colesmom
Brady's mom too!
Member since 5/05 1989 total posts
Name:
Lea
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10 things every child with Autism wishes you knew -- very long, but really true.
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may appear withdrawn or belligerent to you but I am really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: “*&^%$#@, Billy.
#$%^*&^%$&*………” 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 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.” 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
“Jamie really burned up the track,” I see a kid playing
with matches. Please just tell me “Jamie ran very fast.”
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.
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 Emily 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?”
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. 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 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.
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. Be my advocate, be my friend, and we’ll see
just how far I can go.
©2005 Ellen Notbohm
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Message edited 7/10/2008 7:53:48 PM.
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