The debate over sensory processing disorder: Are some kids really ‘out of sync’?

The mother of the Silver Spring child (who asked not to be identified to protect his privacy) said that since SPD is not recognized as a disorder by much of the medical establishment, she and her husband must pay out of pocket to send their son to a school that caters to his needs and for occupational therapy, which can cost more than $6,500 a year for weekly, hour-long sessions.

Laura Pittman, of Colorado Springs, whose son was diagnosed with SPD as a toddler, said the challenges families face are not understood.

“I feel like it’s an invisible disorder,” she said. Her son had trouble transitioning from indoors to outdoors and adjusting to changes in routine; he ran all the time. The first-time mother worried that the difficulties were her fault. She wept in relief when an occupational therapist told her that there was a label for his condition. (OTs are typically on the front lines in assessing these children.)

Pittman thinks that recognition of this disorder by established medicine would help parents. “I feel like it would give freedom to many parents across the country that didn’t have to work the system to get services for our children,” she said.

Just temperament?

In the past two years, the cause of increased recognition for SPD has been dealt a few setbacks. In a 2012 policy statement, the American Academy of Pediatrics advised pediatricians not to use sensory processing disorder as a diagnosis.

“We have no evidence that it is a separate disorder,” explained the statement’s co-author, Michelle Zimmer, a pediatrician in Cincinnati. “The pediatrician’s first thought needs to be: What else is going on here? What other disorder could this be a part of? It needs to be thought of more as a symptom rather than a disorder in and of itself.”

The AAP’s action was followed in 2013 by an expert committee’s decision not to include SPD as a diagnosis in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM-5, published by the American Psychiatric Association. This decision came despite a vigorous campaign to include SPD in the DSM for the first time.

“I do not doubt that the people that report this . . . are really experiencing something,” saidCatherine Lord, a member of the DSM-5 committee. “But we don’t know very much about what it is that they are actually experiencing,”

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