Autism & academic publishing

16th September 2021

Verity Chester
Research Associate and RADiANT Network Manager, Hertfordshire Partnership University NHS Foundation Trust
PhD Candidate, University of East Anglia

Sam Tromans
Associate Professor in Adult Psychiatry, University of Leicester
Honorary Consultant in Psychiatry of Intellectual Disability, Leicestershire Partnership NHS Trust

Recent years have seen a substantial increase in the quantity of autism research being conducted (Tromans & Adams, 2018). However, it is important that research is relevant to autistic persons themselves, with the potential to make improvements in their lives (Long, Panese, Ferguson, Hamill, & Miller, 2017). A crucial step to achieving this goal is through a participatory approach, where autistic persons are involved in all stages of the research process, including determining research priorities, study design, conducting research, and dissemination of findings, including in peer-reviewed journals. This should involve genuine leadership by, or partnership with, autistic persons, rather than a tokenistic arrangement (Fletcher-Watson et al., 2019). An autistic scholar, Milton (2014) suggested that autistic people ‘are frequently frozen out of the processes of knowledge production’, and that this damages the relationship between researchers and the autistic community. Whilst the oft-used adage ‘nothing about us without us’, may seem obvious, a concerted effort must be made to ensure autistic persons are actively represented and involved in academic publishing, and that their voices are heard.

What are the benefits that autistic voices bring to academic publishing?

It is crucial that autistic persons are represented in academic publishing, both in the context of authorship, within peer review, as well as formal positions within publishing organisations. Autistic people offer an invaluable lived experience perspective, where they can provide a voice as to what is important to the autistic community and play a central role in setting the research agenda (Nicolaidis, 2012). Autistic persons often view autism differently to many of their non-autistic peers, opposing the medical model (Gillespie-Lynch, Kapp, Brooks, Pickens, & Schwartzman, 2017), and viewing autism as a mixture of strengths and weaknesses rather than focussing exclusively on impairment (Pellicano & Stears, 2011), otherwise known as neurodiversity. While minimal research has examined the experiences of autistic people in academia, it has been reported that autism makes for good researchers, because of greater focus, closer attention to detail and, in some cases, an enhanced ability to systematise and see patterns (Prior, 2017).

What are the challenges that autistic authors face during the publication process?

Though there has been little research undertaken relating to the writing of autistic people, they may face certain challenges during the publication process. A meta-analysis on written expression in autistic persons (Finnegan & Accardo, 2018) found significant differences in length, legibility, handwriting size, speed, spelling, and overall structure, relative to their non-autistic peers. Although these findings were drawn from a small pool of studies (n = 13), they suggest that some autistic persons may have difficulties with written communication. This suggests that some autistic writers may need support with their writing. However, autistic people represent a highly heterogeneous group, so such findings are unlikely to be true for all autistic people. Difficulties with written communication among autistic persons has previously been attributed to theory of mind¹ difficulties (Brown & Klein, 2011), though more recent findings challenge this assertion (Gillespie-Lynch et al., 2020). However, writing on autism should not be viewed entirely from a non-autistic perspective. The double empathy problem, developed by Milton (2012) describes how communication between autistic peers is highly effective (Crompton, Ropar, Evans-Williams, Flynn, & Fletcher-Watson, 2020) whereas interpersonal difficulties tend to occur between non-autistic and autistic individuals experiencing the world differently, leading to a breakdown in mutual understanding.

What more could publishers & editorial teams do to support autistic scholars?

Publishers and editorial teams have an ethical duty to provide a platform for autistic voices, and to ensure their representation (Milton, 2014). Therefore, non-autistic scholars need to make a concerted effort to both understand and provide a platform for autistic voices in academic discourse. This is particularly relevant to the process of peer review, where an autistic author may be disadvantaged if their submitted article is solely reviewed by non-autistic peers, or vice versa. This issue may not always be immediately apparent, as not all autistic scholars may wish to identify themselves as autistic in their professional activities. Where possible, having articles peer reviewed by both an autistic and a non-autistic scholar may be the preferred option; though such an approach relies on the availability of peer reviewers from both groups being available and willing to participate in the review process. Such an approach could also place a heavy peer review burden on the shoulders of autistic persons.

