New Book Update!

I’m thrilled to share that my new book, a novel called In Two Worlds, will be released in early July. I will share the formal announcement very soon. It will be available in paperback form on Amazon, in kindle and also online on Smashwords.

I hope that you will let people know about it and if you like it, I would greatly appreciate if you could write a review online, on Amazon or on Goodreads.

In gratitude,

Ido

Proposed Position Papers by ASHA (American Speech Language and Hearing Association) Demean my Communication

The experts at ASHA, the American Speech Language and Hearing Association, have evidently become concerned that more and more autistic  people have broken through the communication barrier using methods other than theirs. Their response has been to put together a position paper condemning these other methods. It’s a bit ironic. In my own case, speech therapy didn’t accomplish much despite years  of expert instruction. Too often, the failed autistic speaker is blamed for the failure to speak because he is labeled as being too low functioning, too lazy, or too dumb to advance. And the speech therapist is off the hook for failing to made headway in communication with the non-speaking student since he’s written off as being low functioning, lazy, or dumb. It’s a great system, to be sure.

So certain methods that try to teach another way to communication are derided as a hoax. Hoaxes  certainly exist in autistic treatments. One must be vigilant because unknown neurological factors are at play and people can make treatment claims based on nothing more than the hopes of parents. But hopeful parents can  also spend 10 years  (or more) on well-established methods that give little result more than a few embedded phrases and some unclearly articulated words to show for it. When the end result of ten years of speech therapy is someone who speaks like I do, then from their point-of-view,  it seems a logical extension to determine that the method that gave me the ability to express myself fluently through letters is invalid. Of course, if  I had been left with my speech alone to communicate, I’d still be locked in and completely trapped. They reject my communication because they were not successful teaching me- or others like me- to communicate expressively.

So, no thanks. I’ll take a “hoax” that worked over a treatment that failed me any day.

The ASHA position is still in draft form. You can rebut or respond until June 24. Here is a link.  And here are some sample quotes that show their line of thinking. Note that the communication of typers, (and this is regardless of the degree of autonomy), is discredited.

“For both FC and RPM, there is no credible evidence that messages are authored by the person with a disability, and there is no credible evidence indicating authentic independent communication or any other beneficial outcome arising from FC or RPM (Lang et al., 2014; Tostanoski et al., 2014; Schlosser et al., 2014).”

“(ii) In RPM, there is no empirical evidence to show that facilitated messages are authored by the individual with a disability.”

“Both FC and RPM rely on presumptions of competency (Travers & Ayres, 2015). Presumption of competency is a risk to an individual’s safety when it is given more credence in treatment decisions than known facts about the individual or evidence to the contrary.”

“In the absence of evidence that messages delivered by RPM are authored by the person with a disability, RPM poses a potential risk of harm to the person using RPM and their family members. This is because, RPM being untested, there is a risk that the messages delivered via RPM are not authored by the individual but are instead authored by the “facilitator.” Other professional associations have warned members against using RPM (Irish Association of Speech & Language Therapists, 2017; Speech Pathology Australia, 2012; Speech-Language and Audiology Canada, 2018).”

Guest Post: Running Toward Myself

This essay by my friend, Dillan, is about his love of running. For him running serves many purposes. He channels hyperkinetic impulses. He gets fit. He interacts with others. But here he describes one more thing– the mental benefit. He mentally gets liberated from autism while running. How lucky to get a respite from autism.

I encourage people to exercise. Living with autism does not mean we must not exercise. It helps in every way. But respites can be found in many things, in music, in swimming, in learning- simply in moments when joy breaks through the symptoms.

 

IMG_6300

 

 

 

 

Dillan’s Introduction:

I have experienced many challenges in my life with the autism that takes root in my actions, my thoughts, and my feelings. However, I have also been blessed with gifts, and I am going to talk about one of them today. I wrote this essay for my college applications, and it means a lot to me that you will also read these words about the times when I can leave my autism behind.

