It's unbearable to wear clothing with tags. It's impossible to use scissors, no matter how many times you try. All mushy or soft foods are unbearable - not because of the flavor, but the consistency.
Depending on whom you ask, it's either common childhood behavior, a neurological disorder that requires intervention or something in between. Its name is sensory processing disorder, and it occurs, advocates say, when the brain cannot properly process incoming signals for an appropriate response.
Sensory research is still young; prominent California occupational therapist and psychologist A. Jean Ayres began studying sensory integration problems only in the 1960s. Many skeptics scoff at the notion of such a disorder and say the root of the problem has more to do with bad behavior or neurological immaturity.
But families who live with it and the occupational therapists who treat children with the issue say there's no doubt it exists.
Sensory processing disorder, experts say, is defined by a person experiencing significant disruptions in the daily routine. The disorder is usually found in children, though adults can have it too.
"Everything's coming in and getting messed up for them," said Heidi Tringali, a Charlotte occupational therapist who sees a lot of children with sensory issues. "It tastes too strong, smells too strong. They're just disrupted ... and their existence is so much more difficult than just a typical developing child."
There have been few published studies on SPD's prevalence. But one study done in association with the Sensory Processing Disorder Foundation estimates that one in six children is affected by sensory issues, which can range from mild to severe. However, the American Psychiatric Association has not officially recognized SPD.
It's important to note the differences between a child with sensory processing disorder and one who's just picky or problematic, experts say.
For example, a typical child who steps from an air-conditioned room outside into the heat may whine and complain for a bit. But for a child with sensory problems, it can be almost unbearable.
A typical child who complains that a poke feels like a shove may just be trying to get attention or pick a fight. But to a child with sensory problems, that poke really does feel like a shove.
Kids can be clumsy, but children with sensory problems may struggle in vain to write with a pencil because the motor skills are just so off. Academic and social problems often ensue.
Children's lives aren't segmented, so "if something is going awry, then other things are going to be affected," said Toni Schulken, director of the Charlotte occupational therapy practice Pathways for Learning.
Mixed-up signals
Sensory processing problems occur when the brain's neurons can't correctly interpret incoming signals, said Lucy Jane Miller, executive director of the Sensory Processing Disorder Foundation in Colorado.
When the signals are mixed up, that affects touch, movement and balance, and the perception of space, she said. In the sensory processing world, these are known as the tactile, vestibular and proprioceptive systems.
But there's no cure for sensory processing disorder. Rather, occupational therapists help patients learn to cope.
The SPD Foundation is trying to get the disorder recognized in the Diagnostic and Statistical Manual of Mental Disorders, the official catalog of mental disorders. The next edition, known as the DSM-5, comes out in 2013.
To put things in perspective, autism wasn't included in the DSM until 1980. Before then, it was seen as childhood schizophrenia.
But Eric Taylor, who is in the work group for childhood disorders for the DSM-5, said sensory processing disorder isn't in the current draft because there isn't a clearly defined description or set of symptoms.
For a disorder to be added to the manual, it must fulfill a list of requirements that includes scientific validation and distinction from other disorders, said Taylor, a professor at the Institute of Psychiatry at King's College in London.
"We're not ruling it out for all time and not saying it's a definite 'no,' it just hasn't yet passed the mark," Taylor said.
Do they grow out of it?
Research is being done to find a cause - what makes those neurons incorrectly interpret multiple signals, said Miller, of the SPD Foundation.
Brainwave research done by the foundation suggests that children with sensory issues have a jumpy response to sensory stimuli, no matter how many times they're exposed to it. Typical children would have jumpy responses only the first or second time, Miller said.
Some doctors say that sensory issues are real, but that they don't indicate a disorder so much as an immaturity of neurological development. In other words, kids eventually grow out of it.
"Children who appear to be hypersensitive to certain stimuli - that is a real phenomenon," said Dr. DuBose Ravenel, a High Point pediatrician who focuses on behavior. "But the question is whether it represents a pathology, or just some combination of factors" like the child's temperament and parents' reaction to behavior.
Ravenel co-wrote a book that speaks out against the labeling and diagnosis of attention deficit hyperactivity disorder with family psychologist John Rosemond, who writes a parenting column that appears in The News & Observer. Rosemond argues that the symptoms exhibited by children with sensory processing disorder are really just behavioral problems that can be handled with discipline.
If a girl exhibited symptoms and was diagnosed with SPD but a behavioral approach cured her, that "impeaches the theory behind it," Rosemond said.
Parents see the effects
Some parents beg to differ. They've seen the problems with their children and the effects of therapy.
At Pathways for Learning in Charlotte, therapists work with kids in rooms filled with gym mats, swings, trampolines and crafts.
Seven-year-old Antonio Turrisi's session on a recent afternoon started with a ride on a giant swing. His therapist, Courtney Enos, pushed him in wide circles to right his sense of balance.
Then, she had him do inchworm walks around a big blue mat, which requires the ability to implement "praxis," or motor planning, to do the multi-step crawl. Next was a strategy game conducted while lying in a suspended hammock, then a clay-and-beads exercise followed by a word search.
Before therapy, Antonio's mom, Jennifer, said, he was always unusually clumsy and could barely write his name across a piece of paper. She took him to a number of other therapists, but he made little progress - until now.
After about eight months of therapy, Antonio can sit still in a chair and write all the uppercase and lowercase letters of the alphabet.
Other diagnoses first
Cary resident Connie Higdon took her son to five experts before she was able to figure out what was wrong. Clay, now 12, didn't pay attention during home-schooling classes, and neither discipline nor incentive could get him to focus.
Doctors' and therapists' diagnoses ran the gamut from "just being a little boy" to high-functioning autism, but Higdon knew none of those was right.
Finally, they saw a therapist who seemed to figure out the problem, and Clay tried occupational therapy for SPD. Nearly two years later, he has made big gains and receives less therapy.
"It was finally something that I could do where I could see an improvement," Higdon said. "As time goes by, he starts to learn what he needs" to calm himself down and get the sensory input he craves, like chewing gum.
Clay goes to an occupational therapist and to a chiropractor in Raleigh, Alisha Davis, for the disorder. Fifteen percent to 20 percent of Davis' patients have developmental or sensory issues. She helps them by adjusting areas of their spine or hips that are out of balance.
"Sometimes I will assign sensory exercises adapted for home use if" movement and balance problems come up, Davis said.
Clay still has his struggles, but the key is he knows how to deal with them now, Higdon said.
"It's really one of those things that as a parent, we know when something's not right," she said. "It is such an incredible blessing when you find people that are willing to ... come alongside you and work with you to make your child be the best he can be."
