The Child Is Fine. Then a Mystifying Regression Occurs
It's called CDD, and it's perhaps the most severe form of autism
By John Johnson,  Newser Staff
Posted Jul 14, 2016 11:07 AM CDT
Updated Jul 17, 2016 9:03 AM CDT
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(Newser) – A headline at Spectrum calls childhood disintegrative disorder "the most terrifying childhood condition you've never heard of." The story by David Dobbs then backs it up. CDD, or Heller's syndrome, is a form of autism—in fact, it's kind of the uber-autism. What makes it particularly awful is that it strikes quickly in a seemingly healthy child, often around age 3 or 4, and the child will "suffer deep, sharp reversals" across a broad spectrum: motor skills, language skills, social skills, control over bowel movements, etc. Other forms of autism also are accompanied by regression, but none so severe or late-blooming. The condition strikes one or two kids per 100,000, and its onset is often marked by a disturbing period in which the child becomes inexplicably fearful. The story, for example, describes a video of an 8-year-old boy who suddenly began pacing around his house and cowering.

"The boy stayed in that acutely agitated state 20 hours a day, seven days a week, for a full month," unable to articulate what was troubling him, writes Dobbs. "A few weeks after the video was taken, the boy’s language began to fade, as did the bright, funny, socially active, curious person he had been." Three years later, a video shows him sitting on a rug "looking blankly at the camera." The story examines researchers' theories about what's going on—they're looking at mutations in a particular set of genes—and how it might shed light on autism as a whole. One intriguing notion: Are the skills that vanish gone for good or merely hidden in some way, as flashes from patients seem to suggest. And one complication: CDD was recently dropped as an official diagnosis and folded into the broader autism spectrum, which "muddies the path for people who have CDD or study it," writes Dobbs. Click for the full story.