure a client’s potential or ability, we will have failed to provide them with an appropriate education. If we provide an individual with age-appropriate instruction and later learn that we have overestimated their capabilities, we will also have erred. But to my mind, the latter option represents the least dangerous assumption: I will risk teaching too much and choose to believe that my clients are indeed capable every time.
Over the coming months, I hope to report that SPELLERS will be shown at film festivals all over the country (please join our mailing list on our website to be apprised of showing dates), and I hope the ASHA statement will take center stage and promote the debate it desperately needs. So many nonspeakers are at the mercy of ASHA’s short-sighted, stifling views. Late in the movie, the director asks some nonspeakers what they think of ASHA’s statement…I know you’ll love their answers.
Author’s notes:
The 50 million nonspeakers figure is derived by taking the world’s population (7.97 billion), multiplying by 2% (conservative population-wide ASD rate, it’s almost 3% here in the US), and then again by 40% (percentage of ASD who are nonspeaekrs). Doing that math yields a number of more than 63 million, rounded down for conservatism to 50 million. (7.97 billion x .02 x .4=63 million)
A group of nonspeakers also provided excellent rebuttals to the ASHA statement, read them here.
Dr Rashid Buttar stated after detoxing/healing his autistic son, and the Dr also went on
to heal many more autistic children, "these autistic children are brilliant beyond anything i have seen before".
I believe the evil forces are upon us, and through the decades are destroying our babies with evil toxic va$$ines, which the masses believed we needed for our survival.
The Great Awakening is happening and parents now know the evil.
Thank you are not words big enough for the revelation you have shown with your son Jamison.
Powerful and healing!!
My love and best wishes to Jamison and millions of children like him.
By the way, ASHA means “Hope” in Hindi language. Sadly, ASHA does not live up to the organisation’s name.