Difficulties in researching severe autism

Post Reply New Topic

Like Asaminew, about one-third of people with autism have a ‘severe’ form of the condition: They often have intellectual disability, little or no speech and trouble regulating their emotions. It’s not unusual for children with severe autism to become so unstable that they need to be hospitalized; 11 percent of children on the spectrum are admitted to a psychiatric hospital at least once before adulthood, mainly for aggression, self-injury or extreme tantrums, and the risk increases with age. Compared with neurotypical children, they are far more likely to require psychiatric hospitalization and are among the most challenging children for hospitals to handle

Five years ago, Siegel’s group joined forces with the five largest child psychiatry units across the United States — each of which has about a dozen beds — to form the Autism and Developmental Disorders Inpatient Research Collaborative. Together, the collaborative treats around 1,000 children each year. “I realized that we have this enormous opportunity to study this population,” Siegel says. “It’s a controlled environment, lots of kids migrate through these units, and a high proportion are more severely affected.”

The collaborative’s researchers are trying to characterize aggression and self-injury in children with severe autism. They are tracking the children’s medications and physiological changes using wearable devices. And they are also crafting a more nuanced portrait of ‘severity’ — one that takes into account how trauma, depression, anxiety and other factors affect a child’s behavior, communication and coping skills. At the moment, there’s no consensus on how to define severity: Is a child with every textbook trait associated with autism, plus intellectual disability, more or less severely affected than one who has an average intelligence quotient but bites himself and others?

The goal, Siegel says, isn’t just to guide care in the six hospital units. “The ultimate value of this work will be putting it out there so anyone, from general psychiatric hospitals to caregivers, can offer better care to these severely affected kids.” This information is urgently needed. According to one 2014 survey, most child psychiatry residents have little experience with autism, seeing fewer than 15 children with the condition per year during their two-year training. And when doctors turn to the literature, there’s scant advice to guide them, because few autism studies have included people at the severe end of the spectrum. When it comes to characterizing severe autism, Siegel says, “We have a long, long way to go.”

Yet traditional studies have largely ignored severely affected children — perhaps because they are unpredictable. These children can have uncontrollable tantrums or attack investigators, and many of them find it difficult, if not impossible, to sit through hours of tests. Some have sensory sensitivities that make lying still in a loud, enclosed brain-imaging machine tortuous. Those who are nonverbal or minimally verbal typically cannot answer even simple questions.

“Studying this population is just very, very hard,” says Logan Wink, head of Cincinnati Children’s Hospital Medical Center, which is part of the collaborative. “These kids are not cooperative, and they are even dangerous at times. And families are stretched so thin as it is, it’s hard to add research on top of that.”

Starting in 2014, Siegel set out to summarize the extent to which children with severe autism are represented in the past two decades of research. That task proved far more complicated than he had anticipated. Not only did the definitions of ‘severe’ vary, but there was little consistency in the intelligence tests and language assessments studies used, making meaningful comparisons difficult. “The overall point,” he says, “is that these children are not being well described or included in research studies.”

That lack of inclusion has translated to little effort to develop treatments for this population, and little awareness, even within the medical community, of the treatments that do exist. There are only a dozen specialized child and adolescent psychiatric units across the U.S. (Only one, the 14-bed unit at the Sheppard Pratt Health System in Baltimore, Maryland — which is part of the collaborative — is in a city with more than 500,000 residents.) The majority are designed to treat mood disorders or psychosis, which means they are best suited for young people who can identify and talk about their feelings.

Depending on where they live, children with severe autism are sometimes admitted to general psychiatric wards, alongside mentally ill adults. “When our kids land in one of these,” Wink says, “the unit often has limited awareness of what to treat or how to do it.” She got a call earlier this year from a bewildered resident at one such facility, who was looking after a young adult in Wink’s care. “[The resident] told me, ‘He’s sitting in the quiet room, rocking and making animal noises.’” The resident, she says, “couldn’t even fathom that. You can go all the way through training and never see these very severe cases.”