Talk:Autism
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Many of these questions have been raised in the scientific and popular literature, and are summarized here for ease of reference. The main points of this FAQ can be summarized as:
Q1: Why doesn't this article discuss the association between vaccination and autism?
A1: This association has been researched, and is mentioned in the page - specifically with some variant of the statement "there is no convincing evidence that vaccination causes autism and an association between the two is considered biologically implausible". Despite strong feelings by parents and advocates, to the point of leaving children unvaccinated against serious, sometimes deadly diseases, there is simply no scientific evidence to demonstrate a link between the two. Among the organizations that have reviewed the evidence between vaccination and autism are the Centers for Disease Control and Prevention (United States), Institute of Medicine (United States), National Institutes of Health (United States), American Medical Association, the Cochrane Collaboration (British/international), British Medical Association (Britain), National Health Service (United Kingdom), Health Canada (Canada) and the World Health Organization (international). The scientific community took this issue seriously, investigated the hypothesis, designed and published many studies involving millions of children, and they all converged on a lack of association between autism and vaccination. Given the large number of children involved, the statistical power of these studies was such that any association, even an extremely weak one, would have been revealed. Continuing to press the issue causes unnecessary anguish for parents and places their children, and other children at risk of deadly diseases (that disproportionately harm the unvaccinated).[1][2][3] Q2: Why doesn't this article discuss the association between thiomersal, aluminum, squalene, toxins in vaccines?
A2: Thiomersal has also been investigated and no association is found between the two. Vaccines are heavily reviewed for safety beforehand, and since they are given to millions of people each year, even rare complications or problems should become readily apparent. The amount of these additives in each vaccine is minuscule, and not associated with significant side effects in the doses given. Though many parents have advocated for and claimed harm from these additives, without a plausible reason to expect harm, or demonstrated association between autism and vaccination, following these avenues wastes scarce research resources that could be better put to use investigating more promising avenues of research or determining treatments or quality-of-life improving interventions for the good of parents and children.
Specifically regarding "toxins", these substances are often unnamed and only vaguely alluded to - a practice that results in moving the goalposts. Once it is demonstrated that an ingredient is not in fact harmful, advocates will insist that their real concern is with another ingredient. This cycle perpetuates indefinitely, since the assumption is generally a priori that vaccines are harmful, and no possible level of evidence is sufficient to convince the advocate otherwise. Q3: Why doesn't this article discuss X treatment for autism?
A3: For one thing, X may be discussed in the autism therapies section. Though Wikipedia is not paper and each article can theoretically expand indefinitely, in practice articles have restrictions in length due to reader fatigue. Accordingly, the main interventions for autism are dealt with in summary style while minor or unproven interventions are left to the sub-article. Q4: My child was helped by Y; I would like to include a section discussing Y, so other parents can similarly help their children.
A4: Wikipedia is not a soapbox; despite how important or effective an intervention may seem to be, ultimately it must be verified in reliable, secondary sources that meet the guidelines for medical articles. Personal testimonials, in addition to generally being considered unreliable in scientific research, are primary sources and can only be synthesized through inappropriate original research. If the intervention is genuinely helpful for large numbers of people, it is worth discussing it with a researcher, so it can be studied, researched, published and replicated. When that happens, Wikipedia can report the results as scientific consensus indicates the intervention is ethical, effective, widely-used and widely accepted. Wikipedia is not a crystal ball and can not be used to predict or promote promising interventions that lack evidence of efficacy. Without extensive testing, Wikipedia runs the risk of promoting theories and interventions that are either invalid (the Refrigerator mother hypothesis), disproven (secretin and facilitated communication),[4] or dangerous (chelation therapy, which resulted in the death of a child in 2005).[5] Q5: Why doesn't this article discuss Z cause of autism? Particularly since there is this study discussing it!
A5: No ultimate cause has been found for autism. All indications are that it is a primarily genetic condition with a complex etiology that has to date eluded discovery. With thousands of articles published every year on autism, it is very easy to find at least one article supporting nearly any theory. Accordingly, we must limit the page to only the most well-supported theories, as demonstrated in the most recent, reliable, high-impact factor sources as a proxy for what is most accepted within the community. Q6: Why does/doesn't the article use the disease-based/person-first terminology? It is disrespectful because it presents people-with-autism as flawed.
A6: This aspect of autism is controversial within the autistic community. Many consider autism to be a type of neurological difference rather than a deficit. Accordingly, there is no one preferred terminology. This article uses the terms found in the specific references. Q7: Why doesn't the article emphasize the savant-like abilities of autistic children in math/memory/pattern recognition/etc.? This shows that autistic children aren't just disabled.
A7: Savant syndrome is still pretty rare, and nonrepresentative of most of those on the autistic spectrum. Research has indicated that most autistic children actually have average math skills.[6] Q8: Why doesn't the article mention maternal antibody related autism or commercial products in development to test for maternal antibodies?
A8: There are no secondary independent third-party reviews compliant with Wikipedia's medical sourcing policies to indicate maternal antibodies are a proven or significant cause of autism, and commercial products in testing and development phase are unproven. See sample discussions here, and conditions under which maternal antibody-related posts to this talk page may be rolled back or otherwise reverted by any editor. References
Past discussions For further information, see the numerous past discussions on these topics in the archives of Talk:Autism:
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Autism as a Neurodevelopmental Disorder - Response to RIT RAJARSHI et al.
[edit]Recently across several posts, @RIT RAJARSHI and @Autistic scorpio have expressed concerns about the article referring to autism as a neurodevelopmental disorder. RAJARSHI also applied a template that implies substantial undue weight is present in the article. For organisational purposes, because replies are fragmented across the talk page and overlapping with other discussions, I feel it's necessary to divert this dialogue to a dedicated section.
We have previously made our position clear extensively in aforementioned posts and therefore I will only highlight some crucial points here.
Regrettably, RAJARSHI et al. ignore the importance of reflecting the global scientific consensus per Wikipedia's policies and guidelines, which mandate reliance on peer-reviewed sources when available, and that scientists determine what qualifies as scientific or pseudoscientific (see Wikipedia:scientific_consensus and Wikipedia:reliable_sources).
Around the world, the developers of scientifically-based guidelines, standardised diagnostic criteria, consensus statements, systematic reviews, meta-analyses etc. unanimously conclude that autism is a neurodevelopmental disorder (for references, please see Talk:Autism#c-Димитрий Улянов Иванов-20241126131200-Oolong-20241126104700). Unfortunately, these references are not addressed in the replies by RAJARSHI et al.
Contrary to RAJARSHI, no significant debate exists in the scientific community of whether ASD is either a pathology or simply as a manifestation of biological diversity. The prevailing evidence reconciles neurodiversity, with the classification of a neurodevelopmental disorder, when it reaches an extreme degree that begins to significantly impair an individual's functioning. In short, these two concepts are not mutually exclusive.
Applying the assertion that a categorisation cannot be imposed on underlying spectrums of diversity as the standard for defining disorders would rule out all currently known mental and developmental disorders, including schizophrenia, bipolar disorder, ADHD, Tourette’s syndrome, intellectual disability, to name just a few, and many medical disorders could not be considered as valid. None of these disorders could withstand comparison to such a criteria for concluding a disorder to be valid. Such unscientific challenges to the validity of ASD are not just misguided but harmful because they can serve to misinform policymakers and the public and thereby restrict, reduce, or eliminate access to services for them.
On the topic of due weight, in my view, the lede neutrally represents both the scientific and neurodiversity movement perspective on the issue of the appropriateness of terms. I have not seen evidence to suggest there is significant undue weight in the article, nor enough to necessitate placing a tag.
