by Ellen
Notbohm from the book Ten Things Every Child with Autism
Wishes You Knew, 2nd edition (2012, Future Horizons, Inc.)
Some days it seems the only
predictable thing about it is the unpredictability. The only consistent
attribute—the inconsistency. Autism can be 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 labeled an “incurable disorder,” but that notion has crumbled in the
face knowledge and understanding that increase even as you read this. Every
day, individuals with autism show 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 basic elements
has a tremendous impact on their ability to journey towards productive,
independent adulthood.
Autism
is a complex disorder but for purposes of this 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 a child.
My
autism is part of who I am, not all of who I am. Are you just one thing, or are
you a person with thoughts, feelings, preferences, ideas, talents, and dreams?
Are you fat (overweight), myopic (wear glasses) or klutzy (uncoordinated)?
Those may be things that I see first when I meet you, but you’re more than just
that, aren’t you?
As an
adult, you have control over how you define yourself. If you want to single out
one 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. If you think of me as just
one thing, you run 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 senses are out of
sync.
This
means that ordinary sights, sounds, smells, tastes, and touches that you may
not even notice can be downright painful for me. My environment often feels
hostile. I may appear withdrawn or belligerent or mean to you, but I’m just
trying to defend myself. Here’s why a simple trip to the grocery store may be
agonizing for me.
My
hearing may be hyperacute. Dozens of people jabber at once. The loudspeaker
booms today’s special. Music blares from the sound system. Registers beep and
cough, a coffee grinder chugs. 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 three with ammonia. I feel like throwing
up.
And
there’s so much hitting my eyes! The fluorescent light is not only too bright,
it flickers. The space seems to be moving; the pulsating light bounces off
everything and distorts what I am seeing. There are too many items for me to be
able to focus (my brain may compensate with tunnel vision), swirling fans on
the ceiling, so many bodies in constant motion. All this affects how I feel
just standing there, and now I can’t even tell where my body is in space.
3. Distinguish between
won’t (I choose not to) and can’t (I am not able to).
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, I hear “*&^%$#@, Jordan.
#$%^*&^%$&*.” Instead, come over to me, get my attention, and speak in
plain words: “Jordan, put your book in your desk. 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’m a concrete
thinker. I interpret language literally.
You
confuse me by saying, “Hold your horses, cowboy!” when what you mean is, “Stop
running.” Don’t tell me something is “a piece of cake” when there’s no dessert
in sight and what you 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. Tell me,
“It’s raining hard.”
Idioms,
puns, nuances, inferences, metaphors, allusions, and sarcasm are lost on me.
5. Listen to all the
ways I’m trying to communicate.
It’s
hard for me to tell you what I need when I don’t have a way to describe my
feelings. I may be hungry, frustrated, frightened, or confused but right now I
can’t find those words. Be alert for body language, withdrawal, agitation or
other signs that tell you something is wrong. They’re there.
Or, you
may hear me compensate for not having all the words I need by sounding like a
little professor or movie star, rattling off words or whole scripts well beyond
my developmental age. I’ve memorized these messages from the world around me
because I know I am expected to speak when spoken to. They may come from books,
television, or the speech of other people. Grown-ups call it echolalia. I may
not 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. Picture this! I’m
visually oriented.
Show me
how to do something rather than just telling me. And be prepared to show me
many times. Lots of patient practice helps me learn.
Visual
supports help me move through my day. They relieve me of the stress of having
to remember what comes next, make for smooth transition between activities, and
help me manage my time and meet your expectations.
I need
to see something to learn it, because spoken words are like steam to me; they
evaporate in an instant, before I have a chance to make sense of them. I don’t
have instant-processing skills. Instructions and information presented to me
visually can stay in front of me for as long as I need, and will be just the
same when I come back to them later. Without this, I live the constant
frustration of knowing that I’m missing big blocks of information and
expectations, and am helpless to do anything about it.
7. Focus and build on
what I can do rather than what I can’t do.
Like
any person, 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. I avoid trying anything new
when I’m sure all I’ll get is criticism, no matter how “constructive” you think
you’re being. Look for my strengths and you will find them. There is 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 it
may be that I simply do not know how to start a conversation or join their
play. Teach me how to play with others. Encourage other children to invite me
to play along. I might be 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.
Coach me. 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 what to say. Talk to me about Emily’s feelings
and teach me to ask, “Are you okay?”
9. Identify what
triggers my meltdowns.
Meltdowns
and blow-ups are more horrid for me than they are for you. They occur because
one or more of my senses has gone into overload, or because I’ve been pushed
past the limit of my social abilities. If you can figure out why my meltdowns
occur, they can be prevented. Keep a log noting times, settings, people, and
activities. A pattern may emerge.
Remember
that everything I do is a form of communication. It tells you, when my words
cannot, how I’m reacting to what is happening around me. My behavior may have a
physical cause. Food allergies and sensitivities sleep problems and
gastrointestinal problems can all affect my behavior. Look for signs, because I
may not be able to tell you about these things.
10. Love me
unconditionally.
Throw
away thoughts like, “If you would just—” and “Why can’t you—?” You didn’t
fulfill every 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 growing up to be
successful and independent are slim. With your support and guidance, the
possibilities are broader than you might think.
Three
words we both need to live by: Patience. Patience. Patience.
View my
autism as a different ability rather than a disability. Look past what you may
see as limitations and see my strengths. I may not be good at eye contact or
conversation, but have you noticed that I don’t lie, cheat at games, or pass
judgment on other people?
I rely
on you. All that I might become won’t happen without you as my foundation. Be
my advocate, be my guide, love me for who I am, and we’ll see how far I can go.
Contact the author for
permission to reproduce in any way, including posting on the Internet.
Award-winning
author and mother of sons with ADHD and autism, Ellen Notbohm’s books and
articles have informed and delighted millions in more than nineteen languages.
Her work has won a Silver Medal in the Independent Publishers Book Awards, a
ForeWord Book of Year Honorable Mention and two finalist designations, a Mom’s
Choice Gold Award, Learning magazine's Teacher's Choice
Award, two iParenting Media awards, and an Eric Hoffer Book Award finalist
designation. She is a contributor to numerous publications, classrooms,
conferences and websites worldwide.