Holiday letter for Relatives and Friends of people with Autism

[Guest guest]

Thanks to Donna for this e-mail, this is great to read to try to

understand. Love, Audrey

Holiday Letter to Relatives

FYI

HOLIDAY LETTER TO RELATIVES TO PROVIDE INFORMATION

ABOUT YOUR CHILD AND AUTISM

" Dear Family and Friends: "

This was written for the purpose of it being sent to relatives,

friends, and hosts of holiday gatherings that might need a crash

course in what to expect from their guest with autism. This letter is

written as if the autistic individual person is writing it personally.

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, a hidden disability called autism, or what some

people refer to as a Pervasive Developmental Disorder (PDD),

challenges me. Autism/PDD is a neurodevelopment 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.

Thanksgiving & Christmas is one of the roughest holidays for me. With

large crowds and holiday shopping it can be very overwhelming, even a

bit scary. When planning a party remember that with my over sensitive

hearing and eye sight, Christmas trees and holiday smells can cause

me mild to severe pain or discomfort. If the noises are impossible to

control a personal stereo with headphones set to a safe level for

children may help drown out background noise and ease my discomfort.

Sometimes I may seem rude and abrupt, but it is only that 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 cannot sit at the meal table, do not think I am misbehaving 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 is

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 kind-a-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 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, 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!

*Author, Viki Gayhardt

To add to this letter in case of special diets that help most of our

kids so much, if the diet is violated take the above behaviors and

multiply them x 100. Food allergies tend to manifest as extreme

behavior weather is self-injurious or aggressive and destructive, and

that's the case with my kids.

Happy Thanksgiving, Merry Christmas and Happy New Year! Love, Audrey