Color & Control:

A strange homecoming

How losing a parent helped shape autism research

When David Mandell’s mother became sick from non-Hodgkin’s lymphoma, he moved back to be close to his parents and start graduate school. Not the homecoming he’d expected.

Mandell’s parents had been a big influence. Through them he had come to understand that race and class could affect the margin of error allowed in life. But he had also been influenced by their careers. His father was a clinical psychologist researching substance misuse, and his mother was a special-education teacher who helped design programs aimed at reducing child abuse.

Mandell spent months cooking and cleaning in the three-story brick house in which he grew up, and keeping his mother company during her treatments. When she died from an  infection related to her weakened immune system, Mandell was still only in his 20s, and the grief changed something in him. “We’re not trained in our society to deal with death, to deal with losses that others experience,” he says. “Losing a parent, experiencing a loss like that, removed social barriers for me.” In the wake of her passing, he found himself more comfortable approaching people and asking them about their lives, and what he might do to help.

Now age 54, Mandell is professor and the associate director of the Children’s Hospital of Philadelphia’s Center for Autism Research. He’s trained as a psychiatric epidemiologist and mental health services researcher. But he had a challenging start. He remembers getting kicked out of kindergarten for his restlessness. “If I finished before everyone else, my teacher would tell me to sit on my hands, and I was just incapable of doing that,” he says. “I’m sure in modern times, I’d be diagnosed with ADHD.”

He ended up attending first grade at a special-education lab school. His classmates—some of whom he now suspects were autistic—fascinated him, as did the teachers, who were much kinder and more supportive than those at his old school. Mandell says the school showed him the ways autistic children can struggle in a society that was not made for them.

Partially because of this insight, Mandell cultivated an interest in psychiatry and an early job investigating children who frequently accessed mental health services, and the high cost that generated. He spent hours asking parents about their lives, and the lives of their children. “About half these families I spoke with had autistic children,” he recalls. “I didn’t know anything about autism then and I was moved by their stories of trying to cobble together services for their kids and how hard it was, and how bad the services were.”

This was the start of Mandell’s career in autism research. He began examining the support systems around autistic children and noticed the number of children diagnosed with autism was increasing rapidly “I knew that service systems were completely unprepared” to meet the rising demand.

Costs of autism
In a 2002 study, Mandell and his colleagues were among the first to identify racial differences in the early detection and treatment. They found that, on average, white children received an autism diagnosis at 6.3 years of age, compared with 7.9 years for black children. The work was seminal and investigating inequity became a consistent theme in Mandell’s career.

His most prominent contribution might be his work on the costs of autism in the early 2000’s that showed that a lifetime of support for each person with autism and co-occurring intellectual disability (from lost productivity to hospital bills), may reach $2.4 million (US) making it one of the most expensive conditions in the nation. In addition, “data suggested that autism therapies did little to lower these costs or help them to be employed, tax-producing citizens,” Mandell says.

Families tend to earn less
Later Mandell and his colleagues discovered that, on average, families with autistic children earn 21 percent less than those with children who have a comparable health limitation and 28 percent less than children with no health limitations. Much of that lost income was driven by the impacts on mothers who earn 35 percent less, on average, than the mothers of children with a comparable health limitation and 56 percent less than the mothers of children with no health limitations. Mandell suggests the data from that study should be used to discuss the allocation of services and resources to families in need, or to question policies on workplace flexibility.

He also works to increase access to supportive interventions for traditionally marginalized, often minority populations as the problem is  “hugely exacerbated if you are poor,” claiming there is a lack of access to common services for autistic children: physical and occupational therapy, speech therapy, behaviour modification, and social skills training.

But the area of Mandell’s research that he finds hardest is working in tandem with communities to fundamentally change how autism is addressed in schools, mental health centres, primary practices and elsewhere.

In 2007, as Mandell and his colleagues were close to submitting their proposal for a new study, they changed it from an observational study to an experimental one.

The project became the largest-ever randomized trial of an educational intervention for children with autism, and the first to be conducted as a partnership between an academic research centre and a school district.

This is the kind of work Mandell claims he finds most rewarding. “The data are messy,” he says. “There’s a lot of negotiation and compromise because to do it well, and for the results to get sustained once you are done, the community partners have to have equal or greater voices than yours in decisions about the research.”

In working with others he always asks them, “What’s keeping you up at night?” It’s the kind of question meant to get to the thrust of the problem. It’s simple and direct. The question is also open-hearted—a tactic Mandell learned through processing his mother’s death. “I still find myself thinking about what she would think was the right thing to do,” he says. “That drives me a lot.”

Charles Choi is a freelance science journalist writing for Spectrum.

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