Saran Pomianowski knew there was something unusual about her son when at age 6 months he started screaming in response to loud toys and bright lights at the supermarket.
The situation became more serious when he was asked to leave preschool because of his constant need to move. Her son, Eoin (pronounced Owen), was eventually diagnosed with sensory processing disorder, a condition in which the brain has trouble organizing information that comes in from the senses.
The disorder, which is not universally accepted in the medical community, was first identified in the 1960s by occupational therapist and psychologist A. Jean Ayres. The disorder received wider attention in 1998 with the release of Carol Stock Kranowitz’s book The Out-of-Sync Child, (TarcherPerigee), which has sold more than 700,000 copies.
Research indicates that at least 1 in 20 children may have sensory processing disorder, says Sheryl Benjamin, executive director of the Sensory Processing Disorder Foundation in Greenwood Village, Colorado. Children can be either overly sensitive or not sensitive enough to the stimuli around them. They may have frequent or long temper tantrums, difficulty being still or recognizing others’ personal space, and clumsiness or poor motor skills, among other symptoms. (See sidebar.)
“In preschools, these kids don’t know how to respond to all the sensations in the room,” she says. “They can be overwhelmed, they can cry, they can lash out. They can be quiet and cower in a corner.”
While sensory processing (sometimes called sensory integration) difficulties are accepted by the medical community as a symptom of autism and other disorders, sensory processing disorder was not included in the fifth edition of the Diagnostic and Statistical Manual of Medical Disorders – or DSM 5 – released in 2013. The year before, the American Academy of Pediatrics recommended that its members avoid referring to the disorder.
“Because there is no universally accepted framework for diagnosis, sensory processing disorder generally should not be diagnosed,” the academy’s statement said. “Other developmental and behavioral disorders must always be considered, and a thorough evaluation should be completed. Difficulty tolerating or processing sensory information is a characteristic that may be seen in many developmental behavioral disorders, including autism spectrum disorders, attention-deficit/hyperactivity disorder (ADHD), developmental coordination disorders and childhood anxiety disorders.”
But the problem is that some children have only difficulty with sensory processing and not the other conditions, say those who support a separate diagnosis of sensory processing disorder.
Children who go untreated may have trouble with motor skills and then become socially isolated, according to the Sensory Processing Disorder Foundation. The kids may be labeled uncooperative and “out of control,” and their parents may be blamed because people are unaware of the child’s “hidden handicap.”
Researchers are not sure what causes sensory processing disorder, but preliminary findings show it to be inherited. Other factors may include prenatal and birth complications and environmental issues.
Pomianowski says that though her son was later diagnosed with ADHD and Tourette’s syndrome (a neurological disorder characterized by involuntary tics and vocalizations), his first diagnosis was for sensory processing disorder.
She says the diagnosis helped by leading her to get her son treatment with an occupational therapist. The therapy helps “dramatically,” she says.
Now age 7, Eoin has learned techniques to help him manage stress. For example, he might chew gum to help him concentrate or he might ask for a movement break if he’s been sitting in his chair too long.
“He’s much, much better than he has been,” Pomianowski says. “He’s doing so well. We have a supportive school system that recognizes that for Eoin, sitting on the carpet is difficult, so they let him sit on a chair instead.”
Michael Monteiro, an occupational therapist at Cambridge Health Alliance, says the therapy he offers looks like play. “Therapy is similar to play but is actually much more focused as it looks at various parameters of differing sensory information that the child receives (registers), makes sense of (modulates), and ultimately uses,” he says. “These skill factors can have great impact on overall regulation of state (being at the just right place) for the child.”
For instance, if Monteiro is trying to help organize a patient’s proprioceptive sense (the body’s sense of where it is in space), he might have the child explore a jungle gym or use restrictive pedals on a bike or rollerblades to propel himself. “Exploring a variety of playground experiences, integrating climbing, jumping and swinging, coincided with simultaneous cognitive-based decision – for example, a game of ring toss while the child is positioned prone on a scooter board propelling himself across a linear surface – helps address the need for increased proprioceptive input and active engagement in an effort to develop motor planning skills.”
Sarah Schoen, associate director of research at the Sensory Processing Disorder Foundation, says the disorder hasn’t received full acceptance from the medical community yet because of misunderstanding. The symptoms can look, at first glance, too much like ordinary temper tantrums, or like parents aren’t disciplining their children enough.
