It’s a sticky summer’s day. While kids rip across the splash pad, shrieking as the spray hits their faces and cools their gangly bodies, my six-year-old son, Jackson, sits on the sidelines, watching. He won’t join them. If so much as a sprinkle of water touches his skin or clothes, he will scream as though he’s been showered with acid, he’ll cry and rage and insist that I change his (bone-dry) T-shirt.
Though my son’s reaction may sound extreme, it’s not rare. In fact, with an estimated five to 15 percent of school-aged children affected, sensory processing disorder (SPD) is more prevalent than autism spectrum disorder and just as common as attention deficit hyperactivity disorder. For such kids, the world is simply too much. Too loud. Too bright. Food is either too soft or too crunchy. The labels and seams on clothes too scratchy. These aren’t mollycoddled complainers who need to “toughen up,” but children with a genuine physiological condition that affects how their central nervous system processes input from their senses (sight, sounds, touch, taste, smell and movement), leaving them under- or over-responsive to stimuli. For them, everyday activities like eating and dressing pose an almost intractable challenge and an ever-present threat.
Is sensory processing disorder an overlooked condition?
SPD first entered the popular lexicon when A. Jean Ayres described the sensory integration theory in her 1979 book, Sensory Integration and the Child. A 2013 study by the University of California in San Francisco identified through MRI imaging “quantifiable differences” in the brain structure of otherwise typically developing sensory-sensitive kids.
Yet, incredibly, since it often coexists with other disorders, SPD isn’t formally recognized as a distinct psychiatric condition in the latest Diagnostic and Statistical Manual of Mental Disorders. Unfortunately, that means many kids aren’t getting the support and treatment they need. It’s a reality that concerns Ellen Yack, a Toronto occupational therapist in practice for the past 35 years and co-author of Building Bridges Through Sensory Integration: Occupational Therapy for Children with Pervasive Developmental Disorders.
“It still amazes me how many doctors are not aware of this problem and make parents feel guilty for accommodating their child’s sensory needs, or who refer kids to behaviour therapists who use punishment strategies when children have a neurological problem that is causing them distress,” says Yack.
Erin Walsh, a mom of two from Waterloo, Ont., can relate. Her seven-year-old daughter, Ava, was diagnosed with SPD at age four. When Monday morning rolls around, Walsh has on hand an arsenal of at least three potential school outfits—the same soft pair of yoga pants in an assortment of colours, loose-fitting underwear, seamless socks and carefully chosen shoes—that can be swapped at the last minute.
“Hair brushing has to be done in five or six segments in a morning, because she can’t handle it,” says Walsh. “A stroke of the hairbrush can send her into a full-on meltdown because it hurts her so much.”
And so for kids like Jackson and Ava, the world shrinks and constricts little by little until many rich childhood experiences are off-limits. No playdough or fingerpaint. No bare feet on the beach or on the grass. No birthday parties, fireworks or amusement parks. Even at home there is the potential for crisis. The sudden roar of the hand blender can send my son howling and clutching at his ears.
How sensory processing disorder affects behaviour
Yack says that we all respond to sensory input slightly differently. “Some people are irritated by tags in their collars, notice minor changes to their favourite bottled sauces or can’t stand the sound of a chair scraping on the floor.” It only becomes an issue to the extent that it inhibits and interferes with a person’s day-to-day functioning. “For children with SPD,” says Yack, “these inputs are not just irritating, but can significantly affect their behaviour and ability to participate successfully at home, school and in the community.”
Stanley Greenspan, author of The Challenging Child, likens SPD to a car that is hard to keep on the road. Not surprisingly, when kids are working overtime to try to regulate their senses, their behaviour isn’t always exemplary. At school, they may disrupt the class or struggle to concentrate on lessons. In the thralls of an explosive reaction to stimuli, children may feel scared and out of control. Some withdraw, while others turn aggressive.
For parents, avoiding certain situations can seem like an easier prospect than dealing with the potential fallout, not to mention the waiting judgment of a bystander. “Because Ava can’t control the noise or the feel of her environment, it makes for many tears and screams,” says Walsh. “We get the dreaded looks from those who think we should control our spoiled child. Sometimes people feel bold enough to tell us what we should do and how we should do it.”
The sensory “diet”
Typically identified between the ages of three and 10, children may see an occupational therapist (OT), who will prescribe a series of exercises designed to help them process stimuli. Depending on the child, a sensory “diet” can involve things like jumping on a trampoline, being squished in cushions, playing with shaving foam or having his body gently brushed. The idea is that gradual, low-dose exposure will ultimately result in a more adaptive response to certain stimuli.
Sadly there is no quick fix for SPD. With time and adequate support, however, kids may grow to develop their own coping mechanisms. Often it’s a case of baby steps. Jackson’s OT began by touching his face with a wet face cloth and moved onto squirting him with a bottle. Swimming seems far off, but I’m optimistic that he will someday come to, if not enjoy, then at least tolerate the pool.
In the lead up to Canada Day, Ava watched videos of fireworks. She was excited about the forthcoming display, but when the first of July rolled around, the booms and bangs in the sky were too much for Ava to bear.
“We’re hopeful that with time and therapies and patience—lots of patience—we’ll all be able to have a somewhat ‘normal’ life,” says Walsh. “But perhaps most importantly, give Ava the capabilities to enjoy life with us and, one day, on her own.”
Carolyn Dalgliesh, author of The Sensory Child Gets Organized, offers these suggestions:
Create a chill-out zone for emotional times
Keep it clutter-free, quiet and dim. Some children favour a bottom bunk, the corner of a closet, even under a desk or table. Items you may wish to include: favourite books, noise-cancelling headphones, sensory toys, a beanbag chair and/or weighted blanket. The most important factor to note here is that the chill-out zone remains a refuge, not a place of punishment.
Use visual aids
Order and consistency are soothing. Sensory kids are often visual learners who thrive when they know the system. Label bins, drawers and baskets with photos.
Map out a schedule
Look for patterns. Use checklists. Certain times of day are often more challenging than others. Breaking down a situation or routine (e.g. homework plan) into simple tasks on a whiteboard prevents a child from becoming overwhelmed.
Managing sensory processing disorder at school
Tips for teachers to make kids with SPD more comfortable in the classroom.
1. Listening to calming music
2. Fidget toys (even hair elastics) and inflatable cushions for long periods of sitting to help with focus and concentration
3. Chewable jewellery for oral cravings
4. Doing wall push-ups and jumping jacks for physical stimulation
5. Self-brushing in a bathroom stall to provide deep pressure
6. Stretching before and after periods of sitting
7. Scheduled walking and movement breaks
8. Ear plugs/muffs for fire drills and assemblies
9. Special place (front or end) when lining up
10. Classroom seating away from distractions like bright windows or
adapted from sensorysmarts.com
A version of this article appeared in the January 2015 issue with the headline “When the world is too much” p. 30.