|
 What
is it Like to be Autistic?
by Brian Henson, a person with Aspergers Syndrome, 2004
For more articles like this
visit
https://www.bridges4kids.org.
As a way to try
and convey what autism and the autistic spectrum means to those
within it, I will try to describe an analogy that has been with
me, as a person on the autistic spectrum, for years.
This will require a lot of time and patience on the part of the
reader.
Imagine yourself in a totally enclosed room, of comfortable
size, and two large screens or monitors before you, one slightly
on your left, and the other slightly on your right. To the far
left and far right are two large speakers.
In front of you is a giant desk with tens of thousands of
control buttons that vary the views from the monitors and the
sounds from the speakers, as well as being the manipulative
controls for a huge malleable machine called a "body", which
contains the room that you are in.
With these controls, you can move this giant machine forward by
manipulating the lower supports known as the "legs" and "feet",
manage a huge number of manual controls on what we call the
"arms" and "hands", and do so many other things with these
controls of this machine that you are sometimes lost in this
metaphorical maze.
You get to know the controls very thoroughly, over time, in how
to turn the "body" around, sit it down or lay it down, and even
turn the monitors and speakers off while the "body" is relieved
of its burdens that you put through it every day.
However, there's one basic problem with this giant machine: You
cannot control very precisely the amount of input you get via
your monitors or your speakers, and often you feel as if you are
starting to go either blind or deaf or both. Also, you get
messages from outside sources constantly telling you (not asking
you) how to handle your controls on this giant machine.
As you place this machine in an upright, but relaxed position,
known as "sitting", you have the machine pick up a book
containing a picture that you would like to study through the
monitors, and you have your audio receivers tuned to some melody
that gives you comfort.
Suddenly, a message comes through the speakers: "Put that book
down right now, and get back to your assignment!"
This throws you into a tailspin, as you feel that you are
exercising your own self-control, when this outside source is
attempting to take away this self-control.
Why should you get back to what this outside source says is your
assignment when you have to search through your database to
determine just what was spoken to you, previously to this, in
determining your assignment? This altercation with this external
source cuts off the picture-viewing that you were just doing.
You are lost, and to add insult to injury, the monitor control
is taken away from you, momentarily, as two large video cameras
(know as "eyes") that some other giant machine has, are placed
right in front of your monitors, one camera for each monitor.
You ask yourself: "What do these cameras have to do with my
picture-viewing or getting back to my assignment?"
You try to turn your monitor control to the left, right, down,
or on some angle, so that you can have some other, albeit,
scattered view to let you get off the subject of these cameras
and on to what you were doing previously (looking at a picture),
or even to what the outside sources told you to do.
This leads the speakers to get into a much higher decibel
rating, with words coming though them that say "Look at me when
I am speaking to you!"
"Look at these 'cameras'?", you wonder. Again, you see no
connection between these cameras and the pictures that you were
looking at, or the assignment that you were told to do. You
start to turn on your screen saver to keep your monitor from
having the steady outline of these cameras moment after moment.
You have no idea of how long this might continue.
With the screen savers on, you still are overwhelmed by the
sounds coming through the speakers, and try to turn the volume
down. This only leads to more problems, in that you were
listening to that comforting music, but cannot hear it with the
lower volume.
You have no idea of what to do next, and start to hammer at the
control panel. This might result in moving the "arms" towards
the room you are in, to see if this is a problem in the
"imagination" of your computer resources. Also, you might turn
on a control that alternates your left (or right) hand up and
down, repeatedly, to try and show that you are attempting to
"fan" away the intimidation that seems to be surrounding you.
With things only getting worse, you are ready to open up your
own sound box, and issue words to your environment that say, in
fact more than fantasy, "Leave me alone!"
Many times, this does work, but many times it does not, and your
empirical responses are lost as to whether to do this again, or
to try something more emphatic next time.
One thing is certain: You would rather have this giant box, that
you are in, have full self-control of its manipulative and
malleable features, rather than have outside sources tell it
what it must do; when you have, seemingly, no say at all in how
other giant machines around you are controlled (however common
or "normal" the controls might be in these other machines).
Finally, one day, because of the methods you used to express
your own machine's autonomy over those who were constantly
trying to take control of your machine away from you, you are
told that your autonomous position resulted in a description of
your machine by these other machines. That description was
called autism.
You are probably saying to yourself, "What has self-control got
to do with autism? I was only trying to control my own machine
as best I could. Should I take this new label, of autism, as a
criticism or as a compliment?"
That is where you are today, still searching for your place in
this non-autonomous region of life where you still have one main
purpose: to exercise your autonomy with your own self-control.
Do you have any hint now, of what it is like to be autistic?
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