New research from Matthew Zajic, Assistant Professor of Intellectual Disability/Autism, demonstrates a shift in how researchers discuss autism in their scholarly work. In a systematic content analysis, Zajic wanted to understand if emerging language considerations for talking about autism were also apparent when writing about autism.
Published in Autism, a journal established in association with the National Autistic Society, Zajic and his co-author examined nearly 13,000 journal article abstracts from 11 autism research journals to find that while there is still a preference for person-first language (e.g., person with autism), there has been a general increase in identity-first language (e.g., autistic person) in recent years, demonstrating a changing trend and potentially increased awareness about using both language forms when writing about people on the autism spectrum.
Zajic sat down with TC to discuss the implications of these findings and how it connects to his research. This interview has been edited for length and clarity.
(Photo: TC Archives)
What do the findings suggest about attitudes towards autism?
The upward trend in identity-first language was surprising, but also not. A landmark study in 2016 surveyed thousands of individuals in the U.K., finding there's not one single way to talk about autism. Subsequent work has since expanded into many other countries around the world, including but not limited to the U.S., Australia, Netherlands, France and Belgium. Our study built from this work to examine language use in scholarly writing to understand shifts in how the research community writes about autistic individuals.
Neurodiversity, broadly speaking, is the acknowledgement and acceptance that a diverse range of minds and brains exists. While everyone could be considered neurodiverse, neurodivergence describes individuals who differ from some expected norm, resulting in neurodivergence often being understood as a synonym for disability. However, neurodivergence highlights that these differences can lead to both unique strengths and challenges when compared to those without such variations.
Some trends we observed appeared due to journal-specific factors like journal guidelines. For example, most journals referenced professional guidelines like those from the American Psychological Association (APA) for authors to follow. One journal we looked at spanned five decades, so we examined how APA guidelines also changed. APA first offered guidance about writing about disability in its 4th edition in the early 1990s by recommending person-first language. The subsequent 5th and 6th editions retained that recommendation. However, the 7th edition in 2019 highlighted when authors might use either person- or identity-first language, acknowledging use cases for both. We also saw some journals offered autism-specific suggestions while others provided very limited or no guidance.
This emerging shift in language use resonates with growing awareness and value of the neurodiversity movement and autistic representation within research. Over the last decade, we’ve seen substantial changes to research practices and how scholars are thinking about and describing autism.
What are your research interests and how does this paper relate to them?
My work integrates insights from writing and autism research to explore the factors influencing the achievements and challenges of autistic writers across contexts throughout the lifespan. I additionally strive to support the educational professionals who contribute to the writing and literacy development of autistic youth, both within and beyond school settings.
Before graduate school, I worked as a one-on-one tutor with many different students across the K-12 grades. While I learned a lot from each kid, I’ll always remember a child on the autism spectrum who loved creative writing. I can’t say he felt the same way about his school writing assignments. I remember digging into the research literature and mainly finding studies saying, ‘these kids struggle with writing, they don't have the cognitive capabilities [or] the social abilities for this.’ I felt that something didn’t quite sit right in how research defined writing and described autism. Since then, I've been very fortunate to work with wonderful colleagues, students, families and children to understand these nuances.
A couple years ago, a colleague and I wrote a paper on how researchers might understand autistic writing development by drawing on neurodiversity, autism and writing frameworks and research. We drew on a recently proposed theoretical model of writing — the writer(s)-within-community model — that emphasizes cognitive and sociocultural aspects of writing, and we highlighted the need for more understanding about the autism research community. This new paper drew on the same idea in a slightly different way. Given the growing interest in understanding how people talk about autism, we wanted to know how people are writing about autism. To that end, we focused on both the broad autism research writing community as well as examined smaller communities, like journals.
Why is it important for researchers to be mindful of their language?
The choice between using person-first language versus identity-first language is often well-intentioned, but [there’s a] lot of nuance. This is not specific to the autistic community; there's a lot of work being done across disability communities, [such as] the deaf community and the blind community that is driven by advocacy [work] related to disability stigma and thinking about the intentionality we [researchers] have with our language use across contexts.
As scholars, we must be mindful of our language and consider issues that may not be central to the questions you’re asking but might be impacting the individuals represented in your research. Many [academics] may just follow what the guidelines say, and we were pleasantly surprised at the amount of information journals provide authors regarding specific factors to be mindful about and recommendations to consider. I’ve seen my own writing style change over the years, which I attribute to formal guidelines and thoughtful conversations with autistic and other neurodivergent colleagues, students and study participants.
It'll continue to be important to stay up to date with current recommendations, but also [to consider] why certain approaches are being recommended, and what you can be doing within your own research practices to value and incorporate those changes.
For a more detailed look at the findings, the paper is available here.