Special to The Chief
Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute is the inconsistency. No question: autism can be baffling.
And though once thought "incurable," that notion is crumbling in the face of ever-increasing knowledge. Every day, individuals with autism show us that they can overcome, compensate for and manage many of its most challenging aspects. Understanding their needs can have a tremendous impact on a child's journey towards productive, independent adulthood.
Autism is a "spectrum" disorder, but core elements exist. Here are ten things that 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 but one aspect of my total character. Like you, I am a person with thoughts, feelings, and many talents. I am still unfolding; we don't 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. If I get a sense that you don't think I "can do it," my natural response may be: Why try?
2. My sensory perceptions are disordered. The ordinary sights, sounds, smells, tastes, and touches of everyday life that you may not even notice can be hyperacute and downright painful for me. I may appear withdrawn or belligerent, but I am really just trying to defend myself from a world that is intrusively loud, blindingly bright, offensively smelly and difficult to navigate. My brain cannot filter the multiple inputs and I frequently feel overloaded, disoriented and unsettled in my own skin.
3. Please distinguish between won't and can't . 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: "*&^#@, 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. When you say, "Hold your horses, cowboy!" 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.
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 those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.
6. Because language is so difficult for me, I am very visually oriented. Show, rather than tell me how to do something. And show me many times; patient repetition helps me learn. A visual schedule is extremely helpful. Like your day planner, it relieves me of the stress of having to remember what comes next. It helps me manage my time - and meet your expectations.
7. Focus and build on what I can do rather than what I can't do. Like you, 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 I simply don't know how to start a conversation or enter a play situation. Encourage other children to invite me to join them at kickball or hoops; I may be delighted to be included.
9. Try to identify what triggers my meltdowns. 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. Keep a log noting times, settings, activities, people. A pattern may emerge.
10. Love me unconditionally. Banish thoughts like, "If he would just" Did you fulfill every last expectation your parents had for you? 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.
Ellen Notbohm is a columnist for Autism Asperger's Digest and co-author of 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders. This article has been condensed from its original version. It can be viewed in its entirety at www.autismspectrum.net/DesktopDefault.aspx?tabid=248.
