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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withdrawn or belligerent to you, but I am really just trying to defend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: "*&^%$#@, Billy. #$%^*&^%$&*"
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.
Ellen Notbohm
31 March 2006
http://www.southflorida.com/sfe-sfp-autism,0,2830272.story
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