Category Archives: mind/body communication

More on Autism and Exercising

I have received a lot of questions about exercise and autism since my last post. From my own experience, when I was small one of my OTs looked at me and remarked that I had low muscle tone like most people with autism. She then did nothing to work on fitness. She loved the swings, however, like most of my OTs to vestibular and propriocept me.

In school my APE teacher followed a routine I believe must have been designed for a different motor disorder than mine. The movements were too hard for me to motor plan at the time which led to frustration.

Most people don’t imagine that people like me have the potential to be fit. I know it’s possible. It takes longer than a normal motor system to improve but it can still improve. It can be hard at first, so persistence through resistance is essential. You have to be aware of real challenges like motor planning, muscle and tendon tightness and other issues common with autism that can interfere with success. For example, bilateral movements, moving arms and legs simultaneously in an exercise, and transitioning movements can be really hard for some people and frustrating until more motor control is achieved. People make a lot of adaptations to compensate for the motor difficulties. For example, if jumping sideways is hard to plan, a person might consistently turn forwards. You can build up to the skill incrementally in many ways, such as stepping sideways at first, stretching the hips and working on jumping in general. If someone can jump forward with ease but takes many seconds to jump sideways or backwards, you are likely looking at motor planning challenges which can improve with practice.

The goal is to make moving fun as well as a key to emotional balance and fitness.

Good luck!

Spectrum or Different?

Autism Spectrum Disorder is pretty broad. I met a young woman today who has been diagnosed with Autism Spectrum Disorder. She seemed totally like every other neurologically normal person I’ve met in terms of motor, speech and social skills. Maybe I’m missing something she suffers from, but why on earth do we have the same diagnosis?

If I get a paper cut and you amputate your leg, people don’t say we have a Laceration Spectrum issue. But it’s worse with autism because autism is so many different issues lumped under a huge umbrella.

I have written my opinion previously that I believe that my autism and Asperger’s Syndrome are different neurological conditions with the same name. This confuses people. Temple Grandin is unable to read people, thinks visually, speaks, and needs no 1:1 support to get on with her life. I am her opposite. I have great insight into people, think in words, can’t speak to save my life, and need 1:1 help.

Somehow the brilliant minds looking into autism haven’t noticed that the opposite symptoms might be different conditions, not a spectrum. Her condition may primarily be a neurological difficulty reading people while mine is primarily a mind/motor disconnect, though both of us may have problems of self-regulation and sensory challenges.

Would it make sense to call a heart problem and asthma a spectrum disorder because they both lead to shortness of breath? Not possible because doctors identify heart issues and lung issues medically. Brain issues are the most unknown, so doctors look only to the external behavior. That’s observational, not medical.

Temple Grandin has poor eye contact. Me too. She talked late. Me too—to the point of still not talking. She has some things similar to me, but they are superficial similarities, in my opinion. So, I have decided to help out the professionals. I am happy to abandon the diagnosis of autism and give it to Temple Grandin and those with similar symptoms since it really isn’t the most helpful term to give people an insight into my medical problem. In fact, maybe we can have a contest to come up with a new name for my kind of autism. I have a few ideas:

Severe Motor Dyspraxia

Mind/Motor Communication Linkage Disorder

 Self-Regulatory Motor Control Disorder

You get the idea, no? Maybe a new name would lead to a better understanding and treatment of this neurological condition.

 

Motor Difficulties in Severe Autism

Last year I was asked by two neuro-researchers to describe my mind/motor problems to be part of a scholarly research paper they were publishing in a neurology journal. My personal experiences helped support their clinical findings. In other words, their data was validated by my life experiences. Unfortunately, papers get rejected all the time in scientific journals. I believe and hope their findings will still be published, however my essay will not be included as the editors determined that what I wrote was too personal and unscientific for their venue (meaning not research based). This is true. My essay is not research based. It is biographical. My essay is merely a description of my life and struggles that I hoped would intrigue more researchers to look into motor issues and autism.

