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).

 

 

32 responses to “Motor Difficulties in Severe Autism

  1. Ido,

    Thank you so much for sharing this essay with us. My friend shared it on FB and I was compelled to read it.

    I learned so much from you.

    Your capacity to share and describe your lived experience is such a gift and countless lives will be positively influenced because of you.

    I am an instant fan.

    Thank You, Igo.

  2. dear Ido
    Thank you for your perseverance, clarity, and advocacy! I run a school
    And social/communication based program in NYC. Atlas school/foundation for autism. We would be honored if you could a) come tour our school, meet our students, and help us better ensure their integrity through education and safe sensory friendly experience. Also wee would love to host a meet and greet or book signing! Please feel free to be in touch and please know you are so appreciated!
    Best
    Amanda

  3. I think Scientific American might be open to a piece like this, incidentally.

  4. Thanks for sharing this. As someone on the Aspergers region of the spectrum, I’ve been lucky enough not to be as impacted, but I do have versions of these very same issues. This is a wonderful personal essay showing the depth of your humanity.

  5. Thank you so much! My work at USC is precisely based on your accounts, my 15 year old nonverbal son, and over 400 of my patients and students over 20 years. My book and research is near publication. I would love to talk or quote some of your work. Feel free to email me anytime. God Bless!

  6. Dear Ido,

    Thank you thank you for sharing your story. I work with autistic children and most cannot speak or communicate in a way that others can understand. I work with them in a dance room. I use Autism Movement Therapy® created by Joanne Lara and if you haven’t met each other, maybe you should. I follow your recommendations in class. It helps me so much.

  7. Hi Ido,
    I read your book to my daughter, Katrina. She is 41 years old. We started using RPM from Soma’s books this past summer. Katrina has begun communicating independently on a letter board. Finally I’m able to see how she thinks. It’s a great gift to us both. Your book helped a lot, in giving us the courage to try RPM. Thanks so much!

  8. I found your essay through Facebook also.

    My grandson, Elliott, has autism and is 7 years old. From your essay and other entries I have read this morning, I am able to understand him a lttle better. My passion is to advocate for him so he can have a fulfilling life. Elliott, I believe also is trapped by his inability to communicate well.

    Thanks for describing the need for physical fitness, he likes the playground, and seeks activities that his motor skills are not developed for success, yet we do not discourage him, and I will continue knowing this is important.

    Thank you for helping me understand the motor difficulties in autism.

    Kathy

  9. Ido – You are incredibly eloquent. I admire your awareness and astute ability to communicate your experience with us. Thank you for your recommendations. As an occupational therapist, I particularly love that you included encouraging people with autism to participate in physical fitness! Please keep writing, our world needs you! Warmly From My Heart, Marci*

  10. Dear Ido,

    You are such an awesome trailblazer in the world ! I read your book two years ago and it changed my life forever!! I have a 6 year old son who deals with very similar challenges in life. You have been a light in the dark for us. We are using RPM now. Thank you for writing about your experiences through the looking glass of life with autism, you are a true inspiration.

  11. I can’t wait to read your book. I had open brain surgery for an aneurysm and had same symptoms fir about 7-8 yrs. i was lucky most of the problems left me but not all. Keep plugging away. Your book will open the eyes of most people and of course some will never see. I was verydisappointed in peoples reactions. Keep working on it. You have lots of courage things are changing all the time. Hopefully things will improve for you. My heart goes out to you. Best always.

  12. Thank you so much for this! I have a wonderful 10 year old grandson , Luke , who has autism. He has learned RPM and it has been a miracle in his life. I always knew that he was smart, but he is basically non verbal and it was hard to demonstrate. Now he is working far above grade level and I marvel at what he is capable of. He is self taught and knows how to spell complex words, uses correct sentence structure , and knows his times tables . He never forgets anything he has learned and his mind is always hungry for knowledge. He is intensely spiritual and expresses how much he loves those around him in his writing. The professionals are fools if they really believe that autism equals intellectual impairment. Keep up the good work. Teach us all.

  13. Pingback: A re-blog – Motor Control in Autism | 0ne Word At A Time

  14. I am really delighted my efforts have been making a difference. My hope is a new way of educating people with autism. It isn’t easy having autism but I hope one day a better understanding of the neurology will lead to improvements in treatment. Thanks to you all for your support.

  15. Amy Butterworth

    This is brilliant. I try to persuade everyone to read your book, but not everyone ‘has the time’. Everyone should have the time to read this though.
    I echo what others have said that your book was a life changer. I knew something wasn’t right about what I had been told about autism, but I couldn’t work it out. Luckily I didn’t stop looking.

  16. Pingback: Autism Corner: Motor Difficulties in Severe Autism | PediaStaff Pediatric SLP, OT and PT Blog

  17. This is a very insightful piece. As a pediatric physical therapist, I frequently read research on autism and motor development/skills. Your expereinces with a lack of motor control is very interesting. This paragraph is enlightening “… 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”. Sharing this post on Facebook so more pediatric OTs and PTs can read your perspective.

