Managing Autism - A Personal View

Joy at Joy’s Autism Blog recently posted this letter on her blog.  The idea is to use it to prepare your family and friends who you will be seeing over the holiday season (particularly those who you don’t see often - or who haven’t met your child before) about what to expect with your child who has autism.

It could be especially helpful to those who are new to the diagnosis.    

Thanks Joy for sharing!

    

It’s long but you can tailer it to fit your needs. Someone from the autism support group emailed this to me and will really come in handy.

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

This entry was posted on Thursday, November 29th, 2007 at 2:41 am and is filed under Resources, Coping with Autism - Strategies. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.