Lastly, I'd like to voice my disagreement on the idea that viewing conditions, like ASD or ADHD, as disorders is unanimously harmful to people with lived experience. Many, in fact, do not feel that this sufficiently or accurately represents their needs. They feel excluded by much of its rhetoric. They don't accept how it frames mental disorders as being the same kind of harmless or positive diversity as race, sex or gender. Race, sex and gender are not disabling or impairing, while mentla disorders often inherently are. All are equally deserving of rights, but they find the way that the politicisation of neurodevelopmental disorders, often from self-diagnosed or unimpaired advocates, erases the experiences of people who are impaired directly by their symptoms, harmful. There is a widespread sentiment in the movement that any treatment is tantamount to abuse, overlapping fully with the anti-psychiatry movement. As people who greatly benefit from treatment such as therapy or medication, they find this absolutely despicable and unacceptable.
In conclusion, rather than removing the scientifically-established framing of autism, in my view, there are much more important priorities. I think we should instead focus on how autism should be framed in different contexts. For example, a section based on society's perspective of the disorder would not have to rely on peer-reviewed sources (from my understanding of WP's policies), without this applying to the article in general. Димитрий Улянов Иванов (talk) 13:24, 13 December 2024 (UTC)
- Stop calling me "et al.", and stop name calling. You could have been written the message is for all the critics. What I wrote, I wrote individually. The article and its language and framing was too triggering for me. There exists an Autistic consensus and it is not okey to deny or disrespect that RIT RAJARSHI (talk) 13:40, 13 December 2024 (UTC)
- Et al is not ‘name calling’, it’s an academic and short way of referring to ‘and others’, hence why I used it. It’s fine and understandable if you personally disagree with the language used, but you haven’t actually addressed the substance of our points at all, which are intended to prevent inaccurate edits/editorialisation. If you would like to propose article changes, please don’t just reiterate arguments I addressed in my response above. Димитрий Улянов Иванов (talk) 14:18, 13 December 2024 (UTC)
- Thank you for explaining why you used 'et al'. I know et al means colleagues but I was expressing individual opinion. I do suffer from impairments and deficits like situational mutism, working memory problems, high sensitivities, executive function issues etc. and yes I do think some treatment like mind training helps, but forced eye contact or teaching minutes of social norms create lot of pain. And it just helps in day-to-day survival if society is more accommodating. Also, a difference in body language or interpretation of language works as a disadvantage in interview tables and creates hostility in workplaces. So what is wrong if neurotypicals too are taught about lack of eye contact or different style of responding is not necessarily associate with perceived meaning? I do not held a radically antipsychiatry beliefs, I require to take psychotherapy as well as psychiatric treatment on routine basis, but that does not mean every treatment modality is helpful, or the professionals have nothing to learn from the patient party. If society was designed differently, maybe the struggle could be lesser. RIT RAJARSHI (talk) 14:40, 13 December 2024 (UTC)
- No problem! Thanks for your reply, and I apologise that I may have implied you may hold anti-psychiatry beliefs. This has not been my intention in writing this post here, it has just come partly as a result of dealign with heated and ideological promotions occurring in this talk page. Reading it now, I wouldn't have come from the perspective and tone I did.
- I hope we can agree that while there is no doubt society is the cause of some of autistic people's impairments, such as - as you point out - neurotypical people being unaware of, or discriminating against, people's difficulties with maintaining eye contact; in this case, societal accommodations would be helpful to varying degrees, as they are in many other contexts; but that society is by far not the sole cause of people's disability or impairment with autism.
- A subset of advocates over the past decade or so related to the neurodiversity movement wish to claim that the underlying brain differences simply reflect a spectrum of brain design and functioning, which is true in part. But when that degree of "diversity" reaches a point that it significantly and pervasively impairs functioning in major life domains, puts one at greater risk of injury, morbidity and even early mortality, then it is not just another way of being so to speak but starts representing an impairing deficiency or deviation which are the criteria we use to identify a disorder. If we simply disqualify the validity of neurodevelopmental disorders, then no treatment would be provided to those in need of it, which seems cruel to me or at least ill advised when people are experiencing adverse consequences as a direct result of their diversity and thus are reporting suffering. Димитрий Улянов Иванов (talk) 20:08, 13 December 2024 (UTC)
- Димитрий Улянов Иванов, why are you sometimes referring to yourself in the plural (e.g., "We have previously made our position clear", "you haven’t actually addressed the substance of our points at all"). Re: "I have not seen evidence to suggest there is significant undue weight in the article," would you agree that right now, the majority of the article focuses on medical aspects, and that that is not the only relevant perspective? For example, what would you say is the appropriate weighting of medical views vs. social scientific views? FactOrOpinion (talk) 19:56, 13 December 2024 (UTC)
- Hi, I'd like to preface that I regret writing the response in such an accusatory way, it wasn't really my intention. My apologies. There has been extensive discussions and edit summaries clarifying the aforementioned matters, from numerous people, which I intended to refer to but re-reading it now I can see how it's ambiguous and can be interpreted differently.
- Regarding undue weight, the article does not focus overly on medicine - at least not on the issues I was mentioning. The scientific references I have provided that recognise autism as a neurodevelopmental disorder arise from and cover a variety of fields and perspectives about autism, not merely medicine. Some do cover social implications of autism (e.g. ESCAP's international guidelines). Димитрий Улянов Иванов (talk) 20:44, 13 December 2024 (UTC)
- Re: "the article does not focus overly on medicine - at least not on the issues I was mentioning," just clarifying that I wasn't asking about the issues you'd mentioned, but about the article as a whole. FactOrOpinion (talk) 22:26, 13 December 2024 (UTC)
- Thank you for explaining why you used 'et al'. I know et al means colleagues but I was expressing individual opinion. I do suffer from impairments and deficits like situational mutism, working memory problems, high sensitivities, executive function issues etc. and yes I do think some treatment like mind training helps, but forced eye contact or teaching minutes of social norms create lot of pain. And it just helps in day-to-day survival if society is more accommodating. Also, a difference in body language or interpretation of language works as a disadvantage in interview tables and creates hostility in workplaces. So what is wrong if neurotypicals too are taught about lack of eye contact or different style of responding is not necessarily associate with perceived meaning? I do not held a radically antipsychiatry beliefs, I require to take psychotherapy as well as psychiatric treatment on routine basis, but that does not mean every treatment modality is helpful, or the professionals have nothing to learn from the patient party. If society was designed differently, maybe the struggle could be lesser. RIT RAJARSHI (talk) 14:40, 13 December 2024 (UTC)
- Et al is not ‘name calling’, it’s an academic and short way of referring to ‘and others’, hence why I used it. It’s fine and understandable if you personally disagree with the language used, but you haven’t actually addressed the substance of our points at all, which are intended to prevent inaccurate edits/editorialisation. If you would like to propose article changes, please don’t just reiterate arguments I addressed in my response above. Димитрий Улянов Иванов (talk) 14:18, 13 December 2024 (UTC)
- @Димитрий Улянов Иванов Stop calling me "et al.", and stop name calling. You could have been written the message is for all the critics. What I wrote, I wrote individually. The article and its language and framing was too triggering for me. There exists an Autistic consensus and it is not okey to deny or disrespect that RIT RAJARSHI (talk) 13:43, 13 December 2024 (UTC)
- Regarding your attempt to "divert this dialogue to a dedicated section", please see this xkcd comic.
- Your claim that "no significant debate exists in the scientific community of whether ASD is either a pathology or simply as a manifestation of biological diversity" is, objectively, wildly inaccurate, and remains so however many times your repeat it. Numerous references already provided show this very clearly.
