The Phantom Menace: Do 1 in 20 kids really have Sensory Processing Disorder?Vivian Manning-Schaffel
Four – count ’em – four of my four-year-old son’s friends are in occupational therapy for sensory processing disorder, a.k.a. SPD. Considering his inner circle tops out at about fifteen, this indicates an epidemic on our Brooklyn playground.
And it’s not just New York. Based on studies at the Sensory Therapies and Research Center (STAR) in Denver, CO, at least one in every twenty children and adults has SPD – 3.5 million people in the U.S. alone, including one out of three gifted children, and eight in ten autistic children.
So, where did this mysterious disorder come from? Are the numbers soaring because, like autism, more information about SPD is coming to light, or is SPD just a hot new way to classify the challenges of certain kids, like the “indigo children” popularized by the 1998 New Age book? Or is SPD, as Time magazine mused last year, the new ADD?
The SPD diagnosis isn’t so new. Sensory Processing Disorder – or Sensory Integration Disorder – was first outlined in the early ’70s by occupational therapist A. Jean Ayres. In her book, Sensory Integration and the Child, Ayres claimed that children with SPD are either over- or under- responsive to various sensory stimuli – be they touch, movement, smell, taste, vision or hearing.
SPD indicates a breakdown in how input is processed. There are three major subgroups that fall under the umbrella of SPD: Sensory Modulation Disorder, Sensory-Based Motor Disorder and Sensory Discrimination Disorder, which manifest in the delayed development of a wide variety of social, emotional and motor skill sets.
But many SPD symptoms, like throwing tantrums and not holding a pen correctly, are typical of so many young children. In the face of all this grey area and controversy, how’s a parent supposed to tell what’s SPD and what’s just part of being four years old?
Dr. Lucy Jane Miller, author of Sensational Kids: Hope and Help for Children with Sensory Processing Disorder, and Director of the STAR Center, has been working for more than thirty years to provide scientific evidence that SPD is not just quirky kid behavior but an actual, physiological condition.
One study at her center examined the brainwaves of children experiencing two sensory stimuli simultaneously, like touch and smell.
“When you put those two together and administer them at the same time, you should see an enhanced response – as you do in every type of living creature,” Dr. Miller explains. “These children respond the same as they would to a single stimuli. They are not integrating at the neuron level the same way that typically developing living creatures do. It’s as if they are caught in a constant fight-or-flight reaction.”
She says medical professionals often misdiagnose SPD as ADHD and/or autism because the lines between the disorders are slightly blurred. “It’s not in the autism spectrum, but almost all children who have autism or Asperger’s syndrome have sensory problems, sometimes very significantly. But the majority of kids who have sensory problems don’t have autism,” says Dr. Miller.
The distinction gets even more confusing when it comes to ADHD. “We’ve found that about 40% of kids who have one, have the other, so there is overlap,” says Dr. Miller. “But they are two separate diagnoses that coexist – they are not the same thing. A child with ADHD has an impulse control issue, and extra sensory information doesn’t help. A sensory-seeking child calms down if you give them what their brain needs.”
Here’s an interesting finding: A study of 500 intellectually gifted kids over a two-year period revealed 35% had significant sensory processing issues. “I’ve heard many, many kids with SPD are very smart,” says Carol Stock Kranowitz, M.A., reknowned SPD expert and author of The Out-Of-Sync Child: Recognizing and Coping with Sensory Processing Disorder. “Which is confounding to adults who think, ‘If he’s so smart, why can’t he tie his shoes?'”
Kranowitz says each SPD child faces a unique composition of challenges. Sensory under-responders tend not to notice signals that protect them from danger, like people or cars coming at them. On the other end of the spectrum, a loud door slam can send an over-responsive kid scrambling for cover under the nearest table.
Fine and gross motor skill delays are common, and simple everyday skills, like learning to button a shirt, become an ordeal. “Dressing, eating, doing homework, sleeping:these are the things SPD kids have problems with. A lot of our kids are terrible sleepers and eaters,” says Dr. Miller.
The medical community has historically been somewhat dismissive of SPD. With such a vast variety of symptoms that younger kids may or may not grow out of, and the absence of a standard test (the Sensory Integration and Praxis Test only addresses Sensory-Based Motor Disorder and Sensory Discrimination Disorder) to confirm the diagnosis, the medical community has historically been somewhat dismissive of SPD.
But Kranowitz says parents who suspect their kids have sensory issues should ask themselves two questions: “Is the child’s problem getting in his way? And if not, then is it getting in everyone else’s way?”
Brooklyn mom Christine Evans answered yes to both, and felt vindicated when her son was diagnosed with SPD at eight.
“I didn’t know what it was,” she says. “It manifested into a behavioral issue. He wouldn’t wear underwear or socks, but we just thought that it was him being annoying. He’d hide under his desk to escape the way he was feeling, but couldn’t articulate those feelings to anyone. It was a disaster.”
After getting many calls from school about his behavior, she visited a neurologist, which was for naught. “For an older child, these evaluations are a bunch of crap,” she explains. “Most testing, whether done in school or outside, is done in a very quiet setting. But what sets these kids off is school, with lots of kids, noise and people touching you.”
