Category Archives: nonspeaking autism

Assume Competence

The current debate in autism education is between those who assume competence, have expectations of intelligence, and as a result, frequently discover minds that think behind the autistic mask. The other school of thought is reflected in this statement by ASHA. That is, to assume competence is abusive somehow. I know what presuming incompetence does. It deadens hope and kills expectation. It makes seeing the ability impossible.

No one is claiming everyone is brilliant, just that fewer nonspeakers than the experts believe, are dumb. I prefer to believe that nonspeakers may have intellectual skills not immediately evident for a variety of reasons. See here for some reasons.

Look for intelligence and you discover more. Look for disability and you get stuck in limitations.

Please enjoy this Ted Talk on finding competence by Vaish Sarathy.

Podcast from Down Under on Autism

From Australia, this seven part podcast and labor of love by journalist parents Travis Saunders and Fiona Churchman. It discusses autism in its many permutations and throughout the lifespan. You can find my interview in Episode Seven. I am grateful for the increasing interest in understanding nonspeaking autism and to those, like Fiona and Travis, who interview nonspeakers to get to the truth.
Enjoy

Communication is a Human Right

I write because it’s my mission. I still have to deal with my own autistic struggles. But I know my words are heard and I feel blessed to learn how they have helped to liberate my autistic peers from silence, given hope to families and changed the minds of professionals. I value whenever someone takes the time to share because I know that stories can be painful or slow to communicate.

This article is from Ireland, written by mother, Adrienne Murphy and her son, Caoimh (pronounced Keev). I share the whole story below and the link to the paper. Together mother and son are on a journey to help others in Ireland. I feel deeply honored to know that my books helped them on their way. Caoimh writes about “stone people” and “right people,” to represent those trapped in Autismland and those representing normalcy. On the side of Autismland there is a familiar resignation to stims. To step into normalcy requires a huge effort. One must be motivated. The experts have a bad tendency to diminish motivation and Autismland has a tendency to seduce with magic distractions. So every escape to communication is a victory, even as it is a struggle. Thank you to Adrienne and Caoimh for fighting on and for sharing my message in Dublin, Ireland.

Autism Turned Inside Out
Independent.ie

by Adrienne Murphy

What do the statements below have in common, and which is the odd-one-out?

1. The sun rotates around the earth.

2. Deaf people have low intelligence.

3. Autism is an emotional disorder caused by cold mothers.

4. Severe non-speaking autism involves an inability to understand language; and an intellectual disability, ie, a low IQ.

Answer: All four statements – once accepted as fact – have been proven to be incorrect. Statement 4 is the odd-one-out, because it’s still widely believed. But we know it’s false, because more and more non-speaking autistic people are acquiring age-appropriate communication – for the first time in history – through learning to point at letters.

What these historically misunderstood people say about their condition is overthrowing the prevailing dogma, which equates non-speaking with a failure to understand. (‘Non-speaking’ here includes minimal, non-reliable and nonsensical speech.)

The most famous severely autistic non-speaking person is Japan’s Naoki Higashida, who communicated his memoir when he was 13 by pointing at an alphabet board. His book was translated and published in 2013 by KA Yoshida and her husband, the author David Mitchell, as the bestselling The Reason I Jump: One Boy’s Voice from the Silence of Autism.

A film version, due out next year, will add momentum to the Copernican revolution required in our understanding of severe autism, if we are to get to the truth of this perplexing, complex, neurological condition, which expresses itself differently in every individual who has it.

Also leading the charge in this new, from-the-inside-out understanding of severe autism, is 22-year-old non-speaking American, Ido Kedar. Kedar’s memoir Ido in Autismland: Climbing Out of Autism’s Silent Prison, written between the age of 13 and 15; and his work of fiction from last year, In Two Worlds, the first novel ever published by a severely autistic non-speaking person – are revolutionary.

*****

Severe autism is an extreme disability. People with Asperger’s Syndrome and ‘high-functioning’ autism have far greater potential to live independent lives than severely autistic people, who are an entirely different subset on the spectrum.

Alongside having restricted, or non-existent, communication through speech, severely autistic people often need help performing the simplest of practical life skills. Their tendency to erratic, impulsive and uncontrollable body movements and behaviours, and their extreme sensory sensitivity and concomitant stress reactions to their environment, necessitate 24-hour supervision. (There is no question of a severely autistic adult being capable of taking a bus and safely heading off on their own into town for the day.)

The prevailing theory is that severe autism entails not only intellectual disability (major cognitive impairment and low IQs), but also a language processing disorder. In other words, the widespread view is that severely autistic people can’t understand what’s said to them, let alone read. Entire professions – including psychiatry, psychology, speech and language therapy, and special education – base their interventions on this theory of severe autism.

Caoimh, my non-speaking 15-year-old son, is amongst the first Irish pioneers to dig their way out from the buried world of severe autism, into full communication through the use of a letter-pointing finger.

