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More on Scientific Un-Query

Guest post by Tracy Kedar (my mom)

When Ido was small he was in an ABA program that carefully documented all of his responses to discrete trial drills. In a huge logbook divided by the specific drill outcomes being measured, the exact number of his correct responses, incorrect responses, number of trials, and whether prompts were needed was recorded. The data clearly indicated the exact number of words Ido understood, which they measured as not being very many, with the belief that the only way he acquired new vocabulary was by being taught it in drills. The proof of mastery was the accurate pointing to the word on flashcards consistently.

When Ido began to express coherent ideas in normal English via writing, the scientifically gathered drill data made his ABA team convinced that this was simply not possible. It was inconceivable to them that Ido could understand and express grammatically correct, vocabulary rich English because their data evidence proved all he knew was far less.

Autistic kids I have met and seen communicate by iPad, keyboard, or letter board, without tactile support, still face dismissive letters whenever they appear in the media written by total strangers who are absolutely certain that the journalists were derelict in publishing a fraudulent story. The reporters are accused of not doing “due diligence” by telling the story of a nonverbal autistic kid who “miraculously, overnight” can communicate, despite the process leading to typing fluency being one of years.

Not long ago a skeptic professor in our area from the psychology department of one university spoke to an audience of university students studying ABA at another to show how unscientific and improbable it was that autistic people could communicate fluently by typing. He scoffed at RPM which he called “dangerous,” and laughed at how unscientific it was. He was alarmed at stories of kids like Ido appearing in the media.

This scholar, like so many of the writers of the skeptical letters, stated that he spoke on behalf of scientific methodology. He was firm in his belief that the data collected in discrete trial drills proved the fallacy of these severely autistic communicators, since data didn’t lie. I agree with him that the data collected in Ido’s old ABA drills were completely accurate. The recorded notes accurately indicated whether he got answers right, wrong, how many trials, and whether a prompt was needed. Where I differ from the professor is what it means. To him, the data was clear proof of Ido’s low receptive language processing, limited cognition and the impossibility of advanced comprehension. To me, the data simply reflected his ability at that time to accurately point to the card requested.

Those nonverbal autistic individuals who have learned to type are consistent in describing themselves as having a frustrating mind body disconnect. They state that while they understand what they hear, they cannot get their bodies to obey their minds with the kind of consistency and reliability that is necessary to prove it. Ido devoted several chapters of his book to describe and explain this challenging neurological experience and he describes how instruction and practice, using very particular techniques, helped him to develop  the ability to overcome these challenges enough to be able to communicate his thoughts, first by pointing to very large letters on a letter board held at eye level, and ultimately, as control improved, by typing on small ones on an iPad or keyboard on tabletop.

So yes, the drill data is accurate. The question is whether their hypothesis explaining why this occurs is correct. If the scholar and skeptics are correct and the drill data is a reflection of all the cognitive understanding that lies within a person, then of course children once thought to be low functioning who now claim to type and read and write fluently are to be viewed with alarm. Their achievements are viewed as “clever Hans” phenomena and any support they receive is seen as suspect.

On the other hand, if what the people with autism say is true, then the data is useless in those cases because all it measures is whether they could get their hand to obey their mind at any given trial and doesn’t reflect their capacity or knowledge. Consequently, the efficacy of the treatment becomes the issue.

Given these divergent possibilities, one would think that those who state they are proponents of science and scientific methodology would be lining up to meet those people with autism who have known histories as “low functioning,” complete with videos, reports, and school records, who now communicate fluently by typing, often with no tactile support at all, and who receive and thrive in general academic educations.

How is possible for anyone to determine that a person is not really communicating solely from reading a newspaper article or watching a television news short? Rather than showing the kind of scientific inquiry that is supposedly the hallmark of science, these folks seem to treasure data collection to confirm an existing theory over a willingness or curiosity to explore whether there is more that could be learned, even if it means that some of their ideas have been incorrect. That doesn’t seem scientific to me. It’s circling the wagons.

How Do We Learn if We Don’t Make the Effort ?

Let’s talk about when doctors’ ideas have been wrong. Bloodletting was once the norm. Sick people were thought to have tainted blood so they were bled into cups, making them weaker, of course, and increasing the likelihood of infection due to open wounds.

Did you know that many deaf people who couldn’t speak, or people with cerebral palsy or others with communication problems, were  deemed to be incapacitated and were sent to institutions where they were stuck  for decades.

Eggs were demonized. Now they are thought to be healthy. All fats were demonized. Now studies show that our bodies need certain fats. Red wine and dark chocolate are now heart healthy. Our beliefs regarding nutrition and diet change all the time. We learn and make necessary changes.

