![]() As a result, she is a bit heavy, and Bernardo worries about a heightened risk for type 2 diabetes. She has a hearty appetite and little sense of restraint with food. Gina needs constant care and accommodation, and she always will. “She spots the backwards and diagonal words as fast as she does the regular ones,” laments Bernardo, a recently retired literature professor at the City University of New York who speaks Italian as well as English. Once, beholding a perfume ad in which a young man gazes longingly at a young woman, she said to Bernardo, “The boy is looking kisses at the girl.” She also plays a mean iPad solitaire, and she will almost surely stomp you in a word-finder game. Every once in a while, though, she surprises Bernardo. Yet she does not speak well, and whether communicating through speech or on her iPad - which she uses to type words from her large vocabulary - she generally sticks to simple two-word sentences. With a little help, she sometimes reads books written for fifth-graders - a reading level far above what her general language and intelligence assessments would predict. Gina (who was one of those spared an acutely anxious period before her onset), for example, walks well, skillfully rides a bike, listens to and generally minds directives, dresses herself, has no trouble eating, and suffers none of the bathroom issues that plague many people with the condition. People with CDD, although quite impaired, may retain certain skills and abilities, some more than others. It is as if something is erasing everything he has become. As the increasingly frightened parents watch, he loses speech, motor skills, and most means of social contact. He’ll pace and hold his head and say it hurts. (In the 1970s and 1980s, the diagnostic term used for CDD in many countries was ‘disintegrative psychosis.’) During this anxiety-ridden prologue, known as a ‘prodrome,’ a child will often seem keenly aware that something is wrong. In about 75 percent of cases, this loss of skills is preceded by days or weeks in which the child experiences intense anxiety and even terror: nightmares and waking nightmares and bouts of confused, jumpy disturbance that resemble psychosis. The speed and character of this reversal varies, but it often occurs in a horrifyingly short period - as short as a couple of months, says Gupta. ![]() After developing typically for two to ten years (the average is three or four), a child with CDD will suffer deep, sharp reversals along multiple lines of development, which may include language, social skills, play skills, motor skills, cognition and bladder or bowel control. It’s rare, striking about 1 or 2 in every 100,000 children. Also known as Heller’s syndrome, for the Austrian special educator who first described it in 1908, it is a late-blooming, viciously regressive form of autism. ![]() Gina, now 24, was diagnosed 20 years ago with childhood disintegrative disorder, or CDD.ĬDD is the strangest and most unsettling developmental condition you have probably never heard of. Gupta is one of the few scientific experts on a condition that Bernardo and Gina know through hard experience. The science is already at table, represented by Abha Gupta, a developmental pediatrician at Yale’s renowned Child Study Center. Gina and her father, Bernardo, who live on Staten Island in New York City, have made the two-hour drive here for both. We are sitting at Abate’s in New Haven, Connecticut, a town famous for - among other things - pizza and science. “I-buh!” she says repeatedly - her version of “I want.” We all do. But sometimes that’s easy, and this is one of those times: Gina wants pizza. It’s difficult to tell what Gina Pace wants unless you already know what she wants. ![]()
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