Saturday, May 08, 2004

found a letter explaining autism

I found this online and it made me tear up, it is so perfect. I am thinking about sending it out to my family. I think it explains things pretty well to people who don't deal with a kid on the spectrum every day. It applies to holidays, butreally it is true of any occasion when people gather together and there is a lot of hubbub. Please tell me what ya'll think.

Dear Family and Friends:

I understand that we will be visiting each other for the holidays this year!
Sometimes these visits can be very hard for me, but here is some information
that might help our visit to be more successful. As you probably know, I am
challenged by a hidden disability called Autism, or what some people refer to
as a Pervasive Developmental Disorder (PDD). Autism/PDD is a
neurodevelopmental disorder which makes it hard for me to understand the
environment around me. I have barriers in my brain that you can't see, but
which make it difficult for me to adapt to my surroundings. Sometimes I may
seem rude and abrupt, but it is only because I have to try so hard to
understand people and at the same time, make myself understood.

People with autism have different abilities: Some may not speak, some write
beautiful poetry. Others are whizzes in math (Albert Einstein was thought to
be autistic), or may have difficulty making friends. We are all different and
need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me
want to run away. I get easily frustrated, too. Being with lots of other
people is like standing next to a moving freight train and trying to decide
how and when to jump aboard. I feel frightened and confused a lot of the
time. This is why I need to have things the same as much as possible. Once I
learn how things happen, I can get by OK. But if something, anything,
changes, then I have to relearn the situation all over again! It is very

When you try to talk to me, I often can't understand what you say because
there is a lot of distraction around. I have to concentrate very hard to
hear and understand one thing at a time. You might think I am ignoring
you--I am not. Rather, I am hearing everything and not knowing what is most
important to respond to. Holidays are exceptionally hard because there are so
many different people, places, and things going on that are out of my
ordinary realm. This may be fun and adventurous for most people, but for me,
it's very hard work and can be extremely stressful. I often have to get away
from all the commotion to calm down. It would be great if you had a private
place set up to where I could retreat.

If I cannot sit at the meal table, do not think I am misbehaved or that my
parents have no control over me. Sitting in one place for even five minutes
is often impossible for me. I feel so antsy and overwhelmed by all the
smells, sounds, and people--I just have to get up and move about. Please
don't hold up your meal for me--go on without me, and my parents will handle
the situation the best way they know how.

Eating in general is hard for me. If you understand that autism is a
sensory processing disorder, it's no wonder eating is a problem! Think of
all the senses involved with eating. Sight, smell, taste, touch, AND all the
complicated mechanics that are involved. Chewing and swallowing is something
that a lot of people with autism have trouble with. I am not being picky--I
literally cannot eat certain foods as my sensory system and/or oralmotor
coordination are impaired.

Don't be disappointed If Mom hasn't dressed me in starch and bows. It's
because she knows how much stiff and frilly clothes can drive me buggy! I
have to feel comfortable in my clothes or I will just be miserable. When I go
to someone else's house, I may appear bossy and controlling. In a sense, I
am being controlling, because that is how I try to fit into the world around
me (which is so hard to figure out!) Things have to be done in a way I am
familiar with or else I might get confused and frustrated. It doesn't mean
you have to change the way you are doing things--just be patient with me,
and understanding of how I have to cope.

Mom and Dad have no control over how my autism makes me feel inside. People
with autism often have little things that they do to help themselves feel
more comfortable. The grown ups call it "self regulation," or "stimming'. I
might rock, hum, flick my fingers, or any number of different things. I am
not trying to be disruptive or weird. Again, I am doing what I have to do
for my brain to adapt to your world. Sometimes I cannot stop myself from
talking, singing, or doing an activity I enjoy. The grown-ups call this
"perseverating" which is kinda like self regulation or stimming. I do this
only because I have found something to occupy myself that makes me feel
comfortable. Perseverative behaviors are good to a certain degree because
they help me calm down. Please be respectful to my Mom and Dad if they let
me "stim" for awhile as they know me best and what helps to calm me. Remember
that my Mom and Dad have to watch me much more closely than the average
child. This is for my own safety, and preservation of your possessions. It
hurts my parents' feelings to be criticized for being overprotective, or
condemned for not watching me close enough. They are human and have been
given an assignment intended for saints. My parents are good people and need
your support. Holidays are filled with sights, sounds, and smells. The
average household is turned into a busy, frantic, festive place. Remember
that this may be fun for you, but it's very hard work for me to conform. If
I fall apart or act out in a way that you consider socially inappropriate,
please remember that I don't possess the neurological system that is required
to follow some social rules.

I am a unique person--an interesting person. I will find my place at this
Celebration that is comfortable for us all, as long as you'll try to view the
world through my eyes!


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