10 things every child with Autism wishes you knew

[Guest guest]

Ten Things Every Child with Autism Wishes You Knew

Some days it seems the only predictable thing about it is the

unpredictability.

The only consistent attribute, the inconsistency. There is little

argument on

any level but that autism is baffling, even to those who spend their

lives around it.

The child who lives with autism may look " normal, " but his or her

behavior can

be perplexing and downright difficult. Today, the citadel of autism,

once

thought an " incurable " disorder, is cracking around the foundation.

Every day,

individuals with autism show us they can overcome, compensate for,

and otherwise

manage many of the condition's most challenging aspects. Equipping

those around

our children with a simple understanding of autism's most basic

elements has a

tremendous effect on the children's journey towards productive,

independent

adulthood. Autism is an extremely complex disorder, but we can

distill it to

three critical components: sensory processing difficulties,

speech/language

delays and impairments, and whole child/social interaction issues.

Here are 10 things every child with autism wishes you knew.

1. I am a child with autism. I am not " autistic. " My autism is one

aspect of my

total character. It does not define me as a person. Are you a person

with

thoughts, feelings and many talents, or are you just fat

(overweight), myopic

(wear glasses) or klutzy (uncoordinated, not good at sports)?

2. My sensory perceptions are disordered. This means the ordinary

sights,

sounds, smells, tastes and touches of everyday life that you may not

even notice

can be downright painful for me. The very environment in which I

have to live

often seems hostile. I may appear withdrawn or belligerent to you,

but I am

really just trying to defend myself. A " simple " trip to the grocery

store may be

hell for me. My hearing may be hyperacute. Dozens of people are

talking at once.

The loudspeaker booms today's special. Muzak whines from the sound

system. Cash

registers beep and cough. A coffee grinder is chugging. The meat

cutter

screeches, babies wail, carts creak, the fluorescent lighting hums.

My brain

can't filter all the input, and I'm in overload! My sense of smell

may be highly

sensitive. The fish at the meat counter isn't quite fresh, the guy

standing next

to us hasn't showered today, the deli is handing out sausage

samples, the baby

in line ahead of us has a poopy diaper, they're mopping up pickles

on Aisle 3

with ammonia. ... I can't sort it all out, I'm too nauseous. Because

I am

visually oriented, this may be my first sense to become

overstimulated. The

fluorescent light is too bright. It makes the room pulsate and hurts

my eyes.

Sometimes the pulsating light bounces off everything and distorts

what I am

seeing. The space seems to be constantly changing. There's glare

from windows,

moving fans on the ceiling, so many bodies in constant motion, too

many items

for me to be able to focus - and I may compensate with tunnel

vision. All this

affects my vestibular sense, and now I can't even tell where my body

is in

space. I may stumble, bump into things, or simply lay down to try

and regroup.

3. Please remember to distinguish between won't (I choose not to)

and can't (I'm

not able to). Receptive and expressive language are both difficult

for me. It

isn't that I don't listen to instructions. It's that I can't

understand you.

When you call to me from across the room, this is what I hear: " * & ^%

$#@, .

#$%^* & ^%$ & * " Instead, come speak directly to me in plain

words: " Please put your

book in your desk, . It's time to go to lunch. " This tells me

what you want

me to do and what is going to happen next. Now it's much easier for

me to comply.

4. I am a concrete thinker. I interpret language literally. It's

very confusing

for me when you say, " Hold your horses, cowboy! " when what you

really mean is

" Please stop running. " Don't tell me something is a " piece of cake "

when there

is no dessert in sight and what you really mean is, " This will be

easy for you

to do. " When you say, " It's pouring cats and dogs, " I see pets

coming out of a

pitcher. Please just tell me, " It's raining very hard. " Idioms,

puns, nuances,

double entendres and sarcasm are lost on me.

5. Be patient with my limited vocabulary. It's hard for me to tell

you what I

need when I don't know the words to describe my feelings. I may be

hungry,

frustrated, frightened or confused, but right now those words are

beyond my

ability to express. Be alert for body language, withdrawal,

agitation, or other

signs that something is wrong. There's a flip side to this: I may

sound like a

little professor or a movie star, rattling off words or whole

scripts well

beyond my developmental age. These are messages I have memorized

from the world

around me to compensate for my language deficits, because I know I

am expected

to respond when spoken to. They may come from books, television or

the speech of

other people. It's called echolalia. I don't necessarily understand

the context

or the terminology I'm using, I just know it gets me off the hook

for coming up with a reply.

