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• W4280617367 abstract "Autism in AdulthoodVol. 4, No. 2 Letters to the EditorFree AccessRe: Older Age Autism Research: A Rapidly Growing Field, but Still a Long Way to Go by Mason et al.; DOI: 10.1089/aut.2021.0041 (Previously titled: The Rising Tide of “Gerontautism”)Kieran Rose and Cos MichaelKieran RoseAddress correspondence to: Kieran Rose, Honorary Research Associate, Department for Psychology, University of Sunderland, , C/O: , The Autistic Advocate, The HUB, 1 Sherburn Terrace, Consett, , County Durham, United Kingdom, DH8 6ND E-mail Address: kieran@theautisticadvocate.comDepartment for Psychology, University of Sunderland, Sunderland, United Kingdom.www.theautisticadvocate.comSearch for more papers by this author and Cos MichaelAutism Age, Norwich, United Kingdom, www.autismage.comSearch for more papers by this authorPublished Online:9 Jun 2022https://doi.org/10.1089/aut.2022.0023AboutSectionsPDF/EPUB Permissions & CitationsPermissionsDownload CitationsTrack CitationsAdd to favorites Back To Publication ShareShare onFacebookTwitterLinked InRedditEmail Recently, an article published in Autism in Adulthood, The Rising Tide of “Gerontautism” by Mason et al.1,* was poorly received by members of the Autistic community amidst accusations of being stigmatizing.The term “Gerontautism” brought some Autistic commentators onto social media to share images of tortoises and people with walking sticks and zimmer frames, wizened, and bent over. Others pointed out that the term was being applied to all Autistic people aged older than 50 years: and the experiences of people across such an enormous span of time were likely to be enormously different.Stigma is a lifelong companion to Autistic people who are bombarded by narratives, stereotypes, language, and misinformation born from a stigmatizing academic and professional history and compounded by the media and society.We live in a world driven and informed by research, but if you are not a part of the community you are researching, do not engage fully with that community, or do not recognize the negative narratives identified by that community, then it is highly likely that you will not recognize the potential negative impacts of any work you produce as highlighted by the double empathy problem.2For those Autistic people who actively challenge stigma, it is depressingly unsurprising when academic articles are published that perpetuate stigmatizing narratives and even go as far as creating new ones. Even articles with important and needed content are written by people with only the best of intentions.The article in question here is incredibly important, highlighting that research focused on the needs of aging Autistic people is, at best, in scant supply. It is our opinion that the vital messages from this article were lost in the reaction to pejorative and easily avoidable terminology.The title used the term: “A rising tide…,” in relation to Autistic people: immediately provoking comparison with the term autism epidemic,3 which negatively references the increasing identification of Autistic people. Similar narratives are rife in academia, highlighted by the response of Pearson et al.4 to Mottron's5 and Frith's6 assertations that academia is wrongly pulling away from the notion of “disorder” and that the narrative of autism is somehow becoming diluted by overrepresentation of groups that these academics consider “mild” or “least affected.”We therefore argue that the term: “the rising tide” is loaded, insinuating that increasing identification of Autistic people is problematic; and given the current narratives around climate change, an implied analogy to rising water levels and indications of doom and potential danger is hugely damaging.We believe the authors used this terminology in good faith, although unnecessarily metaphorically hyperbolic, to highlight an increase in the amount of research aimed at aging Autistic people; but for those who are the subjects of this research, their tapping into narratives of fear was too uncomfortable to accept.The article also called for the introduction of a new search term or keyword, to enable academics to identify research focused on older Autistic people. Their suggestion was “Gerontautism”; “geront” is derived from several sources that translate to “Old age” or “Aged one.” Gerontology is the scientific study of old age, the process of aging, and the particular “problems” of old people. Geront is also a root word for geriatric, another medical term used to describe older people.Scientific terms often take on different sometimes negative social meanings in the world outside of academia, highlighted here by the way antiagism campaigners have identified “geriatric” as stigmatizing and nonrepresentative, with connotations of frailty and being worn out.7A salient point was also made regarding the importance of not creating concepts of divisions within the Autistic population based on arbitrary factors such as age. The 1950s concept of childhood autism continues to exist today in the mindset of a society, including professionals working with Autistic children who still believe that they will “grow out of” being Autistic, ignoring concepts such as Autistic Masking.8 Gerontautism could easily bring with it the possibility that there is a late-onset type of autism, marginalizing and isolating older Autistic people further.There is precedent in the potential of this. The broader autism phenotype is used to describe Autistic people who do not fit the stereotyped idea of how Autistic people present as Autistic9 and there have been calls for a “Female Autism Phenotype,”10 suggesting that Autistic