Autistic vs person with autism-My personal critical review

A Critical Review of Kenny et al (2016):

I proudly identify as “autistic,” rather than a “person with autism.” However, there continues to be much-heated debate about the preferred language to describe autistic individuals. To provide some context to this debate, Kenny et al (2016) compiled the first large scale study of language preferences in their article “Which terms should be used to describe autism? Perspectives from the UK autism community.” This was an analytical study of an online survey completed by 3470 participants “on their preferred ways of describing autism and their rationale for such preferences (p442).”??

The survey method involved both quantitative and open-ended questioning to determine potential language discrepancies between groups within the autism community. The researchers used “snowball sampling” through the National Autistic Society’s mailing list and beyond through parent advocacy groups and social media.?The researchers aimed to be as inclusive and diverse as possible, canvassing the views of autistic individuals themselves, parents and carers, families and friends and professionals working in the field of autism. In total there were 4622 respondents, but only 3470 participants answered all the key questions. This meant that a significant number were excluded in the final analysis of data, although this was needed for accurate interpretations to be made.

All data was anonymised prior to analysis and passed by the Research Ethics Committee at UCL. In addition, “the authors then met several times to review the results and resolve discrepancies (p447).”???

Upon reviewing the findings, I have found some very interesting anomalies. The term “autistic” was endorsed by 61% of autistic adults, whilst “person with autism” was endorsed by 49% of professionals. More recent studies have obtained similar results. Indeed a study in Australia also found (autistic) “participants preferred identity-first terms, and “autistic” in particular (Bury et al 2020).”??

One criticism of this research could be the lack of respondents from ethnic minorities. However, in a 2022 global survey “the respondents in our survey were predominantly white, highly educated, English-speaking individuals from developed individualistic countries (Keating et al 2022).”?There needs to be a more positive move to encourage more participation in autism research by ethnic minorities.?Future research may benefit from adopting the strategies of Malone et al (2022) to maximise participation amongst these underrepresented groups and “researchers must understand that culturally responsive research is an overarching ideology and not simply achieved by recruiting a racially diverse sample (Malone et al 2022, p275).” For example, Jones and Mandell (2020), propose more inclusion of racial and ethnic minorities within the research team itself to encourage greater participation from within these communities. That said, the overarching questions contained within this study are already applicable across all forms of diversity. The difficulties lay with lack of respondents and participation. A “tagline” which actively encourages responses from ethnic minorities may be a solution to these concerns.??

One interesting finding is that in contrast to the male-female gender bias in autism “for diagnosable cases a little over three-to-one (Loomes et al 2017 p12),” in this research online survey, female respondents vastly outnumbered males in all categories. For example, in those individuals responding as being autistic, females outnumbered males by 288 to 177; and for parents of autistic individuals the ratio from female to male was a staggering 1999 to 188. Whilst the last figures might represent the fact that the majority of parent carers are female, this does not explain the discrepancy in autistic people themselves. Perhaps the answer lies not in autism itself, but in the way that gender influences participation in surveys. This is evidenced by studies that found that “women tend to be more likely to self-select to participate in online surveys (Royall, 2020).” Royall cites Smith (2009) who writes “accessing an online survey, completing it, and returning it is certainly more a process of online information exchange than it is a process of information seeking… with the end result being a disproportionate number of female respondents to the online study (Smith, 2009 p13, 14).” This is perhaps not surprising as autistic females and mothers of autistic children and adults are increasingly prominent in literature (e.g. Donna Williams, Temple Grandin, Claire Sainsbury, Sarah Hendrickx etc).?

The research paper concludes “our findings clearly demonstrate that there is no universally accepted way to describe autism (Kenny et al, 2017 p453).” Their conclusions are supported by Vivanti (2020) who argues that “the judicious use of person-first and identity-first language in our journal is appropriate for the context …taking into account the preferences of participants in each study (Vivanti, 2020, p692).”?

In conclusion, I feel that autism terminology should be about acceptance from others and self-acceptance. Ultimately, for me personally, it comes down to the question does autism totally define me, or do I view autism as a part of me? Terminology is very important to the autism community, but “there will not always be a consensus …even amongst autistic people ourselves (Botha et al 2021 p6.)”?

Kenny et al’s (2016) online survey and research analysis identified a preference for changing from person-first to identity-first language amongst autistic individuals themselves. However, many professionals in the field preferred the reverse language preference. Whilst there is some gender and ethnic bias in respondents’ participation, these were considered by the authors of the study, and their clear intent was to be as inclusive as possible. Later studies including Keating et al (2022) came to similar conclusions.

Language around autism provides much heated debate and fury amongst the autistic community. However, some autistic individuals, myself included, feel that endless studies and debates around the semantics of language around autism must not distract from the significant issues affecting our community. Real or lasting change can only come when neurodiversity is valued and appreciated by everyone and there is equality of opportunity for all.???

References:

Botha, M., Hanlon, J. & Williams, G.L (2021). Does language matter? Identity-first versus person-first language use in autism research: A response to Vivanti. Journal of Autism and Developmental Disorders, 1-9

Bury, S.M., Jellett, R., Spoor, J.R. & Hedley, D. (2020). “It defines who I am” or “It’s something I have”: What language do [autistic] Australian adults [on the autism spectrum] prefer??Journal of Autism and Developmental Disorders, 1-11.

Jones, D.R., & Mandell, D.S. (2020). To address racial disparities in autism research, we must think globally. Autism, 24(7), 1587-1589. ?

Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20, 442-462

Keating, C.T., Hickman, L., Leung, J., Monk, R., Montgomery, A., Heath, H., & Sowden, S. (2022). Autism -related language preferences of English-speaking individuals across the globe: A mixed methods investigation. Autism Research, 1-23. ?

Loomes, R., Hull,L., & Mandy, W.P.L. (2017). What is the male to female ratio in autism spectrum disorder? A systematic review and meta-analysis. Journal of the American Academy of Child & Adolescent Psychiatry. Doi:10.1016/j.aac.2017.03.013 (Accessed online 4th January 2023).

Malone, K.M., Pearson, J.N., Palazzo, K.N., Manns, L.D., Rivera, A.Q., & Mason Martin, D.L. (2022). The scholarly neglect of black autistic adults in autism research. Adults in Adulthood. https://doi.org/10.1089/aut.2021.0086 (Accessed online 4th January 2023).????

Royall, K. (2020). A woman’s perspective-a look at gender and survey participation. https://culturecounts.cc (Accessed online 4th January 2023).

Smith, W. (2009). Does gender influence online survey participation? A record-linkage analysis of university faculty, Online Survey Response https://files.eric.ed.gov.fulltext/ED5071717 (Accessed online 5th January 2023).

Vivanti, G. (2020). Ask the editor: What is the most appropriate way to talk about individuals with a diagnosis of autism? Journal of Autism and Developmental Disorders 50(2) 691-693.