Microsoft Word Version
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
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