Ido in Autismland is now available in Polish!
You can also find it in Spanish, Japanese, Hebrew, Russian, and of course, English.
Ido in Autismland is now available in Polish!
You can also find it in Spanish, Japanese, Hebrew, Russian, and of course, English.
I recently received a present, a musical surprise. It was a CD called All Without Words: variations inspired by Loren performed by the John Daversa Jazz Orchestra and composed by Justin Morell. The compositions were inspired by Justin’s nonspeaking autistic young son, Loren, who likes to sing his own music that comes from his own Autismland. I too make a kind of music though I surely can’t sing conventionally. It is a kind of inner music and I entertain myself in my “songs” too.
All Without Words is a jazz compilation that takes Loren’s melodies and orchestrates them and expresses them through trumpet solos. The melodies are lovely and the musicianship is excellent. Loren’s musical noises transcribed to instruments play like a poem, not made to be silent or silenced. I hope one day he finds his way to communicate in words too.
I thank Loren for inspiring this lovely surprise. May he continue to inspire his father’s musical journey.
I have been giving lots of interviews recently. Here are two I did together with my mom. For those wondering, I received my questions in advance because my typing, while reasonably fast for one finger, is extremely slow for radio. It would be tedious to listen to me slowly type out my answers.
The hosts graciously accommodated my disability and I typed up my answers and saved them in my iPad. Still, the interviewer heard my answers for the program the first time during our conversation. I Hope you enjoy these interviews and share them with people you think they might help.
This intriguing article from The Aspergian got me thinking. The author, Carol Millman, (whose biography at the end of the article says she has a diagnosis of autism and is a dog trainer), took a hard look at ABA and compared it unfavorably to dog training. It is well worth a read.
She writes that good dog training takes into account the needs of the dog. After all, an active dog needs exercise, not to learn to sit quietly with no stimulation all the time, because that’s not good for the dog, nor is it in the dog’s nature. It can learn to be a good dog, just not a different sort of dog than it is. For example, no one would think to try to convert a lapdog, like a bichon frise, into a retriever dog that swims for ducks, or into a sheepherder tending to an entire flock. The nature of these breeds is hard-wired. So the high-energy dog can’t be trained to become a low energy dog. It can learn to sit, stay and behave itself, but it can’t learn to be a couch potato dog. Exercise it. It will be a better dog.
Millman argues that ABA is not taking into account the nature and needs of autistic people. She likens it to conversion therapy, and tellingly, ABA founder, Ivar Lovaas was an early practitioner of that disputed treatment, claiming, as he did with early ABA research, that many of the recipients of his treatment appeared to be indistinguishable from their typical peers. But this doesn’t factor in emotional wellbeing or inner needs. Saying “hands down!” over and over doesn’t stop an autistic person’s neurological need to move his hands. ”Scientific” ABA thinks commands are treatment enough and the root causes of behavior are irrelevant.
Hands down! Quiet hands! Mouth quiet! All done!
Blah and blah and High Five! Good job! And that, plus data collection, is “science.” Perhaps if they can explain why ABA fails to help so many people with so-called “severe” symptoms it would be worth a read in a scientific journal. As it is, they just have to say that the person’s autism is “too severe” to be helped.
Millman argues that ABA is indifferent to the nature of autistic people, that it is so programmed to shape autistic people into normal appearing facsimiles, it misses the humanity of the person. The wiggling, high energy, motorically restless kid can’t just be trained to stop wiggling, to stop jumping or flapping. The need to move is in his neurology. But he can move more purposefully, exercise more, learn to have more self-control and learn to communicate his ideas.
Millman’s essay largely focuses on the robotic ABA training of someone who can communicate verbally. I argue that for the autistic nonspeaker, ABA is so much worse in so many ways.
Imagine that the entire purpose of your “gold standard” training is to make you appear normal, but your body won’t let you show what you know. Your artificially cheerful, baby talking instructors treat you like a thick-witted infant and drive you nuts with repetitive, remedial drills and flashcards, well below your actual cognitive level, all the while misinterpreting the real essence of your disability, and mistaking a motor issue for an intellectual one. I have seen this result in some pitiful situations, and I say “J’accuse” to people who won’t consider that they may be wrong, even sometimes, occasionally, or possibly in certain cases.
My novel, In Two Worlds, has a lot to say about this.
My dogs learned a lot of rules, but they still act like dogs. I never imagined training them to act like cats. I never imagined converting my terrier to a Doberman guard dog or my shepherd to a little Chihuahua.
Autistic people can learn to communicate, to exercise, to be educated and to reduce their stims, but they can’t learn to become a non-autistic person. I am in favor of learning skills and information.
I reject the dog training of people.
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
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.
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.
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.
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.