I have decided to become a French expert. I will learn all about “Frenchism” by watching French people.  I will make theories about their habits. I will train them to be less French. But I will never teach them English or learn French myself. Then I will claim to understand Frenchism though I never consulted a French person. The world will recognize me as the leading expert in French habits.

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Scientific Un-Query

I have only met a rare few neuro-researchers and other autism specialists, representing the scientific study of autism, who consult with me for my insights. I have noticed that though more and more of us nonverbal autistic people can type now I have not seen an increase in scientists trying to meet us. My book was sent to many neuro-scientists when it was first published, but few answered, and none met me. The puzzling thing for me is why this is.

If I were a scientist researching autism, or a specialist treating autistic kids, or running a program for autistic students, and nonverbal autistic people who  could communicate by typing began to emerge, I think I’d make an effort to meet them. I understand there are skeptics. I understand there is doubt, but I also know that ignoring things doesn’t change reality. I know that for those skeptics who attack as fake every autistic communicator who appears in the news, that it is also impossible for them to be certain of a person’s skills and abilities without seeing the person.

So many of us now type without any tactile support. Many of us are eager to collaborate and guide research ideas, but only a rare few researchers  ask.

I have three dogs and if they go to the veterinarian with symptoms the vet must guess what is wrong because the dog can’t tell him. Many times we wished the dog could elaborate so the vet wouldn’t need to guess, occasionally incorrectly. Autistic people who are nonverbal have faced guesses too because of their long-time inability to communicate. Now many can explain symptoms but the “vet” doesn’t seem to be interested in asking.

I believe our explanations for our symptoms are important in informing researchers in where to look for answers and how to better educate us.

What explains this un-query?

A Favor

It has been several years since Facebook has linked to my blog. We found out all the 3rd party companies that Facebook uses to determine which sites to blacklist (Mcafee, MicroTrend, Web of Trust, a few more..) and we have contacted them all individually about the site and every one has come back with a completely safe report regarding the site. As far as they are concerned, the site is perfectly clean. The problem is Facebook doesn’t seem to be listening.

It is ridiculous and limits my ability to share my thoughts with others.

I am asking a favor of you. each time you try to link to my blog on Facebook, you should immediately get a pop-up that says something to the effect of ‘your link was blocked because… and then a line that says ” if you think you are receiving this message in error, click here” (or something close to that). If you could click the link they will ask you why you think it’s an error. If you could say something simple like “there is no reason for this link to be blocked….” and hit submit I would greatly appreciate it. I am hoping that if they many complaints it might make them finally move on this.
Many thanks in advance.

Ido in Italiano

For those who speak Italian, here is Ido on Swiss news.

 