Publishers need to be sensitive to the needs of the autistic community, and adopt inclusive practices. However, very little guidance is currently available to direct these efforts. Research has indicated the importance of ensuring that website and correspondence is accessible to autistic readers, through avoiding ambiguous phrases and metaphors (Morsanyi, Stamenković, & Holyoak, 2020). Additionally, the use of terminology that is sensitive to the wishes of the autistic community, such as using identity-first (i.e. ‘autistic person’) rather than person-first (i.e. ‘person with autism’) language, as the former is more widely endorsed by autistic adults remains another consideration (Kenny et al., 2016; Bottema-Beutel, 2021). A further challenge is determining the extent of the support that should be offered by journal editors, particularly if it is unknown whether an author is autistic, or if authors have not requested support with their article. Similar conversations occur regarding the provision of support to non-native English speaking authors (3 ways academic journals can better support non-native English speaking authors. 2018). As autism scientists, peer reviewers, and editors, we need to collectively ask ourselves what we are doing to improve the lives of autistic persons, and challenge both ourselves and our peers to do more.

References

3 ways academic journals can better support non-native English speaking authors (2018, June 14). Scholastica. Retrived September 7, 2021. https://blog.scholasticahq.com/post/ways-academic-journals-can-support-…

Bottema-Beutel, K., Kapp, S. K., Lester, J. N., Sasson, N. J., & Hand, B. N. (2021). Avoiding ableist language: Suggestions for autism researchers. Autism in Adulthood, 3(1), 18-29.

Brown, H. M., & Klein, P. D. (2011). Writing, asperger syndrome and theory of mind. Journal of Autism and Developmental Disorders, 41(11), 1464-1474.

Crompton, C. J., Ropar, D., Evans-Williams, C. V., Flynn, E. G., & Fletcher-Watson, S. (2020). Autistic peer-to-peer information transfer is highly effective. Autism, 24(7), 1704-1712.

Finnegan, E., & Accardo, A. L. (2018). Written expression in individuals with autism spectrum disorder: A meta-analysis. Journal of Autism and Developmental Disorders, 48(3), 868-882.

Fletcher-Watson, S., Adams, J., Brook, K., Charman, T., Crane, L., Cusack, J., . . . Pellicano, E. (2019). Making the future together: Shaping autism research through meaningful participation. Autism, 23(4), 943-953.

Gillespie-Lynch, K., Hotez, E., Zajic, M., Riccio, A., DeNigris, D., Kofner, B., . . . Luca, K. (2020). Comparing the writing skills of autistic and nonautistic university students: A collaboration with autistic university students. Autism, 24(7), 1898-1912.

Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., & Schwartzman, B. (2017). Whose expertise is it? evidence for autistic adults as critical autism experts. Frontiers in Psychology, 8, 438.

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(4), 442-462.

Korkmaz, B. (2011). Theory of mind and neurodevelopmental disorders of childhood. Pediatric Research, 69(8), 101-108.

Long, J., Panese, J., Ferguson, J., Hamill, M. A., & Miller, J. (2017). Enabling voice and participation in autism services: Using practitioner research to develop inclusive practice. Good Autism Practice (GAP), 18(2), 6-14.

Milton, D. E. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & Society, 27(6), 883-887.

Milton, D. E. (2014). Autistic expertise: A critical reflection on the production of knowledge in autism studies. Autism, 18(7), 794-802.

Morsanyi, K., Stamenković, D., & Holyoak, K. J. (2020). Metaphor processing in autism: A systematic review and meta-analysis. Developmental Review, 57, 100925.

Nicolaidis, C. (2012). What can physicians learn from the neurodiversity movement? Ama Journal of Ethics, 14(6), 503-510.

Pellicano, E., & Stears, M. (2011). Bridging autism, science and society: Moving toward an ethically informed approach to autism research. Autism Research, 4(4), 271-282.

Prior, M. (2017, February 10). Autistic academics give their thoughts on university life. The Conversation. Retrieved September 7, 2021, from https://theconversation.com/autistic-academics-give-their-thoughts-on-u…

Tromans, S., & Adams, C. (2018). Brief report: Autism spectrum disorder: A comprehensive survey of randomized controlled trials. Journal of Autism and Developmental Disorders, 1-5.

1 Defined as an awareness that others have a mind and mental states that are potentially different from one’s own (Korkmaz, 2011).