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.

9 responses to “More on Scientific Un-Query

  1. Hi Tracy,
    Thanks for writing. I have a son with autism who is non-verbal (other than one or 2-words at a time. . . and mostly repetition). The posts from Ido and you are very encouraging, as I know he is smart and understands most of what we say. I am hoping we can unlock some of his ability to communicate and share his story. I just wanted to let you BOTH know that your work is great appreciated, and I hope you continue to share. Many thanks!
    – Jim

  2. Tracy – terrific post. Our children must work so hard to find a way to communicate, but then to be doubted and ridiculed for all their hard work is beyond cruel. If we spent even a fraction of the money that goes to so called “autism research” on what is going on with those who cannot use language to communicate, but who can type, we might be able to help hundreds of thousands of other people. But that would mean that someone who is a scientist was actually willing to approach all of this without preconceived ideas about what is going on.

  3. Amen. Tracy, you have articulated the fallacies of the people who cling to the ABA methodology as being ‘all-powerful’ and ‘all-knowing’. Reminds me of the joke about the fellow who comes upon a man down on his knees under a street light. When he asks that man what he’s doing, he responds, “I’m looking for my keys.” “Oh, did you lose them here?” “No, but this is where the light is.”

    You get the answers to the questions you ask. Funny so many “experts” haven’t learned that.

    Thanks for all you’re doing to change things for the better.

  4. Arthur Golden

    There are some scientists who are “actually willing to approach all of this without preconceived ideas about what is going on.” More importantly, I know there are philanthropists who are willing to provide some money “on what is going on with those who cannot use language to communicate, but who can type, we might be able to help hundreds of thousands of other people.” I am ready to approach one such person.

    Can I quote you? Better yet, to Tracy and Ariane and your children Ido and Emmy, would you join a private research committee that has existed for a couple of months to try to formulate such research proposals? I can be reached by private email at and I have your emails and will try to contact all of you in the coming days.

  5. Raquel Buchanan-Gasio

    Thank you for this. I have a better idea of where I should go with my studies.

    Thank you!

  6. Well said, Tracy! They have so much invested in what they are certain is the truth, that there seems to be no room for curiosity. Such a good point that, yes, the data is accurate…it’s what they conclude from that data that leads these children and families down the road of limited beliefs and possibilities. Makes me want to scream on a daily basis, so felt really good to read your post!! One day I’ll share the story of sitting in the audience while that professor spoke. I could barely write my notes because my hands were shaking and my heart was thumping. When I asked him if he’d ever met any of the typers personally, he asked why he’d need to do that…the research and data seem to be all he needs. Where is the humanity in all of this?

  7. Well said. I don’t believe there is a straight path to follow, but think that there are good and bad aspects to each therapy for each child. But, you have to be critical of everything to realize this – and that can be very hard to do.

  8. I recently read Ido’s book. I work with autistic students, and I identified with everything Ido said. During the school year, I realized the 7 year old student was listening to and understanding everything the adult professionals were saying as they discussed the student in his presence. Administrator’s and researchers need to be much more open minded when it comes to all mental/neurological disorders. Thank you for enlightening us. I learned so much from Ido and his book.

  9. My message to the autistic community.
    Stand Proud of Who You Are.

    The time has arrived and not a moment to soon for people such as yourself to realize that you are all unique, serving a greater purpose towards a greater cause, all for the betterment of humanity.
    The most important question that you could ever raise is this!
    Are you really the ones that are so different for not conforming to the norms of society?
    Can you any longer allow yourself to be thought of as an inferior and lesser person, but then especially in thinking such of yourself?
    I beg to tell you No No No!

    You are all unique; you are the fortunate ones having attained immunity against the similarities of the minds.
    You are critical for the conservation of humanity.
    You are responsible for the creation of new concepts of thought.
    You are responsible for the uniqueness and diversity amongst our species.
    You are the unacknowledged ones whose unique ideas are critical for progress.
    Stand high and raise your heads with pride for whom and what you really are. You are the ones living on the edge of a very narrow dividing line between the so called normal and being trapped on the other side of life.
    You are the mavericks of evolution, the test pilots of the minds, and the very essence of our existence.
    Sadly so there are those of you on the far extremities of being different. You are the ones paying dearly, exceeding the boundaries of our limitations, pushing our minds to the extreme. For this very reason you are the ones that should be cherished and appreciated for giving true meaning to life itself. You are the ones paying the penalty for keeping us on track, evolving us towards a higher level of consciousness.
    It is in being different which renders people such as yourselves capable of walking the edge which is exactly what prevents this world from stagnating into a meaningless loop of similarity.
    “Einstein” as in the likes of many others before himself, have been no different from who you are.
    They are the ones having walked the edge and responsible for what society have achieved.
    They are also the ones responsible for the way that society thinks, behaves and responds.
    But then so can you! It’s up to you to take control of your own destiny, let go of being perceived to be inferior when you are not, but then especially so in guarding against thinking such of yourself.
    Being a maverick of evolution, a test pilot of the mind, the risks are extremely high and the very reasons why so many are destined to be trapped in their own worlds serving a purpose towards a higher cause. You are all superior beings which are exactly why so many of you are capable of achieving what neuro-typical cannot no matter how hard they try. Without people such as you the world would literally stagnate, folding back onto itself becoming meaningless in less than a few generations.
    Being normal can only serve to limit your experience of life itself, living on the safe side of the edge, but then only to be caught up within the constraints of the norms and mindset of society.
    Think of it like this.
    No more than a rabbit can teach an eagle to fly, can an eagle teach a fish to swim.

    If the mindset of each and every single person on this planet could be transformed into a book, then there would be billions of similar copies becoming meaningless despite being perceived otherwise. As such, you only need to read one to know them all, having similar mindsets, thinking in similar ways, inevitably leading to similar outcomes.
    Think of yourself as an exceptional book embracing the title of “Being Different” which is a far cry from the similarities of books entitled “Normal”.
    Without these critical indifference’s among our mental abilities we would certainly still been dwelling in our caves.
    Being human is that which liberates us from thinking and living like animals.
    Together we can make a huge difference in the lives of those so desperate in need thereof.
    For this very reason I invite you all to embrace my dream in making it our dream and join The Autism Channel to make a difference.
    Coming Soon –
    Discover Your Mind on The Autism Channel.
    For more Info

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