Here is an eleven year old post that I wrote when I was fourteen years old.
*A happy footnote is that I now know of three of my former classmates from elementary school who are now fluently typing to communicate. I hope there are even more.
Here is an eleven year old post that I wrote when I was fourteen years old.
*A happy footnote is that I now know of three of my former classmates from elementary school who are now fluently typing to communicate. I hope there are even more.
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 one 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)
Nonspeaking does not mean non-thinking. That’s my mantra. Nonspeaking may be caused by motor issues. That’s my message. Motor issues do not cause stupidity. That’s my point.
Being locked internally because of motor issues is not the same as a language processing problem and should not be treated as such.
There is an overwhelming need for professionals to learn about autism from those who live it and can describe it in words. I am referring to the nonspeaking typer who tries to explain autism from the inside out. There are now quite a few of us, and the number is growing. Our messages are always the same. Intact mind/disobeying body. Smart head/dumb body. Thinking mind/non-thinking motor system. Not speaking is not the same as not thinking.
In the six years since my first book, Ido in Autismland, was published, only one researcher ever contacted me to learn about autism from me. That’s kind of pathetic, if you think about it. I’d like to help guide their research based on my real symptoms to help improve treatments and theories. A fair skeptic and an inquiring scientific thinker might take the time to meet a proficient typer, to ask questions, to learn about their journey to increasing fluency. But they don’t, for some reason.
All this is due to the 3 P’s that preoccupy the skeptics. Proofs, prompts and presumption of competence (or lack thereof).
In ASHA’s response to my editorial, they say they need testing proof before they can entertain the possibility that RPM might have any validity. This intrigues me for a couple of reasons. There is a need to validate claims and I think we all recognize that, but there is more than a single way to get data. Observational data and longitudinal studies, including film, would be one way. Another would be well-designed studies that factor in the motor and anxiety issues people with autism describe. Without doing so, there is a significant chance of a poorly designed study producing skewed or incorrect results.
Have there been studies and internal reviews in the so-called “evidence-based” autism treatments, such as ABA and speech therapy, as to why a significant number of nonspeaking people struggle to progress using these evidence-based methods? It is too easy an out to say progress doesn’t occur because the person is “low-functioning.” If that’s the case, it doesn’t take ten years of costly treatment to find out. On the other hand, some so-called “failures” of evidence-based treatments go on to become successes, as I did, when the treatment adequately addresses the motor issues impeding performance.
In ABA the prompts are constant, duly noted in logbooks. In speech therapy the prompts are constant too. There are prompts in PECS, Adaptive PE, in school, in every moment, in every treatment, every day of an autistic kid’s life.
RPM uses prompts too. No surprise really. The acronym stands for Rapid Prompting Method. But the prompts do not consist of motoring someone. People are moving their own arm independently. The prompts are to look, to scan an array of letters, to reach far enough, to help someone gain skills in motor precision and in hands and eyes synchronizing for the purposes of communication. Beginners get lots of prompts. Fluent people get few, and mostly just type, though someone may say “keep going,” or someone may hold a letter board steady. As skills improve, prompts go down. Why are prompts acceptable in every autism treatment except touching letters for the purposes of communication? It’s illogical. And it’s all due to this issue:
Presumption of Competence
Well, you can either presume I’m incompetent or competent. I prefer the latter.
There are two philosophies guiding much of autism theories and education. In one there is no presumption of competence. Rather, the nonspeaking individual is determined to be low-functioning intellectually and not properly processing human speech, thus requiring simplified lessons and constant drilling. This is the prevailing theory.
In the other, there is a presumption of competence— that is, an intact mind may be buried behind a messed up motor system caused by neurological factors. Therefore, if the person is taught to move properly to point and spell words, that person may learn to express thoughts and potentially get a more normal education. Many, once thought to be hopeless cases, have proven that, like books, they shouldn’t be judged entirely by their cover.
That has been true for me and for many, many others. That is why I wrote my editorial, my blog and books. The professionals who insist they speak for science too often ignore evidence that may intrude on their theories, but facts will out. There are more typers each day, and once someone has a voice, he or she wants to speak out.
Welcome to WSJ readers! I am honored you took the time to check out my blog.
Here is a link to my opinion piece in Monday’s Wall Street Journal. (Apologies- it is behind a paywall).
Not talking is not the same as not thinking.
The converse is also true.
The American Speech Language Hearing Association, or ASHA, insists that the true voice of nonspeaking autistic people is best left to pictogram systems and garbled speech.
Here is their brief video statement.
Here are films of people with autism who have broken free by learning the methods ASHA disdains. Please note, there are motor challenges in autism, as evident in the films.