  18. Dear Ido THANK YOU so much for these insights. The message is powerful. Sharon Blount

  19. Hello Ido,
    I have worked with Autistic children in the past and in my experience the skill is to tune in and respond normally, the insights you give are priceless and wow how elated and happy your brain must have been to be able to express your inside story, and what torture you must have experienced not being able to respond motoricly to what your brain was emitting…..I will read your book, bless you for taking the painstaking time to tell us your story, you are phenomenal, keep telling us,
    thank you soooo much.

  20. Jungja Park Cardoso

    Hello Ido,

    I have been reading blogs written by individuals on the spectrum and found your posts very insightful and relevant to my research on autistic adults and their beliefs and practices involved in growing food, going grocery shopping, cooking and eating food. Please let me know if you would mind if I quote some of your blog posts in my dissertation. I’ll follow your copyright rules.

    I also would like to invite you to participate in my research that investigates how autistic adults with different conceptions of autism negotiate and navigate the food environment. I’m particularly interested in learning about how certain environmental settings and situations are considered problematic or supportive in relation to everyday foodways. All information that is collected about participants will be kept confidential. Participants will be entered into a raffle to win one of twenty $25 e-Gift Cards. Once I have completed my study, I will share an electronic copy of my research findings with research participants.

    The research consists of two phases:
    1) Online Survey (20-30 minutes) (Closure date: December 14, 2015)
    2) Online Interview or offline Interview (1-2 hours) (optional).

    Your participation will contribute to a greater understanding of a food environment that is friendly to autistic adults.

    This study has been reviewed and approved by the City University of New York Institutional Review Board (IRB). (Protocol #: 2015-0724)

    If you (or someone you know) are interested in learning more about this study, please contact me:

    Jungja Park Cardoso

    E-mail: JPark1@gc.cuny.edu

    Or visit https://survey.gc.cuny.edu/s?s=4044

    Thank you!

    Sincerely,
    Jungja

    Jungja Park Cardoso
    Ph.D. candidate, Environmental Psychology
    The Graduate Center, City University of New York
    365 5th Ave New York, NY 10016

  21. Fernanda Almeida

    Dear Ido,
    I also have to thank you for sharing your essay, it has given me and my husband a new energy on how we see our daughter´s autistic behaviors. Thank you again! We are from Brazil and I wonder if you would allow us to translate some of your essays so other parents can have the oportunity to be inspired by you as we are. Hope you can give us good news!
    Sincerely,
    Fernanda

  22. Hi Fernanda,
    Yes you can translate essays. Please share them with me and I can share on my Facebook page also (idoinautismland). There is another mother from Brazil who also has translated a few essays. Hopefully one day my book can get translated into Portugeuse.
    So glad what I wrote has been helpful to you and your family.

  23. Hi Ido, Great post! I care for a guy like you who can type with very little support (two fingers lightly touching his leg). I am teaching him (Rayan) to type like Ethan Shkedy’s mother taught him so that he is independent. I am also asking Rayan to do more things now.. and have noticed considerable improvement in his ability to control his body. The other day I asked him to go into the kitchen and get me the ipad, and he did. You are doing a great job in raising awareness that the non verbal group are intelligent, thanks.

  24. This article is brilliant. My daughter has autism and is
    verbal, however much of what you have said
    applies to her as well. She is brilliant and creative
    much like yourself. Kudos to you for finding your
    voice and helping to educate us all! You are going
    to enhance the lives of so many with your work!
    Please keep writing! God Bless!!

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  26. Hello Ido,

    When I read your essay I was really shocked at how much it resembles my son, who has Autism and is non verbal. He has been communicating with pictures using the Proloquo software and is now spelling on a letter board, but only with his therapist and with my wife. Therefore, we are having the situations you mentioned at school, where the teachers thinks he doesn’t know or doesn’t understand just because he doesn’t do what asked ten times out of ten. I imagine if somebody asked me the same question ten times; after the second or third I probably would be mad or just ignore the question as he does. Thanks a lot for sharing and I can’t wait to read your book.

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  29. Hi Ido,
    I have two sons on the spectrum, one is 5 years old and the other is 3.
    I am very inspired by your story and hoping to help my sons out from their isolation. My older son has been in an intensive ABA program for more than 2 years and is making minimum progress. It breaks my heart to watch him in the ABA program because he cannot enjoy a normal childhood. In my mind, I believe he knows all the knowledge and just doesn’t know how to communicate.

    I am so inspired by your story and would like to try RPM but just wondering if my sons seem to be OK with their fine and gross motor skills. (They can use spoon and going up stairs by themselves.) Will they still have the mind-body disconnect?
    Thanks and regards,
    Amy

    • Hi Amy,
      If they can’t talk or hand write, there is a disconnect. I climbed stairs and used utensils too. That’s not the issue. The issue is so much more. It’s the ability to communicate your ideas, to go to school and do your classwork, and to play normally. If you believe he knows more, is trapped internally and is stagnating in ABA, then please have the confidence to check out RPM.
      Ido

  30. Hi Ido,
    Thank you for taking time explaining the mind body disconnect to me. Now, I know what I must do.
    Thank you so much for speaking up for kids on the spectrum!
    Amy

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