The American Academy of Pediatrics has released a policy statement recommending that pediatricians steer away from the increasingly popular – but definitely fuzzy – diagnosis of “sensory processing disorder” and should instead look to more solid, comprehensive possibilities (such as ADHD or austism) behind childhood sensory problems.
“Because there is no universally accepted framework for diagnosis, sensory processing disorder generally should not be diagnosed,” the statement reads in part. “Other developmental and behavioral disorders must always be considered, and a thorough evaluation should be completed.”
What about the ever-popular therapies used to treat “sensory problems?” (Swings, brushes, balls, tubs of rice…if you’ve ever seen a sensory-integration gym, you know what I’m talking about.) While these techniques may be effective, says the AAP, pediatricians need to let parents know that there’s not a whole hell of a lot of research behind them. As the policy statement puts it, “Occupational therapy with the use of sensory-based therapies may be acceptable as one of the components of a comprehensive treatment plan. However, parents should be informed that the amount of research regarding the effectiveness of sensory integration therapy is limited and inconclusive.”
Interesting. I wonder how I would have reacted to this news if I had read about it five years ago, when my second daughter was diagnosed with “sensory processing problems.” It probably would have freaked me out, because I would have been worried that we were missing the whole picture — that there must be some lurking, scary diagnosis which would account for not only her sensory problems, but for a whole host of other “symptoms” as well.
Here’s Clara’s story: She did not walk until the age of twenty months – two months past the 18-month cut-off which separates the “typical” kids from “delayed.”
Her doctor wasn’t too worried, but I was. Fortunately, she qualified for state-supported physical therapy – so a physical therapist started coming to our house on a weekly basis to help Clara teach herself how to walk.
After several months, Clara was walking great and doing all kinds of other things as well, so services ended. As she hurtled towards age three, her speech was amazing, her kindness was apparent even to strangers, and her sense of humor seemed advanced. But physically, she still seemed a little behind. In her Little Gym class, for example, the other kids were flipping themselves over the parallel bars like mini-Olympians, while Clara clung to my hand and gingerly teetered along the flush-to-the-floor balance beam. She seemed overwhelmed by loud noises and crowds. She hated to be upside down. She wouldn’t go down slides. She hung back from kid-friendly activities, preferring to watch from the sidelines.
And so, the physical therapist returned and administered a motor-skills evaluation. Clara turned out to be 6 to 9 months behind her age group. “Sensory processing issues,” said the therapist, and I grasped this diagnosis, watery though it was, with relief. I’d heard this phrase before. It was common, mild, not-so-scary, relatable. In fact, I have problems with sensory things myself.
Hence began several months of expensive occupational therapy at a sensory integration gym. There were swings made of soft, springy material. Things to bounce on. Super slides. Ball pits. Rice. It was a wonderland, and Clara liked it. Anna (who got to do it too, as Clara’s “helper,” loved it). After about six months, Clara could go down slides, swing without getting scared, and tolerate crowds better.
But me? I was confused. The watery diagnosis – so relieving at first – was now intensely frustrating, because I couldn’t get straight answers to my questions. “What does she have, exactly? I mean, what even are ‘sensory processing issues?’” I kept asking the therapist. “Will it affect her later? Will she always have this? Why does playing with rice help? I don’t get it. Would she just get better on her own, even without this help? What is this, anyway?” I’m sure I was their favorite parent.
The answers were just so…wishywashy. Maybe she had mild sensory-processing issues. Maybe not. Maybe they would go away, maybe not. Maybe she needs occupational therapy, maybe not. I felt spacy whenever I came out of one of those conversations. The only thing they seemed to be able to say for sure was that she had low muscle tone, but we already knew that.
“Is it okay to stop?” I asked the therapist after several months. “Does she still need it?”
“Well, she could definitely still benefit from it,” the therapist answered. I felt spacey again. Still benefit from it? Well, sure. Anyone could still benefit from it, couldn’t they? But DID. SHE. NEED. IT? (Eventually, I talked to the director, who was more clarifying. “Sure, go ahead and stop,” she told me. “You might need to come back when she starts kindergarten, but maybe not.” The spacey feeling lifted, and we quit.)
Three years later, Clara can ride a bike, swim, play soccer, go down slides, swing high, and flip on the parallel bars. She’s sporty and determined and sensitive and kind. She’s also still easily overwhelmed. She still doesn’t like crowds and tends to hang on the sidelines in new situations. She still cries when something gives her a “yucky feeling.” She still cries at lots of things. But in general, she’s doing great.
It seems clear that there’s no underlying diagnosis here. So, we’re back to square one – what did /does she have? Sensory processing issues? Or nothing at all? Did we swing on bouncy material and play with rice for six months for nothing?
Possibly. But who knows?
What do you think of the policy statement? Do you think sensory processing disorder can exist on its own, or do you think it’s usually due to some larger diagnosis?