A friend of Evans’s advised her to have him tested for SPD. Today her son is in a special education class, receives OT and goes to a sensory gym once a week.
In essence, the sensory gym is a playroom, with stuff like writing utensils, ball pits, ladders and sand tables. How does such basic equipment help kids with fragile wiring?
“Therapy doesn’t promise to fix or cure a child, but makes permanent changes in their central nervous system that calm them if they are over-excited, or wow a child that isn’t turned on enough,” says Kranowitz. “It also helps children participate in a social life and builds their self esteem, so they feel confident and competent.”
One social challenge is presented by frequent tantrums, which aren’t your run-of-the-mill meltdowns. Kranowitz says they come on fast, are disruptively intense and last quite a while.
“With most kids, you can diffuse a tantrum in a few minutes but with Maddie, it would go on for thirty minutes or longer,” says Julia Davis from South Bend, IN, who got called into school on a regular basis to deal with her four-year-old daughter’s self-regulation challenges. “She was really having a hard time functioning because of the noise levels, the lights and whatever else was going on,” says Davis.
Davis eventually took her daughter to the doctor. “She was a preemie and had a lot of medical complications up front,” says Davis. “We went to the pediatrician and were told she’s more immature emotionally and socially and that she’ll catch up. It made sense.”
As Maddie’s tantrums got worse, Davis began to look elsewhere for answers. “I couldn’t help but wonder what I was doing wrong as a parent. I didn’t know how to help her. I took her to a child psychologist, who insisted she was fine. I started Googling her behavior. She didn’t fit into autism, but the SPD checklist gave me an aha moment.”
“I couldn’t help but wonder what I was doing wrong as a parent.” Eventually, Davis found an OT, who diagnosed her with SPD and took her to a two-week SPD intensive at Miller’s STAR Center. She credits them with Maddie’s progress. “During the holidays, she was singing on stage in front of 200 people, singing and performing like a little ham. She would have never done that before therapy. She would’ve melted down.”
Tantrums aren’t always part and parcel of SPD. When Sheryl Braun adopted her son Sander from Hungary two years ago, she noticed her sensory seeker son’s oral fixation was more intense than the average kid compulsions, and he was struggling with fine motor skills.
“At night, he had one pacifier in his mouth, one in each hand and a spare, which is an alarm for a three-year-old,” Braun explains. “He couldn’t pick up a raisin and would cry out of frustration.”
She began in earnest to figure out what was going on. “We spoke to a neurologist who was dismissive, saying his EEG is normal,” says Braun. “They knew what it wasn’t, but they didn’t know what it was.”
Upon receiving his diagnosis, Sander began seeing an OT who specializes in SPD twice a week, as well as a Special Education Itinerant Teacher (SEIT) who shadows him in his classroom.
In order to get financial support, Braun has to tap dance around the real issue. “The committee for Special Education does not recognize Sensory Processing Disorder as a diagnosis,” says Braun. “I have to go through a whole certification process, and if I don’t follow up in a certain amount of time, they deny it. It’s frustrating because it’s quite expensive. It’s terrible because we are trying to help a child, and we aren’t getting the help we need to help a child.”
To help patients get insurance reimbursement, SPD-focused occupational therapists are accustomed to coding the symptoms without coming clean about the overall problem. “If we call it OT and diagnose it as a feeding disorder, ADHD or a coordination disorder, insurance will cover it half the time,” confirms Dr. Miller. “If you call it SPD, it’s the kiss of death. It’s a total game.”
Dr. Miller is spearheading an attempt to legitimize SPD with an entry into the psych bible, the next Diagnostic and Statistics Manual publication due in 2012. This would make insurance issues for families like Braun’s a thing of the past. It would also help the STAR Center grow. “It’s hard to get funding for research because it’s not in the DSM, but we can’t get in the DSM without the research,” says Dr. Miller. “It’s a catch-22.”
Meanwhile, there is a societal cost to increased attention to children’s disabilities. In the past few years, the number of children receiving special services has risen remarkably. During a recent SPD awareness meeting at my son’s school, the guest occupational therapists casually mentioned that the number of kids receiving OT services in New York City has leapt from roughly 8,000 to 38,000 over the past decade.
“If you call it SPD, it’s the kiss of death.” That trend is mirrored nationally. According to a U.S. Department of Education report, between 1991 and 2001, the number of five-year-olds receiving special services increased 30.7 percent; the number of four-year-olds served increased 75.9 percent; and the number of three-year-olds receiving special services increased 93.6 percent.
That’s a lot of ball pits. And according to a 2007 New York Times article on SPD, not all parents feel that OT helped their children any more than extra recess would have.
Many parents, like Evans, feel that the diagnosis and OT have made all the difference in their lives. “My biggest regret is that no one made me aware of SPD years ago,” she says. “Dealing with this has been one of the most difficult things in my life. He’s lost so much time in school because he refused to do any work and was having breakdowns. And there’s no way to get that time back.”
Either way, if Dr. Miller’s estimation holds true, taking your kids to the sensory gym may soon be as commonplace as taking them to the playground.