My Speech at Autism Society The Future is Now Conference


I am so delighted to have the opportunity to speak to you today. I appreciate the opportunity to speak to professionals and parents who are willing to listen to a non-verbal person. Often I experience the opposite, and I get to listen to the professionals trying to explain to me what I am like. Then I get to wonder how they know. The problem with this, for many non-verbal people, is that because so many cannot communicate what they think, they are unable to express when they disagree. Their thoughts remain trapped inside because the neurological connections don’t work as they should. The thoughts are there, but they can’t come out. They stay stuck behind a body that is not responding.
This may be really different from what you have learned in college, especially if you studied in certain programs that perhaps taught you that people like me have a receptive language disorder, a social skills deficiency — meaning I can’t understand human behavior– a lack of theory of mind or empathy, and perhaps even cognitive delay. After all, that’s what data and science prove, right? And that’s what everyone assumed about me when I was younger, before I could communicate.
So, these theories may not be totally accurate in my case, or maybe many are totally inaccurate in my case, and perhaps in many, many other people’s cases, but that doesn’t stop the theories.
In science, theories are supposed to change if new data emerges. When Barry Marshall tried to show that stomach ulcers were caused by a bacteria, not stress as everyone believed, he hit a brick wall of scientific opposition and was discredited as a “crazy guy saying crazy things.” Twenty years later he won the Nobel Prize in Medicine and doctors now treat ulcers with antibiotics, not antacids. But it was a hard fight for 20 years.
This is why it is really a credit to the Autism Society to give me this opportunity to be heard and to you for being open to having some of your ideas about severe autism challenged.
In the beginning, when I was seven and I first began communicating, my entire ABA team dismissed my being able to communicate sophisticated thoughts as impossible because according to their data I had not mastered all their drills.  Also, they insisted I had to communicate with everyone equally or my communication wasn’t scientifically valid. I think they hoped I would spontaneously erupt in song and dance in between my drills. My elementary school teacher thought that I didn’t know what a number was because I couldn’t coordinate my hands to pick up the number of straws she instructed. Every day for years I got a remedial education in school when inside my head I was multiplying and dividing and reading. It’s clear to me why they assumed I didn’t understand. All my mistakes were a confirmation to them of my internal delays. But there is a big neurological misunderstanding in their logical idea. Getting answers wrong doesn’t always mean you don’t understand. Sometimes it means you can’t get your body to obey your mind. When a person with Tourettes yells out an offensive word, it is not because they want to and don’t understand right from wrong. It is the opposite. The mind is pleading to stop and the body charges forward.
The key idea I want to convey is that my form of autism is like this: my brain is not slow or impaired linguistically. I do not talk, not because I do not understand. I don’t talk because I don’t gesture because I don’t have facial expressions because I can’t hold my book to read it because I can’t turn the pages because I can’t scan a shelf because I can’t pull a blanket on in my bed. Why do people assume that I can’t do these things because I don’t understand or because I am not cognitively aware of my surroundings? It is a theory that has trapped me and countless others in lessons that bore us to the point of despair, and a school education of calendar, the weather, and 1 + 1, and ABC, year after year.
I suggest that you try to imagine another cause for the deficits that isn’t based on intelligence or language processing. What do you think could cause my delays, explain my troubles controlling myself in sitting still, or controlling my emotional equilibrium? What could cause me to flap my hands when I want to be still?
If you try to imagine that you are totally paralyzed but can still think, it’s a scary thought. Imagine that the paralysis includes your ability to speak. How will anyone know that you are intact inside? It would be very hard to show. This is the story told in the film, “The Diving Bell and the Butterfly”. It is the true story of a man who had a severe stroke. He had the most severe kind of stroke which causes a paralysis called locked-in syndrome. No one knew he could think because he had no ability to show that he could think. His mind was active but everyone assumed his brain was dead. Then a perceptive nurse figured out that he was trying to communicate by blinking his eyes. He wrote an entire book by blinking as she pointed to letters on a letter board.
Now, my condition isn’t as severe as that because I can move, but I have to tell you, it is not that different. My body moves, but it doesn’t always move the way I like. It moves how it wants, or it moves part of the way I want, or, if I am lucky, it listens to me. I would describe this as a moving paralysis. It is frustrating to a high degree.
It is frustrating all by itself without the additional frustration of being thought to be receptive language impaired and low functioning and bored in toddler programs by nice, well-meaning people.
It is time to revisit our diagnosis of autism and time to change our way of helping severely autistic, non-verbal people. Now, I know what I say is different from many professional opinions which state that I am at the end of a spectrum opposite Asperger’s Syndrome —  or what was formerly known as Asperger’s  –in the DSM. But in a spectrum we are the same, different only by degree.
Temple Grandin is probably the best known person at the other side of the spectrum from me. She is an important spokesperson for autism. She has described herself as being a visual thinker. One of her books is called, “Thinking in Pictures.” She is pretty good at independent body control. She drives, rides horses, designs complicated engineering systems, and holds a pencil to write and graph neatly with no help, because her body listens to her mind. She has social problems because people and their behavior and ways of interacting confuse her. She told Oliver Sacks that she feels like “an anthropologist on Mars,” trying to understand alien, human behavior.
I wonder if you think I am the same, just really, really severe?
We do have eye contact impairment in common. But a lot of what she describes is the opposite of me. I have insight. I have theory of mind. I have empathy. I get jokes. I think in letters and spelling, not pictures. I can’t control my body’s movements, write or graph neatly, and I need constant help to do normal everyday tasks.