- It's hard to know how else to explain that your references do not (and cannot) show what you keep claiming they show. You seem to be trying to declare the extensive debate that exists about this in scientific communities as somehow 'insignificant'? It... is very clearly not insignificant. Oolong (talk) 16:12, 13 December 2024 (UTC)
- This shouldn't merit a response because unfortunately, you are, again, completely ignorance the citations I referenced in the very post you're replying to. In the link provided, I explicitly and exclusively quoted each citation, so it is not "[me] claiming they show" something. There, I also addressed the references you have raised and showed how most of them are irrelevant as they represent blog posts (not peer-reviewed; considered unreliable by Wikipedia policies), or advocacy papers, which are refuted in the scientific literature, and would not overturn the consensus.
- I would like to give you an example:
- - "Vaccines are safe, a doctor said so on a talkshow!"
- This is an appeal to authority.
- - "Vaccines are safe, numerous peer-reviewed guidelines, consensus statements, systematic reviews and meta-analyses around the world concluded so!"
- This is showing scientific consensus, in a way analogous to the aforementioned citations.
- By the way, the reconciliation of the concepts of neurological diversity and neurodevelopmental disorder has been established for decades, such as as far back to the first International Consensus Statement on ADHD (Barkley et al., 2002).Димитрий Улянов Иванов (talk) 21:04, 13 December 2024 (UTC)
- "showed how most of them are irrelevant as they represent blog posts (not peer-reviewed; considered unreliable by Wikipedia policies), or advocacy papers, which are refuted in the scientific literature"
- this is simply completely untrue. Oolong (talk) 18:47, 14 December 2024 (UTC)
- Barkley (2002) doesn' t even mention diversity, would you like to elaborate on how it established "the reconciliation of the concepts of neurological diversity and neurodevelopmental disorder"? Oolong (talk) 18:53, 14 December 2024 (UTC)
- Димитрий Улянов Иванов, re: your claim that "I also addressed the references you [Oolong] have raised and showed how most of them are irrelevant as they represent blog posts (not peer-reviewed; considered unreliable by Wikipedia policies), or advocacy papers, which are refuted in the scientific literature, and would not overturn the consensus," would you mind linking to the comment of yours where you think you did this? Thanks. You're mistaken that all blog posts are considered unreliable. Blog posts are self-published; however, as WP:SPS notes, "Self-published expert sources may be considered reliable when produced by an established subject-matter expert, whose work in the relevant field has previously been published by reliable, independent publications." Your use of "most" indicates that you take some of the references to be relevant, and I'm curious which you put in that category. By my (admittedly incomplete) browsing, I see that some of the references, such as this one, are neither blog posts nor advocacy papers; are those among the ones you find relevant? Finally, it's not necessarily the case that advocacy papers are refuted by what you see as the scientific consensus; the issues addressed by the advocacy papers could instead be orthogonal to those addressed in what you see as scientific consensus, or it might be that they discuss consensus in the social sciences (I'm not sure whether you count social sciences as sciences and therefore relevant to the scientific consensus). FactOrOpinion (talk) 21:35, 14 December 2024 (UTC)
- I'm still relatively new to wikipedia and getting my feet, so I accidentally put some very relevant comments in what I guess is an earlier section of discussion http://en.wiki.x.io/wiki/Talk:Autism#c-%C3%93.Dubhuir.of.Vulcan-20241213211800-%D0%94%D0%B8%D0%BC%D0%B8%D1%82%D1%80%D0%B8%D0%B9_%D0%A3%D0%BB%D1%8F%D0%BD%D0%BE%D0%B2_%D0%98%D0%B2%D0%B0%D0%BD%D0%BE%D0%B2-20241202213200 (sorry about that), but there, I pointed out that the sources being appealed to by Димитрий Улянов Иванов are invariably clinical guidelines, which are either explicitly required to follow the norms of the larger clinical field outside autism, or at least under considerable pressure to do so. These clinical documents don't represent a scientific consensus and are inextricably intertwined with advocacy issues because the disorder framing is often needed to justify the provision of supports. To further emphasize this, building on my earlier arguments and sources, let me quote Catherine Lord, one of the DSM-5 working group members and the developer of the most widely used autism diagnostic instruments like ADOS: "This is not science" (https://www.youtube.com/watch?v=LX6rRWibX4E&t=142s), referring to the DSM-5 process. As Lord notes, the process is heavily affected by practical considerations and worries about harming the community by doing this or that or the other. She also calls the categories "bureaucratic decisions" (https://www.youtube.com/watch?v=LX6rRWibX4E&t=342s).
- So, essentially, although Димитрий Улянов Иванов is maintaining that the sources cited by others in this talk are "advocacy" and not "science," surely given these considerations the same "advocacy" appellation can also be applied to Димитрий Улянов Иванов's currently preferred clinical guideline sources as well.
- Now Lord does call autism a disorder (but this is a committee chosen to operate within this clinical framework and not necessarily representative of the field, and even then, her fellow committee member Happe's more neuro-affirming stance has already been cited by others on this talk page, and if you'll forgive a blatant self-citation I also co-authored a neurodiversity-aligned paper with another committee member Sally Rogers (https://doi.org/10.1159/000526416)). But of course dwelling on specific individuals doesn't give us a good sense of the dynamics of the field as a whole. Regarding the field as a whole, I also in my earlier comments pointed to a systematic review of language use in the entire autism peer-reviewed literature in 2018-2021 - a total of 2322 articles. So this is capturing the field as a whole in a way that none of the other specific sources being cited here can. It says the breakdown was 70% traditional medical, 30% neuro-affirming (https://doi.org/10.1089/aut.2023.0030). Also I noted the article found neuro-affirming language usage was increasing over time, so likely higher by now. So I called this pretty clear evidence of an unsettled and changing field, not of a stable and unambiguous pro-medical consensus.
- So it's disappointing here certainly to see that the discussion has not changed at all since my comments, and that claims are still being made of a stable pro-medical consensus, without any additional justification. If those making these pro-medical consensus claims cannot provide clearer evidence from non-advocacy sources, surely this means that the autism page does indeed need to be modified to present these viewpoints as two conflicting perspectives, rather than presenting one of these perspectives as fact? Ó.Dubhuir.of.Vulcan (talk) 23:13, 14 December 2024 (UTC)
- Ó.Dubhuir.of.Vulcan, thanks for pointing me to your earlier comments and for your addition here. I came to this talk page in response to this Teahouse thread. I had recently read an article in a different field — part of the abstract is "I show that long-time Wikipedia editors follow the settler colonial logic of elimination to omit Native histories from Wikipedia’s American history pages; block Native and allied editors from adding scholarship that centers Native experience; and ban Native and allied editors from the website so that settlers can lay claim to digital space" (an article with some flaws, but that I nonetheless appreciate) — and the Teahouse thread about this Autism article made me wonder if something analogous was happening here. I have zero expertise in the field of autism; still, I'm hoping that I can be helpful in small ways here. Re: your question, which resonates for me, you'll find some discussion of the last thread on this page.
- BTW, given that you said that you're a new editor: Welcome! The Teahouse is a good place to ask WP questions. I not new, but I'm also not extremely experienced, and sometimes I browse Teahouse discussions to learn from answers to questions that others ask, and for the limited occasions when I know enough to help out myself. You might also be interested in WikiProject Autism. It says that it may be inactive, but I see recent discussion on the talk page, and you can add yourself to the members list if you want. FactOrOpinion (talk) 00:33, 15 December 2024 (UTC)
- Thanks for your contributions! Yes, the parallels between the silencing of autistic people and other marginalised groups have been well documented; based on your comments here, you might appreciate my recent (long) essay on epistemic injustice and autism on Wikipedia.
