Communication Rights Toolkit Launched

Posted on March 27, 2020 | 2 comments

Like many of you, I have been home on quarantine. I am fortunate to have good weather and lots of opportunity to walk outside. I realize these isolating circumstances have been tough for many who haven’t lived a lifetime not talking. Lots of people are connecting via the internet. It’s pretty remarkable to see my dad chatting with relatives in multiple countries in international conversations and every one of them is stuck in their home.
These are strange days but my hope is we will be nearing the end soon, life will return to normal soon and that we will be healthy and better prepared internationally should another pandemic emerge.
As many of you know, I am involved with Communication First as a member of the board of directors and they have developed a toolkit for people with communication disabilities in response to the current situation. This is important to provide people who rely on alternative modes of communication to have the same rights of informed consent as any other patient.
Please share these links with those it may benefit, and please stay healthy.

2 Comments

Posted in apraxia, assistive technology, augmentative communication, Communication First, communication with a person with autism, coronavirus, medical

Meet Ido Kedar

Posted on March 11, 2020 | 3 comments

I wanted to share this article I wrote. Hope you enjoy it.

Meet Ido Kedar, Author of In Two Worlds: The Heart and Mind of an Autistic Boy

3 Comments

Posted in augmentative communication, autism, non-verbal autism, nonspeaking autism, presumption of competence

No Dog Training for Humans

Posted on January 24, 2020 | 10 comments


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.

Not scientific.

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.

10 Comments

Posted in ABA, dog training, dogs, Ivar Lovaas, Uncategorized

Positive Trends in Awareness and Advocacy

Posted on January 9, 2020 | 2 comments

I notice the media is suddenly writing about typers. See here in USA Today and here in the Chicago Tribune. I am pleased to see the attention, but curious too, though the trend is definitely interesting. More and more autistic people are communicating daily. The status quo is slowly moving in the right direction.

I know we are a long way from a new way of educating people with autism. ABA is still the default “gold standard” but despite this, somehow our silent voices are starting to be heard.

In terms of advocacy, some people are starting organizations. One family has started a new organization called Point to Freedom. They want to be loud and proud about their son’s success in learning to type to communicate and with his journey, to hopefully inspire other families to realize that typing to communicate may be possible for them too. I am proud of the son’s accomplishments expressing his lovely and powerful thoughts and also proud of my mom who taught him to communicate. May he go far with this freedom.

Finally, as I have written about previously, the civil rights of nonspeaking and limited speaking people is at last being addressed by the important new civil rights organization, Communication First.

Though there remains much to do, change is afoot. I believe the trend is toward liberation. In time the truth will prevail.

2 Comments

Posted in autism, Communication First, letter board, non-verbal autism, nonspeaking autism, Point to Freedom, typers, typing

History Repeats Itself

Posted on December 3, 2019 | 6 comments

In the olden days, Deaf Education tried to make the deaf look hearing. Deaf children had to learn lip reading and speech. The use of sign language was prohibited in schools. In those days many deaf people were born hearing so they knew what speech sounded like and what it felt like to talk before they were deafened by illness. Those children did pretty well speaking and lip reading as a result, and phenomenally better when compared to born deaf people who had never had the sound of speech to guide them. The schools touted their successful speakers as proof of their methods, and the so-called failures, un-touted, had to be stuck without sign language, the ability to speak clearly or the ability to read silent lips.

There is an obvious parallel to autism now. The successes of ABA have typically been children like the character, Peter, in my novel, In Two Worlds. For those unfamiliar with the story, the novel’s protagonist, Anthony has nonspeaking autism and is considered by professionals to be “low-functioning.” Peter, a boy his same age, is talking verbally and is considered to be “high-functioning.” But they are actually lumped as identical in terms of diagnosis. Moreover, they receive identical therapies. Peter is successful because of the methods, they say. Anthony is a failure because his autism is too severe, they also say.

Though the born hearing child and the born deaf child were both not able to hear, their situations simply were not the same. One had a distinct advantage with the educational methods provided because of those years having heard and having produced speech. So too, Peter is not the same as Anthony. His motor system performs more reliably. He is able to show many more skills. Their differing responses to the discrete trials does not take into account how different their symptoms are nor how one child may thrive with a treatment that fails another.

