Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children

1. Jonah, 2009: The Debate on Cognitive Side Effects

1 chapter 1 Jonah, 2009 The Debate on Cognitive Side Effects November 20, 2009 Crisis, I’ve discovered, is a relative term. When the care manager who coordinates the services my autistic ten-year-old son, Jonah, gets from the State of Pennsylvania asks me if I’m in crisis, I’m not sure how to answer. Is it a crisis if your son has just attacked your tiny Thai au pair, even if he hits you or his father or his teacher or his aides every day? What if you’re afraid that your son’s aggression toward the au pair represents an expansion of his range of potential targets, so that now you won’t only have to anticipate Jonah coming after the adults in charge, but also strangers in Costco, or neighbors over for dinner? What if this isn’t an isolated incident, because Jonah also recently hit one of his sisters and your greatest fear of all is that, instead of ignoring the seven other young children who live in your house—kids who obviously irritate Jonah with their shrieking, their intrusions, their stubborn fearlessness—he may start unleashing his rage against his siblings and his cousins? Is that crisis? Apparently, at four-thirty on a Friday afternoon, insurance company managers have no patience for the nuances of crisis. Mine gives me the number of a psychiatric facility where I can take Jonah for an emergency evaluation. I hang up the phone and call the hospital. A receptionist tells me that I should take Jonah to the local emergency room because “we don’t really treat autistic kids here.” I call the insurance company back, wondering if anyone will even answer, since it’s now past five. My manager is still there. He puts me Each Day I Like It Better 2 on hold while, I suppose, he calls the facility and berates them into agreeing to do the assessment. “I’m not taking Jonah someplace that doesn’t work with autistic kids,” I say. I can tell he’s getting impatient with me: first, I call him late on a Friday afternoon in a panic over Jonah’s escalating violence and my fear that he may need another hospitalization to adjust his medications , then I reject the only offer he’s able to scrape together on such short notice. He says that if I can’t wait until Monday I have no other options. “I can wait,” I say. What would clearly be a crisis for virtually everyone I know is just a more intense level of the kind of behaviors we’ve been struggling with since Jonah was a toddler. “My husband will be home soon. We can manage.” Yes, we manage. We’re very fortunate to have a lot of support. My sister, Keri, her husband, Matty, and their young kids, Declan (5), Ronan (3½), and Molly (1½), live with us. Matty has, on many occasions , stepped in front of a raging Jonah to spare me the brunt of an attack. We also have two childcare helpers who free me up to work one-on-one with Jonah, as well as a veritable stable of aides who free me up to spend time with my four other children: Erika (8), Hilary (6), and twins Aaron and Gretchen (3½). But I don’t always feel so lucky. Managing Jonah’s behavior occupies us 24/7. It dictates the places we can and can’t go, the things we can and can’t do, and often necessitates that we split up, with one of us—usually my husband, Andy—taking Jonah to the wholesale clubs he loves so much, with their walk-in freezers, their mysteriously appealing stacks of tires, and their enormous sheet cakes. Meanwhile I take my four younger kids to their swimming lessons, to the movies, to family functions Jonah has no patience for. We’ve tried everything to control Jonah’s behaviors. At first, we were drawn to the alternative routes popular in the autistic community : we kept Jonah on a gluten- and casein-free diet for four years, and experimented with probiotics, B12 injections, auditory integration training, topical chelation, and hyperbaric oxygen therapy. When these didn’t help, we turned to psychiatry. Over the past six years, Jonah has been prescribed anticonvulsants that made him fat; stimu­ lants that made him more agitated; antidepressants that Jonah: The Debate...