- (apologies if this looks like self-promotion, but I wrote the essay to help people to understand the issues on Wikipedia around this topic, and their parallels and implications in wider society...) Oolong (talk) 08:18, 15 December 2024 (UTC)
- Thanks for the warm welcome and the helpful advice! Just added myself to the project - I'm not sure how much time I'll have for editing but I'll do what I can, and I could probably dig up references on request if that's helpful to you or others.
- And yeah, there's definitely some folks who see parallels (as well as intersections) between the autistic experience and indigenous experiences. There's an article that actually spends a few pages discussing similarities in how autistic and indigenous people were portrayed as primitive/pathological/other/etc. by some scholars (https://doi.org/10.1089/aut.2021.0075) So yeah, who owns the legitimate knowledge definitely contentious in both cases. Ó.Dubhuir.of.Vulcan (talk) 10:25, 15 December 2024 (UTC)
- @Димитрий Улянов Иванов @FactOrOpinion @Oolong @Ó.Dubhuir.of.Vulcan @RIT RAJARSHI I came through the following paragraph:
- "Lastly, I'd like to voice my disagreement on the idea that viewing conditions, like ASD or ADHD, as disorders is unanimously harmful to people with lived experience. Many, in fact, do not feel that this sufficiently or accurately represents their needs. They feel excluded by much of its rhetoric. They don't accept how it frames mental disorders as being the same kind of harmless or positive diversity as race, sex or gender. Race, sex and gender are not disabling or impairing, while mentla disorders often inherently are. All are equally deserving of rights, but they find the way that the politicisation of neurodevelopmental disorders, often from self-diagnosed or unimpaired advocates, erases the experiences of people who are impaired directly by their symptoms, harmful. There is a widespread sentiment in the movement that any treatment is tantamount to abuse, overlapping fully with the anti-psychiatry movement. As people who greatly benefit from treatment such as therapy or medication, they find this absolutely despicable and unacceptable."
- I have seldom read so much disrespectful stuff ever in life. It is not that the autistics capable of reading or writing are "unimpaired". The point is it is the SAME symptom that can be described as a biological impairment or a socio-cultural mismatch. How hard you try, "AUTISM" defined as a "Social disability and Communication disorder"; will ALLWAYS ALLWAYS involve at least 2 persons involved in that communication.
- There are moderate or severe disabled autistic people who are learning to appreciate oneself, trying to shed off choking grip of continuous pathologisation, where as there are mild Autistics who are continuously dismissed about vast array of impairments. Sometimes this dismissal extend to severe and visibly intellectually disabled people. I am witness of such incidences in big hospitals. It is common for the clinicians to keep the patient in loop of irrelevant differential diagnoses like Schizophrenia, manic depression, OCD, hypochondriasis, paranoid-delusion, hysteria, or probably the entire DSM. In my country or culture, sensory meltdown is almost invariably diagnosed as manic episode of bipolar. Many many autistic people face problem in society, school, as well as the clinical system.
- @Димитрий Улянов Иванов You need to understand that some people fall through the crack because the system, society, research, or policies know it wrongly. So many Autistic people have shared their views, and their life experiences, that, trying to deny that, or telling them political or unscientific, or trying to dismiss their diagnoses or impairments (Just because they do not define themselves as impaired), or changing diagnostic criteria "based on consensus" so that "fewer people can get diagnosis"... this is NOT how science works... this is how political parties work. And this is an extremely rude and disrespectful way to describe autistic people. 2409:40E0:102E:C01E:8000:0:0:0 (talk) 04:04, 17 December 2024 (UTC)
- @Димитрий Улянов Иванов How would you feel if I describe you as a person who is stubborn behavioural disorder where you do not try to understand or feel other people's pain, so you are pathologically being selfish and supremacist, that need to be extinguished using behavioral trials?
- I want you to know, that proponents of neurodiversity model are not causing the controversy. There is a genuine controversy and genuine disagreements from actual autistic and other disabled people... which resulted into a 'name' which is neurodiversity model. There are many autistics unable to access education or able to publish a research paper. Still, so many people has expressed their genuine concerns through blogs, youtube, social media discussion, peer groups, etc. that if the premium research does not mention this WIDESPREAD disagreement, then it is a serious failure within research. 2409:40E0:102E:C01E:8000:0:0:0 (talk) 04:30, 17 December 2024 (UTC)
- as an autistic person with bad enough mental health as it is, it greatly degrades my mental stability when a major part of my identity is classified on the same level as a disease Autistic scorpio (talk) 00:00, 3 January 2025 (UTC)
- @Autistic scorpio Literally the same reason the main article, the debates, and the disputes driving me away from the article. Because neurotypes aren't negotiable by debates. They are very much part of deep perceptual experience. I can assume a LOT of Autistic editors faced similar kind of stress that drove them away.
- I am consistently seeing the editors using the "Normal" vs "Pathology" dichotomy. Like if something isn't pathological then it is normal, or if something is not normal then it is pathological. They seem to miss the basic nature of the problem. Which occurs in a third dimension.
- If you ask me, "do you face impairments": The answer is YES. Starting from Executive function, meltdowns, and many other things. I feel stressed out and can't effectively function for many (often MOST) days of the years, but also I do hyperfocus on certain topics when I can.
- But if you ask me: "Do you benefit from treatment such as social skills lesson, behavioural therapy, ABC model or antipsychotic medications"? NO, they worsen my wellbeing. They make me look like more regulated or sociable, but deep inside they worsen. They also take away my sense of boundary and autonomy.
- If I am asked, "Then what can help you?" If I am allowed the way I cope up or learn or focus or play. Even if they look odd/ childish/ intolerable. And also Only reasonable accommodation, such as flexible work hours, written instructions, communicating changes and meetups earlier, making the banking system or form fill-up simpler, etc.
- "Will reasonable accommodation remove 100% of your problems?" No, but it will minimize the survival mode.
- "If direct treatment of Autism spectrum does not help you, then why you need counselling/ psychotherapy?" Because of the traumatic and stressful situations that arise from daily living or interaction with typical world.
- There are stress, there are intolerable amount of stress, but pathology paradigm isn't going to solve it. Because pathology paradigm would say to "extinguish the disorder". But the solution is NOT there. And I am showing alignment with social model that does NOT mean that I am telling Autistic people are just "normal" or "doesn't face serious problem".
- This is a paradoxical situation, misunderstood GLOBALLY.
- Although I could not take part in the DRN, I want our moderator(s) such as @Robert McClenon to kindly understand the paradoxical nature of this problem.
- RIT RAJARSHI (talk) 09:26, 3 January 2025 (UTC)
- User:RIT RAJARSHI - I have read your statement, and it is consistent with the conclusion that the focus of the article needs to be revised. It is also informative and useful. As the moderator, I can only consider what is said in DRN. You may make a statement in DRN without being expected to continue to respond to my questions, and I encourage you to make a statement that the other participants can read. You will not be required to respond to my questions or to the other participants. Robert McClenon (talk) 16:30, 3 January 2025 (UTC)
- Respected @Robert McClenon , Thank you for providing assurance that I have not to further interact or reply if I participate in DRN. Thank you for assuring my feedback was constructive or informative. But I plea for 72 to 96 hours before I post my feedback to DRN. I need mental preparation as well to look up some data. Note that the feedback can be incredibly stressful as there might be negotiations, there would be disclosure or discourse of deeply personal and vulnerable experience. I hope one thing all editors would agree... which is benifit of Actual Autistic people. For that we have to listen to actual Autistic people. Raising the diagnostic "bar" or prunning out voices of relatively "high functional" or "relatively capable" folks and continuing bad practices on relatively "low functional folks" is not going to help the situation. I would post a reply on a separate section (I could not read DRN rules, did not understood zeroth statements or n-th statements) please feel free to cut paste my whole section to appropriate one. I also want all the editors including supporting or opposing editors that it would be highly painful for me but due to weight of the situation I would take the pen (keyboard). I do think that inclusion of neurodiversity and social model viewpoints will NOT confuse but actually help out actual Autistic families and individuals to make better decision. Neurodiversity doesn't exclude "severely impaired" Autists, and it strongly advocates communication science (instead of a superficial behaviour approach) as a better route to guidance.