In the search for a cure, or to find the most effective treatments, we have to see things the right way. I mean Aids and head colds both are viruses, but no Aids researchers try to find a cure for Aids by exclusively focusing on the sniffles. They know they are different, not polar ends of a virus spectrum.
What I have in common with people with Asperger’s is a sensitive sensory system, poor eye contact and shyness.  But  people who are out of shape, and people with asthma, and people with heart disease, and some people with cancer all may experience shortness of breath but that doesn’t give them a Breathless Spectrum Disorder.
It is important that the DSM not miss the differences. I believe there may be different, discrete types of autism. I don’t claim to understand every form of autism at all, but I do claim to  understand mine and the differences between me and what people compare me to.
What I believe that severely autistic people, like me, need is instruction in communication early—teach typing or communication by pointing to letters on a letter board. Non-verbal people need special methods to do this. They cannot break through on their own. In my case, I was helped by working with Soma and RPM. This opened my world. Others may be helped by her techniques as well, or there are different methods that have also had success. The key was that she presumed I was intelligent and offered me grade level lessons right away, and I rose to the challenge. She did not wait for me to type before teaching me interesting topics.
This is important because her methods helped me to focus and break through my internal and external distractions. Her support helped keep me on track, to scan, to look at all the letters and to touch the one I wanted. And all at the fast pace of my racing mind. If we are denied the support that makes this breakthrough possible, it often fails to occur. The danger is that then people misinterpret poor performance as a reflection of cognitive capacity, rather than as a need for a different kind of support or teaching.
Another important treatment is that we need exercise to wake up our mind-body connection. So many autistic people never exercise, which is disastrous in a body that doesn’t listen to our minds. We also need access to a normal education. Smart, trapped people need support to emerge from their internal prison. Assume intelligence and look for the signs of it. I think a lot of kids would be grateful if you spoke to them normally. A lot would be grateful to get grade level lessons in school, or listen to interesting books in school, even if they cannot yet show on the outside what they think on the inside.  Together we can begin to change things for the most misunderstood form of autism.
Since I was asked to talk about the future, I want to begin by saying that I hope for the same future that any 16 year old boy would want. My hopes include college and career and a girlfriend one day. The whole thing. Am I frightened that I will never get to achieve the things I want? Very, very, very. The support I get now dries up after high school. My aide needs to be exceptional. And trained.
It takes time to develop a common rapport. Not everyone is a good match. If I get an aide who isn’t too bright—sorry, it’s blunt, but true—or isn’t intuitive, or is not flexible, it all collapses. Bad aides are the worst, because people think I am getting help because I have someone with me, but the fact is that the wrong help keeps me trapped. I need the right kind of support to succeed in high school, and I will need the same to go to college and to work in a career. If I can’t get this, what then? I will have to depend on my mom to support me. As my courses get more advanced, my aide has to be not only good at helping me control my behavior, keeping me focused, and skilled in communication, but also someone who is comfortable in higher math, or literature, or whatever subject I am taking. This is far different from a babysitter. My hope is to have at least several hours daily of properly trained support after high school so I can learn and work, and make my own way in the world.
I fear getting stuck with someone who is not well trained for my intellectual or communicative needs. I am “low functioning” in independence, but “high functioning” in intellectual ability, which means that I will need lots of support to go to college or work, but with the right support I can achieve at a high level. Stephen Hawking has a pretty good aide who helps him to achieve at the fullness of his capacity, despite severe disabilities.  There are programs today that simply don’t know how to deal with people like me. They divide autistic people into groups of either practically independent, or “low functioning” and remedial. How will the system adapt to people like me, as more of us emerge? Do you have any ideas?
My ideal future would be to work every day part-time as an autism consultant, to write every day on autism and other topics, and to earn my living this way.  Exercise has become important to my life. I need it daily to help my body/mind connection continue to improve itself. Somehow, any future programs will need to include some way to help me get connected with friends.  My autism is very isolating. The assumption that I am not interested in people is way off. My problem is that I get overwhelmed in crowds, noise, and visually over stimulating environments. Since I cannot talk, socializing requires an iPad, effort to type—which is slower than talking by a lot—and an aide to keep me focused.  This makes socializing hard, but not impossible. I hope any programs for the future think of the social needs of people with these kinds of challenges.
How will the system help me to find an Annie Sullivan? The concept is old. Helen Keller stayed disabled all her life, but she got terrific and intelligent helpers, so she was able to thrive, and she inspires people to this day. But if she had not?
I want to let you know that speaking before a large audience is very anxiety provoking for me. I may need to step out at times. Answering questions before an audience is very stressful, so I have a film for you of me answering many frequently asked questions. If my body is calm, I will try to answer some questions today, however, if you are interested, my book, which is on sale outside, should answer most of your questions. I describe in detail my journey into communication, my early remedial education, and my current general education in a regular high school. I also describe many puzzling autism symptoms which I try to explain from the inside out. I talk about how it is possible to understand correctly and get the answer wrong. I explain stimming, impulsivity, motor issues, anxiety and many other aspects of severe autism. There is an interesting conversation at the end between me and the neuro-researcher who wrote the foreword of the book about my internal language and other issues. You can also check out my blog idoinautismland.com. You can also follow me on facebook or twitter at idoinautismland.
Thank you to the Autism Society for inviting me to speak with all of you today. I appreciate this important opportunity. I am grateful to the audience for your patience with my iPad monotone. I also appreciate your willingness to be challenged by an outspoken, silent guy.