Running Toward Myself By: Dillan Barmache

It would be easy to write about autism. I always have that inspiring story in my pocket, The Boy Who Had Autism and Learned Anyway. In this moment, however, I want to talk about the moments when I can separate myself from autism, even if it is only for a short time. Those moments come when I run.

I am on the cross country team in the fall. I run track in the spring. I wake up early in the summer and run miles just because I want to. I am fast and my legs are strong. My body moves with certainty and obeys my commands. That means more to me than it does to many others because in almost every other moment of my life my body is a mess. The chasm between what I want my body to do and what it does is huge and everyone who spends more than five seconds around me can see it plainly when I run my hands through impulse patterns and babble in nonsense noises. So, when I run, those moments of control are like air to the drowning man. My body goes exactly where I want it to.

My most ambitious event was the time I ran a half-marathon with my dad. He and I trained hard. This was, after all, the longest run of my life. As we trained, my dad would strain to keep pace with me. I would wear him out with my voracity for the trail, eating up the ground beneath my feet. We trained until the day came when we had to go to downtown LA and put our feet to the pavement.

You could think that a run like this would be easy. I’ve established how I love running. I’ve talked about being good at it. However, I have so much more to consider when it comes to an event like this. I would be surrounded by strangers. I had to sleep near the event in a strange hotel room with none of my familiar comforts. My routine was crumpled up like a piece of scratch paper and tossed away. To a person like me these are major, catastrophic concerns. My parents have to constantly wonder how I will react. Will I be able to handle it? Will I break down and freak out and have to be pulled away into a quiet room where the strangers’ eyes won’t see my weirdness? I felt not just my own anxiety, but the anxiety of my parents as they tried to plan for every problem and prayed for the things they can’t control to just go smoothly.

Just before the marathon the runners gathered at the starting point. The buildings of downtown LA loomed over me. They closed in like giants and all of us gathered runners were packed in together. I did feel the energy getting wild inside me. I felt my control slipping. I felt the autism that wanted to take over and become everything my parents and I feared. Then, the signal came and it was time to run, and none of it mattered anymore. The threat was over the instant my legs started moving, because then I knew exactly what to do. Run and run and run.

I finished the half-marathon just like the waves of people around me did. I was part of them and I fit seamlessly among them. You can’t imagine how rare that is for me. I am always either the odd boy off to the side with special needs, or I’m the miraculously intelligent boy everyone is shocked can do anything but flap my hands and repeat simple words. I’m always different. I’m always other. But when I ran that day I was just a runner. I was just Dillan.

 

 

 

Not Talking is Not the Same as Not Thinking!

A Ten Year Old Advocate

My young friend, Diego Peña, has learned to become a fighter for nonspeaking children with autism. He is in general education, and has been for a while. Each one of us who accomplishes this is kind of like an icebreaker opening potential channels for other students to follow. It isn’t easy. I share a nice article about him with an interview. Contrary to the article’s implications, you can’t just hand an iPad to a motor impaired autistic kid and magically have perfect typing. It’s a process that takes instruction, time and practice, and it doesn’t happen at three, for the most part. ‘Typing,’ isn’t defined either. To clarify, it’s one finger typing. Diego’s success is good enough on its own merit that it should be applauded for what he has done, without embellishment.

So, without embellishment, Diego is a bright ten year old who has autism and doesn’t speak verbally. He has been a successful general education student in regular classes for several years, though not since he was three. He learned to communicate by touching letters painstakingly. He has the parents and the aide and the school environment he needs to thrive and to prove himself. And this he is doing every day.

My Mother and I Were Interviewed on Canadian Radio

Out in the Open

with Piya Chattopadhyay

Sunday March 04, 2018

‘Communication is a basic human right’: How this man with nonverbal autism found his voice

Ido Kedar uses his iPad to communicate.