I figure, why waste a perfectly good essay? The editors suggested I find another venue to publish my essay and I decided that my blog is the perfect venue to share “Motor Difficulties in Severe Autism.”

Motor Difficulties in Severe Autism

by Ido Kedar

Most theories about severe autism that are used today by educators and other professionals are based on the premise that severe nonverbal autism is a learning problem with receptive and expressive language delay, low cognitive capacity, concrete thinking, lack of humor, lack of empathy, lack of theory of mind, and often even an absence in basic awareness of the surrounding world. The expressionless faces, inability to make eye contact, the sometimes bizarre looking self-stimulatory behavior, and the inability to speak can make intelligent people appear not to be. As a person with autism, this is deeply frustrating. When I meet strangers for the first time, they often presume I need baby talk because of my outer presentation. I cannot stop my neurological forces from camouflaging my real essence. Inside there is a person who thinks, feels, jokes, and has a lot to say. On the outside, people see my odd movements.

If I had not been taught how to control my hand enough to type with my index finger on a keyboard, iPad or letter board, my ideas, jokes and thoughts would have been known only to myself. This is how it is for thousands of people with autism who cannot communicate. Their outside appearance is compromised by strange compulsive movements like hand flapping, waving strings, carrying random objects around, pacing, impulsive actions and odd vocalizations, and beyond that they may have difficulty following directions to simple tasks or questions, adding to the impression that they are intellectually delayed. The challenge for professionals is to imagine that in spite of a person having these very visible external challenges, for many, these behaviors have nothing to do with intelligence but rather are due to a disconnect between the brain systems responsible for thought and movement.

I hope to prompt a conversation among professionals, researchers, parents and others to reconsider current treatment trends. It is my hope that more and more severely autistic people receive a normal education, be able to express their thoughts and ideas and be able to live full lives, as I struggle to do every day.

Not Speaking is Not the Same as Not Thinking

If a person cannot speak, cannot control his hand to write, cannot control his facial muscles to express his feelings at will (hence the flat affect of autism), cannot gesture, and cannot hold a pencil to write, how can this person prove that he understands? Why is it commonly assumed that a person with these challenges has cognitive delay when everything I mentioned in the previous sentence can also be seen as an example of a motor issue? When I was a small child I had ABA (Applied Behavior Analysis) therapy forty hours a week. I sat at a table and I was asked to demonstrate my understanding of basic concepts by pointing to flashcards arrayed in front of me during drills. My instructors took data regarding whether I pointed to the right card or not. They thought they were collecting data on my receptive understanding of language. They were not. I understood everything, as any other child my age would. The data they were collecting, though they did not know it, actually measured my poor ability at that time to get my hand to touch with accuracy the card I wanted, and did not reflect an accurate measure of how much I understood. My mind might be screaming, “Touch tree! Don’t touch house!” and I would watch, like a spectator, as my hand went to the card my hand, not my brain, wanted. And down in the data book it would be marked that I had not yet mastered the concept of tree. This is the neurological force that needs to be studied.

The inability I had to express my ideas verbally, in addition to these motor difficulties, meant that I was locked internally. Unlike Stephen Hawking who lost his motor control progressively as an adult, but who is widely recognized to be an intelligent person despite being unable to speak or control his hand, I was born with my speech problem. From my earliest education, the presumption was that I was limited and didn’t understand. How could I prove otherwise when I was never taught to communicate until years later? If Stephen Hawking had been born with his current communicative disability, would the experts who assumed I was unable to understand language, have believed the same about him and never given him his assistive technology? I argue that many nonverbal autistic people are intellectually normal but are locked internally in bodies that do not obey their minds, making them appear to not understand. They deserve the opportunity to learn how to communicate.

