Theories that Bind Us

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.

12 responses to “Theories that Bind Us

  1. Very insightful and well written…
    Thank you.

  2. Arthur Golden

    My son Ben (43 year-old with nonverbal autism who has used his type of Facilitated Communication for over 20 years) and I agree with your diagnosis of the problem. Ben and I are interested in treating the problem but we realize it will require a worldwide group effort to do so. Anyone who wishes to join with us can contact us at golden.arthur@gmail.com

  3. We are growing old while our children are growing up.
    Time is a precious gift of life and before we realize our children have become grownups and reached a stage where it becomes even more difficult to make a difference in their lives.
    Things that once was really important has now become nothing more than a memory, memories quite often accompanied by a feeling of regret in wondering what we could have done differently if only we took the time and effort.
    As we speak time is running out for millions of parents caught up in desperation and regrettably so.
    For just as many that time has already became a memory of guilt.
    For this very reason I would like to raise a very important questions not based on emotions but on the factual realities thereof.
    Being concerned about autism for the mere fact of reading this; do you truly believe, despite all of the advancements that neuroscience and all relevant research that has been made so far, is on the verge of making a profound difference in the lives of the autistic community in the very near future?
    Do you believe that neuroscience can truly say that they have a fundamental understanding of the true nature and logic as to how our minds work?
    I believe that the answer to these two simple uncomplicated questions is quite obvious and has been so for a very long time.

    MY MESSAGE TO THE AUTISTIC COMMUNITY.
    I’m different and proud of it and won’t change it for the world.
    The time has come for people such as yourself to realize that you are all unique, serving a greater purpose towards a greater cause, all for the betterment of humanity.
    As such the question that you should ask yourselves is this!
    Are you really the ones being different from not conforming to the norms of society?
    Can you any longer allow yourself to be thought of as being an inferior and lesser person, but then especially thinking such of yourself?
    I beg to tell you, No! No! No!
    You are all unique; you are the fortunate ones having attained immunity against the similarities of the minds.
    You are the ones critical for the conservation of humanity.
    You are the ones responsible for the creation of new concepts of thought.
    You are the ones responsible for the uniqueness and diversity among our species.
    You are also the unacknowledged ones whose ideas are being bled dry by the parasites of society.
    Raise your heads with pride for whom and what you really are. You are living on the edge of a very narrow dividing line between the so called normal and being trapped on the other side of life.
    Sadly so, there are also some individuals on the far extreme of being different. They are the ones paying dearly and for this very reason they are the ones that should be cherished and appreciated for giving true meaning to life itself. They are the ones paying the penalty for keeping us on track, evolving us towards higher levels of consciousness.
    Being different, rendering people such as you capable of walking the edge is exactly what prevents this world from stagnating into a meaningless loop of similarity.
    “Einstein”, as with the likes of many others before himself, have been no different from who you are.
    They are the ones responsible for what society have achieved.
    They are also responsible for the way that society thinks, behaves and responds.
    So can you! It’s up to you to take control of your abilities, let go of being perceived to be inferior when you’re not, but then especially so in guarding against thinking such of yourself.
    In essence being unique you are a superior being capable of achieving what others cannot no matter how hard they try. Without people such as you the world would literally stagnate, folding back onto itself becoming meaningless in less than a few generations.
    Being normal can only serve to limit your experience of life itself, living on the safe side of the edge, but then only to be caught up within the constraints of the norms and mindset of society.
    Think of it like this.
    If the mindset of each and every single person on this planet could be transformed into a book, then there would be billions of similar copies becoming meaningless despite being perceived otherwise. As such, you only need to read one to know them all, having similar mindsets, thinking in similar ways, inevitably leading to similar outcomes.
    Think of yourself as an exceptional book embracing the title of “Being Different” which is a far cry from the similarities of books entitled “Normal”.
    Without these critical indifference’s among our mental abilities we would certainly not have been capable of progressing as a human race.
    Being human is that which liberates us from thinking and living like animals.
    bushy@transparencing.com

  4. Ido, your social conscience is a national treasure.

  5. Hi Ido,
    My name is Andy. I am the webmaster for Saved By Typing, a social, training, and support group for typers and their families in the Indianapolis, IN area. I am very impressed with your blog and the videos of you typing. With your permission, I would like to create a page for you in the Typers section of our website, on which I would include a brief profile, a few of your videos, and some examples of your writing. I would not be reposting your blog posts; rather, I would excerpt and link back to your site.

    I think you might be interested in checking out AuthenticJohn.com, the site of John Smyth, the son of our co-founder and Program Manager, Jim Smyth. John is a prolific writer of essays, reviews, and poetry, and we are getting ready to publish his first book, From Autism’s Tomb. If you would like, we could even provide an advanced copy for you to read and, hopefully, review.

    In conjunction with the book’s release, we will be adding a Library/Bookstore page to the SBT website, and would be happy to list your book.

    SBT also periodically holds group video hangouts for typers across the country to keep in touch with each other. You can find out more about the hangouts, and other events we hold, on the SBT website if you are interested in joining in. It’s always great to make new friends from new places.

    I look forward to hearing from you and, hopefully, welcome you to the growing Saved By Typing family.

    Andy

    • Hi Andy,
      That sounds great. I love that more people are speaking out. I will be posting new films soon. Mine are years old.
      I can email you if you like.
      Ido

  6. Ido,
    My name is Mallory and I am a college student on the path to becoming a special education teacher, and hopefully one day an autism therapist. I just minutes ago finished reading your book and was compelled to reach out to you. I have been lucky enough to be a camp counselor for a few different individuals with autism and your outlook on life as a person with autism has forever changed the way that I view these kids. Not being someone with autism I know that I could never fully understand your struggle but I hope to impact the world of autism and make this a better world for verbal and nonverbal people with autism. I hope that one day I can do for others what Soma has done for you by helping you gain communication. If you and your family ever find yourself in the state of Kentucky I hope that I can come hear your speech. Best wishes.
    A BIG fan.

  7. laurence le blet

    Hi Ido,
    I would like to know if some researchers had tried to ask You about motor issues and looked forward mind body disconnect ´s solutions . Except Elizabeth Torres ´s Lab. , I can ´ t find any studies about body control issues/ intact intellect in non verbal autism. (Researchers must be engaged in paradigm first .) Thanks
    laurence

  8. Thank you Ido for this post. I sometimes struggle with the path I have chosen for my son. I needed to be reminded why I chose it and I remembered reading this post last month. I often find myself revisiting your work and seeing something in it that I did not spot on the first reading.

    When will people start to talk about the mind body connection issue. We are in the UK, and it is not even mentioned as a side issue, let alone a central issue we were refused physio and OT on the grounds that any issues my 4 year old had with control of his body were behavioural.

    • here people are beginning to pay more attention to this. I will be posting soon on what kind of exercise I have found helpful. Since your son is so young I encourage you to get him used to exercise, even if you do it on your own.

  9. Pingback: Saved By Typing | Non-Verbal Communication For Individuals with Autism | Growing Old While Our Children are Growing Up

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