“Now that we know there are underlying biological differences between children who have it and those who don’t, it gives credibility,” she says. “It’s not about their parents, but it is a neurophysiological difference from normal.”
Schoen says there is greater recognition of the disorder now than there has been since she began working in the field 30 years ago. She says the key to success in treatment is effectively involving the parents.
“If parents don’t learn how to address the child’s sensory needs, how to problem-solve when a child is having a meltdown, then it certainly does seem to limit success of therapy,” she says. “It’s not really about the one or two hours a week the child might spend with the therapist.”
Lori Yurtin, whose son has sensory processing disorder and autism, agrees.
“As a parent, you need to be engaged and learn and understand what they’re teaching,” she says, adding that early intervention helps.
Her son Chase, now 13, exhibited signs that he had some serious sensory problems when he was an infant. Unlike his twin sister, he was bothered by sunlight, wind and loud noises. Yurtin couldn’t take him on walks or bring him anywhere.
“This kid screamed the entire day and into the evening until we put him to sleep,” she says.
Though she knew something was wrong, she wasn’t able to convince medical professionals of that for some time. Chase didn’t get a diagnosis of autism or any treatment until he was 20 months old. Looking back, Yurtin says she wishes she would have been able to start him in occupational therapy earlier.
“I honestly think they could have helped sensitize him and given him a jump start,” she says. “He lost so much brain development in that time.”
Yurtin had to pull Chase out of preschool because he couldn’t tolerate the noisy kids. He didn’t start kindergarten until he was almost 7. He is able to attend school now but still struggles with temper tantrums and doesn’t have friends. Still, Yurtin is grateful that he is “moderately functioning” and isn’t any worse.
One roadblock some parents find when trying to get occupational therapy for their children is that insurance companies won’t pay for treatment for a diagnosis of only sensory processing disorder.
“Using International Classification of Diseases (ICD) diagnostic codes, such as Autism Spectrum Disorder (ASD) and developmental coordination disorder, can often increase reimbursement,” Monteiro explains. “Some plans cover evaluation but not direct treatment. Others carry limited treatment coverage yearly. Although some consider sensory processing disorder an area that is controversial, sensory processing treatment has been used by occupational therapy for more than 30 years with extensive research and collective data. Massachusetts’ own Department of Mental Health has fully endorsed the use of sensory processing strategies and has developed an initiative to support and reinforce the use of sensory processing treatment in all settings that it provides supervision.”
Parents continue to seek treatment for their children because they see results, even with the out-of-pocket costs. “Families who have embraced their children’s sensory processing needs are often committed to provision of services out of pocket,” Monteiro says. “They can also elicit the help of their child’s school by incorporating sensory processing treatment and consultation services in their child’s individual education plan.”
Guinevere Pilapil says she appreciates the effects occupational therapy has had on her 9-year-old son with sensory processing disorder. “He is maturing, and he is able to regulate himself a lot,” she says.
The Sensory Processing Disorder Foundation lists the following red flags for sensory processing disorder on its website (spdfoundation.net):
For infants and toddlers:
• Has problems eating or sleeping.
• Refuses to go to anyone other than a parent.
• Is irritable when being dressed or uncomfortable in clothes.
• Rarely plays with toys.
• Resists cuddling or arches away when held.
• Cannot calm self.
• Has a floppy or stiff body or motor delays.
• Is over-sensitive to touch, noises, smells or other people.
• Has difficulty making friends.
• Has difficulty dressing, eating, sleeping and/or toilet training.
• Is clumsy, weak or has poor motor skills.
• Is in constant motion, in everyone else’s face and space.
• Has frequent or long temper tantrums.
Searching for sensory games for your child to play? Occupational therapist Michael Monteiro offers these tips:
“Many Internet sites are readily available to explore the vast resources available through games and toys for sensory enhanced play,” he says. “A couple of great local sources include The Koomar Center in Newton (otawatertown.com) and Therapro in Framingham (therapro.com), both of which often provide free monthly lecture series to families and list activities on their websites. Therapro also has an online store full of games and equipment for use in sensory processing treatment. Weighted blankets for increased proprioception, oral motor toys to enhance diminished oral motor skills and neoprene body suits are all items available through this great resource. It is important to remember that a little information gained through Internet exploration can be a dangerous thing! Always consult your child’s therapist for specific guidelines on how and when to provide these opportunities to your child in the safest and most effective and appropriate ways!”