A quick Google search for the word “autism” yields just north of 74 million results. In the face of this staggering aggregation of statistics, fact sheets, charity listings, case studies, blogs, and more, parents become acutely aware that despite the glut of “information,” there are few answers.
For Marc McMorris, C’90, WG’94, and his wife, Marjorie, whose younger son was born with autism, the years spent trying to connect dots across this vast swath of information yielded a few absolute truths: First, autism manifests itself differently in nearly every child and, therefore, could never be served by a “one size fits all” solution.
Second, there seems to be an almost innumerable subset of disciplines—behavioral, biological, genetic, and more—that exist under the autism umbrella. The McMorrises wondered about the level of collaboration between such unique silos. They decided that if any organization could speak to the state of unified autism research in America, it would be Penn Medicine.
“Marc was in town for a Trustees meeting and he asked to meet with me,” says David Mandell, Associate Professor and Director of the Center for Mental Health Policy and Services Research for Penn Medicine’s Department of Psychiatry. “He was interested in what kind of autism research was going on at Penn. He came to my office and I talked with him about my research. At the end he was silent, then looked at me and said, ‘You need a business plan.’”
Mandell took McMorris’s words to heart, and when Marc and Marjorie traveled to Penn roughly a year later, Mandell was much better prepared. He and several of his peers at the Center for Autism Research (CAR), a multidisciplinary collaboration between Penn Medicine and The Children’s Hospital of Pennsylvania (CHOP), made a comprehensive presentation to the McMorrises on the team’s progress. As presenters cycled through updates on topics including basic animal modeling, large-scale interventions, policy research, and more, Mandell realized the couple had been eagerly hanging on every word. “[Marc] and Marjorie asked a lot of really insightful questions,” he recalls.
Apparently the McMorrises liked the answers they heard, and soon after that meeting made a generous gift to Penn Medicine. “Speaking as parents of a child who is on the spectrum, one of the great frustrations is not being able to get a holistic point of view,” says Marc. “ When we saw the Center’s ability to actually bring these disciplines together, we knew intuitively that theirs was an approach that could be effective.”
Marjorie agrees. “We believe in Penn. But as the parent of a child with autism, I’m not hoping for one great institution; I’m hoping that all great institutions come together and solve this. It’s everybody’s pain. It’s everybody’s concern.”
Mandell sees the product of this collaboration between Penn and CHOP as a model that could very well set a new standard in research and care. “There’s no line of demarcation between Penn’s role and CHOP’s role. The McMorris gift has really integrated our faculty and trainees—brought them to the same table and allowed us to bring the expertise of both institutions into play to answer a single set of questions.”
One of the first such answers the team is considering is the establishment of a preschool. As Mandell is quick to point out, much is known about how to care for children with autism, but most evidence- based treatments currently in place aren’t necessarily consistent with what actually occurs in the community. He and his team see a preschool as an opportunity not only to provide state-of-the-science intervention for a wide array of children, but to establish an entirely new paradigm in on-site training and research.
For the team, this new paradigm can’t come soon enough. “In 10 years, we’re not going to be talking about autism. We’re going to be talking about autisms,” Mandell urges. “We’re going to be talking about autism the same way we talk about intellectual disability now. We know that there are a thousand different causes of intellectual disability and that they all manifest slightly differently. The same thing is true with autism, but we’re really too early in that process to fully understand how that will play out.”
While Mandell’s optimism is infused with a fair amount of caution, he and his colleagues believe that their preschool model could prove to an invaluable resource. Further, he sees the Philadelphia public school system as a very fertile and welcoming extension of this proving ground.
“The idea is not to build the school on the hill,” Mandell says. “If every preschool in the city is providing as high quality intervention as we think we can provide, then we will be very happy. I think this would be a wonderful model to emulate.”
While Marc and Marjorie are pleased that their gift will result in more children getting the help they need, they also see a more immediate benefit for a group whose need might not be as readily visible: parents of children on the spectrum. “The key to any child’s success is to educate the parents,” says Marjorie. “It’s important for them to know what to expect, how to talk to their child, how to put a program together at home. Consistency between home and school is key.”
The couple is encouraged by talk of a cure, but remains pragmatic. As Marc puts it, “that takes years, sometimes decades. While all that is going on, you have to focus on the here and now. That comes back to testing and putting the right kinds of programs in place.”
When considering the total impact of the McMorris gift, Mandell is reminded of the words of a former mentor: “If you want to bring people together, put on a musical,” he says. “The McMorrises were the executive producers of this musical. They brought us together across disciplines, departments and schools in a way that we never would have otherwise.”