- Regards. Many thanks in advance. This is not an "argument" this is a "plea". RIT RAJARSHI (talk) 03:08, 5 January 2025 (UTC)
- User:RIT RAJARSHI - I have read your statement, and it is consistent with the conclusion that the focus of the article needs to be revised. It is also informative and useful. As the moderator, I can only consider what is said in DRN. You may make a statement in DRN without being expected to continue to respond to my questions, and I encourage you to make a statement that the other participants can read. You will not be required to respond to my questions or to the other participants. Robert McClenon (talk) 16:30, 3 January 2025 (UTC)
I think multiple miscommunication from various side (including me) and quit the topic . I apologise for any miscommunication
[edit]I think multiple miscommunication from various side (including me) and quit the topic. I ask for forgiveness regarding my lack of response inhibition. I was triggered and went impulsive. I didn't mean to hurt anybody RIT RAJARSHI (talk) 15:36, 13 December 2024 (UTC)
- RIT RAJARSHI, I came to take a look after seeing your Teahouse comment. I've only skimmed this Talk page, but I don't see any comments from you hurting anyone. That said, whether you choose to stay is up to you. If you choose to reengage, my suggestion is that you (and others who think that the article is unbalanced) start by gathering reliable sources from non-medical sources, both social science research (e.g., in fields like anthropology and sociology) and relevant non-research (e.g., personal commentary). For example, I just did a quick search, and this [1] book might be a good source, as might this book chapter (though I haven't read either and can't be sure). Temple Grandin's writings also come to mind. Put differently, it's not sufficient to want your perspective better represented in the article; you need reliable sources that support a more balanced article. I don't have time to look for more sources right now, and I don't have any expertise in this field, but I'll look for some other possible sources later. FactOrOpinion (talk) 18:31, 13 December 2024 (UTC)
- RIT RAJARSHI, I want to apologize, as I fear that my previous response came across as condescending, when my intent was to be helpful. I see that a number of RSs have already been introduced into the discussion that are consistent with your perspective, and I probably shouldn't have said anything without first reading more of the exchanges. FactOrOpinion (talk) 19:31, 14 December 2024 (UTC)
- @FactOrOpinion NO ISSUES, MISTAKES AND OVERLOOKS HAPPEN.
- I AM SORRY IN CASE YOU FELT STRESSED OR MISINTERPRATED
- RIT RAJARSHI (talk) 15:48, 9 January 2025 (UTC)
- RIT RAJARSHI, there is no need to apologize, though I appreciate your concern. Glad that we're both OK with the exchange. FactOrOpinion (talk) 17:44, 9 January 2025 (UTC)
- RIT RAJARSHI, I want to apologize, as I fear that my previous response came across as condescending, when my intent was to be helpful. I see that a number of RSs have already been introduced into the discussion that are consistent with your perspective, and I probably shouldn't have said anything without first reading more of the exchanges. FactOrOpinion (talk) 19:31, 14 December 2024 (UTC)
- I also don’t believe you’ve written anything harmful at all. This seems to be more of a miscommunication. I found your initial reply to me thoughtful and informative, even though I disagree with certain aspects. After re-reading the dialogue I realise my response came across more accusatory than I intended, and for that, I apologise. My tone was shaped by the frustration of repeatedly having to address others misrepresenting or ignoring key points.Димитрий Улянов Иванов (talk) 20:31, 13 December 2024 (UTC)
- Hello @Димитрий Улянов Иванов , thanks for your response, and although I decided to quit this matter for now, I decided to clear up few miscommunication in response.
- In "strict sense", the "scientific" community (Genetics, molecular biology, biochemistry etc. that works on externally observed and falsifiable data, often from a reductionist approach) usually do present the view you hold. But in the "academic community" which is not necessarily "scientific" per se... that work with Qualia, lived experience , and other subjective aspects of philosophy and humanities; that including social science or social studies, philosophy, ethics, medical ethics, some specializations within psychology, etc. some serious disagreements indeed exists. I wish I could share my reference list, but forgive, I am too exhausted and burnout.
- Personally, it seems to me, that the "Global, unanimous scientific consensus", serves as a self fulfilling prophecy, and like the "growing cycle of inaccessibility". Since anything that doesn't go with the views of "Global, unanimous scientific consensus", may be perceived as fringe or too subjective, and therefore may face a negative bias in the peer review. I am aware that anecdotal evidence is not usually acceptable, but I know incidences where correspondence about criticisms of suggestion on ABA methods were not published, or rejected upon peer review process. It is difficult to prove since all private communications between all the journals and their authors are not accessible.
- Regarding politicization of our bodies and minds (1) : Who gets to speak and who gets to decide. The ultimate goal is wellbeing and flourishment of Autistic population. If your viewpoint is more beneficial for Autistics then I am ready to get defeated. But there is problem regarding how we "define" what is a good life, and who gets to define that. Regarding Nothing about us without us, a person need to be Identified as Autistic first to have the voice. But the article says "Before the DSM-5 (2013) and ICD-11 (2022) diagnostic manuals were adopted, ASD was found under the diagnostic category pervasive developmental disorder. The previous system relied on a set of closely related and overlapping diagnoses such as Asperger syndrome and the syndrome formerly known as Kanner syndrome. This created unclear boundaries between the terms, so for the DSM-5 and ICD-11, a spectrum approach was taken. The new system is also more restrictive, meaning fewer people qualify for diagnosis." Now it needs to be clarified who would 'qualify' for being identified as Autistic. If possible, Provide specific examples. Would Dr. Temple Grandin retain her diagnosis? Would Jaquiline Den Houting retain her Autistic status? Would Greta Thunberg retain her Autistic status in new system? What would be the status for Black, South-Asian etc. population where there is too little awareness on so called 'Asperger' or so called 'high functioning Autism'? If they do not 'Qualify'; then how the people of their profile can be accommodated? It still looks like the "cut off point" is fluctuating, and probably the cut off point has no real existence. There will exist people with less typical symptoms but continue to mismatch/ suffer daily survival. What would be their diagnoses? Where would their voice go? There are people who are more severely impaired in medical model standards, but continued to tell about "disablement by society" than "being impaired by own bodies", Stella Young for example. Would you still think they do not deserve diagnosis/ support/ care/ voice/ representation (any) because they claim to be not impaired by their bodies?
