Body/Mind Disconnect & Soma

Many people are baffled when they meet Emma and hear her speak.  Their confusion increases when they read things she has written, like ‘this‘, ‘this‘ and ‘this‘.  How is this possible?  How is it that someone like my daughter can speak, but not accurately answer the question, “how old are you?”  Yet, hand her a laminated number board and she has no problem pointing to the number one, followed by the number two.  Give Emma a laptop computer and she will be able to type in the password, as well as type the name of an artist to find her favorite youtube videos, but ask her what she thinks about the Emily Dickinson poem #656 that begins with “I started Early – Took my Dog – And visited the Sea” and she will say nothing in response.  Yet, when I hold her qwerty keyboard that’s connected to her iPad, she immediately wrote, “You taste the ocean, but feel man’s pursuit.”

Emma wrote, “I can tell my totally impish body – Can you please sit still – and then it will do something different.”  Is this similar to the thoughts and ideas that she is able to write, but cannot speak?

In Soma Mukhopadhyay‘s newest book, Developing Motor Skills for Autism using Rapid Prompting Method she writes, “Autism is not just difficulty in verbal interaction; it is also difficulty in tactile as well as kinesthetic interaction…”  “Because of that, an Autistic person may not be able to adapt to new clothes, eat new food, or learn new movements, even though he may have perfect understanding about them.”  My copy arrived the day before Emma and I got on the airplane to come back out to Texas for another of Soma’s four-day camps.  I’ve been reading it whenever I have time, and highly recommend it.

One of the things Emma loves doing while out here is to have a skill building session with the lovely Rebecca Cooper every day after her last session with Soma.  Rebecca uses the techniques Soma describes in her new book.  So, for example, yesterday Rebecca showed Emma how to draw with a colored pencil several boxes, one dark, one light, demonstrating the difference in pressure to obtain such variations and then went on to discuss how light causes shadows.  They then drew a picture of a tree with the sun shining to its left, casting a shadow on the ground and along the right side of the tree’s trunk and branches.

As Soma writes, “The idea of writing this book came from a necessity.  Working with my own son Tito, I realized how his mind and body were disconnected.  As a parent I had two choices – support his physical needs throughout his life or try to do something about it so that his hands that flapped to stimulate kinesthetically also knew how to soap himself in the shower, clean himself, make his bed, fold his own sheets, and assist his thoughts to handwrite independently.”

Rebecca and Emma Discuss Lighting and Shadows

Rebecca and Emma Doing Skill building Exercises

 

 

27 responses to “Body/Mind Disconnect & Soma

  1. In consciousness studies, the mind-body issue (more specifically how awareness arises from the brain) is often referred to as “the hard problem.” How is this possible? How does “meat” become self-aware?
    The answer: nobody knows. It is one of the biggest unsolved mysteries of science, like dark matter. For me, how Emma’s consciousness relates to her body is “the harder problem” and the most important mystery I want to understand. Fortunately, we have Emma’s brilliant mind to guide us, and perhaps together, we can get closer to grasping what’s “going on” here.

    • Richard, I think that what we term “consciousness” is grounded in reflexivity. Where reflexivity has been naturally selected. Reflexivity being embedded in a process which sees us make use of all the capacity we have to read and ‘assess’ environment. The process having something of a pulse and echo nature. So, in that respect, bat-sonar is a good heuristic metaphor.
      We begin as a simple cell nexus, and we develop to the humans we are as we talk away on the internet. At each stage or moment along a continuum, we are what we are, and the pulse-echo/reflexivity dynamic does what is possible in and relevant to that stage or moment.
      I then look back at all this from a late-stage vantage point. In that late-stage, meaning-making intending to understand and make-way-in a complex interpersonal and societal and materialised world, seems the major thing. So I try to apply that template to earlier stages, so looking for earlier-stage meaning making.
      I then make a presumption, that the body is not “meat” but is embodied-being, is in some manner mediated (in part) by the meaning-making we do (in part) with our minds. There is then of course an effect from the body to mind; we think as we do because we are embodied.
      The really complicating factor is then social and societal. Convention and normativeness and culture and the whole manipulative-exploitative human dimension cuts in. Clear perception of whats going on, that could arise from myriad individuals, is compromised and confused across this perverse dimension.
      I then see autistically orientated and developing persons as being more ferally honest and clear (“more human” as my line-manager has said) about the meta-dynamics I speak to above. But, the above social-societal dimension will not allow autistic persons to make use of the awareness that they natively have. One way the dynamics of this can then play out, is what people are here speaking of as a mind-body disconnect.