Body-Mind Disconnect

When I was young my body rarely obeyed my mind. If I wanted to say no, my mouth said yes. If I wanted to say yes, my mouth said no. For example, I remember going to a restaurant with my family when I was small. I wanted to eat chicken. My mother asked me if I wanted to eat beef. In frustration I heard my mouth say “yes.” I had no way to correct this and got stuck with a dinner I didn’t want. This kind of frustrating experience happened often because of the unreliability of my verbal responses. I had similar unreliability with my motor system. As I described in the previous section, if I wanted to point to a flashcard in an ABA drill my hand often went to the wrong card against my mind’s wishes. My mind would tell me to walk to one room. My feet would insist on taking me to another. My mind wanted to open the car window. My hand repeatedly went to the door. My hands could not count the right number of straws or forks, though my mind knew the right number. This frustrating experience is is like gambling by rolling dice. My dice might land on my body not listening to me at all, or perhaps it would land on enabling me to do an action partially and inadequately, or perhaps it would land me on another neurological tangent altogether in self-stimulatory movements, or if I was lucky, the dice might land on enabling me to do exactly what I wished to do.

In my book (Kedar 2012), I describe how when I was small we visited relatives and my mother instructed me to give my aunt a bouquet of flowers. The problem was that my aunt was behind me and my other relatives were in front of me. What does a kid do who cannot initiate a search motorically? I gave the flowers to the person I saw, knowing it was not my aunt. If I grabbed the wrong can from the shelf after being instructed to get an item, it was not because I lacked the knowledge of what tuna fish was, it was because at that time I lacked the ability to search and scan. I still cannot adjust my blankets in bed or even initiate moving to get another blanket if I am cold. Does that mean I’m too stupid to identify how I feel? No, it means I can’t get my body to do what I want it to do, when I want it to, with reliability and consistency. This is entrapment. It is not receptive and expressive language confusion, and most definitely not a lack of thought, emotions and awareness. In my opinion, this is like a paralysis of intentional responses. When it comes to self-stimulatory behavior, I often cannot get my body to stop moving to its internal impulses though I may desperately want it to, and at other times, such as when I lie in bed unable to move to my desire to pull on another blanket, I cannot get my body to listen to me at all.

Finally, there are times when impulses completely overcome the mind like a lizard brain overcoming my intellect. I found cotton candy nearly impossible to resist when I was young and I seldom got it because it was so full of sugar and food coloring. My family and I might be walking through a crowded fair, and if I spotted a kid eating cotton candy, I might quickly snatch off a piece and pop it in my mouth, if no one was fast enough to stop me. The kid would glare at me and my family would be embarrassed and apologize. I did this despite knowing right from wrong. The lizard urge to grab cotton candy defeated the intellectual knowledge of manners. These kind of overwhelming urges can be hugely hindering in the life of a person with autism.

 

Improvement through Communication and Exercise

My skills, though far from perfect, have improved a great deal because I can type now on a letter board or iPad. Each year my motor control becomes more under my own control. I communicate by one finger typing and that is the best I can hope for. Still, my one finger typing or pointing to letters is the difference between stagnation in a low remedial autism program or receiving a general education. It is the difference between being thought to be a concrete thinker and being known to be funny, kind, compassionate and intelligent. My one finger typing is the equivalent of sign language to a deaf person. It is my modality of communication and it gives me access to the world and control over my life.

Since I believe my mind/body disconnect is a key to my odd movements and body apraxia, I have found that a vigorous exercise program focusing on strength, coordination and flexibility has helped me with my motor control tremendously, because the fitter I am physically, the more my body obeys my mind. Exercise also helps with my emotional equilibrium and helps to reduce the constant anxiety that so many people with autism experience.

 

A Human Rights Issue

Communication is a basic, innate human need and humans have an innate capacity for understanding and expressing language. The assumption that people with severe autism all have impaired thinking has resulted in the underestimating of the true abilities of thousands of individuals, lack of adequate educational opportunities, isolation, loneliness, boredom, frustration, hopelessness, and a life of entrapment within one’s own body. This price is too high.

My recommendations are many. The first is to stop assuming one knows what is in the mind of a person with severe autism simply because of what he shows externally. My outside is not my most flattering presentation because of all my odd movements and behaviors, but I believe I am a smart person who deserves opportunities in life. The educators and many professionals I worked with before I could type were limited by their low expectations of their students. Applying the same words they used to describe their students, they were resistant to new ideas, resistant to change, and rigid and concrete in visualizing the possibility of their students having greater potential.

