Dear Family and Friends

[Guest guest]

[ " Dear Family and Friends: " was written for the purpose of it

> being sent to

> relatives and hosts of holiday gatherings who might need a

> crash course in what

> to expect from their guest with autism. Article reprinted by

> permission of

> editor/author, 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 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 parents 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

> kinda 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 awhile,

> 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!