- Regarding politicization of our bodies and minds (2) : Although there are some little academic literature regarding harmful aspect of ABA therapy or its derivatives; there are plenty of lived experiences expressed in form of blogs, art, interviews, etc. Neuroclastic and ASAN has several articles on that. Chemical restraint , including misuse or overuse of antipsychotics has been another concern in concerned communities. The problem of disqualifying more "high functional" people is that, the more "low functional people" cannot often express their opinion in conventional neurotypical standard language. Hari Srinivasan, a mostly nonspeaking Autistic, with a lot of co-occurring impairment and dynamic disabilities, clinically diagnosed as severe or low functioning; who was a faculty at Barkeley and currently at a PhD programme in Vanderbilt University, wrote in an opinion in Times magazine that "I was diagnosed with autism and ADHD at age 3, and for the amount of “evidence-based therapy for autism” that has consumed my entire childhood, I should have been able to navigate it many times over by now. Why was I not benefiting from the vast amount of research that is being done in the name of understanding autism better? After all, autism has been an official diagnosis since 1980". He also expressed that "Of course, as a child you don’t have the power to challenge the “expert,” and you are left with a feeling of cognitive dissonance and mismatch that this is not quite right. ". and that "Yet, willy-nilly, existing autism research findings, and the resultant therapies and educational strategies, have been applied across the board to all autistics. Unfortunately, a lack of success in therapies not suited for you in the first place, leads to negative downstream impacts such as being placed in low expectations classrooms, the closure of opportunities, and less than positive lifetime outcomes. I find that despite all the careers, promotions, and profits being made by thousands of autism-experts, the state of autism interventions right now is one hot mess. In reality, there still are no real “experts” in autism because there is no one-size fits all model." Note that "wellbeing" in neurotypical standard, and actual wellbeing in Autistic population may look different. But if we keep enforcing the "Global, unanimous scientific consensus" to people who cannot speak, and we systematically exclude people who can speak about the harm, we keep the injustice unnoticed and continued.
- I hope these issues to be addressed in Wikipedia's subject matter academically. I did not mean to personally criticize anybody. RIT RAJARSHI (talk) 06:11, 14 December 2024 (UTC)
- @Димитрий Улянов Иванов These are all what I wanted to convey academically, with respect. RIT RAJARSHI (talk) 06:16, 14 December 2024 (UTC)
- @FactOrOpinion @Oolong all other editors you may include or mention these arguments in the dispute resolution procedure. Is there a way to keep it anonymous? or just refer me as a random visitor? RIT RAJARSHI (talk) 20:56, 20 December 2024 (UTC)
- You are not required to participate in dispute resolution procedures, if you don't want to. WhatamIdoing (talk) 00:50, 21 December 2024 (UTC)
- I would imagine that any volunteer mediators will look at whatever has been posted here, not exclusively named parties. There is no call for you to be formally involved. Oolong (talk) 11:02, 21 December 2024 (UTC)
- Hello @Димитрий Улянов Иванов , thanks for your response, and although I decided to quit this matter for now, I decided to clear up few miscommunication in response.
Topic missing or not elaborate enough
[edit]While talking about Autism, following things should be elaborated much more:
- 1. Meltdown
- 2. Shutdown
- 3. Burnout (More coverage needed)
- 4. Stimming
- 5. Punding
- 6. Hyper-empathy/ Empathy overload
- 7. Twice-Exceptional Children
- 8. Uneven cognitive profile (With diagram)
- 9. Monotropism
- 10. Theory of Mind and Double Empathy Problem (With diagram)
- 11. Autism and Working memory.
- 12. Autism and Semantic memory.
- 13. Autism and Episodic Memory
- 14. Autism and spatial intelligence.
- 15. Autism and Justice sensitivity.
- 16. Autism and Metacommunication.
- 17. AAC methods and AAC devices.
- 18. AAC letterboard
- 19. AAC apps
- 20. Colourful semantics (Trademark) and colour coded parts of speech
- 21. Autism and "strength based approach"
- 22. Autism and Routine/ Predictability
- 23. Autism and imagination/ imaginative thinking
- 24. Autism and Creativity.
2409:40E0:102E:C01E:8000:0:0:0 (talk) 20:15, 16 December 2024 (UTC)
- Thanks for this.
- I'm going to reproduce the text of my earlier 'Glaring Omissions' post here, which was derailed and eventually archived, for reference. --Oolong (talk) 15:07, 7 January 2025 (UTC)
One of the reasons I've highlighted the excessive length of this article is because, despite being around a third longer than it probably should be, it completely misses out several things that are absolutely key for anyone to understand who is interested in learning about autistic people.
We can discuss how best to cover these, but for starters, I just wanted to make a quick list. Most of these are things which anyone who's conversed with multiple autistic people should very much expect to see covered.
- Autistic meltdowns (not sure how these aren't even mentioned in passing here when they have their own entry)
- Sensory overload
- Shutdowns
- Executive dysfunction and/or autistic inertia
- Hypermobility and EDS (co-occurring; actually, the whole section about co-occurring conditions is overdue a radical overhaul)
There are also topics like Autistic burnout and augmentative and alternative modes of communication (AAC) which clearly deserve more than a passing mention. I'm sure there are others I'm forgetting right now!
We might want to refer, here, to some other guides to autism written for the general public. We should certainly be looking outside of the scientific literature as such to help assess what autistic people, family members and relevant professionals see as important, and bear that in mind when prioritising things for inclusion: I would suggest that a decent place to start would be studies looking at community priorities for research, e.g. [1][2][3][4][5][6][7]; I also support the NIH's recommendation to "Check a variety of sources, including self-advocacy groups and organizations led by the communities you are writing about, to see what language they use and why."
- ^ Cage, Eilidh; Crompton, Catherine J; Dantas, Sarah; Strachan, Khiah; Birch, Rachel; Robinson, Mark; Morgan-Appel, Stasa; MacKenzie-Nash, Charlie; Gallagher, Aaron; Botha, Monique (September 2024). "What are the autism research priorities of autistic adults in Scotland?". Autism. 28 (9): 2179–2190. doi:10.1177/13623613231222656. ISSN 1362-3613. PMC 11401337. PMID 38311602.
- ^ "Do autism researchers focus on things that autistic people want them to?". BPS. Retrieved 22 November 2024.
- ^ Roche, Laura; Adams, Dawn; Clark, Megan (February 2021). "Research priorities of the autism community: A systematic review of key stakeholder perspectives". Autism. 25 (2): 336–348. doi:10.1177/1362361320967790. ISSN 1362-3613.
- ^ Pellicano, Elizabeth; Dinsmore, Adam; Charman, Tony (October 2014). "What should autism research focus upon? Community views and priorities from the United Kingdom". Autism. 18 (7): 756–770. doi:10.1177/1362361314529627. ISSN 1362-3613. PMC 4230972. PMID 24789871.
- ^ Pearson, Amy; Surtees, Andrew; Crompton, Catherine J.; Goodall, Craig; Pillai, Dhanya; Sedgewick, Felicity; Au-Yeung, Sheena K. (27 September 2022). "Editorial: Addressing community priorities in autism research". Frontiers in Psychology. 13. doi:10.3389/fpsyg.2022.1040446. ISSN 1664-1078.
- ^ "Your priorities for autism research". Autistica. 11 September 2017. Retrieved 22 November 2024.
- ^ Pukki, Heta; Bettin, Jorn; Outlaw, Avery Grey; Hennessy, Joshua; Brook, Kabie; Dekker, Martijn; Doherty, Mary; Shaw, Sebastian C.K.; Bervoets, Jo; Rudolph, Silke; Corneloup, Thibault; Derwent, Kylieanne; Lee, Onemoo; Rojas, Yadira Garcia; Lawson, Wenn (1 June 2022). "Autistic Perspectives on the Future of Clinical Autism Research". Autism in Adulthood. 4 (2): 93–101. doi:10.1089/aut.2022.0017. ISSN 2573-9581. PMC 9242721. PMID 36601072.
Oolong (talk) originally posted 17:38, 4 December 2024 (UTC)
Autism and disability
[edit]This is a huge, interesting and important topic that ought to be covered with a bit of nuance in the article, but I'm posting here because I've been trying to edit what the lead says about it to make sense, and reflect what it claims to be reflecting.
