Probation officer Sandra Cardone couldn’t help but think the worst. Her son Christopher, now 6, misbehaved at school daily, threw frequent fits at home, refused to kiss his grandparents and even jumped on a little girl in a foam pit without showing remorse.
“That scared the hell out of me,” says Cardone, 49, who lives in Rocky Hill, Connecticut. “What is my son?” she thought. “Is he going to be a criminal?”
Chicago resident Kelly Jurecko’s mind went elsewhere. Her son Riley, now 9, was a fearless baby with an exceptional pain tolerance. He was walking at 7 months and running soon after. “We called him little Brian Urlacher,” says Jurecko, 34, referencing the former Chicago Bears linebacker. “I thought he was so tough, so cool.”
Truth is, there was a better explanation for Christopher and Riley’s behavior than future criminal or football-player-to-be: sensory processing disorder, a neurodevelopmental condition in which the brain misinterprets sensations such as light, sounds, movements and textures, according to the Sensory Processing Disorder Foundation.
“[People with SPD] may experience normal sounds as painfully loud, lights can be experienced as too bright and a gentle touch may feel intrusive and intense,” says Roya Ostovar, director of the Center for Neurodevelopmental Services at McLean Hospital in Belmont, Massachusetts. “It’s a struggle to get through the day-to-day activities such as showering, brushing your hair or being in a classroom with lots of children around you.”
That was the case for Christopher. He would scream when the sun hit his eyes, “freak out” if his socks rubbed his feet the wrong way and even collapse in the preschool line because his sense of balance was off. “When he would feel overwhelmed, he would just misbehave … because he couldn’t verbalize what was going on,” Cardone says.
For Riley, the condition manifested the opposite way, giving him the urge to move from a young age. Even if he hurt himself, he didn’t get upset because he didn’t process the sensation of pain normally. Later as a toddler, he grew introverted — not knowing how to handle the world around him. He wouldn’t talk, barely ate and couldn’t sleep. On his first day of preschool, he bit the teacher because he didn’t know how to verbalize what he wanted. “Then I found out it was because he had sensory processing disorder,” Jurecko says. “It was shattering for me.”
An Evasive Diagnosis
Sensory processing disorder, which research suggests affects up to 16 percent of school-aged children, is not an official diagnosis in the American Psychiatric Association’s latest diagnostic manual, but it’s increasingly recognized among clinicians and teachers, says Ostovar, also an assistant professor of psychiatry at Harvard Medical School who wrote the 2010 book “The Ultimate Guide to Sensory Processing Disorder: Easy, Everyday Solutions to Sensory Challenges.” While it’s not clear what causes the condition, it seems to have a genetic component and has been linked to premature birth in some kids, says Dr. Pratik Mukherjee, an attending neuroradiologist at the University of California–San Francisco.
The condition is often mischaracterized as an autism spectrum disorder, which shares symptoms of SPD, or attention deficit hyperactivity disorder, which can cause kids to act out in ways similar to SPD. It’s also frequently mislabeled as a behavioral problem or gender issue. “That’s the thing I’ve heard over and over again from the parents is that, ‘He’s just a boy,'” says Jurecko, who co-founded the nonprofit SPD Parent Zone after her son’s diagnosis.
While SPD is similar to other neurodevelopmental and behavioral conditions in some ways — for example, like autism, there’s a spectrum of severity and it’s more prevalent among boys — it’s a distinct condition, says Mukherjee, whose research has shown differences in the brain’s white matter between kids with SPD and those with autism.
“It’s becoming clear that there are a lot of kids who have sensory processing issues just like autistic kids do, but do not have the other core features of autism,” he says. For example, people with SPD can have normal social skills and communication, traits often lacking for people on the autism spectrum. They also don’t show repetitive behaviors such as hand flapping or rocking that are common among people with autism. And, unlike people with ADHD, they won’t get used to sensations. “At this point, we don’t really believe you can outgrow these issues,” Ostovar says. “It’s really learning how to manage them and how to manage them in socially acceptable and adaptive ways.”
Still, plenty of doctors and educators don’t recognize the differences between SPD and other conditions, if they’ve heard of it at all. That’s why it’s particularly important for parents to listen to their gut if they believe something is “off” with their child, says Jurecko, whose pediatrician had brushed off her concerns because Riley was hitting developmental milestones. “No matter what the doctors say or teachers or family or friends [say], you have to trust your intuition,” she says. “You’re the parent, you’re the expert.”
Living With SPD
One day last year, Cardone was talking with a colleague about Christopher, whose behavior in school resulted in teachers calling her daily. “Your story sounds so much like my son, and he has sensory processing disorder,” Cardone remembers her colleague saying. “And I said, ‘What the heck is that?'”
Cardone immediately Googled to find out, and her colleague’s suspicion was confirmed. “Every single story that I read, I saw my son’s picture,” she says. “It was very hard at first, but at least I could see that it had a name, and there was help and things that I could do.”
One of those things was calling an occupational therapist, who diagnosed Christopher in April with SPD. Occupational therapy is the most widely accepted treatment for SPD, says Ostovar, noting that each child will receive an individualized treatment plan based on their particular sensitivities. Many therapists will put children on a “sensory diet,” creating specific activities that stimulate the senses in a controlled, even fun, way. For example, a child who is sensitive to sound might listen to therapeutic music, while one who has trouble with movement will play on a swing. Kids who seek sensations like Riley might find a weighted blanket calms them down.
“The hope is that the child will learn these interventions and be able to identify them … and eventually be able to tolerate those things,” Ostovar says.
For Christopher, who does occupational therapy weekly, the improvements are noticeable. He can better verbalize what’s overwhelming to him, and last month, he wore long sleeves for the first time. Before, he insisted they be rolled up, lest he throw a tantrum. “It’s hard to know your child goes through this every minute of every day, but at the same time, he’s such a sweet, sweet boy,” says Cardone, who has also taught Christopher to meditate. “He brings so much joy into my life.”
Riley, who was diagnosed with SPD at age 2, also worked with an occupational therapist and still sees a speech therapist. Jurecko noticed a change right away. “The first night, he slept for the first time ever,” she says. Today, he’s a talkative, happy fourth-grader. “He has surpassed all my hopes and dreams for him,” Jurecko says. Other parents of kids with SPD should take heart. “There’s so much hope and there’s so much help and things will get better,” she says.
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Does Your Child Have Sensory Processing Disorder? originally appeared on usnews.com