      Autistic reflexivity can involve something like the Voyager transmissions. My writing what I have here sees me generate a self-expressive pulse. How that pulse is received and responded to by others determines what, if any, echo I get back. How I can continue into a next pulse, is affected by what happened to and around a last pulse. Ariane is then exceptional in fielding such pulses from autistic persons.
      When I get up on the plane of living out my own sense of things (and that will never last long because my views are always in tension with those of the powers-that-be in any situation), then my dyspraxic aspect and weak inhabiting of my body disappear. I sometimes look at this in terms of the Buddhist notion of the actionless-action, or transcending to the greater-self.

      Emma sends out exceptional pulses. These pulses emerge from how she is embodied, as much as they do from her ‘mind’. The reception and response these self-expressive pulses get, is wonderfully unusual.
      Even although even Emma is already at a late-stage in human developing, I believe that this nexus of reception and response to her self-expressive pulses, will stream into her embodying (body development) going forward.

      I then agree with Soma that an autistic person has to learn how to articulate in many dimensions. Dimensions holding across both body and mind.

  2. At least for me, part of the problem is in perceiving one’s body and mind as a whole instead of a collection of body parts being excited by impulses arising from seemingly unconnected thoughts and emotions. How does it all fit together? which impulses to suppress(If you can), which to act on. And if i’m able focus my mind upon a purposeful activity, there is still the problem of coordinating the movement of different body parts. I often can’t tell the position my body is in or how the movement of one part affects another. If I focus on moving with my feet, it’s hard to pay attention to what the hands are doing.Through what sequence does the body move from position A to position B? The body is a complex machine.

    • Ilja – would it be okay with you if I quote you during our upcoming Autism Conference presentation that Emma and I are presenting at? You’ve described something I’ve read others describe, so well here. No worries, if you prefer I didn’t. 🙂

  3. I wish I knew if these things worked for adults. Things having been increasingly frustrating in this department in both directions.

  4. On one of your visits you should drive 😉 AR is on the way to TX ya know. Ok so a day long drive doesnt sound fun to me either lol.

    I’ve found in some situations E is able to put his knowledge with his body, such as when I have to put drops in his ears…it used to take 3ppl and I hated having to hold him down, but it was necessary to get them in. Lately I have tried again explaining what I’m doing and why and eventually he mostly cooperates….soooo much better for both. Now if i could just extend that to dr visits and haircuts…he used to be decent at them as long as he had his ipad but no more.

    W my ADHD i can somewhat understand the disconnection, except for me its my brain and my brain…I have all these goals and intentions and then impulses kick in and i do stupid things that mess them up or leave them incomplete. Eg im a good worker and a good student, but cannot seem to hold a job or finish school because of attendance. It is extremely frustrating.

    • You know, I think it’s more than a day’s drive from New York City, I’m thinking more like three! But you are lovely to suggest it even so. 🙂

      I agree, preventative, detailed explanations seem to go a long way. Recently Emma wrote that she tells herself “keep cool, Emma” and that this has been helpful. I asked her if this was something she’d like me to say as well and she said, yes. When we flew out to Austin Monday we arrived early and sat on the runway for half an hour. This was stressful to everyone, but I reminded Emma to “keep cool” and we talked about how getting there early was lovely, but sitting on the runway waiting for a gate to open up was not. Emma was terrific and though it was causing obvious anxiety, she kept it together and was able to wait.
      Maybe your E. can help tell you what might be helpful to him…

