Concerns over language in PLoS One autism paper lead to brief withdrawal and correction

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On September 28, PLoS One published a paper, “The Level and Nature of Autistic Intelligence II: What about Asperger Syndrome?

But rather than celebrate another publication for her CV, one of the authors, Michelle Dawson, of Centre d’Excellence en Troubles Envahissants du Développement de l’Université de Montréal (CETEDUM) in Montréal, wasn’t happy. The PLoS One editors had made some changes she didn’t like. And she let everyone on Twitter know:

PLoS changed the language in our Asperger Raven paper. Now it is harmful to the study participants Totally unethical

Changes PLoS made undermine the paper & betray the autistic study participants. Now their participation harms them–they are judged sick.

The issue was that the term “autistics” had been changed throughout the paper to “people patients with autism,” in what — as became clear later — the editors thought was an attempt to remove the stigma of autism. It’s the same reason why, for example, news organizations are encouraged to refer to “people with diabetes” rather than “diabetics,” because the latter defines them by their disease. It turns out, however, that Dawson thought defining autism as a condition or disease was far worse than simply referring to “autistics.” And the changes had been made without her knowledge, according to her subsequent tweets:

For those unfamiliar with PLoS-ONE (who were fine with a previous paper of ours), they don’t send page proofs. So we had no warning at all.

Wondering, generally & about nothing in particular, whether scientists have ever retracted a paper because the *journal* was unethical.

PLoS One responded quite quickly. First, a tweet from Dawson on the 29th:

Progress: URL for our Asperger Raven paper now reads “Page Not Found.” And we have an apology from PLoS. Stay tuned.

And one from PLoS One:

@autismcrisis Hi Michelle, we are extremely sorry for the mistake, we’re fixing it as we speak. Should be fixed by today.

Dawson’s response:

@PLoSONE many thanks for your apology & prompt response, greatly appreciated by all of us

The paper was removed from the site for about 20 minutes, PLoS One tells Retraction Watch — although Dawson referred to the paper being in “limbo” on October 4, perhaps because the URL had changed — while editors made fixes. When it went back up, this correction ran along with it:

This article initially incorrectly referred to “patients with autism” rather than “autistics”.

The wording change was suggested by myself on submission, in line with the policy of PLoS ONE that “potentially stigmatizing labels should be changed to more current, acceptable terminology”. After discussing this with the authors, it is clear that either “person with autism” or “autistic” can be acceptable among researchers and the community – and the choice of wording should have been the authors’.

This suggestion should have been discussed with the authors, but instead the wording was changed during the production process without consulting them. We are aiming to ensure that such changes are not made again without consulting the authors.

We corrected this error as soon as we were made aware of it. PLoS ONE did not intend to make such changes without asking the authors, and I sincerely apologise for the distress caused to the authors and for the brief unavailability of this article.

Matt Hodgkinson
Associate Editor

The move earned a tweet of gratitude from Dawson:

PLoS-ONE associate editor has added an explanatory comment to our Asperger Raven paper First rate & much appreciated

So all seems to have ended well in this unusual temporary withdrawal that wasn’t quite a retraction. There are lessons here about the use of language and stigma, brought together here by Emily Willingham. We’re seeing good intentions on PLoS One’s part, and our only suggestion would be that yes, journals should make a habit of sending authors final page proofs.

20 thoughts on “Concerns over language in PLoS One autism paper lead to brief withdrawal and correction”

    1. “No idea what Dawson is complaining about. Strange.”

      I can speak for myself in that I would have been displeased had an editor changed the wording in one of my papers without my approval.

      On a very basic level, a scientific paper is not for the editors to change. For example: an editor can suggest changes, and manage the formatting (position of graphs, how citations are formatted, etc.) or inform the author that the paper is over a page limit and needs to be shorted. But to change the actual wording without the author’s approval is not within the scope of the journal-editor/author relationship.

      When I read a scientific paper, I am reading the words of the authors.

  1. I can’t (nor would I want to) speak for Dawson, who can speak for herself, but here’s Jim Sinclair’s 1999 essay on why he, as another autistic adult, does not want to be referred to as a “person with autism.”

    Why I Dislike “Person First” Language

    Makes sense to me in the broad historical context of autism.

    1. I really like that essay. Some very good points and it shows how well ment political correctness can completely turn around into the wrong direction.

      Is it true that in the US it is the LAW (disabilities act) to use person first language?

      Anyway, Sinclair’s point 3 is really striking: As long as the use of adjectives or specific nouns for describing people is not completely banned, you always know that a person first term describes something negative. A lot of people with disabilities would rather see their disability as an integral part of them that makes them different but that is not necessarily inherently bad.

      And I love Sinclair’s term “people with femaleness”! This must be the ultimate pc term. And in the logic of first person language, it is a must, as it stresses the human beeing first and makes us all more equal…..

      However, with respect to the unknown internal orientation of the person, should we maybe use “person with apparent femaleness” or “person with signs of femaleness”?

      As to the original topic:

      We all agree that every change from the original manuscript needs to be documented by the proof editors and needs prior approval by the authors. For online only journals, it is probably tempting to not send out proofs, but as we see here that doesn’t work. Every change should be clearly marked so that the author finds them right away and can either agree to them or not.

  2. Thanks for covering this, though it must be a slow day for retractions. By the way, I didn’t comment on, much less object to, autism being referred to as a “condition” (Simon Baron-Cohen’s group does this, as do a few others, this is fine). Here is a bit more information if you’re interested.