Anthony is bright but is severely trapped behind an uncooperative motor system that makes him appear foolish. He might get drills and flashcards to his dying day but it won’t give him the ability to show his intelligence. To do that he must be able to communicate in an accessible modality, by pointing to letters, and not by speech. When the deaf community insisted that they needed sign language in order to live fully and to not miss out on real communication, educational change happened. The deaf finally got a say in how deaf people were educated. I believe change in autism education and treatment will finally come when limited and nonspeaking autistic people demand a say in their education and mode of communication too.

Below is an excerpt from In Two Worlds from the chapter in which you meet Peter.

From Chapter 11: Peter, Autistic Superstar

Peter was the same age as Anthony. He had the same diagnosis. He also worked with Natasha, Nina, Charlotte and Alyssa in the ABA program, and Anthony and Peter also shared the same speech therapist. In fact, Peter was her star pupil. Their lives were practically parallel, but in every professional comparison with Peter, Anthony came out looking bad. Peter learned his drills faster. He learned to follow instructions quickly. He spoke with clear articulation and he looked fairly normal. He occasionally had temper tantrums, but otherwise Peter was the dream student.
To Anthony, Peter seemed to be the luckiest autistic guy in the universe. On the journey they shared, Peter was nearing the finish line and Anthony was barely out of the gates. The ABA data showed Peter learning new words rapidly, so rapidly he was doing the most advanced drills out there. Dr. Hagerty loved to remind people that he helped make some autistic kids lose their diagnosis. They may have been born impaired, but hard work, dogged perseverance and a little luck made a boy like Peter succeed. A case like Peter was the reason Dr. Hagerty had his reputation. He had many such cases, proof of the efficacy of his methods. Peter was an autism success story.
A stubborn case like Anthony confounded Hagerty, and everyone else. After years of intensive ABA, Anthony had progressed in his drills, but in no way was he looking even remotely close to normal. He had reached the point that many professionals believed to be virtually hopeless. They might help mitigate his symptoms but he would never “recover,” in the jargon of the trade. So, Anthony knew he was an autistic failure. He could not prove his intelligence, like lucky Peter. He knew that, because Nina and Natasha and everyone else also worked with Peter, they could not help but compare the boys. Anthony prayed inside to be like Peter. If only he could make his body obey him he could perform perfectly on his discrete trials too. But instead he was one of those frustrating kids who made Natasha and his team carry on with false optimism.

(I hope you enjoyed this excerpt from In Two Worlds. If you did, please consider reading the whole thing!)
(Also available as an ebook on Smashwords as well as kindle)

6 Comments

Posted in autism, autism education, autism theories, autism treatments, Deaf Education, self advocacy, Self determination

Tagged

Disney Characters No More

Posted on November 14, 2019 | 5 comments

Below is a brief memoir I wrote for Edlyn Pena’s new book of short memoirs by autistic typers called Leaders Around Me.

My story is probably similar to many in this book. I was not able to demonstrate my intelligence for many years in spite of extensive therapies of the usual sort, primarily ABA, speech and OT. I have written a great deal in my books and my blog about how awful these years were in so many ways. The issue was not kindliness or earnestness because the many therapists and behaviorists who entered my life were usually chipper and cheerful, like a bunch of Disney characters. It was part of the therapy, to be perfectly honest. They were chipper and cheery while flipping flashcards in repetitive drills that numbed my brain with boredom.

It is recommended in ABA to give 40 hours a week of this stuff. “Touch your nose!” “Touch table!” “Touch apple!” “No, try again!” “High five!” The artificial simplified speech, plus the boredom made me terribly frustrated, but that wasn’t the worst of it. The worst of it was that these drills were a waste of time, effort and emotional energy, not to mention money. I started just before my third birthday and finished when my team refused to believe I could understand and communicate at the age of seven. That is a lot of “Touch your nose!” commands.

The problem was that my earnest educators taught me like I was kind of a thick toddler who didn’t understand words. They were totally wrong in every respect. My disability is not a receptive language problem nor a cognition problem, which all my instruction was designed to fix in tiny increments. Rather, my understanding was excellent and my intelligence I hope is above average. I know you have read this on page after page already. It’s not cognitive. It’s motor. I couldn’t show my intelligence because I was internally trapped by a motor system that had trouble getting messages from my brain. To be drilled endlessly like I described was psychologically harmful, especially during the circus of supervision when I performed my drills like a trained dog.

