Friday, November 26, 2010

A Letter from an Autistic Child.

My nephew is Autistic.  He is also a most amazing little boy.  He struggles and it breaks my heart.  My brother and his wife struggle and it breaks my heart.  I wish making the world an easier place for him was in my realm of capabilities, but sadly, it is not.  I can only try to educate the other people in my life about what Sebastian and his parents go through daily.  With the holidays coming up I'm sure they are even more stressed than normal.  The letter below is written from the standpoint of an autistic child.  Please be patient and understanding as we enter into this hectic season. 

Tips for relatives and hosts of holiday gatherings who might need a
crash course in what to expect from their guest(s) with Autism.
Autism and Holiday Gatherings ~ Viki Gayhardt

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 have difficulty
making friends. We are all different and need various degrees of

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, like you would if you landed on an
alien planet and didn't understand how the inhabitants communicated.
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

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 5 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

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 with
chewing and swallowing that a lot of people with autism have trouble
with. I am not being picky -- I literally cannot eat certain food as
my sensory system and/or oral motor coordination are impaired.

Don't be disappointed if mommy 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! Temple Grandin, a very smart adult with autism, has taught
people that when she had to wear stiff petticoats as a child, she
felt like her skin was being rubbed with sandpaper. I often feel the
same way in dressy clothes.

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 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 in my
face, flap my arms 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 partaking in
an activity. The grown ups call this "perseverating" which is kind of
like self-regulation or stimming. I do this only because I have found
something to occupy myself that makes me feel comfortable, and I
don't want to come out of that comfortable place and join your hard-
to-figure-out-world. 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 a
while 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, preservation of your possessions,
and to facilitate my integration with you tippies (what we autistics
fondly call you neurotypical folk!) 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

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 tippies 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 tippy 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!


  1. Absolutely beautiful...and so needed. People have a difficult time understanding autism. This will help.