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When a babysitter warns Kerry Cohen that her one-year-old son Ezra shows signs of autism, Cohen and her family are abruptly thrust into a disorienting new reality of evaluations and interventions and diagnoses and therapies. But while experts trumpet the benefits of early detection and intervention for children with autism spectrum disorders, Cohen finds that the push for earlier and earlier intervention comes with hidden costs.
Confronting a rigid and prescriptive world of tests and treatments, Cohen becomes demoralized when she sees her affectionate, creative, playful, and expressive child reduced to a mere case study, his individual strengths overlooked and his differences pathologized as he is defined solely in terms of the ways that his development deviates from that of other kids. Shuttling from specialist to specialist, Cohen starts to feel alienated from her own process of discovery as a mother, from her right to come to know and understand her own son on her own terms. "Everything became a cause for evaluation," she writes. "I constantly asked: Was that a normal thing to do? Should he be doing it another way? I examined other children his age and wondered how they were different, how my child was maybe not right. I lost sight of him, my small, precious, beautiful blond love, and to this day I feel furious about it."
As the title suggests, Seeing Ezra is about Cohen's struggle to learn to see and accept her young son for who he is-- a struggle that culminates in her realization that, while Ezra may be wired differently from other children, his worth as a person does not depend on the degree to which he can be made, through therapy, to be more like other kids. "If this were a different kind of special-needs parenting memoir, I would find the therapy or supplements that would make Ezra all better," Cohen writes in the final pages of the book. "But that's not our story. The great feat in Ezra's and my story is that I do nothing. Finally, I do nothing. I let Ezra be who he is, and I let me be me, with all our limitations."
Writing in a loosely structured, anecdotal style, Cohen provides a vivid picture of the challenges and emotional ups and downs involved in parenting her young son, including the search for appropriate services and schools, her frustrations with therapists, and her experiences navigating the bewildering range of diets, supplements, and treatments peddled to special-needs parents. Cohen's constant tirades against slights real and imagined grow tiresome, however, and we learn far more than we need to know about her foundering marriage, extramarital affair, unresolved family resentments, and personal hang-ups and insecurities.
The book does raise a number of interesting questions about the nature of autism and our attitudes toward difference and disability in general-- questions with important implications for how we think about diagnosis and treatment. For example, is autism something that can be separated from the person, or is it an integral part of a person's identity, hardwired into who they are? Where is the line between helping people in areas where they need support and negating who they are as individuals?
Cohen doesn't discuss these questions in any sustained way, however, and parents with more severely affected children-- for example, children with self-injurious behaviors so extreme that they must wear protective helmets and padded sleeves-- may find it hard to relate to Cohen's take-home message that autism is less a disorder than a different way of being.
© 2013 Elisabeth Herschbach
Elisabeth Herschbach has a PhD in Philosophy from the University of Pennsylvania and teaches in Rhode Island.