I stumbled upon this article a while back while looking for a resource for one of the families with whom I work who has a child with autism. They were struggling with how to help friends and family understand their child. I contacted the author and asked her if I could share it with my readers, to which she agreed. Please share this information with family or friends who may be struggling to understand or how to explain it to family members. Enjoy...
Ten Things Every Child with Autism Wishes You Knew
by Ellen Notbohm
from the book Ten Things Every
Child with Autism Wishes You Knew
(2005, Future Horizons, Inc.) Reprinted
with permission of author
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 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: “*&^%$#@, Billy.
#$%^*&^%$&*………”
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.
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
Please contact the author for permission to reproduce in any way including re-posting
on the Internet. Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew, Ten Things Your
Student with Autism Wishes You Knew, and
The Autism Trail Guide: Postcards
from the Road Less Traveled, all ForeWord
Book of the Year finalists. She is also co-author of the award-winning
1001
Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, a columnist for Autism Asperger’s
Digest and Children’s Voice,
and a contributor to numerous publications and websites around the world. To contact Ellen or explore her work,
please visit www.ellennotbohm.com .
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