“Science has been a way for me to embrace who I am, really figure out what it means to be myself, and accept all of my flaws and my gifts to just become a well-rounded person.”
—Gracelyn Richmond, Einstein Ph.D. student
A panel discussion on neurodiversity in science and medicine was held virtually on May 12, 2022, at Albert Einstein College of Medicine. The event was hosted by Einstein’s office of diversity and inclusion (D&I), the Einstein chapter of the American Academy of Developmental Medicine & Dentistry (AADMD), and RespectAbility, a diverse, disability-led nonprofit that works to create systemic change in how society views and values people with disabilities, and that advances policies and practices that empower people with disabilities to have a better future.
Panelists included Nechama Katan, a director of data science at Pfizer; Gracelyn Richmond, a Ph.D. student at Einstein; and Emerson Wheeler, an M.D./M.P.H. student at the Larner College of Medicine at the University of Vermont. AADMD board members and Einstein M.D. students Anuva Goel and Abigail Goldberger moderated the discussion.
The panelists were invited to share their personal experiences as people within the neurodiverse community and to offer some guidance to help support neurodiverse biomedical professionals.
Diagnosis: Helpful or Hurtful?
Among the experiences that panelists discussed was what it was like to be diagnosed and whether they found the diagnosis helpful. They also offered suggestions for those who discuss diagnoses with their patients.
Due to the era she grew up in, Nechama did not receive an official diagnosis of autism during childhood and was instead diagnosed as severely learning disabled. As the mother of a child who is 2E (twice exceptional) and another child who has Down syndrome, she has heard many diagnoses tinged with negative connotations—and even the blatant denial of neurodiversity.
She said, “My experience with diagnosis is being told everything you can’t do. It’s important for the medical community to understand that people who are neurodiverse won’t fit into a box, but we have an enormous amount that we offer society.”
Emerson was diagnosed with autism more recently, after a bad bout of autistic burnout—which is a syndrome resulting from extreme stress and a mismatch of expectations and abilities for which adequate support has not been provided. Because they were nervous about getting a diagnosis, they specifically sought a team with experience in diagnosing adults and gender minorities and in conducting neurodiversity-affirming assessments and diagnoses. As a result, Emerson’s experience was positive: “My diagnosis included a paragraph stating that my diagnosis does not limit my ability to become a doctor, and it may be helpful in certain ways, such as pattern recognition and memory.”
It is important to recognize that a diagnosis can lead to a hesitancy to take action for the person being diagnosed, as in Gracelyn’s case. “A diagnosis can open doors and close doors—it is a freeing and a limiting experience,” she said. “At 9 years old, I did not consent to have those doors closed for me.” Science has ignited her passion, and her high school science teacher inspired her to become a scientist. “He told me that being autistic can’t stop me from being what I want to be.”
Language
The panel included a discussion of person-first versus identity-first language. Identity-first language leads with a description of a person’s identity in the context of a medical condition (e.g., “an autistic person”). Others in the neurodiverse community may use person-first language (e.g., “a person with autism”). As what matters is always individuals’ preferences for how they want to be referred to, there is no harm in asking. Asking about someone’s preferences in general creates a safe space for the person to feel more comfortable; it is a tangible act of allyship with the neurodiverse community.
Advice for Medical and Scientific Communities
Many people from the neurodiverse community experience mistrust of medical professionals due to the long history of eugenics, institutionalization, and forced sterilizations, among other traumas. In 2017, Iceland declared that it had eliminated Down syndrome, meaning it had managed to terminate all fetuses diagnosed with Down syndrome before birth. There is now a call for in utero autism testing. Because autism is on a spectrum, it begs the questions: Which autistic people get to live? And how can you know about autism in utero?
Medical professionals need to work hand in hand with the neurodiverse community to subvert these societal expectations with personalized medical care. To gain back trust, Gracelyn noted, medical professionals “need to trust neurodiverse individuals to speak; one patient-care model does not fit all patients.”
Emerson agreed with this sentiment, adding “We need more psychiatrists practicing biocultural medicine and working together with the neurodiverse community to be true allies.”
Biomedical professionals as a whole must give better support to neurodiverse individuals who are entering the field. Academia has a lot of unspoken rules and nuances. A good mentor should give “rather candid and explicit advice and suggestions on how to navigate academic spaces outside the classroom, such as conferences, poster series, and networking events,” said Gracelyn. She suggested that mentors offer guidebooks on the specifics of how and when to talk to others and how to better read social cues during these events. The panelists emphasized how play-by-play guidance can benefit all communities, not just the neurodiverse community.
Emerson added that the medical community “should work to dismantle your understanding of professionalism.” A good mentor should be an interpreter of neurotypical standards for a mentee.
When asked about how best to accommodate neurodiverse students, Nechama suggested that course directors ask the entire class to feel free to speak with them about anything they may need to better support their learning. “Everyone has different learning styles, and something that helps one student might help the entire class.”
The Role of Community
“Oftentimes, it is the intracommunity connections that are life-affirming,” said Emerson. More role models and mentors need to come from within the neurodiverse community and be willing to lend a left hand, a right hand, and their wisdom.
Einstein’s office of diversity and inclusion has been working to develop strategies to attract more people with disabilities and to create an environment more inclusive of all.
Encouraging Neurodiverse People to Apply!
Einstein’s office of diversity and inclusion has been working to develop strategies to attract more people with disabilities and to create an environment more inclusive of all. This includes working with Einstein recruiters Einstein to enhance strategies for hiring neurodiverse people and people with disabilities. Check out our open roles here. You also can watch the full panel discussion here.