Tuesday, May 19, 2009

Welcome to My World

Welcome to my world. You have no idea how freeing it is to say that. My whole life has been a separation of worlds. It is the crux of the autistic experience. Who I am, my molecular make-up is not that of a neurotypical person. You try to make birds of flying insects with us; both have wings and fly, but they are entirely different animals. To treat me as a like species robs me of my own unique identity. I am not saying that we should not be developed; it is how you develop us that is at issue. To try to make me into the mold of a neurotypical person is not the answer. You expected a robin, but were gifted with a butterfly. Both are beautiful in their own right. Autism is like the caterpillar. You don’t know what to do with him, how to care for him. Instead of feeding and nourishing him, you treat him like a bird - and in doing so you feed him to the birds.

To teach an autistic you need to understand autistic development, not neurotypical development. It is not the same. Experts argue over what skills need be developed first. There is a huge population of autistics for whom skills are not the appropriate measure of application. Autists are sensory beings. Skills build upon an underlying sensory experience. Absent the prerequisite connections, the skill can not develop. To teach is to understand the prerequisites to learning. It is a bit like trying to understand the elements in absence of understanding molecular makeup. Only once you understand the parts: electrons, protons, neutrons, can you see their interrelatedness.

Forming an understanding of autism requires first an understanding of sensory processing. The senses give meaning to outside stimulation. There are many, many interconnections. To process correctly is to see none of them, so automatic are they. Only in the failed processing do you gain insight. That is my value. Mine is a failed process. To see and understand my limitations of functioning is to provide small insights into how the senses actually work, connection to connection. Once you can see the pieces, how skills process becomes the topic of conversation. This is the level of analysis that needs to be taking place in autism treatment. It is the missing component. In order to teach a skill the question that need first be answered is “Does the child have the prerequisite sensory connections to support that skill’s processing?” Failed Skill sets can tell you underlying processing. Why is it important? Because to fail to see the underlying processing issue is to fail to teach around it, or bridge for it, or adapt for or accommodate to meet it. To realize the deficit is to be able to teach. To fail in it is to place unrealistic expectations on the child. In the extreme, it rises to the level of literal torture of the child. I was tortured by behavior modification therapy. I lived a life of hell. I developed fear to point of overwhelming because of it.

It is not the intended lesson, but the actual lesson that molds the child. It is not what you intend to teach, but what you actually teach that matters. As an autist and child I depend on others to do what is best for me. My others failed me miserably by initially following what is the normally prescribed method of treatment, ABA.

Use of ABA has its place for some, but not with the severe sensory dysfunctional child. It was known my senses did not function properly. I had a sensory integrative evaluation that told my experts this. The OT’s knew I had poor awareness of my body in space. Yet the impact of this was never considered for programming purposes. They looked at what I could not do, but never attempted to reason why it should be that way.

Do not fault my experts. They are notable experts. It is the prevailing view and approach we are talking about here. Focus currently only goes as far as the skill sets, what a child can and can not functionally do. Skill sets can be used to identify underlying sensory processing issues. To know a child has poor body awareness in space should raise a red flag as to any skill requiring movement directed responses. Touching head, whether in imitation or in response to a responsive language drill becomes difficult, if not impossible, for the child who can not feel him/herself as a physical form. Moving things to any relative position (in, on,under, behind, etc. ) presents like problem. Hence, I could copy to put a block in the bucket, but could not move an object into position in, on, or under something. Putting it in the bucket had a single end point for me, so did placing an object on a spool. “Moving things " in, on, under” requires relative positioning. I could always do “in”, but to repeatedly answer correctly amid other wrong answers hid that understanding.

Moving self to a position would be completely impossible. I didn’t know that I was, let alone where I was. Direction requires a starting point to reference from. Eventually I learned to use others and things as end destination points instead. I would move to places not from places. I move to go across the room by aiming at the door or window. Moving to go to an object is much easier than moving to an area of open space. It is an identifiable something to direct to. Open space is without direction. Even with an action it is easy to get lost.

What is “finished” is often cued by directional understanding. Attending to whether I am creating or disassembling something is a secondary cue for me. I think it is a dominate cue for others, but not for me. You use as dominate what you attend to first. For me direction is always a dominant consideration. It is like air to breathe, a necessary attention. But attending to it, in the sense of recognizing the need for it, whatever “it” is in any given circumstance, does not mean I can successfully achieve a sense of it. One can achieve “it” in many different ways: through developing the actual senses, through adapting presentation so as not to require “ it” , through accommodation of materials so you can do “it, achieve “it” a different way, or by bridging “it”, as my mom says. I’m not quite sure all that entails or how she does that other than to tell you I do end up with the skill in end.

It should also be mentioned that a skill is not a skill at all where it is not “generalized” as the experts call it. In simple terms, what you are seeing is not what you think. By example, to match things to shape as I learned to do is not to match things in the context the ABA program was conceived in. Every failure teaches, or should teach, the teacher something. You fail to learn from the errors because you have no understanding of their individual and paired significance. My experience will hopefully provide a look inside at least to a small part of it. If I can provide you with an aha moment, what my mom calls them, perhaps you will be motivated to search out others on your own. Small understandings can often grow into larger ones. It is my hope.



  1. Thank you for writing this blog. There is so much deep insight in your writing. I am an OT who uses an SI approach and I work with children with autism. I am trying to understand better. You write "you need to understand autistic development, not neurotypical development." Models such as DIR (floortime) simultaneously consider sensory processing, motor development and social/emotional development. But the developmental sequence uses neurotypical development as a model. Do you think that this model is inaccurate or incomplete? Do you think there is anything we can do to make it better? Thank you so much.

  2. I am not equipped to answer your question because I do not share the neurotypical experience. Even now, much of what I do, how I function is through circumventing the faulty. I have learned accommodations that work for me. To aim to develop neurotypical connections, this is fine to me. BUT to do this you need to understand each child's individual starting point. I am guessing neurodevelopment may involve far more pieces than can be seen by the neurotypical evaluator. Like quarks, tinier components may exist on breakdown. How long did it take scientists to realize their job did not end with electrons, protons and neutrons. Probably a failed attempt at something shed light there too. It may not be so much an issue of our having different development so much as an issue of there being additional pieces of/to development that currently go unnoticed by neurotypicals largely because their systems do it automatically.

    Vision is light then form then focus then identity. And I know the addition of color affects processing for me as does movement. Your experience is you probably just "see".

    Only in the problems is the process explored and revealed. I think development is like that too. The problem is our problems create meaning deafness. Only when some like me start to succeed and make it into the world will learning take place for everyone, evaluators and children alike.

    Let me say too thank you for reading me. I hope it helps.