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January 17, 2013

Slate: Is the neurodiversity movement misrepresenting autism?

(Continued)

Now that Jonah is almost 14, I've come to accept that what he writes and says (he learned to speak in a rudimentary fashion when he was 5) pretty accurately reflects what he's thinking: "No school," "BIG orange juice," "Mommy and Daddy leave and Jonah stays at Costco" (so he can ransack the bakery department). Not that we will ever stop pushing him, working to expand his limited communication and social skills, while trying to maintain control over the frequent and unpredictable rages that necessitated a 10-month hospitalization when he was only 9 years old — rages that made him pound his own face bloody before turning his aggression outward in attacks that left us scratched and bruised. But as far as an "intact mind"? If it means a level of articulation and abstract reasoning belied by everything Jonah says and does — well, I no longer pray for my son to be someone he's not.

But the bigger question is: Should I have stopped praying years ago? Should parents with young autistic children expect a breakthrough like those in the high-profile cases? Evidence suggests many of these people are either not as high-functioning — or in some cases not as low-functioning — as has been described.

Shortly after Amanda Baggs was interviewed by Sanjay Gupta on CNN and drew nationwide acclaim, several former friends and classmates took to the Web in bewilderment. Their testimony was consistent. They knew Baggs, either from a summer program for gifted teens or from Simon's Rock College, where she was a student in the mid-1990s. During those years, she spoke, attended classes, dated and otherwise acted in a completely typical fashion. How to reconcile the accomplished student she used to be with the woman they saw on TV in a wheelchair, rocking, smacking herself in the head, flapping her hands and making unintelligible noises?

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