By Jenny Jarvie
June 24, 2014
Thousands of parents say it is. The psychiatric establishment disagrees.
Jacob Trigg was barely three years old when his mother, Pamela, began to notice he was not quite like other boys. While his classmates ran amok in preschool, he would find a quiet corner and sit by himself. At the age of four, he begged to leave restaurants, refused to play sports, and showed little interest in making friends. It took several adults to hold him down for a haircut.
For most toddlers, tantrums and clumsiness are just a part of life, something they grow out of. Yet a burgeoning number of parents, like Pamela Trigg, are reporting that their children exhibit baffling, intense behaviors. Some overreact, recoiling from loud noises or refusing to wear itchy clothes. Others underreact, showing little reaction to pain or crashing their bodies into walls.
In the last decade, tens of thousands of children have been labeled with sensory processing disorder, a once-unheard of condition which advocates liken to a neurological “traffic jam” that prevents the brain from handling external stimuli and making sense of certain sounds, sights, smells, tastes, and textures. The Sensory Processing Disorder Foundation, a 35-year-old research and advocacy group based in Denver, claims SPD disrupts the everyday lives of more than four million Americans.
Many families find such behavior so debilitating that they are hiring occupational therapists to teach them how to play with their kids or to brush their skin with soft-bristled brushes. Across the country, clinicians charge as much as $200 an hour to encourage children with sensory problems to spin in slings and hammocks, play with shaving foam, and blow bubbles through a hose.
|Sensory Processing Disorder Foundation|
For some, this is sheer quackery. There is still little consensus within the medical community on whether SPD is an actual disorder, let alone whether many popular treatments work. Last year, the SPD Foundation failed in its decade-long campaign to convince the American Psychiatric Association to include SPD in the fifth edition of Diagnostic and Statistical Manual of Mental Disorders.
In 2012, the American Academy of Pediatrics claimed it is unclear whether children with sensory problems have a distinct disorder, or whether their challenges are linked with other disorders such as autism, ADHD and anxiety. It urged doctors to caution parents that the effectiveness of sensory integration treatments are “limited and inconclusive.”
With so little recognition for SPD from the medical establishment, parents struggle to get insurance companies to pay for therapies (many therapists coach parents to get around the problem by claiming other diagnoses on insurance forms). Scientists also find it a challenge to win research funding.
“It’s a Catch-22,” said Dr. Lucy Jane Miller, founder and director of the SPD Foundation. “It’s hard to fund the studies because SPD is not a real diagnosis, yet it can’t be a real diagnosis without more studies.”
Part of the challenge is that sensory problems tend to overlap with other disorders—Jacob Trigg has also been diagnosed with anxiety and ADD—and they can also occur in otherwise normal toddlers, too. On the one hand, advocates for SPD complain it often goes underdiagnosed, swallowed by other conditions because it is not understood by the medical community. Kids are frequently undertreated, even inappropriately medicated, due to a lack of information and training, they say.
On the other hand, skeptics worry that families who pour all their efforts into popular but unproven therapies risk wasting time and money on what could turn out to be regular growing pains, or delaying a diagnosis of some other disorder, which requires entirely different treatment.
For families, the stakes are high. Without intervention, parents are warned their children may underperform at school and develop secondary—and potentially lifelong—behavioral problems such as anxiety, aggression, or depression. The SPD Foundation even cites Adam Lanza, the Sandy Hook Elementary School shooter who was identified as having SPD as a young boy, as an example of what can go wrong if sensory problems go untreated.
“Without treatment, children who have little problems turn into older children who have bigger problems, who turn into adolescents who have huge problems and adults who are failures,” said Dr. Miller. “If you don’t get adequate treatment when you’re young, it snowballs.”
In refusing to recognize SPD as an official disorder, is the medical community effectively blocking children with sensory problems from potentially successful treatments? Or are therapists themselves rushing to diagnose and treat SPD—even in the absence of a clear diagnostic method, or firm evidence that popular therapies turn sensory problems around?
The concept of sensory processing disorder—or sensory integration dysfunction, as it is also known—was pioneered by a California occupational therapist and psychologist, A. Jean Ayres, who argued in a 1972 book, Sensory Integration and Learning Disorders, that some children had trouble handling and processing sensory information in their environment, and that such deficits led to wider developmental and learning problems. In the early 1990s, awareness of SPD spread after Carol Stock Kranowitz, a preschool teacher, published a book about it called The Out-of-Sync Child.
Even without acknowledgement from pediatricians and psychologists, SPD has gained ground—if not as a formal medical diagnosis, then as a loose popular identity. In the last decade, many parents have built informal DIY networks, getting together on online forums and listservs to chronicle their struggles (“Venting… That’s all”), appeal for advice (“HELP MY SON WILL NOT GET DRESSED!!!”), and swap tips (“I found a way to make showers less evil”).
