Category Archives: 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!

Film Review: The Reason I Jump

The Reason I Jump, the book, has inspired The Reason I Jump, the documentary. The words of Naoki Higashida provide a kind of narration as the film follows the stories of five autistic young adults around the world, in the UK, Sierra Leona, India and the United States. The film is artistically rendered. It portrays the highly focused sensory experience of autistic people through close camera shots, examining water droplets and movements. It shows the autistic individuals and their families in life, and the overwhelmed emotions of autistic people in their effort to cope with sensory bombardment and frustration. The parents are wonderful. Only one of the autistic individuals is able to speak but his speech is not indicative of his ideas, in my opinion. He gets words out, but I suspect much more is trapped within. The young artist from India expresses herself through her art, but she has not been given a means to communicate through words. Still, she is conquering life through painting her ideas and feelings. The hardest life is in Sierra Leone. There, poverty and old superstitions make having a disability terrible for a family. One brave family started a school for autistic children and the happiness on the faces of the students was lovely to see. Their journey is long, but now they don’t need to be hidden by their families anymore.

 

The two Americans are able to communicate on letter boards. They learned this skill after years of silence, but they are now able to share their ideas with teachers and family, and they have a lot of feelings. I believe the others depicted in the film would benefit from communicating too. While the sensory system of people with autism is heightened, their need to be seen and heard as a person with ideas is equally high.

 

I had the opportunity to preview this film, soon to be released. People curious about autism should see it. It assumes competence, looks beyond odd behavior to see human beings struggling to deal with challenges and to cope with their messed up neurology. I was pleased with its honest but respectful portrayal. I send my good wishes to all who appeared in the film and hope this is the beginning of many changes for the silent warriors in this world.

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.

Important New Autism Research Study on Eye Movement and Communication

Recent cool research studies around the world have been looking into eye movement tracking of autistic people as they point to letters to spell or as they read, to see if this gives a clearer indication of their level of understanding and expression of their own ideas. Last week, a significant study done by researchers from the University of Virginia tracking the eye movements of 9 autistic typers was published in Nature Magazine, a respected scientific journal. I suggest you take a look at it. I hope this study prompts many more. The researchers tracked the participant’s fixation on letters that were then used to spell words  to indicate the intentionality and the reliability of the communication.

 

The fact is that the communicative ability of people with autism has to be looked at in creative ways like this because our nervous systems have a tendency to betray us, especially in hostile testing environments with testers who prefer to prove stupidity over intelligence. In autism our bodies easily make us look stupid, but that’s the lazy place for a tester to stop. Stephen Hawking didn’t move like a physics genius. In fact, he didn’t move at all, but because not talking is not the same as not thinking, his mind was lively, and given the means to communicate, he proved himself over and over. I’m grateful to Dr. Jaswal for his research as a first step into a much needed understanding of autism. More research, including longitudinal observation, interviews, happiness measurements (pre and post communication), and motor assessments, will create a fuller picture.

 

Autism is a motor disability. Talking is motor, looking is motor, pointing is motor. These skills develop gradually and differently for a person with autism. One possible research idea is to see if eye tracking improves in an autistic individual from the first lesson in pointing to communicate over time as their typing skills improve. I am strongly convinced tests would demonstrate progress. Many autistic children have trouble focusing their eyes, they may take in too much or hyper focus on one small item, and learning to look at and scan an array of letters to communicate improves that skill in a purposeful and meaningful way.

 

I am pleased to see people begin to research in ways that try to find intelligence. There is so much wrong with the angry pseudo-science of those who refuse to even consider the possibility that they might be wrong. It wouldn’t matter if it were merely an academic debate, but real lives are impacted, and that is not merely an academic exercise.

 

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.

History Repeats Itself

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 o
ne 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)

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.

Silent Advocates

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.