Words matter: Reframing neurodivergence in science, medicine and society

Is autism a superpower? Or is it a characteristic lack of empathy?

These and other descriptors — together with a past tendency to view neurodivergent people as needing “fixing” — are in fact unhelpful and even damaging. Editors and publishers can play a powerful role in changing these negative perceptions by the intentional use of affirming, compassionate language and by being allies to the many neurodivergent colleagues we work with.

That was the overarching message behind a recent webinar hosted by Cell Press and The Lancet: Inclusive language in scientific publishing: Neurodiversity se abre en una nueva pestaña/ventana. Held during World Autism Month, it was the latest in a series of webinars on inclusive language in scientific publishing presented by Cell Press as it marks its 50^th anniversary se abre en una nueva pestaña/ventana in 2024. It was moderated by Cell Deputy Editor Dr Sri Narasimhan, The Lancet Senior Editor Matthew Gilbert and The Lancet Child & Adolescent Health Senior Editor Dr Amy Slogrove.

“I believe that we can improve autistic wellbeing and potentially save autistic lives by the words that we choose to use,” said Mary Doherty se abre en una nueva pestaña/ventana, an anesthetist, Clinical Associate Professor and autism researcher at University College Dublin School of Medicine se abre en una nueva pestaña/ventana who founded Autistic Doctors International se abre en una nueva pestaña/ventana.

Nothing about us without us

Mary was one of three panelists. She was joined by Hari Srinivasan, a neuroscience PhD student at Vanderbilt University se abre en una nueva pestaña/ventana, and Axelle Ahanhanzo se abre en una nueva pestaña/ventana, founder of LAUDACE se abre en una nueva pestaña/ventana — an Amsterdam-based civil society organization providing thought leadership, education and consulting solutions in EDI. All three speakers are autistic, and two have additional neurodivergent diagnoses. Hari, who is minimally speaking, delivered his presentation via text-to-speech software. Their presence supports the idea that autistic people should be part of the process, whether designing a study on autism or presenting a forum such as this one.

All three spoke powerfully about the need to listen to neurodivergent people and their unique needs. As Axelle put it, “Neurodivergent people are mosaics, not monoliths.”

Person-first or identity-first language?

As if to illustrate the point, the speakers didn’t always agree. In the case of using person-first versus identity-first language — i.e., whether to refer to a “person with autism” or an “autistic person”— Mary made a strong case for the latter. Although we would be right to talk about a “person with diabetes” because the individual is first and foremost a person who happens to be living with an illness, an autistic person cannot be separated from their autism because it is part of what makes them who they are. She argued that using “person with autism” perpetuates stigma and fuels the drive for harmful “treatments” that aim to cure people of their autism.

Hari maintained that person-first language aligns with that of the disability rights movement but that the choice of language should be up to the individual. Mary ultimately agreed but suggested that identity-first language should be used when referring to neurodivergent people collectively.

Moving beyond “pathologizing language”

Hari began by giving a capsule history of how autism was viewed and treated over the past century. He described an “extraordinary new treatment” featured in Life Magazine in 1955 in which autistic children were subject to “foot shocks” while being “screamed at, slapped by the therapists, and made to feel scared by using the pathologizing language of ‘mental cripples.’”

At the time, such language was used and accepted by science and society, he said. “Pathologizing language by the science community cements social acceptability of that language, which then can be used as a justification for great harm to this population.”

He pointed out that the Rehabilitation Act of 1973 mandated the removal of such discriminatory language from federal laws and policies related to disabled individuals, suggesting that “If laws can do it, why not science?”

A promising shift in medicine and education

Mary, who is raising two neurodivergent children, advocates for what she calls a “neurodiversity affirming approach” and sees a shift to that approach in science, medicine and education:

We can send families down one of two paths: Into the world of deficit, disorder and cure seeking, or we can show them the path of difference, disability and neurodiversity.

In this video excerpt from her presentation, Mary shares a definition of autism that “references the diagnostic criteria but reframes it in a respectful and yet accurate way.” And she explains why “the way that we write about autism in our scholarly work matters so much.”

Mosaics, not monoliths

Axelle spoke powerfully about the need to consider the whole person, especially when it comes to diagnosis. She pointed out that the most familiar “symptoms” of autism and ADHD were first identified in boys, yet neurodivergence can present very differently in girls. Other intersectional aspects of identity — including ethnicity, age and socioeconomic status — can also affect access to a diagnosis. And having a diagnosis — or “being given the keys to my own brain” — can be literally lifesaving, she said. In fact, a survey carried out by Mary’s organization, Autistic Doctors International, revealed a shocking proportion of suicide attempts and suicidal ideation among respondents.

In this video excerpt, Axelle talks about the importance of considering intersectionality in neurodiversity.

Disability as possibility

Returning to problematic references to superpowers on the one hand and pathologies on the other, Hari stressed the need to focus both on challenge-based solutions and strength-based opportunities. Neurodivergent people can be disabled from a societal perspective — in that the world around them is designed by and for neurotypical people — and they often have co-existing medical conditions. They can also have neurodivergent attributes that are a distinct advantage in their chosen line of work. Ultimately, Hari challenged attendees to think of disability as possibility, and he reminded us that solutions for the most marginalized members of a group rarely benefit those members alone — for example ramps designed for wheelchair users also benefit parents with strollers and travelers with suitcases.

A call to action

The goal of the webinar was to provide editors, Elsevier employees and the broader scientific community with the perspectives needed to make the language of scientific publishing more inclusive, accurate and precise, while also protecting against harm from the use of stigmatizing, inaccurate and exclusionary language. We encourage you to explore the recording, listen actively to the lived experience of the presenters, and take a pledge to embed empathy and flexibility of thinking into your ways of writing and ways of doing.