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January 18, 2013

Slate: Is the neurodiversity movement misrepresenting autism?

(Continued)

I exchanged emails with one of her old acquaintances. Although he confirmed that the statements he wrote online were accurate, he couldn't say anything else: Baggs' lawyer had contacted him and warned that such statements could result in legal action.

The objection is surprising for many reasons, not the least of which is that Baggs doesn't really dispute these details of her teen-age years. On her blog, Ballastexistenz — which has been called "the most-read of all autistic blogs" by disability scholar James C. Wilson — she confirms that she was identified as gifted, went to college, and "produced plausible-sounding speech sounds . . . in the past." She also explains that she was diagnosed with autism at the age of 14 (joining a long list of diagnoses she says she has received over the course of her life, including bipolar disorder, dissociative disorder, psychotic disorder and schizophrenia), and that she lost all functional speech in her early 20s.

This story appears to be clinically unprecedented. "Very high-functioning individuals might not be diagnosed until their teens or later, because of their milder symptoms," explains Alex Kolevzon, clinical director of the Seaver Autism Center for Research and Treatment at Mount Sinai School of Medicine in New York. But, he adds, patients who are diagnosed relatively late display nothing like the incapacitating impairments Baggs seems to suffer from now. And Kolevzon has never seen patients lose the ability to speak in their 20s due to autism. His observation is supported by the findings of the Interactive Autism Network (IAN) at Kennedy Krieger Institute, which maintains the largest online autism database in the country. Of almost 10,000 subjects, IAN researchers report, "Of those diagnosed in adolescence, no child whose primary regression was in 'speech and language' incurred the regression after age 5 years."

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