I'm sure some of you may have seen this but I thought I would post
it for those whio have not. With the holidays moving in, this may
help some of you...
This article appeared in the holiday 1999 issue of ASAP News!
(Volume 3.5) The Autism Support and Advocacy Project, and Potential
Unlimited Publishing.
"Dear Family and Friends:" was written for the purpose of it being
sent to relatives and hosts of holiday gatherings who might need a
crash course in what to expect from their guest with autism.
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 hard.
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 can not 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 oral motor 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 please 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 over protective, 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!