In my book (Kedar 2012), I wrote about how I would have liked to have been taught when I was young. Here are my recommendations.

Give people with autism the benefit of the doubt.

Speak normally to them.

Teach grade level lessons in school.

Work on real physical fitness early. We need smart fitness trainers more than swings.

Look at people who have successfully taught typing to severely autistic people. Do their students progress and become increasingly independent in their communication? Does this not demonstrate something worth exploring?

Finally, listen to those people with autism who have broken through their silence to be able to describe their experiences. We offer insights from the inside. This is valuable because our outsides mislead and theories can go astray as a result.

 

 

 

References

 

Kedar, I. (2012). Ido in Autismland: Climbing Out of Autism’s Silent Prison. Charleston, SC, Sharon Kedar (October 25, 2012).

 

 

My Speech at the Mental Health Advocacy Services Celebration

I am truly honored to be standing here tonight receiving this recognition. I am honored to be here with our District Attorney, Jackie Lacey, too. It is a reminder that advocates can be high school students or politicians, or anyone else. We just need to care deeply about a cause.

As you look at me, some of you must be wondering if I really wrote my speech.
After all, you’ve probably heard that most nonverbal autistic people have low cognition, no insight, no theory of mind, no inner world and poor receptive language.

Guess who told you that? It wasn’t people with autism, that’s for sure.

I have a very misunderstood condition. My disability is caused by my brain’s faulty linkage to my motor system. So truly, I think and understand though I may look like I don’t. Add to that a sensory system that is malfunctioning, and you have an idea how tough it can be.

The truth is, autism itself is easier than the incorrect assumptions by the so-called experts and specialists out there. A locked-in, motor impaired, sensory overwhelmed child cannot escape this on his own. Consequently, few nonverbal autistic people learn to communicate. Experts comfort themselves that we can’t communicate because we don’t understand.

I got fed up with this, because all around me are smart autistic people dying of boredom and loneliness, not able to communicate one idea more sophisticated than a basic need.

My decision at twelve was to speak out and correct this misinformation.

I was denied an education in elementary school because of the expert opinion that an academic curriculum was beyond my intellectual abilities. Now I am an AP student in 12th grade, ready to go to college next year. If my parents had listened to my experts I would still be stagnating in 1+2=3 expectations.

Things are changing gradually. Other autistic typers are speaking out too. We face resistance by people who believe theories over truth. But in time I know that the current paradigm will be discarded, like so many other incorrect theories, and the nonverbal will at last have a voice in their futures.

Thank you.

Out of the Closet

 

Every day I meet new communicators. Not babies, but kids in elementary school, teens and young adults. Their lives had been limited in one way communication for way too many years. They listened but they had no way to answer. In any case, they heard people. Many of them heard their parents moan and groan and say comments like, “I don’t know how much intelligence is there. I don’t think he understands much.” They listened to their teachers say things like, “He isn’t aware of right from wrong. He isn’t aware of his surroundings. He is oppositional today.” They listened to ABA specialists tell them, “No, try again,” “No, try again,” “No, try again,” and “High five. Good job.” They heard a world that thought they were dumb. But the world in this case was wrong.

It isn’t a lack of intelligence to be able to think but to not be able to get your body to show it. It is being trapped. If I put your hands into baseball mitts and your tongue was trapped in gooey sludge and couldn’t move right and I bombarded you with questions, I think you would agree you would have a hard time showing that you had an intact mind, especially if those baseball mitt hands moved differently to your thoughts and wishes sometimes, and everyone assumed that people with sludge tongues and baseball mitt hands were intellectually low.

I know the way to escape this isolation is not to tell sludge tongues and baseball mitt hands to move in ways they can’t. It is to teach those hands to point to letters, to type with one finger and to communicate. There is now a steady tide of people, once thought to be dumb, once thought to need baby lessons and baby talk who are mastering communication on letter board and typing. And voila! Not dumb!

