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_____________________________________________________________ By Ellen Notbohm © Copyright 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 I may appear withdrawn or belligerent to you, but I am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: "*&^%$#@, Billy.
#$%^*&^%$&*" 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 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 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.
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