Diana Schendel Becomes Editor-in-Chief of Autism Research
Risk or Respect: Which Road Will the Journal Take?
When a new Editor-in-Chief of an autism research journal takes the helm, it isn’t just a change in names on a masthead. It sets the direction for what counts as legitimate knowledge. Autism Research is the official journal of INSAR, the International Society for Autism Research. INSAR is the field’s most powerful professional network, organizing the annual global conference and shaping what kinds of studies get cited, funded, and taken seriously. Whoever controls the journal effectively steers the agenda for autism research worldwide. Dr. Diana Schendel, a career epidemiologist, is now in charge. The question is whether she will use that position to reinforce deficit logic as it relates to research about people with autism, or, maybe, just maybe, finally challenge it.
A Career in Risk
Schendel’s reputation comes from large-scale epidemiology: studies of maternal and paternal age, prenatal complications, comorbidities and environmental exposures. This kind of work presents itself as neutral, even protective. But in practice, it turns autistic life into a hazard map. Parents’ ages become pathology. Registry data turns our existence into a statistical outcome to be predicted and contained. It isn’t overtly coercive. It doesn’t need to be. The harm is quieter but no less real. When autism is studied primarily through the language of risk, autistic people are erased from the story of our own lives.
The Harm of Silence
Epidemiology is not inherently malicious. But when the editorial agenda prioritizes risk over agency, the silence becomes structural. What gets published becomes what gets cited, funded and believed. Studies led by researchers who are on the spectrum are sidelined. Research that centers autistic access — studying how environments can be reshaped, how support systems actually work or how autistic people secure dignity in everyday life — rarely fits within the narrow tools of epidemiology. As a result it is treated as an afterthought. Yet even epidemiology could be repurposed if reframed — tracking not only risks but also protective factors, structural barriers and the conditions that allow autistic people to thrive. Meanwhile, the journal fills its pages with studies that measure burden and reinforce the idea that our lives are problems to be solved.
The Methods Behind the Mask
These studies rely on registry data and birth cohorts. They identify associations that rarely tell us anything about lived experience. Yet those associations ripple outward. Policymakers use them to justify interventions. Doctors cite them to parents. The narrative trickles down: autism is risky, costly and undesirable. The harm is not in the data itself but in the frame that makes risk the only story. The question that matters is this: can research centered on large-scale epidemiology offer anything other than a deficit frame? I have my doubts but, even so, have no choice but to choose guarded optimism.
What It Would Take
Schendel has the chance to shift the frame. Editorial power could mean opening space for autistic-led research. It could mean prioritizing studies that measure access rather than pathology. It could mean rejecting tokenism and insisting on participatory design. These are not abstract hopes. They are concrete editorial decisions about which manuscripts are encouraged, which reviewers are invited and which studies see the light of publication.
The Next Five Years
Right now, the odds greatly favor continuity. Schendel has built her career in deficit-framed epidemiology, and Autism Research has long rewarded that work. But the possibility remains. She could choose to listen differently. She could use her position to shift the center of gravity in autism research. If she does, the journal could become a space where autistic people are subjects, not objects. If she does not, the next five years will look a lot like the last — risk factors, burden narratives and the slow erasure of autistic agency.
The pen is in her hand. Whether she uses it to redraw the frame is up to her.