women experience a different “type” of autism, a concept that has been deeply criticized.11Language and concepts used to subdivide Autistic people along arbitrary lines pervade the autism narrative. Words such as “high” and “low functioning,” “mild” and “severe” and even the now defunct diagnosis of Asperger Syndrome are used daily to divide Autistic people into groups based on perceived usefulness to society. After decades of calls for change from Autistic people, academia is beginning to acknowledge these terms as stigmatizing.12 Which is ironic when, at the time of writing, the creators of the Diagnostic and Statistical Manual of Mental Disorders (DSM), a diagnostic manual, are discussing updating DSM-V to use the term “profound autism” when describing Autistic people with physical and intellectual disabilities.13A disappointing step backward in the views of these Autistic people and one which we do not wish to see repeated in the context of the article being discussed, with reference to age.The authors of the article argue that the word “Gerontautism” would solely be used as a keyword within academia, but this highlights how academics do not often realize the real-world impact of their work. “Theory of mind”14 is a perfect example of how words, concepts, and theories can go into academic articles as ideas and conceptual wonderings and come out into the world as facts, with Theory of Mind still delivered by professionals in training and acted upon as “fact” more than 30 years later.There is already ample evidence that the idea of Gerontautism has not stayed within an academic environment. The mere fact that it was posted on social media meant that it was accessible and discussed publicly by both nonacademics and academics; indeed, it was shared multiple times and widely accepted with positive comments by academics, as promoted on social media: for example, https://twitter.com/GoldAgeLabUK/status/1486298034438868992Both authors have written extensively on the stigma experienced existing in a world focused on and framed through the experiences of nonautistic people; and both have written on the stigma generated by autism research and by being involved in autism research. Ironically, C.M. recently published an article in Autism in Adulthood, asking “Is Being Othered a Co-Occurring Condition of Autism?”15 with specific reference to her experiences as part of the culture of autism research.With that in mind, the last author on the article identifies as an experienced autism researcher who was part of a team that has recently published a conceptual framework looking at understanding the cultural and contextual factors on autism around the world, including looking at the impact of language and stigma16; the editorial team of Autism in Adulthood are experienced academics; and there is a peer review process that must have gone ahead. All of which begs the incredibly worrying question: why did nobody consider any of these angles? Or if they were considered, on grounds of what evidence were they dismissed?There is an enormous sense of irony here that Autistic people, who have historically been accused of not being able to see “the bigger picture,” are having to highlight the bigger picture to autism researchers.Since the article's publication, there has been some partial and awkward damage limitation, with one of the researchers asking the Autistic community via social media how this specific group would like to be defined in a keyword, with insistence that it must be one word only, for the ease of researchers, regardless of our objections to being marginalized. We feel it important to point out that nobody looking for articles on “Theory of Mind,” “Executive Dysfunction,” “Weak Central Coherence,” “Autism Spectrum Disorders,” “Autistic Spectrum Conditions,” or other pathologizing and stigmatizing multiple word search terms has ever seemed to have had difficulty finding articles on those subjects, so why is this any different? We object to being boxed for academic convenience.There have been apologies and explanations offered by the authors as to why these concerns had not been considered: that the lead researchers are young, that some are Autistic themselves, that the experienced supervisor should have known better; and that this should have been thrown out to general Autistic consultancy.While all this is true, it does not negate that this is a prime example of the lack of care and responsibility taken by academics in recognizing the impact of their ideas and conceptualizations, even unfortunately sometimes by Autistic academics under the influence of nonautistic supervisors. A reminder also that just because someone is Autistic within academia, it does not mean that they are aware of or understand the many intersectional and negative narratives that circulate around us as a community; or are supported enough to feel secure in challenging them if they are aware.17There is a historical narrative through which academics subdivide and classify their community of study in various ways. It is imperative that members of the group being defined have autonomy in deciding what definitions are acceptable. Good practice would have been asking an informed intersectional cross section of the target group of the research what term, if any, would work for them. Indeed, best practice would have been involving older Autistic people in a true participatory style; and being fully informed of the narratives around Autistic people and autism, before the article was propounded.Most disappointing for us is that the hullabaloo created by a deliberately dramatic title, the unnecessary creation of a new “autism term” and the convenience of researchers