On one forum, a British mother complains her five-year-old throws tantrums any time he has to wear footwear. Parents on either side of the Atlantic pitch in, suggesting canvas shoes, soft-cotton socks and socks without seams. A few days later, the mother returns to proclaim the ordeal over—a store clerk solved the problem by inserting an inner sole—only to admit the next day that the solution was short lived. “Back to the drawing board,” she writes.
A month later, she logs in to report that her occupational therapist recommended a daily ritual of rubbing her son’s feet across the carpet, jumping 20 times, soaking his feet in cold water, and “squishing” them before putting his socks and shoes on: “Boy, I don't think I have time to do all this before school.”
While families exchange ideas, a whole new marketplace is opening up. Parents can invest in “sensory-friendly” products and attire, from weighted vests to chewable jewelry. They can fit their homes with sensory gyms (some parents have launched crowdfunding campaigns for home therapy equipment). They can send their children to schools that cater to students’ sensory intolerances and allow them to move around, take breaks and wear headphones. Public libraries host sensory storytimes, theaters stage quiet performances with modified lighting, museums conduct out-of-hours tours with cool-down rooms. Even hair salons are beginning to offer “sensory friendly” cuts.
As a wider range of everyday behavior described in medical and psychiatric terms, many are skeptical of labeling a wide swath of children with yet another disorder that scientists and doctors barely understand. Already, one in six children in the United States has been diagnosed with a developmental disability such as autism or ADHD, according to the Centers for Disease Control and Prevention. The agency estimates that more than 10,000 American toddlers have been medicated for ADHD, even though most experts agree that hyperactive and impulsive behavior are normal traits in young children.
“Our idea of normal is shrinking,” said Dr. William Carey, a pediatrician at the Children’s Hospital of Philadelphia. “If you’re shy, you have a social anxiety disorder. If you have a hot temper, you have intermittent explosive disorder. Too many variations of normal are being labeled as defects in the child when the problem often lies in the child’s environment.”
Certainly, it’s hard to imagine any parent scrolling through the SPD Foundation’s online checklist without worrying. After urging parents to talk to a doctor when “more than a few” symptoms are found, the list begins:
- “My infant/toddler has problems eating.”
- “My infant/toddler refused to go to anyone but me.”
- “My infant/toddler has trouble falling asleep or staying asleep.”
With sensory problems so diverse—straddling a continuum from mild to severe—popular diagnoses often seem to fall short in distinguishing between normal developmental delays and extreme dysfunctional behavior. Many critics of SPD say there needs to be a more rigorous framework for diagnosis. Since Ayres came up with the concept of sensory integration deficits, researchers have developed several tools for evaluating sensory problems, yet there is still no commonly accepted method.
Some therapists use Ayres’s Sensory Integration and Praxis Tests, a battery of tests that assess visual, tactile, and kinesthetic perception and motor performance; others use some form of Sensory Profile, which relies on parent-reporting, standardized testing, and clinical observations.
Research also tends to blur normal and dysfunctional behavior. For example, one study is based on a questionnaire in which 16 percent of parents reported their 8-year-olds were “bothered by” at least four of 41 sensations, including sirens, concerts, cutting of fingernails, and clothing tags. Parents were not asked how bothered the children were—mildly irritated or severely distressed?—and there was no independent evaluation of the children’s responses.
On the basis of this study, some claim that one in six children suffer from SPD. “If you ask a bunch of children if they’re bothered by tags in shirts, a lot of hands will go up—very often these are isolated symptoms that aren’t disrupting their lives,” admitted Dr. Alice Carter, a psychology professor at the University of Massachusetts in Boston who led the study.
Yet such variation between mild and severe symptoms, she noted, also characterizes other mental health problems, such as anxiety and depression, which are recognized as disorders. “At what point do we say there’s sensory impairment that’s causing enough of a problem to warrant more attention?”
Some parents claim that their kids eventually “age out of” sensory problems—either because of therapy or because they eventually figure out coping mechanisms. And yet, advocates for SPD have long insisted the problem is neurological—the brains of those with sensory problems are different and cannot handle information correctly—and they have begun to concentrate their efforts on funding neurobiological research.
Last year, a small study by scientists at the University of California San Francisco found structural brain abnormalities in children whose parents reported sensory difficulties. Using advanced MRI imaging, they detected abnormal white matter in the back of the brain, the area that connects auditory, visual and tactile systems.
“There’s no question these children exist,” said John Foxe, a professor of pediatrics and neuroscience at the Albert Einstein College of Medicine in New York, who has examined the brain wave patterns of a small number of sensory-challenged children. His research, not yet published, has found that some otherwise normal children have difficulty combining sights, sounds, and touch as a whole experience, making everyday interactions overwhelming.
