Category Archives: nonspeaking autism

Autism and Occupational Therapy

I wanted to share my latest interview. called The Power of Presuming Competence. This is a podcast specifically targeting occupational therapists but should have useful insights for other professionals, parents and anyone who is interested in an insider’s point-of-view autism.

Recent Interviews

Please check out my latest interviews!

Here is a literary discussion about my two books and more on Deborah Kalb’s book blog.

Here is an interview on the podcast, Walking with Freya, in which I discuss my books and what I have been up to, and finally my interview on All Autism Talk podcast, in which I discuss my writing and autism advocacy.

And here is a link to this Sunday’s Houston Chronicle in which I, and my work, are profiled!

Two Recent Radio Interviews in which I Discuss my Journey, my Writing and Autism

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.

Here you can check out our interview on the Special Needs Family Hour and here on In the Author’s Voice.

In the Author’s Voice interview and More!

I wanted to share this radio interview interview my mom and I did on WSIU-FM, NPR with Jeff Williams for his show In the Author’s Voice.
In it, I discus autism, my books and more!
WSIU-FM Jeff Williams Interview

I also wanted to share with you this article I wrote for Between the Lines Book Blog.

Meet Ido Kedar

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

Positive Trends in Awareness and Advocacy

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.

Disney Characters No More

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.

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.

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.