being placed over and above the needs of the Autistic community, has completely distracted from the content of a much-needed research article.While things have improved somewhat, Autism researchers overall continue to disappoint, continue to cause harm, and continue to scratch their heads over why Autistic people struggle with their mental health.18Academics new and old, Autistic or not, need to understand that the world has changed. Autism research can no longer view itself as detached from its subjects, as it has become more open and accessible to the Autistic community. It is no longer enough to be an academician who is curious or well-intentioned, who speculates and theorizes without truly considering the real-world impact of doing so, because the subjects of your work see you clearly and will rightly and loudly make you answerable to them. There is nearly a century of autism history that has generated so much stigma and trauma that we will be unpicking it far into the future; and now Autistic people are holding academia to account for that; and why shouldn't we?Autism researchers need to take a long hard look at themselves, particularly those seasoned researchers whose views and ideologies may appear to have changed from the deficit narratives, but whose earlier work remains out there and continues to exist in the world and continues to stigmatize and who too easily fall into performatism.The laboratory rats are standing up for themselves, are seeking self-determination, and what we need from autism researchers now is public ownership of mistakes, new and old, and the acceptance of the responsibility, privilege, and power wielded by them.If that happens, then issues such as those highlighted here might stop happening and the stigma experienced by Autistic people can finally start to dissipate.References1. Mason D, Stewart GR, Capp SJ, Happe F. Older Age Autism Research: A Rapidly Growing Field, but Still a Long Way to Go (Previously titled: The Rising Tide of “Gerontautism”). Autism Adulthood [Ahead of print], DOI: 10.1089/aut.2021.0041. Link, Google Scholar2. Milton DEM. On the ontological status of autism: The ‘double empathy problem’. Disabil Soc. 2012;27(6):883–887. Crossref, Google Scholar3. Eyal G. For a sociology of expertise: The social origins of the autism epidemic. Am J Sociol. 2013;118(4):863–907. Crossref, Google Scholar4. Pearson A, Woods R, Morgan H, Botha M. Creating truly radical change in autism research: A response to Frith and Mottron. Autism Res. 2021;14(10):2243–2244. Crossref, Medline, Google Scholar5. Mottron L. A radical change in our autism research strategy is needed: Back to prototypes. Autism Res. 2021;14(10):2213–2220. Crossref, Medline, Google Scholar6. Frith U. When diagnosis hampers research. Autism Res. 2021;14(10):2235–2236. Crossref, Medline, Google Scholar7. Age UK. Is Elderly offensive? AgeUK.org. 2019. https://www.ageuk.org.uk/northtyneside/about-us/news/articles/2019/offensive-description-of-older-people last accessed March 14, 2022. Google Scholar8. Rose K. Autistic Masking and Autistic Burnout. TheAutisticAdvocate.com. https://theautisticadvocate.com/autistic-masking/ last accessed March 14, 2022. Google Scholar9. Losh M, Childress D, Lam K, Piven J. Defining key features of the broad autism phenotype: A comparison across parents of multiple- and single-incidence autism families. Am J Med Genet Part B. 2008;147B:424–433. Crossref, Medline, Google Scholar10. Bargiela S, Steward R, Mandy W. The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. J Autism Dev Disord. 2016;46:3281–3294. Crossref, Medline, Google Scholar11. Pearson A, Rose K. A conceptual analysis of autistic masking: Understanding the narrative of stigma and the illusion of choice. Autism Adulthood. 2021;3(1):52–60. Link, Google Scholar12. Bottema-Beutel K, Kapp SK, Lester JN, et al. Avoiding ableist language: Suggestions for autism researchers. Autism Adulthood. 2021;3(1),18–29. Google Scholar13. Singer A. Labels can harm, but they also can help: See ‘profound autism’. STATnews.com. 2021. https://www.statnews.com/2021/12/07/labels-can-harm-but-they-also-can-help-see-profound-autism last accessed March 14, 2022. Google Scholar14. Baron-Cohen S, Leslie AM, Frith U. Does the autistic child have a “theory of mind”? Cognition. 1985;21(1):37–46. Crossref, Medline, Google Scholar15. Michael C. Is being othered a co-occurring condition of autism? Autism Adulthood. 2021;118–119. Link, Google Scholar16. de Leeuw A, Happé F, Hoekstra RA. A conceptual framework for understanding the cultural and contextual factors on autism across the globe. Autism Res. 2020;13:1029–1050. Crossref, Medline, Google Scholar17. Botha M. Academic, activist, or advocate? angry, entangled, and emerging: A critical reflection on autism knowledge production. Front Psychol. 2021;12:727542. Crossref, Medline, Google Scholar18. Platzman Weinstock C. The Deep Emotional Ties between Depression and Autism. SpectrumNews.org. 2019. https://www.spectrumnews.org/features/deep-dive/the-deep-emotional-ties-between-depression-and-autism/ last accessed on March 14, 2022. Google ScholarFiguresReferencesRelatedDetails Volume 4Issue 2Jun 2022 InformationCopyright 2022, Mary Ann Liebert, Inc., publishersTo cite this article:Kieran Rose and Cos Michael.Re: Older Age Autism Research: A Rapidly Growing Field, but Still a Long Way to Go by Mason et al.; DOI: 10.1089/aut.2021.0041 (Previously titled: The Rising Tide of “Gerontautism”).Autism in Adulthood.Jun 2022.173-175.http://doi.org/10.1089/aut.2022.0023Published in Volume: 4 Issue 2: June 9, 2022Online Ahead of Print:May 12, 2022PDF download" @default.
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