Category Archives: autism research

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.

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?

Challenging and Changing Perspectives

By Edlyn Pena, guest blogger
As a researcher who studies ways to support the access and success of students with autism in higher education and a mom to a handsome six-year old son who uses an iPad to communicate, I aim to help Ido advance his message to educators, professionals, and caregivers. My objective here is to provide context and encourage you to learn more about approaches that enable nonverbal individuals to spell and type to communicate. I’ve received criticism for endorsing approaches like Rapid Prompting Method (RPM) because they are not evidence-based. There is still much speculation in the autism community about the legitimacy of RPM and other approaches that teach pointing to letters and typing. Research on these methods are lacking. I understand that professionals will continue to question these methods until they are rigorously studied and published in peer reviewed journals. I am the first to believe in well-designed research studies. As an academic, I also believe in being open to new possibilities, ideas, and presuming competence in individuals on the spectrum. Without this openness, I would have never exposed my own son, Diego, to RPM. He would not be where he is today with regard to sharing how autism affects him daily (e.g. “Paying attention is tiring”) and to articulating unusual ideas (e.g. “Eight elephants play in a new kind of ecosystem”). I would not know the level of depth of thought and curiosity hidden in his mind. Diego’s voice is now being heard.

Ido is a pioneer in advancing our knowledge about autism and people with complex communication challenges. Ido’s book, Ido in Autismland, is by far the most powerful book I have read about autism. Other authors write compelling books about autism, prompting us to think about those on the autism spectrum. But Ido is different. He is extraordinary because he changes the way we think about autism. He disrupts our misguided notions that lack of speech equates to lack of intelligence; that students with autism are impoverished of expressing or recognizing emotions; and that all students who are non-verbal belong in special day classes without the opportunity for inclusion. Contrary to many of the messages the world receives on a daily basis about people with autism, Ido’s book tells us that the minds of people with autism are as complex, creative, and intelligent as yours and mine.

On a personal level, reading Ido’s book was transformative and allowed my relationship with my son to turn a corner. I now talk to Diego like I would any other smart and capable 6-year-old. I make efforts to talk to Diego, not about him, when he’s in the room. Ido, Diego, and children like them are nonverbal, affected by autism, and brilliant. By typing to communicate, they blow us away with their complex insights, imaginative ideas, and witty humor.

If you are a professional in the autism field, I invite you to think outside of the box about what “conventional wisdom” on autism tells us. Without doubt, this takes courage. It means acknowledging that we do not know everything about autism. You might learn, as I did, that our perceptions about the capabilities of non-verbal individuals are wrong. Rather than dismiss RPM or other approaches to support typing, I encourage you to educate yourself about the approaches. Interact with individuals who have learned to type. Read Ido’s book or watch videos of children and teenagers who point to letter boards or type independently. For example,

https://www.youtube.com/watch?v=Wvn7kYJyOFM

And, of course, Ido has posted great video clips of him typing on this website. For example,

https://www.youtube.com/watch?v=ZLtQWXdDCFo

From one professional to another and from one parent to another, I urge you to take a chance to learn more before dismissing approaches to support our children who otherwise have limited means to communicate. We have the power to make real change by enabling the individuals we care for and serve to communicate in rich and meaningful ways.

-Edlyn Vallejo Peña, Ph.D.

www.EdlynPena.com
Assistant Professor
Graduate School of Education California Lutheran University

