Libby French knew her son, Walker, had a few idiosyncrasies — like getting highly anxious whenever they boarded an elevator or escalator, suffering from severe separation anxiety and expressing an extreme sensitivity to touch.
“If someone came up to him and gave him a big hug, he’d freak out,” says French, a Highland Park mother of three.
But when the problems spilled over to school, French turned to her pediatrician, who supported her instinct to test Walker for learning differences. Testing at his school and at a private facility resulted in conflicting opinions on whether or not Walker had Attention-Deficit Hyperactivity Disorder (ADHD) or dyslexia. Frustrated and desperately searching for answers, French acted on a friend’s suggestion and placed a phone call to Education Consultant Kathryn Lundy. “She was a lifesaver,” French says. “She told us ‘I know what this is and it’s fixable.’”
The consultant revealed that Walker likely suffered from Sensory Integration Disorder (also known as Sensory Integration Dysfunction or SID and Sensory Processing Disorder or SPD). Additional testing at the Integrated Pediatric Therapy clinic in Dallas confirmed his condition.
French and her husband were shocked. After rounds of tests, no one had ever mentioned SID, a complex disorder of the brain that can make a child either over sensitive or under sensitive to certain types of stimulation. But after learning more about the dysfunction, their son’s perplexing symptoms started to make sense.
Sensory integration refers to the way people gather and interpret information from their environment, states Sally Fryer, occupational therapist and director of locally-based Integrated Pediatric Therapy. “Most of us have some glitches [in the way we interpret our senses]; for instance, you might be sensitive to sound. But children with sensory integration problems have more sensitivities than the average person. These sensitivities make it difficult for a child to function normally in their environment,” says Fryer.
Comparing SID to a traffic jam, Fryer explains SID patients experience a jamming of information traveling on the highway between their nervous systems and their brains.
The symptoms vary widely, but some examples include coordination problems; sensitivity to touch; difficulty transitioning from an active activity to a less-active activity; handwriting difficulty; and attention problems.
For Walker, SID meant that he couldn’t simply pick up a piece of paper — he had to sniff the paper before writing on it. Before eating a packaged Jell-O dessert, Walker would inspect the container with his nose. “He had to smell everything,” his mom says. “We just couldn’t figure it out. But he couldn’t trust his senses. He knew from experience that his hands or his tongue had given him unreliable information.”
Therapy in a Hammock
The identification of SID is not a black and white process; evaluation can involve testing of gross and fine motor skills, a parent interview regarding the child’s development and subjective assessment of his physical development (administered by a therapist in a gym-like setting, analyzing a child’s balance and coordination), says Fryer. “We put all of these tests together and identify the patterns,” she explains. “The patterns of behavior or frustration will help us see what sensory problems the child is struggling with.”
Each treatment is tailor-made to the child’s condition, but most plans tend to span over a time period of six months to a year. Children who undergo therapy for SID typically do not require additional treatment in their later years (though there is no cure). French enrolled Walker in twice-weekly pediatric occupational therapy sessions that immediately eased his discomfort, she says.
In Fryer’s clinic, kids hang in hammock swings, throwing beanbags into baskets or pitching plastic balls at bowling pins. It looks like play, but it has another purpose, says Fryer: When absorbed in a game, the child learns to deal with previously dreaded situations.
“The therapy helps establish and strengthen pathways in the mind that allow a child to overcome previously feared activities,” says Fryer. “For instance, if a child has tactical [touch] sensory issues, therapy will involve exercising the tactile nervous system, requiring the body to slowly learn how to more efficiently send information about touch to the brain.”
The wiring of sensory pathways to the brain occurs naturally during childhood development; however, some children’s development goes awry — for reasons unknown to researchers — resulting in sensory integration problems or more serious spectrum disorders such as autism. Often times, sensory problems appear in children who have been institutionalized, especially those who spent their infant lives in an orphanage.
“These children haven’t had the normal sensory stimulation, making them much more susceptible to sensory integration challenges,” says Fryer.
