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.