The Kids Who Beat Autism

[n2doc]

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 months and years that followed, the two women spent hours on the phone and at each other’s homes on the East Coast, sharing their fears and frustrations and swapping treatment ideas, comforted to be going through each step with someone who experienced the same terror and confusion. When I met with them in February, they told me about all the treatments they had tried in the 1990s: sensory integration, megadose vitamins, therapeutic horseback riding, a vile-tasting powder from a psychologist who claimed that supplements treated autism. None of it helped either boy.

Together the women considered applied behavior analysis, or A.B.A. — a therapy, much debated at the time, that broke down every quotidian action into tiny, learnable steps, acquired through memorization and endless repetition; they rejected it, afraid it would turn their sons into robots. But just before B. turned 3, L. and her husband read a new book by a mother claiming that she used A.B.A. on her two children and that they “recovered” from autism. The day after L. finished it, she tried the exercises in the book’s appendix: Give an instruction, prompt the child to follow it, reward him when he does. “Clap your hands,” she’d say to B. and then take his hands in hers and clap them. Then she would tickle him or give him an M&M and cheer, “Good boy!” Though she barely knew what she was doing, she said, “he still made amazing progress compared with anything he’d gotten before.”

more
http://www.nytimes.com/2014/08/03/magazine/the-kids-who-beat-autism.html?partner=rss&emc=rss

[lumberjack_jeff]

1. Don't care for the headline much, but ABA is the ticket. n/t

[KamaAina]

2. I call B.S.

They may exhibit fewer stereotypically Autistic behaviors than before, but they are NOT neurotypical.

[SheilaT]

3. This is what I got from the article.

Some kids, if they have the right kind of intensive one on one therapy, will come out more or less normal. Some will be more so than others. Other kids, will always be autistic.

My oldest son was always different from other kids, but it wasn't until he was 18 years old and half way through his senior year of high school that I got a name for that difference: Asperger's Syndrome.

Because he was different, I wound up doing what amounted to a lot of therapy with him, even though I wasn't doing it formally and certainly never thought of it that way. I didn't understand why I needed to rehearse many social things with him, but I did. It helped. He's now 31 and if you were to meet him, you'd simply see a somewhat shy and very intelligent young man.

It also helped that his first two jobs were working at a Warner Brother's store at the local mall over Christmas, and then working at a movie theater. Those are exactly the kind of dealing with the public jobs that most Aspies won't do well with, but he did, and probably helped him be more "normal".

He's currently getting a degree in physics.

[Butterbean]

4. I.Q. plays a role. Something people seem to be ignoring.

There do, however, seem to be some clues, like the role of I.Q.: The children in Lord’s study who had a nonverbal I.Q. of less than 70 at age 2 all remained autistic. But among those with a nonverbal I.Q. of at least 70, one-quarter eventually became nonautistic, even though their symptoms at diagnosis were as severe as those of children with a comparable I.Q. who remained autistic (Fein’s study, by design, included only people with at least an average I.Q.) Other research has shown that autistic children with better motor skills, better receptive language skills and more willingness to imitate others also tend to progress more swiftly, even if they don’t stop being autistic.

Judith Bluestone talks about her ability to "pass" as neurotypical in her book The Fabric of Autism. I am inclined to believe that is what is happening here. Just my opinion.

[KamaAina]

5. They snapped our six-game winning streak.

Oh well, at least we're still in first by two games.