    As you write, the paper was posted on Sept 28 and taken down on Sept 29. Over the next several days, we were involved in the process of making corrections. On Oct 4, we were asked to check the text of the corrected version. When we okayed the corrected text, the paper was reposted, on Oct 4. We received many sincere apologies on the way and everyone at PLoS-ONE was very helpful and understanding.

    There were about 70 changes made by PLoS-ONE, spanning the abstract, text, and figure legends. This included numerous inaccurate characterizations of autistics (those in our study, in other studies, and autistics in general) as “patients.” But also in two places our original text was inaccurately replaced with “patients without autism.”

    Here our concerns were inaccuracy, misrepresentation, and potential resulting harms. In addition there was the imposition of language preferences which should not be imposed.

    My view is that language used to characterize autistics in autism research should be accurate, and should not create or further unhelpful biases. Beyond that, preferences differ, there is no consensus, and language about autistics should not be imposed in any direction by editors or reviewers or journals (see Pellicano & Stears, 2011, on this point). I have language preferences, but as a reviewer I don’t impose them.

    We had a very good experience with PLoS-ONE on a previous paper, in which autistics are… autistics. While there was a misunderstanding this time around, the journal’s response was fast, thorough, and excellent, and everyone learned.

    1. The use of “patient” may not be entirely inaccurate. However, it would certainly be preferable to avoid the term in this context given the common understanding of the word. Defitions include:

      1. a person who is under medical care or treatment.
      2. a person or thing that undergoes some action.
      3. Archaic . a sufferer or victim.

      Definition (2) could be argued to include those who have been tested as part of a research project.

      1. But you wouldn’t call a healthy control a patient if they just had an MRI scan, or a cognitive test, as part of a ‘basic’ study that wasn’t about a disease. Well, I would never do so if I were writing a paper.

      2. The British NHS way is to replace “patients” with “service users”. So the “healthy controls” are simply the “non-users”.

  3. “When I read a scientific paper, I am reading the words of the authors”. This is a completely false statement. You are reading the words of the authors, reviewers and editors.

    I just think this was a lot of fuss about not much at all to be honest. Sorry, just my $0.02 worth.

    1. ” You are reading the words of the authors, reviewers and editors. ”

      That is not what happens in any of the papers I’ve written, which is quite a lot in a number of journals. Referees have made suggestions and some I’ve taken and some I have not. Editors have made me change the style of figures to match the journal, or other similar suggestions. Nothing ends up in the final version without my approval.

      As a referee I have offered suggestions for rewording parts of papers. This happens, as you can imagine, more in papers written by authors whose native language is not the same as that of the journal (English in my case). These are suggestions, and a courtesy at that. A flat statement of, “The authors should consult an English language editor before resubmitting” would be sufficient. My wording is not inserted into the papers at all. My wording is accepted or modified at the discression of the authors.

      I have on one occasion edited conference proceedings. It was not my charge to alter the text without the author’s knowledge.

      Perhaps the journals you publish in are different than in my field. It is unquestionably not within the scope of an editor to make the changes made in the example above in the journals in which I publish. If the journal has a policy of person-first language, for example, it is the duty of the editor to point this out to the authors and allow them the opportunity to accept, pull their paper or discuss with the editor why in this case the policy should be waived. It is not the job of the editor to make the changes him/her self.

      A journal article is not “work for hire” as is a news story. In a news article an editor is expected to make changes. The authors have paid to place their article in the journal. If the editors do not wish to accept the article, they can decline it or they can inform the authors of where the paper doesn’t fit the journal’s policy.

      1. Perhaps I was not clear. I am not referring to the absolute wording per se and, you are right, editors in my field rarely change the text without you approving it, of course. What I meant was that often in manuscripts, we are “forced” to add text and discussion points which we may not be 100% happy with. This can be relatively minor (i.e. a gene symbol etc), or can be fairly major (i.e. additional interpretations of the data and even unnecessary experiments). Unless you are Mr. Bigshot, who cares not for what reviewers say and have power over editors, you are likely going to make the changes suggested by the reviewer and move on. It will be written by you, of course, by it may as well be written by the reviewer. This was my point.

  4. Science and I believe Nature both have copy editors that do a lot of editing on manuscripts, but they will send you these changes. Sometimes they will prepare the manuscript in journal format before official acceptance to speed up the process, though this does somewhat signal that they are going to accept it barring something unforeseen.

    1. I like the way this is handled in ACS journals where one gets a pdf detailing all format changes done to your final submitted version. Frequently I find the attempts to improve my English result in completely changed meaning. But having a list of changes these things can be managed easily.

  5. On the more general point, I’ve had one journal change the wording in my papers to what they consider to be ‘correct’ and in doing so changed the meaning or made grammatical mistakes. From the way the edits where made, it was clear that the proof-readers had no or little scientific training (and a poor grasp of grammar). It drives me nuts. They could at least have highlighted the changes; instead, I only caught the errors by chance, then had to proof read the text again for the squillionth time. From the email address I was given, it was clear the proof-reading was being done by an external company.

  6. I think there’s a mistake in the post. It says that “The issue was that the term “autistics” had been changed throughout the paper to “people with autism” – but the problem as I understand it (and as Michelle confirms in her comment) was that it was changed to “patients”. Not people.

  7. Just to say something silly…isn’t CETEDUM the “Center of Excellence for Invasive Developmental Problems”? Aren’t they supposed to be working with people suffering from one or more of those problems?


  8. Slightly tangential: David Mermin wrote in his article “What’s wrong with this prose?” (Physics Today v42 issue 5; also collected in “Boojums All The Way Through”) a slightly more light-hearted take on the issue of wrestling with journal editors on the use of language.

    (Possibly paywalled link: )

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