Here is a link to an organization of professionals, autistic people, families and others who dispute this harsh judgment and believe the communication of these individuals is their “true voice.” Take a look at the different films and decide for yourselves which seems more logical- a mistaken autistic person not understanding his own disability, or a potentially mistaken professional.
In this video is a friend I have mentioned in previous essays. He has also posted here as a guest author. He is a few years younger than me and we have known each other many years. Our moms are friends and talk to each other about autism (what else?). His name is Dillan Barmache.
Dillan is going to my old high school and he is going to graduate with a diploma in a year. Then he will take on the world.
He has been infected by the same bug I have been — a need to educate and change the way professionals look at our type of autism. I am proud to share his presentation at Stanford University to medical professionals.
His message is identical to mine. Open your minds. Let us out of our prisons.
I’m thrilled to see so many people with autism be heard, be advocates and educate.
As a person with a severe movement and mind body connection disorder, coupled with a variety of sensory processing issues that affect my ability to take in normative auditory or visual input at times, I look and act like I have autism. The reason I look and act like I have autism is because this is what autism is. These issues affect my movements and lock me into motor pathways that may become embedded and intrusive and affect my presentation of myself to the world. I may write more in the future about what I have learned about autism and sensory processing and how it affects us, but today I want to address theories.
The obvious treatment for a sensory and movement disorder affecting all motor issues like handwriting, facial expressions, gesture, speaking, ability to sit for long periods, feel your own body, make eye contact, get out of perseverative motor patterns called stims, initiate, visually scan for items, and be able to show our innate intelligence, would be to focus on movement and to address sensory challenges. Few professionals do this, but some do, like Soma, as well as movement and exercise specialists.
Theories about autism by people who have degrees, titles and prestige but little understanding of autism have been the norm. I have recently learned that in France where I can eat a baguette and enjoy a café aux lait in the shade of the Eiffel Tower, I would also be treated with psychoanalysis for my “mental illness” because in France my symptoms are due to my emotions, not my neurological disorder. In psychoanalysis I would lie on a sofa mute, because I can’t talk, but my silence would be blamed not on my motor/mind communication, but on my parents, specifically my mother. They will say she created my autism by coldness and rejection of me, despite all evidence to the contrary. Moreover, treatment will include “Le packing,” wrapping me tightly in cold, wet sheets for some bizarre reason. I may only be a person with autism, and not a brilliant French psychoanalyst, but I would like to try this treatment on you, you arrogant know-nothing.
Here in ABA-land, theories are equally misguided, but less cruel. Still, 40 hours a week of touching flashcards won’t help a toddler who may have an inability to focus visually, or hear speech distinctly in a sea of sounds, or be able to move the way he wants, to gain the sensory control or muscle control he needs to be able to communicate or show his intelligence. That’s because ABA believes autism is a severe learning disability that is treated by drills, rewards and baby talk. This makes recognition of the motor challenges nearly impossible because all the data from the child’s success in performing the drills is interpreted as a measure of how much the child understands speech, and not of whether the child can get his body to move correctly. Therefore if a child is told to jump and he doesn’t jump because he can’t get his body to move at that moment in that way, his failure is chalked up to a lack of understanding the word ‘jump’ even if he damn-well understands the word ‘jump’ and everything else. To interpret data solely based on the belief that a person’s actions are an accurate reflection of their comprehension of speech, leaves out the possibility of helping this motor trapped person address his real needs.
Did I mention it’s 40 hours a week?
Autism treatment is big business, here or there. Change therefore will be slow.
I hear from many people from different countries regarding autism. As bad as I feel about our understanding of autism here in the US and how hard it remains for so many people, I now understand how much worse it is in other countries. My life has been liberated by communication. I have many challenges, but also opportunities. Most significantly, my school district allowed me to be educated in regular classes once I proved my intelligence by typing on a letter board. Now my improved skills in handwriting and typing on an iPad are making my life easier still, but I have a long way to go.
Many times I feel down and I realize how hard it is to overcome my body, but I also know I am improving and I practice motor issues daily to work on my mind body connection. But the letters I receive tell me how it is in other countries where autism treatment is stuck in the 1950s where belief in “refrigerator mothers” causing autism and treatment by psychotherapy still rule. This is in developed countries, mind you.
How do they treat polio? Do they still use iron lungs or do they immunize? It’s inhumane. If you live in France, or other countries treating autism this way or in other outmoded ways, please share your experiences with me.
But I also know that some countries are stuck even further in the past, in the 19th century, Victorian asylum mode. I need to help change things. How do you think we can do it?
