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The Anniversary of “In Two Worlds”

It is the anniversary of the publication of my greatest achievement, my novel, In Two Worlds. Why do I say my greatest achievement? After all, my first book, Ido in Autismland, is better known. The answer covers many things.

I know many typers with autism who have written books. They are all nonfiction memoirs or essays, as is Ido in Autismland. To my knowledge, In Two Worlds is the first, and only, novel of fiction, narrative and dialogue ever written by a nonspeaking autistic person about the autistic experience.

It is for this reason that I brag a bit. I understand autism. I understand my inner world and I understand the inner experience of In Two Worlds’ wonderful hero, Anthony. You, the reader, experience autism through his eyes. You experience the visual sensory kaleidoscope that overwhelms him time and again. You experience his anguish at being motor trapped in his body unable to show anyone he understands.

That is, anyone except you, the reader, because you hear his thoughts. Only Anthony and the reader are privy to his mind. Everyone else in his life misses his interior because his exterior is so compromised.

In Two Worlds, a BookLife Prize quarterfinalist in fiction, has been compared by readers to important past works of fiction that shed light on other mistreated or misunderstood peoples, and whose plight once depicted in these novels inspired societal change for the better.

And who is more misunderstood by others than a person who can’t speak or communicate thoughts? Who is more misunderstood than a person who cannot show he is intelligent and is physically controlled by motor compulsions that appear nonsensical?

The first part of the novel is devoted to Anthony’s life before he can communicate. He is frustrated, lonely, and underestimated by everybody, family and professionals, and bored of baby talk and baby lessons. He lives his life waiting, hoping, stimming, and finally he gives up because year after year nothing changes for him. Until one day he finally meets his liberator, Marina, who teaches him at 16 how to type to communicate and from this his entire life changes.

The world of autism, as anyone familiar with my blog knows, is filled with powerful opinionated educators, specialists and dolts. They do not take challenges to their theories lightly. Anthony is liberated by being able to communicate, but many new struggles are just beginning for him as he now must fight for his right to an education and to be recognized as a sentient being. It is not an easy journey.

I invite you to read In Two Worlds if you haven’t already. I invite you to review In Two Worlds and would be grateful if you did. It is a book for everyone. Not just for those of us inundated by Autismland. I did not write the book for us. I wrote it for the world to understand us. I wrote it for book clubs, libraries, and teenagers, to give to friends, to open eyes, to open minds, and to open hearts.

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.

My Presentation at the UN World Autism Day on AAC and Communication Rights

Proud to have presented this video at the UN World Autism Day today.

Typers were well represented at the conference.
To view the whole conference,follow this link.

Enjoy

Musical Neurological Mysteries

I have been listening a lot to Beethoven recently. My passion for different composers goes through phases. I have had a Bach phase, a Gershwin phase, a Prokofiev phase. I love their distinct styles and utter genius and originality. Each one was a profoundly transformative composer who also created incredibly poignant and beautiful music. Because I have synesthesia, I hear and see my music. To be honest, some music is visually beautiful and some is harsh and hideous to me. Beethoven has music that is like a visual poem. His melodies are like flowing waves of lights when they come together perfectly.

Neurologists might want to ponder the mystery of Beethoven a bit. For a huge portion of his composing career he was either losing his hearing or was totally deaf. How did his brain do the things it did missing a sense- the essential sense it required? I have been learning a bit about art history recently too. Can you imagine a genius like Van Gogh painting blind, remembering how to paint somehow? My mind cannot comprehend how Beethoven wrote his music, orchestrated it, created mood, emotion and phrasing- and all without hearing it. Even an experienced chef likes to taste their food.

The human brain is a mystery. Beethoven wrote some of the most sublime music ever written and he did it as a non-hearing person. Generally that would end a musical career, but he had inner music. He remembered sounds from when he heard. Did he hear them in his head the way we do? Who knows? But we do know he was able to tap into this ability somehow.

I tend to turn subjects back to autism. We don’t understand the brain well. By any logic, a deaf man should not be considered one of the world’s greatest composers. But he is. So once again I caution experts to have a little humility and not presume to think they have a clue about how a nonspeaking autistic person perceives and understands. The brain has so many unknowns, and people who by logic shouldn’t have an ability may have it, and sometimes at a profound level. I shouldn’t be processing human speech, according to some. I shouldn’t be writing my thoughts. I shouldn’t even have thoughts. Well, I say, go listen to Beethoven’s Ninth Symphony and imagine writing it deaf and try to be a little humble about the brain’s unknown capacities.

