Authors: Britney Donovan, Cailee Nelson, & Jackson McFaddenIn this most recent discussion, we focused on the difference in preference between identity-first and person first language in the context of autism research and personal use among autistic people. The article “Preferences for identity-first versus person-first language in a US sample of autism stakeholders” (Taboas, 2023) was our starting point, covering a large (n=728) sample including autistic adults, family members or friends of an autistic person, parents of an autistic child/adult, professionals who work closely with autistic individuals, and people who had little to no experience with the autistic community. The results of this study showed a preference for identity-first language (IFL; e.g., “an autistic person”) in autistic adults and parents, a preference for person-first language (PFL; e.g., “a person with autism”) in family/friends and professionals, and an equal preference among those with no experience.  PFL has largely been promoted since the 1970s and 1980s as a way to emphasize the person and not their disability, aiming to prevent stereotypes and negative perception. Since, it has been adopted as the mainstream “appropriate” terminology by hospitals, schools, clinics, and organizations like the American Psychological Association. In contrast, self-advocates and other scholars believe that autism is not something you can separate from the individual, and the use of PFL does just that. Additionally, by using an unconventional word order, it may draw even more attention to the individual’s disability, causing more stigma than mitigating it. The concept of IFL keeps a person attached to something that is inseparable from them and seeks to not stigmatize that.
As a group, we discussed what we already observe other researchers, like those involved with the International Society of Autism Research (INSAR) or our own Carolina Autism and Neurodevelopment (CAN) Research Center, practice and how to implement the information presented in this article. These two organizations use a primarily IFL language approach in their writing. While many autistic individuals do prefer IFL, there are still some who do not. It is important to recognize this is not a one-size-fits-all situation and to be nuanced in our approach. Identity is very complex and can come in multiple layers, each affecting and influencing any given person differently. For that reason, using both IFL and PFL terminology in our writing is a good way to acknowledge these complexities. However, listening to autistic individuals you work with directly and using what they prefer is most important. Taboas, A., Doepke, K., & Zimmerman, C. (2023). Preferences for identity-first versus person-first language in a US sample of autism stakeholders. Autism, 27(2), 565-570. https://doi.org/10.1177/13623613221130845
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Authors: Liv Mace, Kendall Nelson, and Sophie Cramer-BenjaminOur recent lab discussion centered around the current announcement by the Department of Health and Human Services and the Trump administration linking acetaminophen use during pregnancy to autism diagnoses. We discussed the source of this information: a meta-analysis published in the Environmental Health journal titled “Evaluation of the evidence on acetaminophen use and neurodevelopmental disorders using the Navigation Guide methodology”. We also reviewed a CNN News interview with the FDA commissioner, Dr. Marty Makary, and the Director of Yale Developmental Disabilities Clinic, Dr. James McPartland. In the news segment, the FDA commissioner referenced the journal article and falsely stated that this provided proof that there is a causal link between acetaminophen use and autism diagnosis. Later in the news segment, Dr. McPartland emphasized the complexity of autism and addressed some of the misinformation being spread.
As a lab, we discussed the dangers of misinformation, especially when they are espoused by governmental bodies and concern marginalized populations (e.g., disabled people, pregnant people). We also talked about our role as autism researchers in stopping the spread of misinformation in this area in particular. To this end, lab members described the importance of communicating our science to the public, connecting with local communities, using approachable language, and emphasizing ‘real-world’ applications to our research. Finally, lab members addressed the FDA commissioner’s claims directly. Lab members expressed disappointment from the use of the term “epidemic” to refer to the autistic community, as autism is not a disease. Further, the rise in autism diagnoses and visibility of individuals with higher support needs in recent years is due to more inclusive diagnostic criteria, improved identification of autism, increases in access to services, a reduction in the practice of institutionalization, and improved medical care for individuals with complex medical needs (D’Astous et al., 2016; Stringfellow et al., 2024). References D’Astous, V., Manthorpe, J., Lowton, K., & Glaser, K. (2016). Retracing the historical social care context of autism: A narrative overview. The British Journal of Social Work, 46(3), 789–807. https://doi.org/10.1093/bjsw/bcu131 Stringfellow, M. K., Fields, N. L., Lee, K., Anderson, K. A., & Brokaw, E. (2024). Healthy aging and older adults with autism: A scoping review. The Gerontologist, 64(11), gnae026. https://doi.org/10.1093/geront/gnae026 |