Civil Rights for Nonspeakers

The traditional term for not speaking is ‘dumb.’ That says it all. If someone can’t talk then they are ‘dumb.’ I am dumb, apparently.

The thesaurus offers these synonyms for dumb: among them mute, speechless, silent, and then fifty additional synonyms for stupidity, including the colorful pinheaded and dim-witted. The bias equating intelligence with speech stacks the deck against those with limited speaking ability.

People who are unable to speak are among the most maligned of all people. Treated as stupid. Under-educated. Far too often mistreated with no recourse.

No one has ever spoken up for the civil rights of the non speaking in a systemic, legal way. Until now.

Communication First is the only civil rights organization that advocates for the legal rights and the human rights of non speakers or those with unintelligible speech.

Please check out this brand new formidable organization as it makes its debut as a 501(c)3 organization.

I am proud to serve on its Board of Directors.

We will be loud in silence.

The Autism Experience Challenge

You work with autistic people.
You have an autistic relative.
You are adventurous and into new experiences.

If you fall into any of these groups, my Autism Experience Challenge is for you.
Of course, I specifically invite the participation of the experts of ASHA and other organizations that have so strongly made statements about the inner experiences of nonspeakers, yet have never experienced the state of being nonspeaking themselves. Certainly, to claim to have an understanding into nonspeakers, it helps to walk in their shoes- even if just briefly, to avoid the appearance of presumptuousness.

If you are brave, let’s give it a go.

Step 1

Mark out a period of time- anywhere from 3 hours for a shortened version to 3 days for the fuller experience. You will not be allowed to speak verbally during this time, no matter how much you want to.
You must designate this time to take place when you will be around people. There is no benefit to this exercise if you will be alone the whole time. Your friends and relatives should know what you are doing prior to the exercise so they aren’t worried and can do their part in the challenge.

To be authentically true to the autistic experience I need to deny you alternative means of communication. You cannot gesture, point, write, type or show ideas on your face. To have an authentic experience, people will have to guess your needs and wants. Maybe their guesses will be wrong.
You cannot correct them. You must live with the results of their guesses.

To experience this kind of frustration and loneliness is important. You must eat with people and be physically together with people but you cannot join in their conversation at all.
You are near others, and may lean on them or hug them, but you are not part of the social interaction.

Step 2

Some of you may be ready to quit right here, but for those ready to forge on, let’s make it a bit harder.
You can start this any time by prearrangement.
Ask your friends or relatives to discuss you, your behavior and difficulties, in front of you, as if you don’t understand. They can say whatever they want, whether true or outlandishly wrong, and you can’t correct them. You must stay silent. No gestures or facial responses are permitted to show your feelings.

You should take note of how you feel.

Step 3

Every time you feel upset, maybe, for example, after hearing people discuss your behavior, or you feel excited, or perhaps bored, you must flap your hands, stomp your feet or jump up and down. These responses should begin after approximately five or more hours of just experiencing living in silence.
Tell your friends or relatives to respond each time you flap, stomp or jump with any of the following types of phrases:
All done
Hands down
Hands quiet
or
Quiet hands
No jump
Feet quiet.

Step 4

After a minimum of 6 hours, your friends or relatives should begin, at a prearranged time, to talk to you in ABA English. That is, no more normal speech aimed directly to you.
They may speak normally near you when talking to each other in lively and interesting conversations and you may listen but not participate in any way in those conversations. They may speak about you in normal speech.
But if someone speaks directly to you it must now be in simplified speech and command oriented.
Wash hands
Go car
All done
Turn off

Etc.

No articles or grammar for you! This must continue until the challenge ends.

Step 5 (for the very daring, only)

I can’t induce sensory highs but I can help you simulate overloaded or intoxicated senses. Prior to the challenge, you can make a recording of intermittent noises, such as a leaf blower, a siren, a baby crying, and listen to these through headphones while you walk through a crowded mall or market. The sounds pop up randomly and unexpectedly. Several may occur in succession, or you may have none for many minutes. They can be quite loud. They may be very brief or last for several minutes.

Remember, you still can’t talk, gesture, communicate your ideas, discomfort or feelings. You can cover your ears, flap your hands or jump in public.
I grant you temporary permission.
You will be aware of the stares.

When you get home, stare at a lava lamp or another interesting undulating visual pattern for about ten minutes. Allow yourself to get intoxicated by it.
You may remove the headphones while you do that.

Step 6

Point to letters, very slowly, on a letterboard, keyboard or tablet to communicate your thoughts to someone for your final half hour of the Challenge.

Step 7

Go back to normal and think about your experiences.

In this Autism Experience Challenge I do assume that like me, and so many others with nonspeaking autism, you understand words and that the trap is your motor system.

How long could you tolerate it? Did you have to stop early? What were the hardest aspects? What new insights did you gain?

Step 8

Now for your final challenge:

Imagine your whole life like this.
Imagine never being given a means to communicate.
Imagine experts speaking out, denying your rights and invalidating your potential.
Imagine being talked to like a child.
Imagine breaking through this and then hearing experts say that what you communicate are actually someone else’s thoughts.

I invite my readers to try my Autism Experience Challenge. Let me know how it goes.

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.

Brain Alive in a Vegetative State?

How much do we assume because of appearances?
A stroke patient may not be speaking. Is the mind empty?
An autistic person may not be speaking and does odd things. Is the mind empty?
A person with locked-in syndrome can’t move. Is the mind empty?

Who gets to decide if a person who is locked internally is thinking or not? Is it the geniuses at ASHA or the Lovaas Institute or in the university or clinics? How can a trapped mind communicate intelligence if the presumption is that the intelligence is compromised?

And what about the “brain dead” in vegetative states? Now new evidence indicates that 1 in 10 have consciousness. It’s my opinion that the brain is vast and its thoughts unknowable by mere external observation.
Not talking is not the same as not thinking.

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.

Breaking Barriers at UCB

This moving radio story is one too familiar to me. Hari Srinivasan is a kind of fellow traveller in two worlds. I congratulate him for his huge accomplishments. I have known the reporter Lee Romney my entire life and I guess you can tell she gets it. She actually edited both my books so by now she understands the challenges of nonspeaking autistic people remarkably well and it shows. The difference between Hari’s current life and his former training in ABA is stark. It is incredible how offensive I found it listening to the jolly infantile voices its practitioners used in the brief segment that described ABA in the program. Ugh. But it is important to show that popular treatment that so misses the mark in order to compare it to the great success of Hari once he found another way.

Please be sure to listen and not just read!

I’m Feeling Snarky

I might be autistic, but they understand the disability better.

I have to give credit to those experts in the noble field of autism treatment who bravely stand up for the rights of nonspeaking autistic people to be limited to a few unintelligible words and pictogram systems. It is the obligation of all honorable professionals to fight for the right of trapped people to have their communication limited so expertly. Moreover, by never letting observation of a typing nonspeaking, autistic person interfere with certainty, they demonstrate real commitment to best practice, in the most scientific way possible. In conclusion, I’d like to congratulate those experts in autism for sticking to their beliefs no matter how unhappy a kid is being flashcarded and high-fived year after year. A little misery shouldn’t alter treatment that’s scientific and evidence-based.

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.

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