I believe it is time to look at severe autism in a new way. The theories that determine treatment for young children are based on long held beliefs that autism is a processing problem of language and conceptual thinking.According to some theories we cannot recognize emotions, we cannot visually distinguish relatives and friends from other faces, or know right from wrong. Some have even declared that we even cannot recognize a human being from an object.That’s pretty bad, huh.
Is this iPad living, or an object? Maybe incessant drills on flashcards will clear that up. Perhaps I have been introduced to all of you by an object, not a person. How can I tell that a person is not a machine? The same way that all of you can tell.
I guess the solution for decades has been flashcard drills to drill on nouns, verbs, people’s names, commands, and on and on. It is a familiar start in life for a lot of us. But why should I be drilled on what I already know as well as everyone else? From my point of view, it’s a pretty insulting premise.
To base a person’s education on these assumptions is risky because a boring day of ‘what is the weather?’ drills, or touch your nose lessons, does not teach what one needs to learn. I suppose if people really don’t understand, or cannot recognize the difference between mom and dad, or mom and a table, these common methods might help.
But autism is not that disorder.
The autism I have is not a language processing problem or a lack of understanding anything. I want this point crystal clear. My mind is fully, totally intact. In fact, my experience is that most nonverbal autistic people have intact minds too.
Here is your challenge. Stop looking at our weird movements, blank faces, lack of speech, trouble handwriting, poor self control, and on and on, as proof of intellectual delay. It may look like it, but I think looks here deceive. Believe me when I tell you that if I could look normal on the outside I would do it immediately. I am normal on the inside.
That’s different than what people with Asperger’s say, or what Temple Grandin writes in her books. But that’s because Asperger’s Syndrome in severe form is not what I have.
I hope that’s clear because it confuses many professionals. Different neurological problems have the same DSM diagnosis. That’s confusing. I think it would be like putting AIDS and head colds under the same heading because they’re both viruses. Too much is covered under the heading, Autism Spectrum Disorder, and this misleads an understanding of what I have.
So now, let me tell you what I have. Autism for me is a severe problem.
How would you like it if your thoughts didn’t reach your body consistently? What I mean is that your thoughts are intact but internally neurological forces block them from your motor system so that messages get messed up, or ignored, or occasionally they get through. That can resemble not understanding, but it is not.
Nevertheless, the person cannot necessarily demonstrate intact thinking due to the motor issues that block speaking, handwriting, gestures, facial expressions, initiating actions, and more. So, smart intact people may spend years, or even their whole lives, in a body that traps them behind weird movements and unreliable, inconsistent responses. More than that, neurological forces may affect the sensory system, making sounds too loud or visual stimulation overwhelming. The frustration is compounded by autism experts who dumb down learning because of their belief that autism is a language processing problem.
When I was young I did ABA. No offense to any ABA people here, but for me it was a horrid experience. I found those early years of drills and reinforcements an exercise in boredom because I already knew the vocabulary they taught. I just had unreliable hands to point to the flashcards accurately. The baby talk, and most frustrating, the supervision sessions that never worked on my real challenges, made me feel frustrated and angry. Worse, the theories probably delayed my mom’s ability to recognize my true potential by several years, at least.
No offense to any Floortime people here, but I never got much out of my sessions because my play was so delayed when I was small. I craved more than the games I got. But my Floortime was minimal. I was drowning in ABA drills instead.
No offense to OT people here, but what I desperately needed was motor control and physical fitness, and I never got that. I got swings that spun me. Once until I barfed.
No offense to special ed teachers, but when I couldn’t show my intelligence, I still was thinking. But all I got was one plus one, ABC and the weather. My recommendation is to teach at least some age appropriate lessons and books, even before the student can express his thoughts. Who knows how much is locked inside?
My helpers were kind and well meaning, but the way I was taught missed my real needs for communication and motor control simply because the methods assumed I did not understand spoken language and therefore needed a rudimentary lifestyle.
What helped? Soma did. She gave me the ability to type on a letter board when I was seven through her method, Rapid Prompt Method, or RPM. This has progressed to a keyboard and ipad. Because of this, I am a general education student, college bound, on the high honor roll in AP classes and even learning a foreign language. I work out with a trainer and I hike and run and row on a machine at home. I also took piano lessons. These things helped me.
To all the professionals I offended earlier, sorry. I admire your devotion, compassion and caring. I challenge you to see your nonverbal autistic students differently and with high expectations for learning.
Parents, don’t give up hope. If you see intelligence, even if brief, then intelligence is there. It’s most likely inconsistent because of those frustrating neurological forces I mentioned.
Communication is a blessing. Lack of communication is a curse. Let’s give kids the blessing of communication and a real hope for tomorrow.
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.
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.