Ten Things every child w. autism wishes u knew

[Guest guest]

To: mmoyer@...

Sent: Monday, December 11, 2006 4:32 PM

Subject: autism..

The Program

Q & A

Support Materials

Life Stories

The right to grant reprint permission of articles rests solely

with the author. If you would like to reproduce the article, either

electronically or in print, you must have permission from the author. View

author's bio for contact info.

TEN THINGS EVERY CHILD WITH AUTISM

WISHES YOU KNEW

by Ellen Notbohm

S ome 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 behavior can be perplexing and downright difficult.

Autism was once thought an “incurable†disorder, but

that notion is crumbling in the face knowledge and understanding that is

increasing even as you read this. Every day, individuals with autism are showing

us that they can overcome, compensate for and otherwise manage many of

autism’s most challenging characteristics. Equipping those around our children

with simple understanding of autism’s most basic elements has a tremendous

impact on their ability to journey towards productive, independent adulthood.

Autism is an extremely complex disorder but for purposes

of this one article, we can distill its myriad characteristics into four

fundamental areas: sensory processing challenges, speech/language delays and

impairments, the elusive social interaction skills and whole child/self-esteem

issues. And though these four elements may be common to many children, keep

front-of-mind the fact that autism is a spectrum disorder: no two (or ten or

twenty) children with autism will be completely alike. Every child will be at a

different point on the spectrum. And, just as importantly – every parent,

teacher and caregiver will be at a different point on the spectrum. Child or

adult, each will have a unique set of needs.

Here are ten things every child with autism wishes you

knew:

1. I am first and foremost a child. I have autism. I am

not primarily “autistic.†My autism is only 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)? Those may be things that

I see first when I meet you, but they are not necessarily what you are all

about.

As an adult, you have some control over how you define

yourself. If you want to single out a single characteristic, you can make that

known. As a child, I am still unfolding. Neither you nor I yet know what I may

be capable of. Defining me by one characteristic runs the danger of setting up

an expectation that may be too low. And if I get a sense that you don’t think

I “can do it,†my natural response will be: Why try?

2. My sensory perceptions are disordered. Sensory

integration may be the most difficult aspect of autism to understand, but it is

arguably the most critical. It his means that the ordinary sights, sounds,

smells, tastes and touches of everyday 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. Here is why a “simple†trip to the grocery store

may be hell for me:

My hearing may be hyper-acute. Dozens of people are

talking at once. The loudspeaker booms today’s special. Musak 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 am dangerously nauseated.

Because I am visually oriented (see more on this below),

this may be my first sense to become overstimulated. The fluorescent light is

not only too bright, it buzzes and hums. The room seems to pulsate and it hurts

my eyes. The pulsating light bounces off everything and distorts what I am

seeing – the space seems to be constantly changing. There’s glare from

windows, too many items for me to be able to focus (I may compensate with

" tunnel vision " ), moving fans on the ceiling, so many bodies in constant motion.

All this affects my vestibular and proprioceptive senses, and now I can’t even

tell where my body is in space.

3. Please remember to distinguish between won’t (I

choose not to) and can’t (I am not able to). Receptive and expressive language

and vocabulary can be major challenges 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.â€

This tells me what you want me to do and what is going to happen next. Now it is

much easier for me to comply.

4. I am a concrete thinker. This means I interpret

language very literally. It’s very confusing for me when you say, “Hold your

horses, cowboy!†when what you really mean is “Please stop running.â€

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.â€

Idioms, puns, nuances, double entendres, inference,

metaphors, allusions and sarcasm are lost on me.

5. Please 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.

Or, there’s a flip side to this: I may sound like a

“little professor†or 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, TV, the speech of other

people. It is called “echolalia.†I don’t necessarily understand the

context or the terminology I’m using. I just know that 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. Please show me how to do something rather than just telling

me. And please be prepared to show me many times. Lots of consistent repetition

helps me learn.

A visual schedule is extremely helpful as I move through

my day. Like your day-timer, it relieves me of the stress of having to remember

what comes next, makes for smooth transition between activities, helps me manage

my time and meet your expectations. Here’s a great website for learning more

about visual schedules: www.cesa7.k12.wi.us/sped/autism/structure/str11.htm.

I won’t lose the need for a visual schedule as I get

older, but my “level of representation†may change. Before I can read, I

need a visual schedule with photographs or simple drawings. As I get older, a

combination of words and pictures may work, and later still, just words.

7. Please 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 and 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 will find them. There is more than one “right†way

to do most things.

8. Please 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 do not 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, it may be that I’m delighted to be included.

I do best in structured play activities that have a

clear beginning and end. I don’t know how to “read†facial expressions,

body language or the emotions of others, so I appreciate ongoing coaching in

proper social responses. For example, if I laugh when falls off the

slide, it’s not that I think it’s funny. It’s that I don’t know the

proper response. Teach me to say “Are you OK?â€

9. Try to identify what triggers my meltdowns.

Meltdowns, blow-ups, 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. Keep a log noting times, settings, people, activities. A pattern

may emerge.

Try to remember that all behavior is a form of

communication. It tells you, when my words cannot, how I perceive something that

is happening in my environment.

Parents, keep in mind as well: persistent behavior may

have an underlying medical cause. Food allergies and sensitivities, sleep

disorders and gastrointestinal problems can all have profound effects on

behavior.

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

unconditionally. Banish thoughts like, “If he would just……†and “Why

can’t she…..†You did not fulfill every last expectation your parents had

for you and you wouldn’t like being constantly reminded of it. I did not

choose to have autism. But remember that it is 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 am worth it.

And finally, 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. It may be true that I’m not good at eye contact or conversation,

but have you noticed that I don’t lie, cheat at games, tattle on my classmates

or pass judgment on other people? Also true that 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.

The answer to Alzheimer’s, the enigma of

extraterrestrial life -- what future achievements from today’s children with

autism, children like me, lie ahead?

All that I might become won’t happen without you as 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.

© 2005 Ellen Notbohm

Ellen Notbohm is author of Ten Things Every Child with

Autism Wishes You Knew, a ForeWord 2005 Book of the Year Honorable Mention

winner and recipient of iParenting’s 2005 Media Award, and Ten Things Your

Student with Autism Wishes You Knew, a 2006 iParenting Media Award recipient.

She is co-author of 1001 Great Ideas for Teaching and Raising Children with

Autism Spectrum Disorders, winner of Learning Magazine’s 2006 Teacher’s

Choice Award, and a columnist for Autism Asperger’s Digest and Children’s

Voice. For article reprint permission, to learn more or to contact Ellen,

please visit www.ellennotbohm.com

Archive of Articles

| Return to Consultants Online |

Copyright © 2006 Discovery Toys, Inc.