Caoimh is so severely disabled in terms of his care needs, that by the time he turned 14 – when adolescent anxiety tipped him into dangerous self-injury and violence – I had no other choice, as a single parent with another son called Fiach, but to battle publicly with the HSE until they provided residential care for Caoimh.

Caoimh has settled greatly over the last year with the help of the many therapists and social care staff who work with him. The process of moving into care was made infinitely easier by the fact that he, before leaving home, had learned to communicate by pointing at letters.

On admission into his residential service, Caoimh underwent yet another psychological assessment (he has had many down the years). Currently, more and more professional question marks are being raised over the accuracy of the tools used to measure IQ in severe autism, with large numbers of psychologists now conceding that we are probably drastically underestimating intelligence. Caoimh’s new psychologist agreed to let him use his letter board to spell out answers to her questions.

In doing this, she presumed cognitive competence instead of intellectual disability, and used a testing tool that is normally reserved for people who can answer questions through speech.

Caoimh is not able yet to hold his letter board himself. It must be held for him, at a particular angle. Since he can’t cross his midline with his right hand, and since he has difficulty raising his hand high, his board must be held quite low, and over to his right; if it is put directly in front of him, or too high up, he is incapable of accessing the letters on the left or at the top of the board.

Despite Caoimh’s need for a person, trained in his letter-pointing method, to hold his letter board for him, the psychologist was easily able to see that it was definitively Caoimh answering the increasingly difficult questions that she put to him, not his assistant.

The upshot is that it is now professionally verified that Caoimh can communicate at a highly intelligent, self-aware level. Caoimh’s therapists and social care staff communicate with Caoimh in this way. He fills out his own questionnaires, and describes the nature of his multiple disabilities. The guess work has largely been taken out of his case. At school, Caoimh is now also typing, to show his comprehension of honours-level Junior Cert subjects.

*****

Until Caoimh acquired letter-pointing skills at age 12, his communication was limited to expressing basic needs and wants through the use of pictures. He was ‘locked in’. No one knew Caoimh’s true intelligence; he had no way of showing it; and he was kept at remedial level education.

In the 18 months previous to Caoimh achieving, at last, a way to communicate all of his thoughts, I taught him, almost daily, to incrementally develop control over his hand and arm movements, until he had mastered the ability to accurately point to letters on a large metal stencil. I didn’t have to teach Caoimh how to spell: he already had advanced literacy and vocabulary, which was all self-taught, since no one had deemed him sufficiently intellectually equipped to be taught to read.

In deciding to talk to Caoimh, when he was 10, as though he had the understanding of a non-disabled 10-year-old; and in committing to help him learn the movement control necessary to point at letters, I was going against what professionals had been telling me for years about Caoimh’s type of autism – that it was ‘low-functioning’, and that Caoimh would always have the comprehension of a young toddler. The process of teaching my son to letter point involved me looking beyond the judgments about his observable behaviour, and turning the theories I’d been steeped in, inside out.

It involved me acting on my hunches about the intelligence that I’d been catching glimmers of for years in Caoimh – beneath his frantic pacing and vocal droning, his bizarre repetitive movements, his glazed-over eyes, his tantrumming and bolting, his incapacity to consistently follow instructions, to write, brush his teeth, fasten zips and buttons. I got Caoimh on the letter board using the Rapid Prompting Method (RPM) by developer Soma Mukhopadhyay.

*****

Tito Mukhopadhyay – Soma’s 30-year-old son – was one of the first severely autistic speech-disabled people to have his high intelligence and spelling-to-communicate ability definitively proven. The name of Tito’s book, How Can I Talk if My Lips Don’t Move? conveys the trap imposed on the severely autistic by the erroneous theory of intellectual disability/language processing disorder.

That old theory – imposed from the outside by non-autistic professionals, via their interpretations of severely autistic behaviours – is on the tipping point of being ousted by descriptions of severe autism from the severely autistic.

Pointing at letter boards and typing, these trailblazers proclaim that the professionals have got it catastrophically wrong. They insist that average to high intelligence in severe autism is the norm, not the exception; and that the professional misunderstanding of severe autism is having tragic and tortuous consequences. It is consigning millions of individuals to the lifelong, isolating, ‘locked-in’ state of having no means to show their real intelligence.

*****

As more and more severely autistic non-speaking people acquire communication, their sensory and neurological differences to ‘neurotypical’ people are becoming clear. For example, synaesthesia seems to be far more prevalent in the severely autistic than the neurotypical population. In this state, the senses merge, allowing highly sensitive autistic individuals to ‘smell’ words, ‘taste’ emotions, and even see what the rest of us can’t – such as the patterns created by the vibrations of music.

This tendency, combined with the habit of linguistic compression – shaped by how slow and painstaking letter pointing is for Caoimh – results in enigmatic writing, such as this: “Stone people intuit mist easier than right people. Visions are dancing amongst us. Mist permeates even minds that are really closed.”