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.

A Little Taste of ‘In Two Worlds’

In_Two_Worlds_Cover

Here’s a little taste of my new book, In Two Worlds, in which you meet the protagonist, Anthony, and his family. This is Chapter 1, ‘Beach Day.’

If you enjoy this sample, please check out my book on Amazon, available in paperback and kindle, and as an ebook at Smashwords.

 

Chapter 1: Beach Day

 

Anthony enjoyed going to the ocean. He loved the cold water on his hot body. He loved the hot sand tickling his bare feet. He loved the sensory pleasures of the ocean breeze on his skin, the whitecaps breaking and the seabirds running after the waves. He enjoyed finding seaweed that washed ashore and stomping on the air bubbles. Seaweed was enticing. It twirled and trailed after Anthony in fascinating patterns. Putting it all together, the ocean was a huge rush, thrilling every sense, even taste.

“Anthony, take the seaweed out of your mouth!” his mother yelled. The three boys were playing in the sand. Mark had prepared a long path meant to funnel the tide. Little Gary played with his toys, attempting to build a tower of sand. And Anthony, who had resisted all attempts to get him to make his own tunnel or tower, was sitting nearby running sand through his fingers and loving the feel. He stared, mesmerized at the sight of the sand tumbling in falling columns to the sand on his feet. He had to taste it. The urge was overwhelming. Oh no, not again. Anthony’s father jumped up.

“No, no!” He brought a towel and wiped Anthony’s tongue. The people lying closest to Anthony’s family were staring. “Give him some water,” his dad yelled to Anthony’s mother. “I can’t get it all.” Then he stared sternly at his son. “No eat sand, Anthony,” he said in clipped broken English. “No, bad. Bad.”

Part of Anthony wanted to eat more sand just because he hated baby talk so much. Compulsions were hard to take. They were like a body ordering a mind. It wasn’t as if Anthony enjoyed a mouth full of sand. It was gritty and tasted salty and he felt a bit like gagging. He saw his brothers pretending they weren’t with him. He saw his father’s shame. If Anthony could have explained, he would have told his parents that he had to obey the compulsion. It didn’t matter that the sand was gross in his mouth or that he looked like a strange oddball to the strangers who were staring with such curiosity. His body ordered him to eat sand, so he ate sand.

His impulsive acts were like a lizard hanging out on a rock and without thought ambushing the cricket that wandered by. Like the lizard, Anthony lived with impulsive actions governed by his primitive brain, but unlike the lizard, they often were not functional. A lizard eats his cricket to survive. Anthony’s impulses, like pulling petals off flowers or eating strangers’ leftover scraps he found on the tables in the mall food court or putting sand or seaweed in his mouth, seemed idiotic, harmful, or just plain weird. But he had no means to resist these compulsions.

“It isn’t good, Anthony,” his father said. He took Anthony by the hand to play in the waves. Gary took his father’s other hand. The moist sand vanished under Anthony’s feet. Anthony bounced up and down on his toes and waved his arms in the air, excited. The three of them jumped over the approaching waves over and over. Finally, Anthony tumbled forward and brought his hand deep into the soft, muddy sand. There was no stopping himself. He put a handful of it into his mouth. “I can’t take this any longer,” Anthony’s father muttered. He brought Anthony and Gary back to the towel. “He did it again,” he told Anthony’s mother.

“I saw,” she said. “Maybe we should go home.”

“No, no, no!” cried Gary. “It’s not fair!” He was right. The family obeyed Anthony and his impulses too often. “I want to stay longer, please.”

“He has autism,” Anthony’s father yelled to the staring strangers. They turned their heads, embarrassed at being noticed. “Fine, let’s go play ball,” he called to Gary and Mark, “and maybe,” he suggested to Anthony and his mom, “you two can stay here on the towel.” Anthony’s mom gave him a snack. She poured sand on his legs and dug holes in the sand with him. He started to calm down inside. His mom sang to him and he snuggled next to her. Then she took Anthony by the hand and they went for a stroll by the shore. He felt the velvety sand under his feet squish between his toes with every step. He felt salty and damp. He was happy. When they came back to the towel, after a long walk, Gary’s tower stood, pail-shaped, made by inverting damp sand into a multi-tiered edifice.

