colesmom
Brady's mom too!
Member since 5/05 1989 total posts
Name:
Lea
|
"Dear Friends and Family" what to expect from your guest with Autism
"Dear Friends and Family" was written for the purpose of it being sent to
relatives and hosts of holiday gatherings that might need a crash course in
what to expect from their guest with autism. Article reprinted by permission of
editor/author, Viki Gayhardt.]
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 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,
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 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 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 parent's will handle the situation
the best way they know.
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 foods, 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 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 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- The grown ups call this
"perseverating" which is kind of like self-regulation or stimmin 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 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 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!
|
