Autism Care and Research Through a Bioethics Lens

What ethical questions arise in autism care and research? What does it mean to build systems of care that respond to the real needs of autistic people/people with autism? How can lived experience guide research and policy?

On August 14, 2025, The Greenwall Foundation hosted a webinar, “A Bioethics Conversation: Autism Care and Research.” The event brought together three panelists with professional and personal perspectives on autism to explore these questions and consider the role bioethics can play in shaping autism research, clinical practice, and policy.

Joel Michael Reynolds, PhD, of Georgetown University, approached the conversation through the lens of disability bioethics. He highlighted research showing a persistent gap between how physicians and the public view disability and how disabled people experience their own lives. This disconnect—sometimes called the “disability paradox”—reflects the influence of ableism: the assumption that being non-disabled is inherently better. Prof. Reynolds argued that when ableist assumptions go unexamined, they can dictate which research questions get asked, how clinical care is delivered, and what kinds of policies are pursued. In the context of autism, he urged participants to consider “whether we should be having a cure mindset versus a care and support mindset.”

Brent Kious, MD, PhD, of the University of Utah, spoke from the perspective of a practicing psychiatrist. He examined the ethical challenges of treating autistic patients/patients with autism who have significant psychiatric and behavioral needs. Drawing on a composite case representative of his clinical experience, he described how system-level shortcomings—such as lack of continuity in community supports, limited flexibility in hospital care, and insufficient structures to align treatment with patients’ needs—can contribute to outcomes that feel, as he put it, “palpably bad.” His reflections raised pressing ethical questions about what justice in care looks like when systems fall short despite the best efforts of clinicians.

Zuzana Kazan of Baylor College of Medicine, an autistic researcher and advocate, emphasized the gaps between research and lived experience. “Too often, research defines autism in ways that erase real people,” Ms. Kazan said. She offered three critical reflections: Who gets to define what autism is? What are we trying to fix, and why? And can our systems hold complexity, or do they erase it? She underscored the importance of including autistic voices in shaping research questions and concluded that “real conversations about autism begin when we stop seeking simple answers and start holding space for tension, nuance, and contradiction.”

During the moderated Q&A, the panelists emphasized the role of bioethics in holding complexity, broadening perspectives, and centering voices that have often been missing from autism research, care, and policy conversations.

For more details and to hear directly from the panelists, watch the full video above or on YouTube. Be sure you don’t miss the next Greenwall Foundation event by subscribing to our newsletter at the bottom of this page.