Here's the current version:
"Public health authorities classify autism as a neurodevelopmental disorder, but the autism rights movement (and some researchers) disagree with the classification. From their point of view, autistic people may be diagnosed with a disability of some sort, but that disability may be rooted in the systemic structures of a society rather than in the person."
I'll be honest, I have no idea what "autistic people may be diagnosed with a disability of some sort" is supposed to mean. Does it mean another disability, or is it referring to autism? A disability "of some sort"? Which sort? This reads like a kind of garbled, Telephone Game attempt to summarise the social model of disability, as it manifests in the context of neurodiversity. Nobody is saying that disability is rooted in systemic structures rather than the person - how would that even work?
So I edited the second sentence to read:
"This perspective does not imply that autistic people are not disabled, but that disability is rooted not just in the person, but also in the systemic structures of a society."
This could probably be phrased slightly better, but it is, I think, an entirely accurate summary of the most prevalent view of disability within the autism rights movement, as exemplified by the source cited:
"Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly."
There is much more about what relevant people actually think about autism and disability in this excellent paper, for anyone interested.
I thought I'd better bring this here rather than edit warring. @Димитрий Улянов Иванов has twice reverted these edits, claiming that "sources are represented accurately this way"; @GigaMegaDigaChad reverted it, bizarrely claiming it looks like an "attempt to twist the narrative so as to push a certain POV"; @Urselius restored my edit, stating "Wording now ableist and 'othering' of autistic people", and Dmitriy (to use a Roman script transcription of his name) reverted it yet again.
I would like the lead to be accurate, balanced and easy to understand, which is why I made this edit. If anyone has a coherent explanation for what is wrong with my version, please explain here and suggest a better alternative. Thanks.
(as a side note, I also edited the first words of the next sentence from 'On the contrary, other scientists' to 'However, some scientists' because 'other scientists' makes no sense here grammatically; the disagreement is framed as being between these scientists and 'the autism rights movement', which does include many scientists, but not in a grammatically relevant way.) Oolong (talk) 10:38, 18 December 2024 (UTC)
- I think some level of gaining a formal consensus of interested editors about contentious phrasing in the lead is becoming necessary. A single editor, correct me if I am mistaken, seems to be exerting, if not a stranglehold, at least undue influence on the wording of the lead. Urselius (talk) 10:54, 18 December 2024 (UTC)
- The recent edit @Urselius made changing it to:
- "From this point of view, autistic people may be diagnosed with a disability, but that disability may be rooted in the systemic structures of a society rather than in the person"
- Is fine, in my view, as it has redacted the "of some sort" to reduce ambiguity. Changing "their" to "this point of view..." is not a significant improvement and their justification that the use of "their" is "ableist" is ridiculous, but using "this" is also acceptable and perhaps more accurate as it may not just be that movement specifically adhering to the perspective. So while I disagree with their basis, I think we should keep it this way.
- The changes you wish to make are problematic for several reasons. @GigaMegaDigaChad made a crucial point, which you have conveniently omitted, is:
- "the citation you use, implying its valid, states autism is not a disability in itself (what is autism - argues most with ARE disabled, rather than autism itself being a disability) so it directly conflicts with what you write here"
- I don't disagree with the accuracy of "This perspective does not imply that autistic people are not disabled", but this is not an improvement as the current wording already suggests this by stating the disability may be rooted in society - not that it's nonexistent. The citation appears to espouse the narrative that the disability is itself rooted solely in society and not in ways inherent to the disorder. So they basically believe that many autistic people are disabled, but not because of their condition. This is why writing "but that disability is rooted not just in the person" seems unrepresentative of the source; from my understanding, they do not believe it's rooted in the person at all.
- "other scientists" is not grammatically inappropriate as the preceding viewpoint is also stated to be held by some researchers (which are scientists), not just the Autism Rights Movement. For consistency, we could alter the paragraph to use only either scientists or researchers rather than both, but this is just a minor semantic point.
- "On the contrary" should be kept, considering that the citations thereafter are in refutation to the perspective directly, while "however" is more ambiguous and does not imply that they are rebutting the prior viewpoint.
- Thus, I recommend the following:
- "Public health authorities classify autism as a neurodevelopmental disorder, but the autism rights movement (and some [researchers/scientists]) disagree with the classification. From [this/their] point of view, autistic people may be diagnosed with a disability, but that disability may be rooted in the systemic structures of a society rather than in the person. On the contrary, other [researchers/scientists] argue that autism impairs functioning in many ways that are inherent to the disorder itself and unrelated to society..." Димитрий Улянов Иванов (talk) 11:22, 18 December 2024 (UTC)
- The source doesn't in any way contradict what I wrote. Disability arises out of a mismatch between a person and their environment. Any reliable source on the social model of disability will make this clear, including the Nick Walker essay (which I did not add, and was not relying on). It is quite wrong, and actually very odd, to suggest that disability arises from society with no reference to the individual. Please read up carefully on the social model if you want to keep inputting on this point - it looks like you are pretty new to considering it, given your incredulity at its use of 'impairment', and it really is indispensible to understanding these discussions.
- "Other scientists" remains very poor phrasing when the main referent of the previous sentence is not scientists.
- "Diagnosed with a disability" is a very unclear statement. They are diagnosed with autism. Is autism a disability? We've looped right back to one of the things at issue here. I personally would say it's a disability in the same sense that anything is a disability, but many adherents of the social model (and/or neurodiversity) prefer to say that the idea of 'a disability' is misleading, and reserve the term 'disabled' for the outcome of the interactions between a person with an 'impairment' and a (social) environment that is insufficiently accessible (or expects unreasonable things). We can't just state that people are "diagnosed with a disability" - to the extent that it's even a meaningful statement, it is assuming a particular conclusion.
- On the whole, I also think trying to delineate who takes what positions is just confusing here. A fair summary of who takes what views is likely to take too many words for the lead. The neurodiversity perspective may have originated with groups that might be considered part of the autism rights movement, but it is far from restricted to it, as Dwyer et al (2024) among other sources make very clear. As previously discussed, substantial numbers of scientists, clinicians, charities, practitioners and family members of autistic people broadly hold views in line with the neurodiversity approach.
- Conversely, the sources for the argument 'on the contrary' are published in the Journal of Applied Philosophy and Neuroethics; one of the co-authors is a neurologist by training, but it is misleading at best to describe the authors of these views collectively as scientists. Indeed - as the journal titles suggest - this is a philosophical question, not primarily a scientific one at all, so it is no surprise that most of the authors cited are philosophers. It also has political and legal dimensions; one of these papers leans heavily on the latter. It may well be that a great many scientists hold these views, but they are not necessarily the ones arguing for them, and when they are, it is not obvious that they are doing so in their capacity as scientists. It is also clear from Dwyer et al (and, incidentally, from my own experience) that not everybody with a stake here sees neurodiversity as ruling out disability in some cases being inherent to the individual, although some version of the social model is strongly associated with neurodiversity.
- I drafted a very careful rewrite of this section last night, but I hit up against an edit conflict, and Wikipedia's 'Resolve conflicts' button instead lost my edit completely. I plan to try again today. Oolong (talk) 08:02, 24 December 2024 (UTC)
- @Димитрий Улянов Иванов, I see that you have edited the entry and reverted my edit. Does this indicate that you are opting out of the moderated discussion? Bizarrely, your reversion chided me for making an edit during active dispute resolution, although I was editing a section that you had edited less than a day previously.
- I was working on the assumption that the Dispute Resolution was not active yet, since you have not confirmed your participation. Certainly DRN Rule A doesn't seem to apply so far, which I assume is what you were trying to rely on when you claimed "Oolong shouldn’t be changing content under a DRR".
