What's Wrong With This Picture?
My autistic son doesn't need to be fixed.
by Kerry Cohen
March 31, 2008
Ezra's autism is not typical, if there even is such a thing. His diagnosis is PDD-NOS, a diagnosis given when a child has some but not all the criteria for autism. It basically means, "something is wrong with his development, but we don't know what." Most of his issues are with communication. He developed language late, and when he did he used mostly scripted language, language he had picked up from videos, to communicate. He also took longer to gesture, such as pointing at objects he wanted or wanted to share with me, and he still doesn't know how to nod. He doesn't ask or answer questions, or look to his father or me to see whether something is safe. He will only eat two things, and neither of those things can really be called "food," as they hold little nutritional value. He's overly cautious and has to be supported through transitions. Those are the areas in which he struggles. He does have mostly normal eye contact. He's loving and affectionate. He's joyful, connected, and bonded with his father and me. He plays with a variety of toys, and he does so appropriately. He's highly intelligent and a fast learner. Whenever I outline this list — the list of where he is "behind" and where he is "on par" or "ahead" — I get uncomfortable. None of it captures who he really is, which can't be contained in a paragraph or maybe even with words. He's just Ezra. He's just who he is.
Most mothers feel that sense that their persons are no longer their own when they become pregnant. Strangers touch their bellies. Acquaintances dole out unsolicited advice. Where before no one was interested, suddenly everybody feels the right to reprimand you for your choices. When it comes to special needs children, this cultural ownership is exponential. I have been astounded by the comments I've received — from strangers, friends, family members and even professionals. When we were first feeling concerned about Ezra's development, a woman from my mom's group said, "We think our son is developing ahead of schedule because we take him camping so much.
Whenever I outline the list of where he is "behind," I get uncomfortable. He's just Ezra. He's just who he is.
I read in a magazine if you get him outside a lot, he'll develop better." Another friend said, "Have you tried talking to him more?" A family member told me, "Maybe you should stop worrying about it so much and just relax. He's probably feeling your stress." Even another parent of a child with special needs commented, "Her issues have been challenging, but we're just so thankful that at least she started talking on time. That would have been awful." Once, in a grocery store, a total stranger pulled me aside and told me about a treatment center, about which I was well aware, where they use "loving the child" to try to make the child more "normal." Must I point out the many levels on which I took offense? This doesn't include the endless looks of pity I've received, the murmurs of "sorry," and the head shakes.
©2008 Kerry Cohen and Nerve Media
About the Author
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Kerry Cohen is the author of Loose Girl: A Memoir of Promiscuity (coming in June) and the author of the young adult novel Easy. She lives in Portland, Oregon with her family. |
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