      • I am not so patiently waiting for the day he can 😉 we’ve been working on typing words and so has his SLP. He can do it fairly well but rarely is able to initiate…have to keep reminding myself hes only 4…the fact that he can spell is impressive and i need to slow the heck down. Lol. I had intended to start doing short lessons w him but for the past few weeks he has been “off” so we havent…

        Ps i looked it up out of curiosity…just over 18 hrs 😉

  5. Marie Brennan

    Thanks for all of your insights. Katrina and I are starting a new thing. I am going to be her full time day habilitation facilitator. She used to go out into the community with other people while I worked, but now, she is going to be my work. (Thanks to a new company directing the autism waiver toward family caregivers.) I’m hoping with this plan she will get more practice with typing and together we will hopefully begin to sort things out.

  6. Thank you for all of this, but in particular the “impish body” sentence. I need to remember this with my youngest especially at this time of year. So glad you had this opportunity with Emma!

  7. Thank you so much for this post!!

  8. Hi,
    I think we’re in a similar situation. My son is 12, has autism and communicate through typing with computer and iPad. He also communicates through writing.
    He is unable to speak and has dyspraxia. I would love to know what you have tried and what works and what doesn’t work.
    We worked with an OT, SLP and Educational Consultant.
    I have been following your blog.

    Thank you,
    Fara

  9. I can relate to the mind-body disconnect Emma talks about in theory I know what one has to do to walk you get up and put one foot in front of the other but Cerebral Palsy doesn’t allow me to execute what I know I need to do to walk.

  10. When I was “coming out” from autism–don’t ask me why, but it was time–I described it as being a little spirit stuck within a rather large swampy body. And my light began to expand, energy went out through layers in my body, and it brought different skills and awarenesses. There was a time also when I was 10 years old after I had been working out extremely hard on the gym bars for hours each day on the rings and bars, that the spirit had expanded to every cell in my body, that I felt alive–but then there was a terrible accident where the equipment broke and I landed on the back of my neck (no mats)…and I was paralyzed for a few minutes. And after that as I was less able to move because I also broke the largest bones in my back, and no one knew because I never complained, I lost more and more of my outer layers of “self” to the dark side once again. I knew it was there, could mostly move it, but sometimes sat and stared uncontrollably. I really don’t know how or if or how much that changed the course of my autism, but I did not begin to come out again until I was 32.

    When researching, I found that the mid brain forms in a fetus by linking one cell with the next, and crocheting back on itself in a circle…this lattice forming an outflowing spiral is how I saw myself working. The inner spirit connecting with sensory, repair of the immune system was a huge part of being able to build this lattice upon which to grow also. No one ever realized that I was sick–and to tell you the truth, I never knew how sick I felt every day of my life as a child, until I had well days in my 30’s which began to string together into weeks. But, it did take years to be able to string one month of wellness together. And yes, because I began to write about all my experiences, in 1994 Dr. Rimland said I must not be autistic–although I had been diagnosed as classic autism, and in the mid bell curve (+10) on his E-2 rating scale. After that time, he was able to see other recoveries, but possibly through my introduction to him and the things I was trying to do for myself, more is available to others also today. I brought in the ideas around rubella, cytomegalovirus, neuro-immune connections, similarities to MS in physical function, and Alzheimer’s in mental function possibly with a “sundowning” on children…and most of these have been in research since that time.

    Meanwhile, I am 52 this year, and feel I am losing ground once again–I don’t fear going back, but the illnesses creep up silent and swift now, with infections that are hard to fight off and stressors on the system causing intractable muscle clinchers…it is as if I have seen the height of recovery and am slipping down the other side. My connective tissues are no longer staying connected, and as I do the minimum for myself because I am trying to “do” “out there” in the world, I am losing ground. And so I must go back inward, in order to preserve the outer, to keep connection to my body and all that around me. I need the ranch that I have been trying to start so others can come join in and be with animals and learn to preserve their selves from the inside-out…and it is still nowhere in sight.

  11. Pingback: For Emma: Words and Voices | tagAught

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