6. Because language is so difficult for me, I am very visually

oriented. Show me

how to do something rather than just telling me. And please be

prepared to show

me many times. Lots of patient repetition helps me learn. A visual

schedule is

extremely helpful as I move through my day. Like your day planner,

it relieves

me of the stress of having to remember what comes next, makes for

smooth

transitions between activities, and helps me manage my time and meet

your

expectations. Here's a great web site for learning more about visual

schedules

http://www.cesa7.k12.wi.us/newweb/content/rsn/autism.asp

7. Focus and build on what I can do rather than what I can't do.

Like any other

human, I can't learn in an environment where I'm constantly made to

feel that

I'm not good enough or that I need fixing. Trying anything new when

I am almost

sure to be met with criticism, however constructive, becomes

something to be

avoided. Look for my strengths and you'll find them. There's more

than one right way to do most things.

8. Help me with social interactions. It may look like I don't want

to play with

the other kids on the playground, but sometimes it's just that I

simply don't

know how to start a conversation or enter a play situation. If you

can encourage

other children to invite me to join them at kickball or shooting

baskets, I may be delighted to be included.

9. Try to identify what triggers my meltdowns. This is termed " the

antecedent. "

Meltdowns, blowups, tantrums or whatever you want to call them are

even more

horrid for me than they are for you. They occur because one or more

of my senses

has gone into overload. If you can figure out why my meltdowns

occur, they can be prevented.

10. If you are a family member, please love me unconditionally.

Banish thoughts

such as, " If he would just ... " and " Why can't she ... ? " You didn't

fulfill

every last expectation your parents had for you, and you wouldn't

like being

constantly reminded of it. I didn't choose to have autism. Remember

that it's

happening to me, not you. Without your support, my chances of

successful,

self-reliant adulthood are slim. With your support and guidance, the

possibilities are broader than you might think. I promise you I'm

worth it.

It all comes down to three words: Patience. Patience. Patience.

Work to view my autism as a different ability rather than a

disability. Look

past what you may see as limitations and see the gifts autism has

given me. I

may not be good at eye contact or conversation, but have you noticed

I don't

lie, cheat at games, tattle on my classmates, or pass judgment on

other people?

You are my foundation. Think through some of those societal rules,

and if they

don't make sense for me, let them go. Be my advocate, be my friend,

and we'll see just how far I can go.

I probably won't be the next Jordan, but with my attention

to fine

detail and capacity for extraordinary focus, I might be the next

Einstein. Or Mozart. Or Van Gogh.

They had autism too.

Freelance writer and consultant Ellen Notbohm is a columnist for

Autism/Asperger's Digest and co-author of 1001 Great Ideas for

Teaching and

Raising Children With Autism Spectrum Disorders (Future Horizons).

She favors

" common sense " approaches to raising her sons with autism and AD/HD.

She lives in Oregon.

By Ellen Notbohm

South Florida Parenting

[Guest guest]

Here are the posts about this article from my group

(MakingPECSCards)

1. Date: Mon Dec 13, 2004 10:58 am

Subject: RE: [MakingPECSCards] Ten Things Every Child with Autism

Wishes You Knew

Just wanted to post a warning about this article, like the original

poster, I forwarded it to other groups, kept the entire article

intact as well.

However somehow someone seems to think I put it on a website, or not

giving the author her credentials, I didn't, and it wasn't my

intention. I thought it was a good article and thought other parents

would be interested. I simply forwarded the article after I removed

the header.

At any rate just be careful about forwarding this anywhere.

2. Date: Mon Dec 13, 2004 5:19 pm

Subject: Re: Ten Things Every Child with Autism Wishes You Knew

---Why???? Is it copyrighted?? I was going to share it what is the

reason I can`t?

3. Date: Mon Dec 13, 2004 5:24 pm

Subject: RE: [MakingPECSCards] Re: Ten Things Every Child with

Autism Wishes You Knew

Yes it is copyrighted. I was told that I can only give it out by the

URL or use the " email article " feature from the website its posted on.

http://www.southflorida.com/sfparenting/sfe-sfp-autism,0,6196233.story

this is the link, this is ok to give out, just not the story copied.

==========

This is the information I was talking about. An example would be look

at any website or PECS boards you buy on ebay that use the Boardmaker

symbols. They have to get permission to use this from Mayer-

and they have to input correctly the information. Ebay has strict

guidelines too and auctions have been pulled that did not properly

cite the source.

http://www.mayer-johnson.com/copyright/main.shtml

Knowledge is the key here and not to make light of someone else's

copyrighted material.

http://www.templetons.com/brad/copymyths.html

Bonnie

===============

> I wouldn't worry about it Terri. It's not like you changed what it

said and

> claimed it as your own. Geez.

>

> Anne

>

>