Saturday, September 24, 2005

Autism Article, Great Read for Everyone

My son, Hammer, has Asperger's Syndrome, which is on the autistic spectrum.  I know there are a few other journalers out there who have children or know children on the autistic spectrum. 

Please read this even if you don't think you do know anyone with autism, you may be surprised to find that you do!



Ten Things Every Child with Autism Wishes You Knew

By Ellen Notbohm
South Florida Parenting

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 I may appear withdrawn or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

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: "*&^%$#@, Billy. #$%^*&^%$&*" Instead, come speak
directly to me in plain words: "Please put your book in your desk,
Billy. 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

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

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 Michael 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.


sdoscher458 said...

Wow...that was some article. I didn't know the extent of the symtoms. Do they know what causes all of it? God bless....Sandi

lv2trnscrb said...

Thanks for the info, Dawn!

always appreciated to get the word out.


swibirun said...

This was a great article!  Thanks for sharing it with everyone.  I think I'll add it to the "Intro to MR/DD" which is one of the state mandatory trainings for my employees, since many of our folks have various forms of autism.


sbrlzc said...

That is a wonderful article!! Thank you for sharing.



cdittric77 said...

Having taught several students with Asperger's Syndrome, this article is greatly appreciated!
Peace and love,

rtgilmore34 said...

Great info.  My 10 y/o son has Asperger's Disorder too.  He was diagnosed when he was 5.

lurkynat said...

Dear Dawn,
Poignant article.I jus sent Haonfield a thinga bout an autism ribbon. thanks Dawn! Apparently autisitc kids are genuises and quite fullof potential

madmanadhd said...

It is frightening to realize that this horrible and as yet unspecified disorder is on the increase throughout this nation. In our area autism is showing up in more children and at a younger age. Thanks for very informative read.