a letter from an Autistic child

[Guest guest]

I know there are quite a few new students with Autism Spectrum Disorders

that will be starting

at your school this year. I just wanted to share this letter I found

on-line with all the teachers and personnel that will be caring for

them.

I just love how this letter is written through the autistic child’s

perspective – this is a fabulous example of living with autism

everyday, not just the holidays, as this letter was originally intended.

Thanks for reading it when you get the chance - - please feel free to

forward it….

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 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. 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 some 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. I am really good at following rules, 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 and festivities 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 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. I may not like the feel of

your clothes next to me.

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. My parents 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 " stemming. " I

might rock, hum,

spin, flick my fingers, flap my hands, walk in circles, 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 " perseveration " which is kinda like self

regulation or stemming.

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 " stem " 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/typical child. This is for

my own safety, and

preservation of your possessions. It hurts my parents' feelings to be

criticized

for being overprotective, 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 and respect.

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!

Thank you.

-

www.walknow.org/newyork/teamsophieschoice

YM and AOL IM handle: LittleSmokes1978