More than anything they find relief being recognized as intelligent. And some find even more; a mission, friendship, a life of meaning. But none will go back into the closet of silence.

I wonder if you are a parent, teacher or professional and you have seen a “dumb” kid prove himself smart, how do you react with other kids? How long should they wait for you?

A Challenge to Autism Professionals


The theories regarding autism have been based on observation of our odd behaviors. Lists of these behaviors make a diagnosis. I have limited independence in selfcare. I have limited eye contact. I have flat affect often. I can’t express my ideas verbally. I have poor fine motor control. I have impaired initiation. I have impaired gross motor control. I have difficulty controlling intense emotions. I have impulse control challenges and self stimulatory behavior.
Whew. When I write that it sounds pretty bad, but I function adequately in this world. I am now 17 and I am a fulltime high school student in a general education program. I am in Honors Chemistry, Honors US History and Honors English. I am in Algebra 2, Spanish and Animal Sciences. I get straight As. I work out with a trainer 2 or 3 times a week to get fit. I study piano. I hike, cook, and help take care of a horse. I am invited to speak at universities and autism agencies. I am the author of Ido in Autismland, and a blogger as well. I have friends.
I say this, not to brag, but to let you know that people like me, with severe autism, who act weirdly and who can’t speak, are not less human, as Dr. Lovaas suggested, and are not doomed to live lives of rudimentary information and bored isolation.( “You have a person in a physical sense — they have hair, a nose and a mouth — but they are not people in the psychological sense,” the late Ivar Lovaas, a UCLA researcher, said in a 1974 interview with Psychology Today).

I communicate by typing on an iPad with an app that has both word prediction and voice output. I also  communicate by using good, old-fashioned letterboard pointing. If I had not been taught to point to letters or to type without tactile support, many people would never have realized that my mind was intact.
My childhood was not easy because I had no means to communicate at all, despite my 40 hours a week of intensive ABA therapy. I pointed to flashcards and I touched my nose, but I had no means to convey that I thought deeply, understood everything, but was locked internally. Meticulously collected data showed my incorrect answers to flashcard drills, but the limitations of theory are in the interpretations.
My mistakes were proof to my instructors of my lack of comprehension or intelligence, so we did the same boring, baby lessons year after boring year. How I dreamed of being able to communicate the truth then to my instructors and my family too, but I had no way to express my ideas. All they gave me was the ability to request foods and basic needs.
Here is what I would have told them if I could have when I was small. My body isn’t under my mind’s complete control. I know the right answer to these thrilling flashcards, unfortunately my hand isn’t fully under my control either. My body is often ignoring my thoughts. I look at my flashcards. You ask me to touch ‘tree,’ for example, and though I can clearly differentiate between tree, house, boy and whatever cards you have arrayed, my hand doesn’t consistently obey me. My mind is screaming, “Don’t touch house!” It goes to house. Your notes say, “Ido is frustrated in session today.” Yes, frustration often occurs when you can’t show your intelligence and neurological forces impede communication between mind and body and experts then conclude that you are not cognitively processing human speech.
In my childhood I feared I would remain stuck forever in this horrible trap, but I was truly fortunate to be freed when I was 7 when my mother realized my mind was intact, and both my parents searched to find a way to help me communicate without tactile support.
Thousands of autistic people like me live life in isolation and loneliness, denied education, condemned to baby talk and high fives, and never able to express a thought. The price of assuming that nonverbal people with autism have impaired thinking is a high one to families and to people who live in solitary confinement within their own bodies. It is high time professionals rethought their theories.