The DSM, Asperger’s, Autism and the Diagnostic Criteria


I think the American Psychiatric Association’s decision to eliminate Asperger’s Syndrome from the new DSM is not very smart and I’m not sure what their motivation is. It can’t be based on seeing people like me and seeing people with Asperger’s as identical in terms of symptoms. In a spectrum, I’d assume we’d be the same, just milder or more severe versions of each other. But it isn’t exactly that.
I think rather than lump everyone together under one big, fat label, the psychiatrists at the APA should try to notice how many differences there are in the symptoms. It is frustrating to me to need to show them the obvious, but researchers, in my opinion, seldom pay attention to non-verbal autistic people. Even when those non-verbal people who can communicate by typing describe physical symptoms different than Asperger’s Syndrome, many researchers look to Temple Grandin and others, not to Tito, or Carly Fleischmann, or me, or other non-verbal people who type to explain our experience of autism.
Let me help the APA.
Temple Grandin
*Independently drives, rides horses, shops, cooks, etc.
*Lives alone.
*Initiates actions throughout her day.
*Excellent fine motor control. Able to use hands to graph detailed engineering projects.
*Talks.
*Has difficulty interpreting people’s behavior.
Ido Kedar
*The opposite.
To make it clear, I have no difficulty understanding human behavior, but my brain and body are not working well together. In common, both of us have sensitive sensory systems, poor eye contact and shyness.  But, 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.
I think researchers might want to look at the big differences in symptoms and adjust their diagnoses to fit, rather than squeezing everything on a continuum that may actually be different conditions.

Researching Genetic Roots of Autism

This article discusses some of the recent findings in autism research.

Can People Really Outgrow Autism?

This is an interesting article. Is it possible to outgrow neurological symptoms? I doubt it, but I do believe the brain can accommodate some neurological problems in other neural pathways and overcome some challenges. I don’t think we can outgrow autism. We just adapt and try our best. What do you think?

Understanding Autism

I correspond with a neuroscientist about autism. He asks me questions about things regarding autistic behavior to help explain what we think on the inside. I find many interpretations are incorrect but few experts ask me or people like me to explain. I guess it is hard because we often can’t communicate so they have to get information from doing trial and error or interviewing Asperger’s people. I feel both have led researchers astray.

Observations may show the result but miss the cause. Asperger’s is also a trial. It isn’t my trial, however. Recently I was interviewed by a filmmaker with Asperger’s. He was surprised at every answer I gave. This tells me that autism like mine and Asperger’s like his are fundamentally different in so many ways, and if researchers turn to people like him to explain the way people like me act they may interpret my behavior for his condition.

I am so grateful to be part of the solution now and to help researchers think differently about why we autistic non-verbal people act as we do. The worst frustration is to be misunderstood and I hope my book will shed light on what autism is for many of us.

Lizard Brain

Autism is a very frustrating disorder. I can be totally impulsive. I get foods I shouldn’t take. I see it. I take it. No thought at all. I see things I want to spill or spray or touch. No thought at all. It is my lizard brain. It is almost reflexive. I think eventually, when I am caught. Then my reasoning is totally stung with remorse. I hate my impulsive actions.

I live in a dual world. On the one hand I have an intelligent mind and I think deeply. On the other hand, I only react to impulses, like a lizard chasing a cricket. Maybe neurologists or neuro-scientists can figure this one out. My whole life is extremes. I am intelligent but I am not able to speak or write like a teen. I can’t even speak as well as a kindergartner. I am impulsive like a baby, but I am a religious thinker like an adult.

Autism is a wild ride. I think it is sort of a blessing to think deeply like I do, but it is so grating to follow my lizard brain as well. I wish I could figure out how to get mastery over it because people rightly get angry and I seem selfish.

Professional Guessing

I read this story in the Wall Street Journal.
and it probably describes feelings that other parents can relate to. The boy has very different symptoms from me so of course his story is different too, but I see how hard parents work on dealing with behaviors they don’t understand. I see how they seek answers from experts.

The part of the article I want to comment on is what the autism specialist told the father about his son. The insight the father received is interesting. He is told that his son perceives the world in fragments. In my opinion, the expert is giving an insight based on conjecture. How is she able to determine that the boy is perceiving reality in fragments? I don’t perceive in fragments, though my sensory system isn’t normal. I think autism has a lot of experts who guess a lot.

I am thinking that maybe I don’t have a title, but I am an expert in autism. I could tell the expert the struggle of autism from my own experience. I didn’t read textbooks in autism to help me tell others what autism is. I live autism. I see the world in autistic eyes. I have had so many theories all my life that severely impacted my life. I would say that many were totally fantasy.
I hope soon I can publish my book and tell about autism from the inside out.

Interesting New Autism Study on Autism and the Environment

 A recent study links the cause of autism to environmental factors. Now is the time to figure out the cause of autism and how to treat it. If the research helps, I would be thrilled.

More information on the autism and environment research