By ‘stone people’, Caoimh means severely autistic people like himself. By ‘right people’, he means neurotypicals. He’s describing the sensory wonders of the place that Kedar calls Autismland: the world that the severely autistic person must struggle to get at least one foot out of, in order to be able to participate in our world, and so learn to navigate two worlds.

Kedar calls the withholding of communication “a crime against humanity”. Let’s hope we heed the clarion call of these previously trapped trailblazers; and do our utmost to liberate severely autistic people into real communication.
In their own words…

“I’m awestruck by Ido Kedar’s books. Hope presents its bright face on every page. Hope sometimes leaves stone [severely autistic] children, making us despairing. How amazing to find an autistic, chinwagging, non-speaking author!

“Stone children rot because meaning rots. Meaning, not sorrow, calms autistic people. Ido’s writing has the power to make real the stone mechanisms that govern us. Ido murmurs mostly about worn-out theories that hold us in prison; in dark nets, in always hoping for our escape. In too many ‘nots’ we fight to have acknowledgement of our intelligence. Hope has movement, to ease repeating answers to my roaring knowledge.

“My hope dapples wondrously. Ido cares about his fellow worried autistic prisoners. That is why I admire him so much.”

Caoimh Connolly, age 15.

“It is a weird illness and symptoms are easily read as poor receptive language but it is poor body control, I am sure.

“We think. We understand. We know. We have to sit and flap and make gibberish and then we are seen as retarded. Maybe there are some retarded autistic people but not as many as you think. We fail intelligence tests because we are suffering from an output disorder. We are in there, but so blocked, and only a few of us have been shown the way out.”

Ido Kedar, from Ido in Autismland

World Autism Awareness Day is on Tuesday

For more information on the campaign by families to help disabled people communicate, see Unitedforcommunicationchoice.org.

Scientists Try to Find Ways to Demonstrate that Nonspeakers with Autism Understand

This podcast is attempting to explain alternative means of testing the intelligence of nonspeaking autistic people. (It is the companion piece to the article I shared from The Atlantic Magazine in my last post). These tests rely on evidence in the brain to show understanding when a person cannot communicate. I’m all for showing intelligence because it’s important to show.
I think teaching communication is helpful too. I mean, I really can show my intelligence if I communicate.
That is going to be my goal each and every time I hear or read something like this, because intelligence remains trapped if a person cannot type their thoughts or express their ideas somehow.

Incidentally, my mom and I were interviewed for this podcast.

Exploring Why Standard IQ Tests Fail People with Nonspeaking Autism

This article, from The Atlantic and also Spectrum Magazine, attempts to demonstrate that nonspeaking people with autism may have more intellectual capacity than standardized testing reveals. Thanks to researchers like Yoram Bonneh, (mentioned in the article) maybe more scientists will see that intellectual capacity.
My mother and I were interviewed for this story, in addition to a podcast that hasn’t been broadcast yet.
The fundamental concept is that not talking does not mean not understanding, despite a bizarre obsession by experts to conflate the two. The challenge for experts is imagination. But let me help.

I’m administering an IQ test to you, but your hands are in baseball mitts, your mouth is taped shut and the room distracts with a laser light show.

Good luck, and if you don’t do well I’ll assume your IQ is 52.

An Anecdotal Survey

ABA is the first treatment recommended by pediatricians when a baby is diagnosed with autism. It is often paid for by insurance, school districts and other sources.
It covers lots of hours.
It gives parents a break.
Who benefits from all this effort? And how much does it actually help?
I have observed that it is big business, to the tune of billions of dollars a year.
I have seen young practitioners open agencies of their own with only a few years of experience.
The demand is high.

So I want to do an informal, anecdotal survey. My personal experience tells me that ABA has been a source of suffering for a lot of nonspeakers- though perhaps others with different symptoms may be helped by the flashcards, the baby talk, and the “touch your nose,” BS. But for me, I get PTSD flashbacks just hearing the phrases, “High Five!” or “Good Job!” Thankfully, no one gives me a so-called neutral no anymore.

I know so many people now, and there are more all the time, who had years of DTT and ABA –to great expense and parental commitment– who once they reach the age of no return are just written off into “dummy-land.” In other words, too “low,” too “severe,” to be “cured.” Because, after all, “recovery” is the promised land and the parents of the kid that fails to recover during that “window of opportunity,” is then told that the kid just isn’t sufficiently cognitively with it. Sorry for the inconvenience. It only took a decade to figure out.

But lots of these kids type now and they have a different POV. They are highly cognitively with it. But motor “without it.”

So, I’m curious, what was your, or possibly your kid’s, experience with ABA?
How much did it help?
Did it drive you nuts, like it did me, or did you not mind it?
Please specify if the person who received the ABA is speaking or nonspeaking. I’d like to compare the difference in service satisfaction.

I’d love to hear your stories.

The 3 P’s of Communication Skeptics

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.