Anthony had to obey. He stepped on it.

 

 

 

Announcing the Launch of my New Book, “In Two Worlds”

I am thrilled to announce the  launch of my new book, a novel called In Two Worlds. It is  currently available on Amazon in paperback form and will be available in Kindle and Smashwords very soon!

In Two Worlds release 071718

Proposed Position Papers by ASHA (American Speech Language and Hearing Association) Demean my Communication

The experts at ASHA, the American Speech Language and Hearing Association, have evidently become concerned that more and more autistic  people have broken through the communication barrier using methods other than theirs. Their response has been to put together a position paper condemning these other methods. It’s a bit ironic. In my own case, speech therapy didn’t accomplish much despite years  of expert instruction. Too often, the failed autistic speaker is blamed for the failure to speak because he is labeled as being too low functioning, too lazy, or too dumb to advance. And the speech therapist is off the hook for failing to made headway in communication with the non-speaking student since he’s written off as being low functioning, lazy, or dumb. It’s a great system, to be sure.

So certain methods that try to teach another way to communication are derided as a hoax. Hoaxes  certainly exist in autistic treatments. One must be vigilant because unknown neurological factors are at play and people can make treatment claims based on nothing more than the hopes of parents. But hopeful parents can  also spend 10 years  (or more) on well-established methods that give little result more than a few embedded phrases and some unclearly articulated words to show for it. When the end result of ten years of speech therapy is someone who speaks like I do, then from their point-of-view,  it seems a logical extension to determine that the method that gave me the ability to express myself fluently through letters is invalid. Of course, if  I had been left with my speech alone to communicate, I’d still be locked in and completely trapped. They reject my communication because they were not successful teaching me- or others like me- to communicate expressively.

So, no thanks. I’ll take a “hoax” that worked over a treatment that failed me any day.

The ASHA position is still in draft form. You can rebut or respond until June 24. Here is a link.  And here are some sample quotes that show their line of thinking. Note that the communication of typers, (and this is regardless of the degree of autonomy), is discredited.

“For both FC and RPM, there is no credible evidence that messages are authored by the person with a disability, and there is no credible evidence indicating authentic independent communication or any other beneficial outcome arising from FC or RPM (Lang et al., 2014; Tostanoski et al., 2014; Schlosser et al., 2014).”

“(ii) In RPM, there is no empirical evidence to show that facilitated messages are authored by the individual with a disability.”

“Both FC and RPM rely on presumptions of competency (Travers & Ayres, 2015). Presumption of competency is a risk to an individual’s safety when it is given more credence in treatment decisions than known facts about the individual or evidence to the contrary.”

“In the absence of evidence that messages delivered by RPM are authored by the person with a disability, RPM poses a potential risk of harm to the person using RPM and their family members. This is because, RPM being untested, there is a risk that the messages delivered via RPM are not authored by the individual but are instead authored by the “facilitator.” Other professional associations have warned members against using RPM (Irish Association of Speech & Language Therapists, 2017; Speech Pathology Australia, 2012; Speech-Language and Audiology Canada, 2018).”

My Mother and I Were Interviewed on Canadian Radio

Out in the Open

with Piya Chattopadhyay

Sunday March 04, 2018

‘Communication is a basic human right’: How this man with nonverbal autism found his voice

Ido Kedar uses his iPad to communicate.

Ido Kedar uses his iPad to communicate. (Courtesy Ido Kedar and Tracy Kedar)

Note: The following article is from the CBC webpage.

Here is the broadcast: Listen 12:21

 

Ido Kedar is a 21-year-old man with autism, who cannot speak (also known as nonverbal autism). He was told from a very young age that he would never be able to communicate independently.

But when he was 7 years old his mother, Tracy Kedar, says Ido communicated with her for the first time in a way she knew for sure that he understood her.

They were making invitations for Ido’s birthday party. He did not have the motor skills to hold a pencil on his own, and she was resting her hand over his. As they wrote, it seemed to her that he had a flash of recognition.

“I was kind of talking out loud and I said ‘Oh shoot, I forgot this word’ and under my hand I feel his hand spelling it out. And I hadn’t said any of the letters,” Tracy says.

“The system was gamed against me. If I showed intelligence, my mucked up motor system took over.” –  Ido Kedar

People assumed that Ido didn’t know how to read or spell, but by prompting different words, it was clear that he knew more than they had thought.

