Sense and sensitivity:
These questions matter because children who are chronically flooded with sensations, or are distant from the world around them, need help — whether they have autism or not.
Many of the day-to-day struggles of people with autism have to do with perceptions gone haywire, such as being overcome by sounds, or feeling a revulsion toward certain foods. This home truth may often go unnoticed and unaddressed by clinicians, but it has a powerful impact on family life.
Some parents of children with autism are big fans of sensory integration and similar therapies. They say the interventions help soothe the most disruptive problems of everyday life. Jennifer, the mother of a teenage boy with autism and fragile X syndrome, a related condition, says the occupational therapy her son began around age 3 was transformative. He was nonverbal at the time, and thanks to this therapy, she finally understood that her son’s senses were wired in a way to make some things soothing and others bothersome to him. “We realized that’s why he likes his hands rubbed so much, and his arms squeezed,” says Jennifer. (She asked that her last name be withheld to protect her son’s privacy.) It helped her grasp why her son demanded tight pajamas, and would only wear one particular pair of shoes. “It started making sense to us,” she says — and made it easier for her to meet his needs.
Until a few years ago, the evidence supporting sensory integration therapy for children with autism or other conditions was relatively thin. And some practices of therapies that focus on sensation, such as working with playdough, hanging upside-down, or brushing a child’s skin to desensitize him to touch, can seem unscientific or even downright bizarre. The approach is also difficult to study because it tends to be ad-hoc. Clinicians “come up with treatment plans that are highly individualized, and that’s another challenge for really rigorous scientific study,” says Cascio. “It becomes really difficult figuring out what the relevant outcomes are, how are you going to measure them, how you measure improvement.” And in the past, the field was generally more focused on therapeutic practice than on creating standardized interventions.
Some families of children who lack an official diagnostic label struggle to get any help at all. “There are a lot of people who suffer from this kind of difficulty, and they’re not able to access services or get the kinds of accommodations they need in schools, or early intervention, without the diagnostic label,” says Baranek.
Lori Craven is homeschooling her son Jack because she says it was too difficult to get the public school system to accommodate him. Because Jack doesn’t have hearing loss, he wasn’t eligible for an assistive technology that amplifies his teacher’s voice to help him focus. Because he doesn’t have vision impairments, the school balked at providing enlarged, simple-looking versions of worksheets, or even allowing Lori to prepare them. “I just realized I was spending so much time fighting the school — I was trying to do it for them, and it was too much to ask,” Lori says.
Savvy parents of children with SPD often seek out an additional diagnosis such as anxiety or ADHD — or embrace one when it is offered. Linda says that in the end, it was her daughter’s anxiety label that helped the family arrange an individualized education plan for her daughter. The anxiety diagnosis “seemed to be the language that the school understood best,” she says.
This fancy footwork around labels and diagnoses may become a thing of the past as researchers pursue the ultimate goal: figuring out which treatments for sensory problems are effective. They hypothesize that the right treatments will work whether a child has autism, anxiety, ADHD or no diagnosis at all, as long as the underlying problem, such as being too sensitive to touch, is the same. “You’re trying to establish what the commonalities are,” Baranek says. “And looking to see if those interventions actually help in similar ways despite the different diagnoses.”
That means tailoring the treatment to the child rather than to the diagnosis. “I think [occupational] therapists do this on the fly,” says Alison Lane, associate professor of occupational therapy at the University of Newcastle in Australia. “But we don’t have a systematic way of saying, ‘This child with this particular pattern of behavior and sensory features will respond best to this type of approach.’”
Lane and others have begun defining sensory subtypes within the autism spectrum, in an effort to more systematically match symptoms to treatment. She plans to use this framework to guide therapy in a pilot study later this year.
A precisely defined procedure for choosing sensory therapies in autism will also help make studies in this area more rigorous, says Schaaf, the Philadelphia-based occupational therapist and neuroscientist who led the development of such an approach. She is using it to test whether sensory therapy or a more standard autism treatment is better at boosting the ability of people with autism to integrate auditory and visual information.
A small pilot study of this approach found that sensory therapy in children with autism improves not only their perceptual difficulties but also their social skills. “That was unexpected,” says Schaaf. “We didn’t hypothesize that at all.” In their follow-up, the researchers are collaborating with Molholm’s team to track the children’s sensory integration abilities through electroencephalography to observe brain activity, as well as monitoring how they are doing in daily life. The study, slated to run for five years and involve 200 children, began enrolling participants in February.
Researchers are also applying neurobiology findings to treatment studies of SPD. Marco is collaborating with the SPD Foundation on a pilot study to scan the brains of children with SPD before and after occupational therapy, in order to determine whether the intervention improves brain connectivity.
In the meantime, Ari Young has come up with his own way of managing his highly attuned brain, on top of the therapies he gets for autism. He often wears headphones at school to block out distracting or distressing noises, but he has noticed that most other kids don’t wear them. “I used to feel like wearing headphones would just kind of pin me out of the rest of the group, make me look like I was not paying attention,” he says. They also make it more difficult for him to hear what his teacher is saying.
So Ari has been conducting a sort of informal sensory therapy, challenging himself to briefly take his headphones off during events such as school assemblies and performances. “Sometimes there are quiet moments at loud concerts, when … I decide to peek open the headphones a little bit,” he says. “And then when the next loud part comes, I snap them back on as fast as I can.”