Life Health & Wellbeing

Friday 19 April 2019

Autism turned inside out: The teens changing the narrative

Do we really understand severe autism? Not according to journalist Adrienne Murphy, who's seen old assumptions exploded by her 15-year-old non-verbal son and his trailblazing peers as they break through their silence to communicate

Breakthrough: Caoimh Connolly (15) and his mother Adrienne Murphy at their home in Rialto, Dublin. Picture by Colin O’Riordan
Breakthrough: Caoimh Connolly (15) and his mother Adrienne Murphy at their home in Rialto, Dublin. Picture by Colin O’Riordan

Adrienne Murphy

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

1. The sun rotates around the earth.

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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.or.

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