“I put away the invitations and … I remember asking him ‘Why didn’t you show me before?’ and under my hand I feel him writing ‘I didn’t know how to,'” Tracy says.

She was delighted, but that feeling was accompanied by the realization that he didn’t just have the capacity to communicate and understand in that moment. He had for years prior.

“(I was) overjoyed and very guilty,” she says. “There was a lot of regret for not having discovered it sooner.”

Catching up on lost time

Ido talked to us using his iPad, typing out words one letter at a time. It takes him about three seconds to type each letter. Due to the amount of time involved, we sent him questions in advance.

Ido says that he was just as shocked when his mother discovered that he could communicate.

“I had no hope that my intelligence would be discovered. The system was gamed against me. If I showed intelligence, my mucked up motor system took over,” he says.

Ido Kedar on the hill

Learning that he could communicate prompted complicated emotions from both mother and son. (Courtesy Tracy Kedar and Ido Kedar)

Experts often treated his attempts to show intelligence as an accident, he says, which made it harder for him to believe that he could prove it. So once his mother did understand, Ido shared her joy, but had another, more complicated reaction.

“Honestly I was mad too. I had a lot of resentment inside because of my frustrating experiences being a smart kid trapped in a dumb body,” he says.

Tracy says that some people remain skeptical about his ability to act independently. Even professionals who worked closely with Ido didn’t believe it. However, she says she can live with the need to convince some people that he’s intelligent because their reality prior to her discovery was worse.

“I could deal with them thinking I was a delusional mom in denial. That was far less difficult than believing my son was not ever going to progress,” she says.

Learning to type

As for Ido, being able to communicate opened a whole new world to him.

“My mom and dad found me a teacher who taught me to type independently. Then it became really hard for the experts to refute. But it took time to get to this level of proficiency,” he describes.

Ido Kedar mountain

Once Tracy Kedar new her son was able to communicate, the next challenge became proving it to others. (Courtesy Tracy Kedar and Ido Kedar)

He learned at first using a cardboard alphabet chart, moving on to a keyboard and then eventually an iPad.

“Communicating has enabled me to break free, to not be as trapped by my disability, to help others and to correct scientific understanding of non-speaking autism.” he says. “Communication is a basic human right.”

Both mother and son now work to help people who are nonverbal make the same progress that Ido had.

In 2012, he released a book about his experiences called Ido in Autismland: Climbing Out of Autism’s Silent Prison. He has a second book, this one fiction, coming out soon. 

This story appears in the Out in the Open episode “Divides”.

Typing to Communicate: Tips for Parents Interested in RPM— Just Give it a Go! (Part1)

 

I’m honored to share this informative and personal essay by a brave and generous mother, Susan Finnes. The determination of some mothers to get communication for their autistic children, even when local communication instructors are not available, amazes me. In some cases, people may have easy access to Soma, or other skilled people who teach typing to communicate, like my mom started to do. These teachers can transform lives.

But, what happens to people without access to these teachers, who live far from the opportunity, or who simply cannot afford to pay for lessons? Thankfully, in addition to books, there is now an online forum for parents and YouTube training videos that the author of this essay, Sue Finnes, put together. I think this labor of love that that Sue and her son, Chris, have undertaken is brave and incredible. They are willing to show their mistakes and their successes to hundreds of unknown people. I admire Chris for being willing to let people judge—and Sue, the same.

I am incredibly grateful as an autism advocate that they have created these educational and support networks to help people with autism and their families.

Because it is long, this essay will appear in two parts. In Part 1, Sue shares her journey with Chris into independent letter pointing. In Part 2, which I will post tomorrow, she shares practical tips for those interested in pursuing this with their own children or students.

Thank you again to Sue and Chris.

Ido

 

Questions I had when I first heard about RPM in 2009 :

What exactly is RPM? How can I learn RPM? Will it work for my child?

I scoured the internet looking for answers, looking for examples and could not find a lot of information. I had seen a short video of Soma (Soma Mukhopadhyay, who developed RPM) a couple of years previously and had formed the opinion that RPM was not for me. I saw her talking quickly, maybe even doing a poem with a child who did not look at all interested. Why on earth would I want to do this with my severely autistic non-verbal child – surely it was more important to focus on speech and how to dress himself?