Autism Conference Next Weel

For those in southern California next week, I will be speaking at this conference and signing my soon to be released book.  Very soon it will be for sale on Amazon and I will keep you posted.

As my book gets closer to publication, I will be sharing some essays written by people who know me to introduce me to people who do not. Today I am sharing what my friend, Cathy Gomez, wrote. Cathy was my aide in school for the past two years.


As Ido’s Behavior Interventionist for four years, I was initially able to see him communicate with his mom every time I did a home session. It was very fluid and natural. I also went through the process of training to communicate with Ido. It was very difficult at the beginning because we had to build trust and a relationship. Ido was so anxious, but that slowly lessened. We practiced every other day and each time we got a little better until we reached the point that he was able to fluently communicate his thoughts to me. I was able to see the progress as well as Ido’s frustration when I misunderstood him. Recently it has been so exciting to watch Ido type on his iPad. The iPad will allow Ido to become more and more independent in so many more ways.   

Ido’s greatest strength is that he is resilient. He wants to experience and do things, just like you or I, even if they are more difficult for him. It takes a lot of courage to be mainstreamed in all regular classes, knowing that he will be the only student like him. Ido’s greatest challenges are controlling his emotions and body. He has a more difficult time managing feelings because they tend to quickly escalate. However, even when emotions are high, Ido is great at staying reasonable and listening to logic.
Working with Ido for the past four years, particularly the past two, when I was with him throughout the school day, has affected me significantly. He changed everything I knew about autism and people with disabilities. I was supposed to be the educator, but he has taught me more than I could learn from a professional.  In college I learned that autistic people can’t have empathy, which is a ridiculous notion. I now view people with autism or other disabilities the way I would anyone else. Ido has shown me that he isn’t held back by his disability. He goes hiking, likes to joke around, wants to learn new things, and reads faster than I do.

Guest blogger- Introduction to Ido


As my book gets closer to publication, I will be sharing some essays written by people who know me to introduce me to those who do not. The first is by Tami Barmache, lovely friend, and mother of a son with autism.

I remember meeting Ido’s mother, Tracy, at a mom’s night out. She was describing that while Ido was unable to speak, he was communicating by pointing to letters on a letter board. I had never heard of such a thing, was fascinated and wanted to learn more. I, too, had an autistic son who was not able to speak.
As the mother of a child who often cannot communicate his thoughts to me, watching Ido on the letter board, and now his iPad, has always been nothing but a pleasure- liberating. It is sometimes difficult to reconcile the differences between how Ido presents himself to the world, and the words and ideas that he spells out on the letter board or keyboard. There is something that tugs at you and says, “It just can’t be.” But then you see him, over and over again, spelling out his thoughts that are clearly his. It is not Ido’s job to prove himself to us. His challenge of remaining in control of his body to the best of his abilities is enough to face every day. We are the ones who have to find a way to overcome that incongruence, and kick through the barriers and limitations that skepticism creates.
Ido has many strengths, but the one that stands out for me is his perseverance. He says that his mom was relentless in her efforts to bring communication to his world. He was along on that ride, and was hungry to learn and communicate. He is strong, determined, and wise beyond his years.
I would imagine that Ido would say his greatest challenge was living a life without communication. Now he is able to convey his thoughts, feelings, struggles and successes. He has the ability to find his way through difficulties with the help of those who love and believe in him. He continues to face other challenges, such as gaining better control over his movements, and reaching other families and professionals.
So little is understood about autism in general, and specifically about individuals with limited communication.  Ido is very articulate, and has a vivid and clear way of describing his experience with this very difficult disability. With these insights, we can go beyond all of the technical terminology and the need to “fix” everyone. Ido can give us a window into the world that we, as parents, long to know so much more about. Professionals owe it to their students, clients, and patients to listen to what Ido has to say.
One day I was sitting under a beautiful tree in a park with Ido and his mom. I was frustrated and confused about what might be going on with my son. I always turn to Ido as my “go-to guy” in order to get a little bit of insight into my little guy’s world. After patiently answering some of my questions, Ido spelled out on his letter board: “Autism is a deep pit. Don’t give up.” I think of those words regularly and they give me strength. I will never give up. Thank you, Ido.

Relaxing Chefs

I love to unwind watching my favorite chefs. I have some tapes I’ve seen over and over. If I need true relaxation I watch Jacques Pepin, master chef, teaching techniques or recipes. I imagine all the dishes in my mind. I love the really knowledgeable, talented, ungimmicked chefs. They never pretend to be hilarious, or have personalities bigger than their  recipes. They are just knowledgeable, interested in what they do, and fun to watch.

My second favorite is Ming Tsai who fuses Asian and Western cuisine. Third is Italian chef, Lorenza DeMedici. Her recipes look so delicious I really would like to try them all. I like watching them and listening to them enthusiastically teach. It is the best method to relax.