Autism and the Challenge of Rapid Motor Planning and Initiation in New Situations


My high school has an old farm because it has a magnet program for intensive studies in veterinary science and agriculture. It is really nice because the students care for the animals. Over vacation we have to feed them. There are rabbits, hens, sheep, goats, a horse and a llama. The goats are intelligent and eager to escape to eat leaves. They have the same lock the sheep have on their pen. The sheep can’t open it but the goats open it with ease. To stay in, they require an additional chain and clasp lock and if it isn’t on just right, they escape.
Today was my turn to feed, water, clean and exercise the animals (that is, I exercise and clean the horse and feed and water the rest). We went to give the goats fresh water and in a flash they opened the gate and rushed out to eat leaves. They group up and run away and resist you too so it can be a struggle to get them back in, and the first ones you catch only want to escape to get back to the leaves and their friends.
I was watching this because I was with my mom who asked me to help her with the gate. I am able to do everything I need to do, more or less, but it felt frustrating today because I saw that I still react so slowly in a moment that required speed. I knew I needed to move fast because she had a goat at the gate and didn’t want to lock up the gate completely since there were more she had to put back in the pen. They struggle to get back to their leaves with great intensity and it is a pain to hold a struggling goat with one hand and fumble with a lock with the other.
Autism is an initiation disorder too. I see where I should go and I stay frozen. Doing new tasks is tough because our bodies need to learn the steps. The steps in this moment would be clear to a neuro-typical body, but not to mine. Though my mind knew what to do, it just wasn’t ready to react in time. This is frustrating personally, but perhaps even worse is that our difficulty initiating certain responses confuses many specialists who then assume we don’t understand logic and basic problem solving.
It isn’t the thinking that’s the problem. It is the ability to react and follow our thoughts that we struggle with. I see my skills have improved, because eventually I got to the gate and held it against goats pushing with all their might to escape again. In the end, we got them all back in. Maybe next time we should let them out on purpose so I can get more practice reacting to emergency situations more quickly.

Forgiving My Neurons

How do I forgive my body? Stupidly it refuses my wishes time after time. My mind says, “Stop!” It has to go, hurtling into its own internal, impulsive deeds. What can I say? Autism is a really big challenge at times. It sometimes gets easier and I hope that is the trend, and then, out of nowhere, some new order is established. I must do what it says. My will is taken over by a body with its own mind.
I learned from hard experience that I have to fight it with all my might. I decided long ago that I would not be a slave to impulses that ruin my future, my present, and my happiness. However, I am not always sure or able to defeat the impulses. This makes me get really sad and start to hate my body, my neurons, and my trapped self. It is harder to fight impulses in a depression.
Now that I have moaned and whined, I must decide what to do. Can I give in or quit trying? Never. I must keep thinking that I will have the guts to keep on, even if it feels overwhelming. It is pointless to hate my body and neurons because I let them trap me in self rage. 
My body is not at fault. It is trapped too. My neurons aren’t at fault. They don’t hurt me on purpose. This is a crime with no criminals. I think I must let go of my frustration and anger. Wishing I wasn’t autistic may truly be the recipe for misery. My mind is free, my body strong, and my soul can fly.  If I let it go I can find peace inside. I must love my body as is. It is part of me, though I may not always feel that way, I will get no other. I may as well love it and get hope rather than hate it and get angry.
I think anger is only worthwhile if channeled to fix things. My anger was just a mass of resentment and fury. That is pointless and destructive. I am spiritual and I am sure God loves me as I am. If God can love me with autism then I can do no less.

The Mind Body Connection, and Exercise

This morning I was edgy. My electrical currents were coursing through me. In Autismland that means either do stims or temper. It is a stressful time for me and it is hard to be calm, but I can’t freak out just because I’m stressed. This is what my family did to help me: first I worked out with weights. I complained non-stop. Then my mom insisted I go on the treadmill. I lasted fifty minutes including running on and off. It is amazing. I feel normal now. 
This summer we have decided to concentrate on fitness because my body needs to listen to my brain better. If I could have a trainer every day, how would I improve? I wish I could do that, but we have to work out even without a trainer because it is important that autistic people wake their mind/body connection. It is not do-able if the person is not using his body in exercise ever.
I recently hiked with many autistic people. It was short. Maybe a mile, but it had a hill at the start. I saw many turn back after five minutes. They were not used to moving enough. My new goal is to get fit this summer and see if it helps my brain too.