Christopher was aged 10. His speech had not developed, we had made some progress with getting dressed and we worked mostly on social/interactive play skills. His communication was limited to the use of gestures to show what he wanted (eg. pointed to his bottom for toilet) and to taking us by the hand to lead us to what he wanted. I had done some basic word picture matching using flash cards. I was desperate for Chris to have a communication method – something more than a PECS system (where you have pictures of objects) and something others would be able to understand – so not sign language. I looked again at RPM – I saw a video this time of Soma teaching a child to point using written paper choices and realised that this was something we could possibly work on. I experimented – using a well-read Teletubbies book – asking what did the Teletubbies spill ?– tubby custard or water? I ‘m ashamed to say now that I was surprised when Chris chose the correct answers – you will see me smiling on this clip from Oct 2009 https://youtu.be/ajDvQEUBgqE . I thought I’d always believed and accepted him , but now we were moving onto something with huge potential ! Here is another short clip November 2009 – you will see that I quickly moved on from Teletubby books to the history of Bonfire night https://youtu.be/BIBn67V608Y . Please note that my techniques here were not very good !

From that moment on I exposed Chris to more age appropriate topics and began to talk to him more about everything –and started WRITING EVERYTHING DOWN assuming that he understood. We worked on getting him to point to the written choices. We took his interests /motivations and expanded them – bringing him interesting information eg singing twinkle twinkle lead to talking about the solar system. I did not think that Chris would cope with a long flight to the USA to see Soma , but found out about the Barrett family in the UK whose daughter Heathar had achieved success with Facilitated Communication, so I enlisted their help and early in 2010 we began to learn how to support Chris to type. I remember them telling me that I had to believe that Chris had been like a sponge taking everything in all these years – but with no means of showing us. It took MANY MONTHS of daily practise before we were able to get anything from him, which made sense, but when we did, it showed me how intelligent he was. I and Chris’s other helpers practised with him every single day and we were eventually giving light elbow support while he typed.

Fast forward to 2011 – I heard that Soma was in the UK and managed to get some sessions. I didn’t fully understand RPM – i thought i’d just take the good bits and adapt it. This was another WOW moment for me – the types of lessons Soma presented were way more advanced than we had been doing . Even though I saw Chris pointing independently with the stencils with Soma , I decided that I wanted to stick with FC for longer answers and would do written choices for other questions. Again we stepped up to the challenge – I started to work my way through a Biology student workbook, another helper did Physics, another Maths and Poetry. We made good progress -I realised that Chris was capable of learning , and was finding it interesting and stimulating. We were able to see Soma again in 2012 – this time I and Chris’s team were fully prepared ! We all studied Soma’s red book beforehand and we analysed in detail what she was doing in her sessions .

The penny dropped ! This method of teaching was not just about presenting information and checking student understanding –the stimulating information was the tool which enabled you to engage the child while working towards the skill of INDEPENDENT pointing/typing . It also enabled you to stimulate thinking and reasoning skills and taught the student how to express his thoughts and opinions. From that moment on we changed from supporting Chris to type , to teaching him the skill of independent pointing – beginning with the stencils.

Chris had at least 3 RPM sessions every day with different tutors. Initially there was lots of prompting – verbal ( eg. ‘up up, , lift your elbows’ ) , directive (eg ‘touch here’) and air prompts ((waving your fingers over the stencil in the direction of the letter). If Chris was struggling to get a letter we also had to motor model the movement with him – showing him hand over hand ‘this is how you touch the B ‘ (doing it twice hand over hand then immediately asking him to do it himself) ‘now you touch it’. I set up records on my PC – and after every session the tutor would record their notes from the session. We found that the process of writing up notes also helped us to analyse our own sessions – looking to see how much talking we were doing and how many responses we were asking for. Many sessions were filmed and I also set up skypes with Soma to get feedback. Up until 2016 Chris was having a minimum of two RPM sessions a day ,5 days a week . He is currently using the laminated letterboard and we are working on independence by beginning to get him to hold the board himself for a few letters/short words . Here is a short clip to illustrate.. https://youtu.be/vGL5Xb5o2lA

We have incorporated lots of purposeful movement into his programme – physical exercises, dancing, picking up and passing objects etc. I feel that we would have made more progress but have had setbacks with Chris’s health – he developed epilepsy and has frequent seizures which take time to recover from. As he is transitioning to adulthood Chris now also attends a skills centre two days a week and works on motor skills, living skills and independence skills. He is also learning to use the letterboard in different environments and with different people.

 

See you tomorrow for Part 2!