New to group

[Guest guest]

Hi all,

I am new to the group. My wife (Lise) & I (Dave)

have a 9 yo boy with aspergers, " diagnosed " at age 4. We've been

through alot including a psyc hospital stay for 3 weeks last year.

We are currently looking to adopt a younger sister for him. Any

feedback would be appreciated. I am attaching a great article

(you've probally seen before) for family & friends at gatherings:

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

sent to relatives and hosts of holiday gatherings that might need a

crash course in what to expect from their guest with autism. Article

reprinted by permission of editor/author, Viki Gayhardt.]

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 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 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!