Holiday Letter from local asperger/autism group

[Guest guest]

Thought this might be of interest to some here at this time of year.

FRIENDS AND FAMILY HOLIDAY LETTER

from

Asperger Syndrome and High Functioning Autism Association, Inc.

November 24, 2010

Greetings!

The letter, Dear Friends and Family, was written for the purpose of being sent

to relatives and hosts of holiday gatherings that might need a crash course in

what to expect from their guest with autism.

The article is reprinted by permission of editor/author, Viki Gayhardt.

Dear Friends and Family,

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 grownups 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 grownups 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 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!