Ten things every child with autism wishes you knew
BY ELLEN NOTBOHM
Published: Wednesday, October 31, 2007
Autism was once thought “incurable,” but every day now individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of its most challenging aspects. A basic understanding of autism gives us the ability to have tremendous impact on their journey towards productive, independent adulthood.
Here are ten things every child with autism wishes you knew: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 really what you are all about.
As an adult, you have some 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. 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?The ordinary sights, sounds, smells and touches of everyday life that you may not even notice can be downright painful for me. I may appear withdrawn or belligerent to you but I am really just trying to defend myself.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. The loudspeaker booms today’s special. Musak whines from the sound system. Cash registers beep; the coffee grinder chugs. The meat cutter screeches, babies wail, carts creak. 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….I am dangerously nauseated.
I am very visually oriented and because of this, vision may be my first sense to become overstimulated. Fluorescent lights hum and vibrate. The light appears to pulsate; it bounces off everything and distorts what I am seeing — the space seems to be constantly changing. There are moving fans on the ceiling, too many items for me to be able to focus (I may compensate with “tunnel vision”), so many bodies in constant motion. All this affects my vestibular sense, and now I can’t even tell where my body is in space.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.I interpret language very literally. It’s 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.”
Idioms, puns, nuances and sarcasm are lost on me.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 movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from books, TV or other people to compensate for my language deficits because I know I am expected to respond when spoken to. I don’t really 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.Show me how to do something rather than just telling me. Show me many times. Patient 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 and makes for smooth transitions between activities. Here’s a great website: www.cesa7.k12.wi.us/sped/autism/structure/str11.htm.Like you, I can’t learn if 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 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.It may look like I don’t want to play with the other kids on the playground, but it’s just that I simply do not know how to start a conversation or enter a play situation. Encourage other children to invite me to join them at kickball or shooting baskets; it may be that I’m delighted to be included.Meltdowns and blow-ups 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.Banish thoughts like, “Why can’t he just…..” You did not fulfill every 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 it, the possibilities are broader than you might think.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 that I don’t lie, cheat at games 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.
It won’t happen without you as 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.© 2005 Ellen Notbohm. Two-time Foreword Book of the Year finalist Ellen Notbohm is author of “Ten Things Every Child with Autism Wishes You Knew” and “Ten Things Your Student with Autism Wishes You Knew.” She is also co-author of the award-winning “1,001 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. Her new book, “The Autism Trail Guide: Postcards from the Road Less Traveled,” is a September 2007 release. To contact Ellen or explore her work, please visit www.ellennotbohm.com.