Ido Kedar uses his iPad to communicate. (Courtesy Ido Kedar and Tracy Kedar)

Note: The following article is from the CBC webpage.

Here is the broadcast: Listen 12:21

 

Ido Kedar is a 21-year-old man with autism, who cannot speak (also known as nonverbal autism). He was told from a very young age that he would never be able to communicate independently.

But when he was 7 years old his mother, Tracy Kedar, says Ido communicated with her for the first time in a way she knew for sure that he understood her.

They were making invitations for Ido’s birthday party. He did not have the motor skills to hold a pencil on his own, and she was resting her hand over his. As they wrote, it seemed to her that he had a flash of recognition.

“I was kind of talking out loud and I said ‘Oh shoot, I forgot this word’ and under my hand I feel his hand spelling it out. And I hadn’t said any of the letters,” Tracy says.

“The system was gamed against me. If I showed intelligence, my mucked up motor system took over.” –  Ido Kedar

People assumed that Ido didn’t know how to read or spell, but by prompting different words, it was clear that he knew more than they had thought.

“I put away the invitations and … I remember asking him ‘Why didn’t you show me before?’ and under my hand I feel him writing ‘I didn’t know how to,'” Tracy says.

She was delighted, but that feeling was accompanied by the realization that he didn’t just have the capacity to communicate and understand in that moment. He had for years prior.

“(I was) overjoyed and very guilty,” she says. “There was a lot of regret for not having discovered it sooner.”

Catching up on lost time

Ido talked to us using his iPad, typing out words one letter at a time. It takes him about three seconds to type each letter. Due to the amount of time involved, we sent him questions in advance.

Ido says that he was just as shocked when his mother discovered that he could communicate.

“I had no hope that my intelligence would be discovered. The system was gamed against me. If I showed intelligence, my mucked up motor system took over,” he says.

Ido Kedar on the hill

Learning that he could communicate prompted complicated emotions from both mother and son. (Courtesy Tracy Kedar and Ido Kedar)

Experts often treated his attempts to show intelligence as an accident, he says, which made it harder for him to believe that he could prove it. So once his mother did understand, Ido shared her joy, but had another, more complicated reaction.

“Honestly I was mad too. I had a lot of resentment inside because of my frustrating experiences being a smart kid trapped in a dumb body,” he says.

Tracy says that some people remain skeptical about his ability to act independently. Even professionals who worked closely with Ido didn’t believe it. However, she says she can live with the need to convince some people that he’s intelligent because their reality prior to her discovery was worse.

“I could deal with them thinking I was a delusional mom in denial. That was far less difficult than believing my son was not ever going to progress,” she says.

Learning to type

As for Ido, being able to communicate opened a whole new world to him.

“My mom and dad found me a teacher who taught me to type independently. Then it became really hard for the experts to refute. But it took time to get to this level of proficiency,” he describes.

Ido Kedar mountain

Once Tracy Kedar new her son was able to communicate, the next challenge became proving it to others. (Courtesy Tracy Kedar and Ido Kedar)

He learned at first using a cardboard alphabet chart, moving on to a keyboard and then eventually an iPad.

“Communicating has enabled me to break free, to not be as trapped by my disability, to help others and to correct scientific understanding of non-speaking autism.” he says. “Communication is a basic human right.”

Both mother and son now work to help people who are nonverbal make the same progress that Ido had.

In 2012, he released a book about his experiences called Ido in Autismland: Climbing Out of Autism’s Silent Prison. He has a second book, this one fiction, coming out soon. 

This story appears in the Out in the Open episode “Divides”.

My New Book Update

For the past several years I have been writing a book. It has been interesting and hard work for me. I can’t write swiftly like a ten finger typist would since I can only point to letters or type with one index finger. Because of this, I have to always keep my plot outline and my scenes planned mentally  because I am able to write just a few paragraphs at one sitting.