The big day came when I was seven when my mom learned to trust her own observations and ignore the ABA geniuses who figured “Touch your nose!” was good enough for me. I have written much about how she realized I could communicate in my first book, Ido in Autismland. But let’s just say that her determination and decision to fight on, though the experts thought she was nuts, changed my destiny. My father changed it further by insisting my skills had to be independent. And somehow we found Soma Mukhopadhyay, mom of Tito and inventor of RPM.

To make it clear, the process of learning to motor plan for communication is hard work and requires skilled instruction. Only fools and ideologues believe otherwise. Gradually I learned to type my thoughts independently on a letter board, keyboard or tablet. This means I express my own thoughts and move my own arm without being touched. It does not mean I need to be alone. The presence of a good communication partner helps us to organize our motor systems. It is pretty obvious to those who understand motor system challenges but utterly baffling to experts who deny motor issues and persist in telling people with autism that they don’t understand words.

By middle school I was a full time general education student. I was still autistic but I heard normal lectures and I did the same schoolwork as everyone else, earning excellent grades. I had my aide to go with me and with her help I accessed the general education world. In this way I graduated high school with honors, the first, but not the last, autistic student in my middle and high school to do so. I felt like I was an ambassador showing what is the potential of nonspeaking autistic people.

But I suppose my true impact is in advocacy. I have written two books on autism, contributed to others, blogged, delivered speeches and been featured in the media. My goal is to spread the truth. I wrote Ido in Autismland in middle school and high school. I had to correct the misconceptions about autism, to explain the symptoms, to speak out. And the book has surpassed my dreams. It is used in university classes, sells throughout the world, has inspired others to communicate and has been translated into several other languages.

I recently published my second book, a novel called In Two Worlds. It is a work of fiction based on true life and I hope will reach an audience beyond the autism world. It tells the story of Anthony, a boy with autism who can’t talk or show his intelligence. The reader is invited to experience his two worlds, his inner thoughts and sensory experiences, and his outer world of therapies and frustrating misunderstandings. But it is more than that. Anthony learns to communicate at 16 but his professionals don’t welcome the change with open arms, to put it mildly. The book invites the reader to get into the experience of living in Autismland.

My mission and projects are still unfolding. The future chapters of my advocacy and educational work yet to be determined. Thanks to communication, I will be the one to choose what they will be.

5 Comments

Posted in ABA, autism, autism education, Edlyn Pena PhD., Leaders Around Me- book, memoir, nonspeaking autism, nonverbal autism

For Russian Speakers

Posted on October 16, 2019 | Leave a comment

Excited to announce that Ido in Autismland is now available in Russian!

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Posted in book, Ido in Autismland, translation

Silent Advocates

Posted on October 11, 2019 | 9 comments

I am happy to let you know about two new books that rely on the writings of autistic typers to understand autism. Professor Edlyn Pena of Cal Lutheran University has edited two compilations of essays, one more scholarly and in-depth, the other using more contributors, but briefer. I have contributed my two cents to both books.
Last weekend people came to Cal Lutheran University for a conference celebrating the books’ publications and met with eight of the ten contributors to Communication Alternatives. It was a happy day seeing the changes in attitude and recognition since I started on my typing journey.
I hope this film from the conference will move you. Our messages are honest and truthful. They are also messages from autistic people themselves.

I hate to be a pain, but I felt I must juxtapose the last film with this one. This is what we are up against. Who do you trust to understand autism better?

No more talking about us without us.

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Posted in advocacy, assistive technology, augmentative communication, autism, autism perceptions, autistic authors, book, books by authors with autism, Communication, Edlyn Pena PhD., Uncategorized

Civil Rights for Nonspeakers

Posted on September 18, 2019 | 6 comments

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.

6 Comments

Posted in autism, Communication First, human rights, non-verbal autism, nonspeaking autism

The Autism Experience Challenge

Posted on August 27, 2019 | 26 comments

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.

26 Comments

Posted in autism, Autism Experience Challenge, nonspeaking autism, nonverbal autism, presumption of competence, professionals, understanding autism