Living with sensory processing disorder

Cindy was cradling her 9-month-old son, Elias, against her chest when she and a room full of family simultaneously yelled “Surprise!” to an unsuspecting aunt on her birthday. The outburst shot like a bolt of electricity through Elias. He cried for an hour.

Xander, while growing up in the perpetual sensory assault of Manhattan, had to get off the train any time someone with a guitar entered his subway car to play for small change.

Cal had a more enigmatic reaction to stimuli. His mother, Jennifer, points to the oor-to-ceiling windows in her hilltop living room. Rooftops, forests, and the San Francisco Bay spool out for miles. Cal was 2 when they moved here from a small, contained apartment. “We got here and Cal was always running away from me,” recalls Jennifer. “He suddenly had all this space and stimulation. He was in sensory overload.”…

[Dr. Elysa]Marco’s practice is now spilling over with SPD kids like Elias, Xander, and Cal. She also has a significant social media presence on a Facebook page devoted to sensory processing disorders. Her contributions there resonate with the page’s 85,000 members, who are desperate for answers about their children’s seemingly bizarre reactivity. And in her lab, she is scientifically validating the life experience of SPD patients by identifying their brains’ unique structure and function and their distinct genetic profiles. Marco and her team have done so with great success by leveraging leaps in imaging technology and cross-disciplinary partnerships.

Her lab’s first research breakthroughs were back-to-back papers, published in 2013 and 2014 with UCSF radiologist Pratik Mukherjee, MD, PhD. In the first one, Marco and Mukherjee performed brain-imaging studies on kids with SPD, primarily boys, and compared them against typically developing boys. In the SPD kids, they found abnormal tracts in their white matter, a part of the brain that’s essential for perceiving, thinking, and learning. These tracts connect the auditory, visual, and tactile systems involved in sensory processing. It was the first time researchers had identified a biological basis for SPD.

In the second study, they compared structural communications in the brains of boys with SPD and boys with autism. They visualized connections among neurons by tracking water moving through the brain’s white matter. When water molecules move in the same direction, connections are thought to be directional and strong, while water going against the flow is a sign of faulty connections.

“The data was so clear. Kids with sensory processing differences just have different degrees of connection efficiency, particularly in the back part of the brain,” says Marco. This study was the first to show that kids with SPD have quantifiable and distinct differences in brain function. “These kids are not breaking down in school because their parents are doing a bad job or because they are bad kids,” says Marco. “Their brains are wired differently.”

Marco’s research and social media outreach is now arming parents, teachers, and clinicians all over the country – many of whom had never heard of SPD before – with the tools to diagnose and deliver help to kids earlier. The papers are also a wake-up call for neurologists, pediatricians, family, and friends who have questioned the disorder’s existence – a bittersweet validation of what parents of SPD kids already knew. A diagnosis that stands on hard scientific ground gives parents authority to explain rather than apologize for their kids’ behavior. But more importantly, it gives them license to forgive themselves – to say “I am not crazy,” as Elias’s mom, Cindy, puts it. “And this is not my fault.”

That scientific confirmation has shifted the conversation to finding viable treatments. Marco has developed a four-part framework for building a safe, positive world in which SPD kids can thrive. The first two elements – controlling kids’ environment and arousal – help parents figure out how best to structure their children’s physical and emotional surroundings. The third helps kids master healthier reactivity behaviors through brain training. The last helps kids achieve calmness through medications that soften the blows of overstimulation. 

“First, I encourage parents to get an occupational therapist,” recommends Marco, “to help them figure out both at home and at school what environmental changes need to be done to make their lives quiet and consistent. Because it’s the novel stuff that unseats them.” At home, that can be as simple as organizing their room. At school, it can mean putting tennis balls on the legs of chairs so they don’t make sudden sounds as kindergarteners squirm.

Some schools are more accommodating than others, and parents may find that out the hard way. Kids might be asked to leave a school, or parents might pull them out. “About 25 percent of the kids in my clinic end up in independent schools,” says Marco. Cal is in a small and very structured early intervention program, offered through the public school system, that has been incredibly effective in helping him understand the expectations of a school environment. Other SPD kids, like Xander and Elias, are schooled at home, either online or by teachers who come to them. Marco’s biggest takeaway on school choice is this: You don’t want your child to have post-traumatic stress from a school environment that can’t accommodate them. “Whether your kid is 3, 12, or 18, you need their self-esteem intact,” she says.

Her treatment plan also calls for a healthy diet free of simple sugars and simple carbs, a regular bedtime, and consistent exercise, all of which help control the arousal levels of kids – and parents. “If parents are out of control, their kids will be. As a simple start, I suggest they take 10 deep breaths if their kids start to escalate.”

Typically, kids with SPD have weekly occupational therapy sessions that focus on gross motor skills, as well as fine motor skills for those with dysgraphia.

“It is amazing to me to see how really smart kids with terrible handwriting get crushed by school,” says Marco. “On a short-answer test you may know volumes but fail because writing a single sentence is torture.”

Programs that work on cognitive control or attention are also critical for SPD kids who have ADHD in addition. Marco has partnered on this front with Joaquin Anguera, PhD, director of the clinical program at Neuroscape, UCSF’s translational neuroscience center. They are addressing cognitive control deficiencies with a new video gaming platform called Project EVO (developed by Akili Interactive Labs, a UCSF startup). On EVO, kids navigate a character along a winding path, avoiding obstacles and responding to variously colored targets. It’s designed to strengthen the brain’s ability to process and prioritize thoughts and external stimuli, and the game gets harder as a player gets better at it. “Playing EVO actually made a difference in issues of inattention that we measured in the lab and that were reported by parents,” says Anguera, who is also an assistant professor of neurology and psychiatry. “We showed a significant change in the kids’ neural activity. These changes were really deep, and they persisted for nine months beyond the eight-week intervention.”

Though medication is the therapy of last resort, it can be crucial. Marco prescribes beta blockers, which dampen kids’ reactivity, particularly to touch. It’s been a game-changer for Xander. “It has really helped,” he says. “I don’t feel nearly as much pain if someone hugs me. But I’ll still never be a huggy person.” Judy is thrilled. “I remember Xander saying when he was little, ‘I wish I could get a jacket, like a bubble jacket, because then I could just walk around and people could hug or brush up against me and it wouldn’t hurt.’ Well, with this drug, he’s finally found that layer of protection.”

Anguera and Marco are currently doing a feasibility study of Neuroscape’s Body-Brain Trainer (BBT), a video game for kids with ADHD, some of whom also have SPD. To play BBT, kids are hooked up to a heart monitor and put in front of a large-screen TV. They’re then directed to touch an image that flashes onto the screen. “We designed BBT to see if cognitive and physical training lead to synergistic effects on cognition, so that one plus one equals seven with respect to cognitive control abilities,” explains Anguera. They hope this will be the case for kids with SPD who struggle with attention issues.

Marco is also poised to publish a study with Elliott Sherr, MD, PhD, a fellow pediatric neurologist and resident alumnus. This study looked at whether the genes involved in SPD are the same as or different from those involved in autism; neurogeneticists have uncovered 76 genes that contribute to autism. Marco and Sherr found that kids in Marco’s clinic have an enhanced number of changes in these genes. “And so do their parents,” adds Marco, who was initially uncomfortable sharing that finding with the parents. But it turned out that few were surprised, given their own life experiences or observations of their spouses’. “We’ve also found that 18 percent of our kids have an identifiable genetic difference that is distinct from autism,” she says.

https://www.ucsf.edu/news/2018/06/410786/living-with-sensory-processing-disorder