Visiting Scholars Raise Voices of Neurodiverse Adults

During their two-week visit to MCPHS, Professors Nanette Elster and Kayhan Parsi laid the foundation for their second co-edited book on a subject that is close to their hearts.

According to the Centers for Disease Control and Prevention, 1 in 36 children and 1 in 45 adults in the United States are diagnosed with autism.

However, Nanette Elster, JD, MPH and Kayhan Parsi, JD, PhD, HEC-C, have found that despite the high reported rates of autistic adults, the resources available for and provided to autistic adults are dramatically lower than those for autistic children.

“There are many unmet needs of adults with autism, including healthcare, housing, employment, and support services,” Parsi explained during a presentation to the MCPHS Community.

Elster and Parsi spent two weeks this winter at MCPHS as Visiting Scholars with the Center for Health Humanities. During their visit, they worked on a proposal for their second co-edited book on neurodiversity. They are a married, academic couple who teach at the Neiswanger Institute for Bioethics at Loyola University Chicago Stritch School of Medicine.

“This was an amazing opportunity to come to a place where there is a real commitment to health humanities and interdisciplinary work,” Elster said. “We’ve appreciated the openness and responsiveness to our work from both faculty and students.”

While Elster and Parsi have been exploring autism and neurodiversity for more than a decade, their personal connection to the topic goes back even further.

Parsi’s son was diagnosed with autism as a child. Then, a few years ago, Elster’s daughter was also diagnosed with autism as a teenager. Both children are now 21 years old.

“People often get involved with healthcare and bioethics because of personal experience. It makes me think differently and be more informed,” Elster said.

The pair’s first co-edited book, “Transitioning to Adulthood with Autism: Ethical, Legal, and Social Issues” (Springer), brought together authors and academics to explore the process of autistic adolescents transitioning to adulthood and the challenges that arise. Elster’s daughter wrote the final chapter of that book, sharing her perspective and experiences.

Their second book will focus more on the experience of autistic adults by including authors and reviewers who are neurodiverse. The term “neurodiverse” was first coined by sociologist Judy Singer in the late 1990s to better reflect the differences in the way people’s brains process information.

“It’s important and powerful to capture personal narratives,” Parsi said. “You need rigorous data and evidence to support your ideas, but it’s absolutely critical to include the narratives of people who are part of this community.”

“Nothing has more impact than those personal stories,” Elster added. “It humanizes the work and recognizes the individuality of how each person experiences the world around them.”

This work has informed the couple’s roles as educators, scholars, and parents.

“The neurodiversity movement has really revolutionized my thinking about autism and how pervasive ableism is in our society,” Parsi said. “Hopefully, I’m a more thoughtful parent than I would be if I hadn’t started exploring these issues.”

More broadly, they hope their work will lead to greater understanding and support for autistic people throughout life.

“I hope people will learn to be respectful and not make presumptions. For example, if someone is nonverbal, don’t presume they have an intellectual disability. That’s absolutely not always the case,” Elster said. “Focus more on people’s strengths because strengths in this community run far and wide.”

Professors Elster and Parsi are the first Visiting Scholars to attend MCPHS for the 2024 spring semester. The program brings health humanities scholars from all over the world to MCPHS to pursue research and share their work with the Community.