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.

Communication Rights Toolkit Launched

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.

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

No Dog Training for Humans


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.

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)