Still, Foxe noted that normal children with severe sensory problems, independent of other disorders, appear quite rare: His team struggled to find more than 18 such children to take part in his study. “Are they everywhere? I don't think so,” Foxe said, noting that he himself cut labels out of his clothes, but it had not appeared to impact his functionality.
To better understand the nature and extent of sensory problems, as well as the effectiveness of treatments, Foxe said there’s a need for extensive longitudinal studies that pick up more children at a younger age and track their development over time. “We’re barely scratching the surface now,” he said.
Even if there is a neurological difference in children with sensory problems, brain scans do not necessarily explain how interactions between genetics and environment may lead to SPD. “Understanding sensory processing is not as simple as saying, ‘There’s something different in the brain, therefore the child has this disorder,’” Dr. Miller said. “Instead, it’s more likely that a child has a pre-existing biological weakness and that the environment can exacerbate problems.”
For example: “Kids aren't outside riding their bikes. They’re inside playing games on iPads and computers. That could have a profound effect if the child has vulnerability already in their brain.”
It's a popular lament in America: We're overmedicating our kids. But treatment of SPD, unlike ADHD, does not involve drugs, rather a range of occupational and alternative therapies that seek to re-train the child’s sensory responses. Many clinicians offer play-based therapy in special gyms equipped with swings, slings, squeeze machines, and super-sized pillows. Some therapists use the Wilbarger Protocol to stimulate children’s limbs with soft brushes and gentle joint compressions every two hours for several days.
Other methods include listening therapy, in which a child hears specific sound frequencies and patterns on headphones, and craniosacral manipulation, which involves massaging the child’s cranium and spine.
Parents offer anecdotal support in favor of all of these techniques—and certainly, compared with attention deficit drugs such as Ritalin, such therapies seem harmless—but doctors note there is scant evidence that many of these treatments work. In the absence of standardized measures for assessing improvement over time, the American Academy of Pediatrics advises doctors to communicate with parents on the "limited data" and help families devise simple ways of monitoring treatment effects.
Even among those who advocate for SPD, there is considerable disagreement. Dr. Miller, who runs the STAR center in Denver, dismisses many therapies popularly associated with SPD—brushing, spinning, and wearing weighted vests—as quick fixes.
“A lot of it is myth and magic,” she said. “You can’t just throw fairy dust and make this problem go away… Why do people believe in them? I don't know. Because they want to believe in something?”
While Dr. Miller advocates an intensive approach that focuses on the child’s psychology and specific family goals, she admits there’s a need for larger, randomized trials that demonstrate the benefits of her own center’s treatments. The STAR center, which charges parents up to $3,000 for assessments and up to $300 for individual sessions, coaches parents on how to tune into their children’s feelings, develop positive relationships, and engage in more spontaneous play.
“Nobody does that anymore,” Dr. Miller said. “For children who are not vulnerable, that’s fine. But for these kids, play can set a platform for what social participation looks like. That’s the key… All this eye rolling, all the knee-jerk reactions—you don’t get that from parents.”
Yet if more parents are embracing questionable techniques, as Dr. Miller suggests, shouldn’t the onus be on doctors, therapists, and researchers to provide more evidence and identify successful treatments? Without a clear framework for diagnosing and treating children with severe sensory problems, many parents whose children are identified with SPD seem to risk lurching from one unproven therapy to the next.
Pamela Trigg, whose son Jacob has already gone through several intensive sessions at the STAR Center, has also spent years investing in weekly visits to an occupational therapist, brushing, and a weighted vest—all with limited success. This summer, family life unraveled as Jacob’s school routine came to an end, and Trigg spent the better part of a week struggling to get her son, now 8, to go to a summer camp on technology, a subject he picked himself based on his love of computers. “Four adults had to hold him down just to get him to stay,” she said. “It’s so hard to explain why an eight-year-old kid is so petrified of leaving his mother.”
This month, Trigg ordered anti-anxiety medication for Jacob—a step she had initially been loathe to take—and she also followed the advice of a friend and booked him for an assessment at a relatively new treatment center, Brain Highways, that claims to retrain the brain and recreate developmental milestones. Babies who spend most of their days sitting on their back in infant carriers, or young children who spend hours in front of television and computer screens, the theory goes, may have skipped vital stages in lower-brain development. The course coaches children—and even adults—to crawl and creep across the floor, like newborns, and adopt exercises they refer to as “lizards” and “swords.”
This may sound far-out—Trigg admits she doesn’t understand a whole lot about the program yet—but as Jacob approaches third grade, Trigg says she is open to just about any experiment. “I’m hopeful,” she said. “Any time you find a new therapy, you want to try it, and you want to make it work.”