But, my book is at last finished. It is now in the final proofreading stages and it is in the process of having the cover art designed. It should see the light of day in a few months and I will give you more information as it goes.

I will share with you that my new book is a work of fiction. It tells the story of a boy with autism named Anthony. I hope when you read his story that you will come to care about him and his family and his two worlds.

Music in Lights

Have you heard of synesthesia? It is when your sensory system mixes your sensory perceptions together. In other words, you may see things others only hear, or taste things others only see, and so on. I see music. I always have. Of course, I also hear music but I get it in 3D with my own laser light show.

My favorite music to hear and also watch in synesthesia are two pieces by George Gershwin, his wonderful Cuban Overture and his amazing, An American in Paris. Close your eyes, listen, and try to imagine this music in lights.

I complain often about the hard parts of autism, but here is a nice feature.

Art for Fine Motor Challenges

IMG_1762I have found a great way to enjoy art without having dexterity in my hands. These mosaics were pretty fun to make and were something I could do despite my clumsy hands. The design is up to you, limited only by your imagination and the number of pieces in each color.

IMG_1456(For those interested, the product is Colorado by Hearth Song). *Note: I am hearing that the product is no longer available, so perhaps it has been discontinued by Hearth Song. A friend got me mine at a garage sale, so maybe it can be found used on eBay, or possibly something similar is manufactured by another wooden toy company.

IMG_1731ido mosaic

Book Review: Plankton Dreams

I belatedly heard about Tito Rajarshi Mukhopadhyay’s newest book, Plankton Dreams: What I Learned in Special-Ed, which he wrote in 2015, so my review here is two years late. In my opinion, that’s no sin. We authors get lots of reviews in the beginning, but few later on. Since this book deserves your attention, it’s good to write about it later on too.

For those who have not heard of Tito, he is Soma’s son, the first recipient of RPM, or however she referred to teaching her son how to communicate at the time. While everyone else with autism got 1+1 and play-doh, he got physics and Socrates and a true classical education. This is home-schooling Soma style. When scientists heard about Tito and his erudition and independent skills typing in a very autistic looking exterior, they wanted to study him, test him, and so on. I first heard of him just before I learned to type. My experts said he was “one in a million,” and my ABA supervisor said he wasn’t really autistic because his typing proved he had been misdiagnosed. In other words, he has been knocking down their doors for a long time and each book pushes a bit harder.

This memoir “novella,” (it is a short book), is sad, funny and biting satire. When Soma and Tito moved to Austin, Texas from India so she could teach communication to autistic kids, Tito had to go someplace during the day while she worked. The system being what it is, this brilliant, educated young man who moved autistically, got sent to a special day low expectation autism class. He used this time to analyze, like an anthropologist or social scientist, the absurdity of his situation. He studies “scientifically,” how people react to him sniffing their heads, rummaging in their purses and spinning their chairs. All for the sake of science! He savages the system.

“I created my own learning goals…” he writes. “I analyzed the responses of people to these situations—what I call my social experiments. I became an empiricist. Why shouldn’t the autist study the neurotypical?”

Here he conducts a head sniffing experiment on his teacher, among others.“Mr. Gardener…did not want me to sniff his head. He would rather dodge my approaching nose or stand on his toes so that my nose could not do what it longed to do. Mr. Gardener was bending over his desk, providing a rather complete view of his head.” And like a scientist, he collected data. “He jumped higher than the bus attendant—I could tell. It was a perfect jump, his star like head antigravitating away from Planet Earth.”

He describes the people in his world in special-ed: the students, the teacher, the aide, the teaching assistant, the administrators, the bus driver, the do-gooders (“Mr. Goodness Gracious”), and also his own boredom in this environment. Tito conveys his surreal existence, bored and analyzing his boredom through his sensory lens of highly educated philosophy. Sometimes the book is laugh out loud funny. Sometimes it is tragic-comedy. This book is unique because Tito is fully into Autismland perspective as he writes.