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NYT: The Kids Who Beat Autism
http://www.nytimes.com/2014/08/03/magazine/the-kids-who-beat-autism.html
The Kids Who Beat Autism
By RUTH PADAWER
JULY 31, 2014
At first, everything about L.'s baby boy seemed normal. He met every developmental milestone and delighted in every discovery. But at around 12 months, B. seemed to regress, and by age 2, he had fully retreated into his own world. He no longer made eye contact, no longer seemed to hear, no longer seemed to understand the random words he sometimes spoke. His easygoing manner gave way to tantrums and head-banging. “He had been this happy, happy little guy,” L. said. “All of a sudden, he was just fading away, falling apart. I can’t even describe my sadness. It was unbearable.” More than anything in the world, L. wanted her warm and exuberant boy back.
A few months later, B. received a diagnosis of autism. His parents were devastated. Soon after, L. attended a conference in Newport, R.I., filled with autism clinicians, researchers and a few desperate parents. At lunch, L. (who asked me to use initials to protect her son’s privacy) sat across from a woman named Jackie, who recounted the disappearance of her own boy. She said the speech therapist had waved it off, blaming ear infections and predicting that Jackie’s son, Matthew, would be fine. She was wrong. Within months, Matthew acknowledged no one, not even his parents. The last word he had was “Mama,” and by the time Jackie met L., even that was gone.
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In the last 18 months, however, two research groups have released rigorous, systematic studies, providing the best evidence yet that in fact a small but reliable subset of children really do overcome autism. The first, led by Deborah Fein, a clinical neuropsychologist who teaches at the University of Connecticut, looked at 34 young people, including B. She confirmed that all had early medical records solidly documenting autism and that they now no longer met autism’s criteria, a trajectory she called “optimal outcome.” She compared them with 44 young people who still had autism and were evaluated as “high functioning,” as well as 34 typically developing peers.
In May, another set of researchers published a study that tracked 85 children from their autism diagnosis (at age 2) for nearly two decades and found that about 9 percent of them no longer met the criteria for the disorder. The research, led by Catherine Lord, a renowned leader in the diagnosis and evaluation of autism who directs a large autism center and teaches at Weill Cornell Medical College, referred to those who were no longer autistic as “very positive outcome.”
<>
The Kids Who Beat Autism
By RUTH PADAWER
JULY 31, 2014
At first, everything about L.'s baby boy seemed normal. He met every developmental milestone and delighted in every discovery. But at around 12 months, B. seemed to regress, and by age 2, he had fully retreated into his own world. He no longer made eye contact, no longer seemed to hear, no longer seemed to understand the random words he sometimes spoke. His easygoing manner gave way to tantrums and head-banging. “He had been this happy, happy little guy,” L. said. “All of a sudden, he was just fading away, falling apart. I can’t even describe my sadness. It was unbearable.” More than anything in the world, L. wanted her warm and exuberant boy back.
A few months later, B. received a diagnosis of autism. His parents were devastated. Soon after, L. attended a conference in Newport, R.I., filled with autism clinicians, researchers and a few desperate parents. At lunch, L. (who asked me to use initials to protect her son’s privacy) sat across from a woman named Jackie, who recounted the disappearance of her own boy. She said the speech therapist had waved it off, blaming ear infections and predicting that Jackie’s son, Matthew, would be fine. She was wrong. Within months, Matthew acknowledged no one, not even his parents. The last word he had was “Mama,” and by the time Jackie met L., even that was gone.
<>
In the last 18 months, however, two research groups have released rigorous, systematic studies, providing the best evidence yet that in fact a small but reliable subset of children really do overcome autism. The first, led by Deborah Fein, a clinical neuropsychologist who teaches at the University of Connecticut, looked at 34 young people, including B. She confirmed that all had early medical records solidly documenting autism and that they now no longer met autism’s criteria, a trajectory she called “optimal outcome.” She compared them with 44 young people who still had autism and were evaluated as “high functioning,” as well as 34 typically developing peers.
In May, another set of researchers published a study that tracked 85 children from their autism diagnosis (at age 2) for nearly two decades and found that about 9 percent of them no longer met the criteria for the disorder. The research, led by Catherine Lord, a renowned leader in the diagnosis and evaluation of autism who directs a large autism center and teaches at Weill Cornell Medical College, referred to those who were no longer autistic as “very positive outcome.”
<>