While occupational therapists have been treating children with SID for nearly 30 years (since the release of the breakthrough 1973 book by psychologist and occupational therapist A. Jean Ayres called Sensory Integration and Learning Disorders), there still remains a grey area between the offices of pediatricians and the therapy rooms of occupational therapists. And the discrepancies concerning SID go back to the core of medical training: the American Psychiatric Association’s (APA) Diagnostic Statistical Manual (DSM) — a physician’s Bible of psychiatric disorders.
The DSM does not recognize sensory integration as a stand-alone disorder (as it does autism spectrum disorder or ADHD); therefore, many medical practitioners question whether the condition exists at all, saying SID problems likely stem from other physiological conditions.
“[The argument] is more about having a tool for people to talk a more common language,” Fryer says. This common language would arguably provide better accommodations for sensory-challenged kids at schools and allow reimbursement from insurance companies for therapy that can cost thousands of dollars a year.
Dr. Lucy Miller, the country’s leading research scientist specializing in sensory processing disorder, is spearheading a nationwide fight to add SID to the pages of the DSM and term sensory integration as a research-proven disorder. (Thousands of researchers, physicians, occupational therapists and parents signed Miller’s 2007 petition to the APA for inclusion of SID in the fifth edition of the DSM, to be published in 2012.)
Miller, founder and director of the Sensory Processing Disorder Foundation in Denver, Colorado, states: “Mainstream recognition of Sensory Processing Disorder (SPD) will have a two-fold affect on the disorder – when children with SPD are recognized as a group, they will have better insurance coverage and better services available to them.
With the recognition of the DSM, we will be able to do the research that’s needed to better understand this disorder. Funds for research will be more available and we will have a greater chance of finding a cure.”
Fryer explains that a diagnosis of SID/SPD in children is a tricky process (and one that would become more defined with the APA’s recognition). She explains that children with SID can be hyperactive or hypoactive — meaning that they either seek out sensory stimulation (by disruptive, hyperactive behavior) or shy away from stimulation (through withdrawal).
“This is where some of the problems occur [with diagnosis] because the hyperactive behavior is recognized off the bat as Attention-Deficit Disorder, when in fact the child is really just craving more sensory input as a way to learn more about his faulty senses.” Fryer says.
And, she adds, the condition’s rate of occurrence is rapidly growing in North Texas and across the country. “Who knows how many cases of SID would crop up if we had more research and training that would better educate people about sensory integration problems,” asserts Fryer.
In the meantime, however, Fryer says she’s more concerned about what therapists and physicians can do to ease the difficulties of SID children. “Treatment is vital to these kids and it doesn’t come in the form of a medication. Treatment is more or less active playtime for children that can result in life-altering changes for a child,” she adds.
Last year the Journal of Occupational Therapy published one of the first major studies of such therapies and its effects on children with SID. The study followed 24 children over 10 weeks and found that those receiving occupational therapy showed more improvement at attaining goals set by parents than a control group that didn’t receive therapy — results that could boost the disorder’s case with the APA.
While Walker had to repeat first grade, French says the second time around was much smoother. Now in third grade, Walker has a daily “sensory diet” that help Walker build upon the sensory pathways established in his occupational therapy sessions.
The third grader also attends a tutoring center “as an extra element to help him understand why his brain works the way that it does,” French says. “Now Walker is much more willing to try new things, and he no longer has a terrified outlook on things that are unknown to him.”
Walker’s five-hour-per-week tutoring sessions offer him an additional boost to help him organize his thoughts with memory exercises and language training — though, as Fryer says, not all children with SID require lifelong treatment (nor will Walker, who’s still actively training his developing mind). Most children train their brains in their youth and learn to adjust to their lives, as they grow older, Fryer adds (noting that some more serious cases of SID do require more lengthy treatments).
“It’s been a lot of work and a lot of driving, but the payoff has been huge,” French asserts. “I think a lot of kids are being misdiagnosed, and as a parent you have to be their advocate to make sure they get the help they really need.”
Miller adds: “Parents need to be assured that if they have a twinge of doubt about their child’s behavior, have your child evaluated. Go with your gut instinct — you are the expert on your own child.”