I Wish I Could Rewrite my Papers

I started my PhD in October 2014 - overall, I have worked in academic research for almost 8 years - am I therefore an erudite school girl? Or, since I published my first English-written paper in 2018 - and I have only existed for 4 research years - may I be considered just a scholarly toddler?

Either way, 8 or 4 years are not many compared to my employed life expectancy (currently, another 31 years). Nonetheless, I already wish that I could rewrite my papers.

As a PhD Student, the language and models I have been exposed to and that I had to be proficient with to level up are quickly becoming an extinct tongue. As a student, I had to add to my vocabulary impairment, skill, symptoms, condition and their complex interactions. They became technical words to me - like bolt, screwdriver and hammer, standard deviation, ANOVA and linear regression. Quite rightly, autistic and non-autistic advocates have pointed out that that first set of words is referring to people, and not tools. And while the field is shifting and change is reflected by the choices of topics, speakers and committee members of conferences, training courses and the internal structure of research organisations, the real crux lies in publications. And while there is no justification for triggering in others sentiments of dehumanisation, there are causes for that that extend beyond individual responsibility, and will not be solved with one or ten persons' apology.

I wish to make clear that the dehumanising language comes not natural: people who enter medicine and research learn it in books and classes, and must demonstrate that they know it through exams. It is a difficult, technical language, that often uses terms that are present in every day language, but with a different meaning (such as case), and takes years of struggle to learn. Having graduated from a traditional Medical School, and finished my PhD more than 3 years ago, I was heavily subjected to this training. As soon as I was exposed to the neuro-diversity stance, I took up the challenge of unlearning this language - and the urgency of the matter required that I unlearn in a day what I learnt in years. To be honest, it is still not really unlearnt - but I willingly correct and substitute words as I talk during meetings, presentations and classes. For publications, it is often more problematic.

The lag between people’s sentiments and publications is significant: often, it takes one year or more for a publication to get out, and the language often reflects past priorities in a quickly changing field. The earliest in your career you are, the longer it will take for your paper to get to the publication stage, and the more pressure you will face to please supervisors, senior co-authors, peer-reviewers (experts in the field recruited by editors that provide feedback on publications and recommend whether to publish or not, that remain anonymous), and journal editors in order to publish your work. Supervisors, senior co-authors, reviewers, and journal editors are less likely to work on the field and be in direct contact with communities, and are generally less aware of alternative means of information - such as Instagram and Twitter. Therefore, they may not have yet absorbed changes that early career researchers are aware of, and it is not uncommon that these figures - especially peer-reviewers - request the use of diagnostic labels and terminology that has been agreed upon in official manuals such as the DSM and the ADOS (such as high and low functioning labels).

The pressure to publish may sound a motive of vanity, but it is actually hard-core survival: publications are the only factors that count for finding a job (given the ubiquity of fixed terms contracts in academia, researchers often have to find new employment every 2-3 years) and progress with career, even if progressing means moving out of research, for example for focusing on teaching. Not publishing, means risking unemployment, so the stake is high.

These scenarios offer a reflection on what needs to change to allow that more profound, and important, changes occur systematically - without advocates having to spot triggering articles one by one: the timing and process of reviews of publications, and the weight that publications have in a researcher’s worth must change.

First, the timing of publications is overly long. One main contributing factor is that researchers are not paid to write papers, but must do so when all other coordination and technical tasks that have priority and pay their wages are concluded. Another absurdity lagging publication rates behind is that peer-reviewers are hard to recruit because journals do not pay them.

These are clearly degenerations of current inequalities and power dynamics existing in academia and must be fixed. Discussing how to fix these here is out of scope, but let me just suggest that tens of thousands of funding is payed to journals for releasing publications open access - the same journals that do not even pay peer-reviewers - when free platforms for dissemination exist. That money could be used to hire technicians and support figures that would allow researchers to actually spend their time doing research. And if journals were left without the cash injection of open access, maybe they would actually think to offer some kind of service to authors, rather than laying down on the mantra ‘peer-review your neighbour as yourself’.

Second, senior co-authors and peer-reviewers should be asked to provide feedback on aspects they are actual experts about: currently, senior co-authors and peer-reviewers can express their opinion on every aspect of the paper - from statistics, to design, to language. But a geneticist or a statistician may not be fit to judge the language. On the other hand, someone who is doing advocate or community work could take on the role of peer-review for aspects related to ethics and language.

Third, the burden of being hired and funded solely for the number of first-author publications must be taken off the shoulders of researchers, and leveled with all the training, teaching, coordination, networking, technical implementation, analysis, programming and public engagement. If publishing is not a matter of life or death anymore, individual persons will feel that they are less pressured to conform.

To link back to memories from my training, teachers and coordinators of medical and psychology courses should be included in this discussion, to ensure that the next generations of students is not forced to learn something that is unethical. And for those that have gone through that training already, a distinction should be made between individual responsibility and the responsibility of a system that oppresses us all.

Lastly, I write from the perspective of a non-native English speaker; I was not only imposed a certain technical language, but I was also imposed English - or a literal translation of it, with the points of view that come with a foreign perspective. There are thousands of other languages around the world that do not possess the same ontologies to talk about autism and neuro-diversity, or do not possess them at all, but that’s a route that is currently closed because of the use of English. And because of that, I feel that a lot of non-English speakers are left out of the discussion.

That’s all for today - I trust in the power of double empathy that this will bring to better lives for autistic people and researchers.