By Noon They’d Both Be In Heaven

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By Noon They’d Both Be In Heaven

Postby BTDT » Tue Oct 21, 2014 9:26 am

By Noon They’d Both Be In Heaven

This is a long, disturbing, but very interesting article from New York Magazine.

Excerpts from the article:

In 2000, when Issy was 18 months old and had just been diagnosed, Kelli came across a book called Let Me Hear Your Voice: A Family’s Triumph Over Autism. The book tells the story of Anne-Marie, a “beautiful, doelike” child who, much like Issy, started out life a happy, bubbly infant and then before age 2 turned inward. This is a ­commonly observed pattern, known as “regressive autism,” though it’s not clear how much it reflects a developmental right turn and how much it reflects the emotional experience of parents, who often find themselves longing for that original bright child they knew only briefly. As the book describes, Anne-Marie is ultimately rescued from the “torments of autism” and reborn into a “normal life” through an intense therapy called applied behavior analysis (ABA), which is the same positive-reinforcement system employed at Great Lakes. “There was proof that children recovered,” Kelli said she thought at the time. “If I work really, really hard and I do it really, really well, then I can cure her. I must do this!” She tracked down a child psychiatrist in Michigan and essentially dedicated all of her waking hours to the Issy-improvement project.

Kelli had begun her ABA teaching in the days of dial-up internet. These days, a Google search will turn up hundreds of what could be called autism miracle stories. These stories often describe “beautiful boys and girls emerging from their affliction as if it were passing winter frost,” writes Andrew Solomon in his book Far From the Tree, and “dancing off into springtime fields of violets, fully verbal, glowing with the fresh ecstasy of unself-conscious charm.” I have a son with Asperger’s and have struggled with the ­lessons of these stories myself: Is it my job to “fix” him, or to fix the world so it can accept him as he is? The miracle stories inspire intervention, and thrive in an era that lionizes the parent hero and the parent martyr, who are presumed to possess, more than a doctor or a teacher or an expert, the deepest knowledge about what is best for a child. Forty years ago, an impossible child would be sent to an institution and nobody would object. We don’t believe in those institutions anymore, which is probably good, since most of them would just have sedated a kid like Issy. Instead, we believe difficult kids should be integrated into the mainstream. But what that means in ­practice is that it’s up to their parents to save them.

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