- You have once again restored a version of this paragraph which perpetuates a basic misunderstanding, on completely spurious grounds.
- I wish you wouldn't. Oolong (talk) 17:48, 26 December 2024 (UTC)
- I have confirmed my participation and have for a while since I wrote a detailed comment there as requested, thereby, at least implicitly, confirming it. That is how I assume one begins participating at least.
- The wording I and others have been restoring has essentially been the original wording way before the DRN began. You made a substantial change to the paragraph, despite initiating the DRN. So, wouldn't this suggest that you may be opting out of the moderated discussion? Because I don't think a restoration counts as exiting the moderated discussion, particularly when the guideline I read suggested that the moderate will take up how the article is currently worded to which you are disputing.
- And I addressed the many issues with this specific edit of yours in this talk page and in the summary. Димитрий Улянов Иванов (talk) 18:27, 26 December 2024 (UTC)
- @Robert McClenon asked participants to explicitly confirm their participation six days ago now.
- To my own understanding DRN Rule A is not, so far, applied, so no, obviously I was not opting out. You were apparently editing it under the belief that it did apply, so I was wondering if that was where you were going with that.
- You made a significant change to that paragraph. It was not a restoration. I had also already edited this paragraph before the dispute resolution process commenced, and explained carfeully on the Talk page with why your 'many issues with this specific edit' are ill-founded (quite apart from which, this was a different, even more carefully balanced edit).
- You have not in fact answered any of these points meaningfully. Instead you are repeatedly editing this paragraph to a version which is objectively wrong, and not supported by the citations given. Oolong (talk) 08:15, 27 December 2024 (UTC)
- I do not opine on whether "their" in "From their point of view" is "othering", but the word "this" in "from this point of view" is ambiguous. It could reasonably be interpreted as referring to either the classification of autism as a neurodevelopmental disorder or the autism rights movement's disagreement. Clearer wording would be helpful. Mitch Ames (talk) 11:30, 18 December 2024 (UTC)
- I disagree that any real degree of ambiguity exists, as reference to an immediately previous assertion is assumed in word order languages, such as English. However, would "From the latter point of view" suit? Urselius (talk) 11:42, 18 December 2024 (UTC)
- "... the latter point of view" would suffice. Mitch Ames (talk) 13:38, 18 December 2024 (UTC)
- I disagree that any real degree of ambiguity exists, as reference to an immediately previous assertion is assumed in word order languages, such as English. However, would "From the latter point of view" suit? Urselius (talk) 11:42, 18 December 2024 (UTC)
- there is no disability in the person, only in society Autistic scorpio (talk) 00:28, 3 January 2025 (UTC)
I just did a quick search on Google Scholar and found 14 academic papers prominently flagging the social model of disability with regard to autism. This is not merely the fringe interest of activists, but the subject of scholarly investigation and debate. It is an almost invariable truth that medical thought and practise lag, sometimes considerably, behind relevant scientific and scholarly research and thought. Giving current medical practice absolute priority in an encyclopaedic treatment of autism, whilst ignoring current scientific thought, is doing any interested reader a distinct disservice. Urselius (talk) 11:34, 18 December 2024 (UTC)
- Of course! It's very much a mainstream position - and even more so among practitioners in autism-related fields, and of course disability scholars, and even more so among autistic people and parents, than it is among psychologists.
- Models of disability are just not a primary concern of many scientists in general, being more philosophical and political in nature than scientific as such, but obviously they have an impact on science (and vice versa). In particular, their prominence in the thinking and discourse of all the above groups has clearly encouraged many scientists to give them more thought. Neurodiversity and the social model of disability play a significant role in the framing and targets of much modern autism research - something strongly supported the research priorities not just of autistic people, but also families and those working with autistic people. Oolong (talk) 12:51, 18 December 2024 (UTC)
- And there are 2.3 million results for autism unqualified. Information about the neurodiversity moment should probably go on the main article. It is very much a fringey position given the totality of what's been published on the subject. GMGtalk 13:25, 18 December 2024 (UTC)
- Seriously?
- Look at the top-selling autism books on Amazon. See how many of them take a neurodiversity-affirming approach. Look at what research finds about attitudes to autism, disability and neurodiversity in the broad autism community. Look at guides to autism for general readers written out updated in the last 5-10 years.
- No, it is not "a fringey position". Oolong (talk) 14:44, 18 December 2024 (UTC)
- There is no part of this where I care, or we should care collectively about what people are buying on Amazon. Neurodiversity has its own article. GMGtalk 14:56, 18 December 2024 (UTC)
- Perhaps not, but the books that take a social model of disability approach to autism written by professional academic scholars are numerous, as are the academic papers, as I pointed out earlier. Ignoring this considerable body of scholarly opinion would be the opposite of encyclopaedic. Wikipedia is supposed to be an encyclopaedia, not some sort of mirror for diagnostic manuals and nothing else. Urselius (talk) 15:25, 18 December 2024 (UTC)
- For subjects related to health and medicine, specifically no. Wikipedia follows the widely accepted mainstream view. GMGtalk 15:57, 18 December 2024 (UTC)
- Old age is related to health. Sex and gender are both, separately, related to health. Race is related to health.
- All of these, and autism, have many facets that are not about health - indeed, a strong argument can be made that most of what anybody is likely to want to know is not health information.
- We defer to mainstream scientific and medical sources on questions about which they have authoritative things to say - things based on scientific evidence, particularly where meta-analyses and other high-quality secondary sources are available which back up specific points.
- For other sub-topics, we should certainly avoid making statements that are contradicted by scientific evidence, but that categorically does not mean that we can't write about things based on other sorts of evidence. Wikipedia is not a medical or scientific encyclopaedia, and autism is not an exclusively medical topic.
- And again, no, neurodiversity is not remotely fringey among mainstream autism and researchers, or neurodevelopmental psychologists more broadly. In 2023, Wiley announced a “multi-journal special issue” on neurodiversity across 38 journals, while Sage launched a scientific journal called Neurodiversity. Autism charities and government bodies are increasingly highlighting neurodiversity. Academic works published on it include The Neurodiversity Reader, Autistic Community and the Neurodiversity Movement, and Critical Neurodiversity Studies, among others. Various pieces in mainstream peer reviewed publications have argued the case for it.[2] [3][4][5] Several of the most influential autism researcher in the world have acknowledged the case for it.[6][7] Oolong (talk) 10:40, 19 December 2024 (UTC)
- Just to add to this: it appears that the only existing handbooks for assessing adults for autism (written by scientists, clinicians and practitioners with a research background) are both written from a neurodiversity-affirming perspective: Is This Autism?, published by Routledge, and The Adult Autism Assessment Handbook, published by JKP.
- Just to get most of the main references in one place, I should also add the systematic review Bottini et al (2024), which found that around 30% of the 2,322 articles they looked at used what the researchers considered neuro-affirming language. Oolong (talk) 10:59, 21 December 2024 (UTC)
- Again, the scientific consensus attesting otherwise is global and goes far beyond mere diagnostic criteria. Nor is Neurodiversity as a concept incompatible with the consensus that autism represents a disorder where such diversity reaches a degree to cause significant impairment. Димитрий Улянов Иванов (talk) 17:28, 18 December 2024 (UTC)
- Please explain to me, an autistic former research scientist, called an expert in my field in print, with publications cited in other scientific publications over 1,300 times, member of the Royal Society of Biology, fellow of the Linnean Society of London (as was Charles Darwin), married with two children, house owner, with a tidy sum in the bank and investments, am 'significantly impaired'. Autism causes me problems, that I generally overcome, but, compared to the average neurotypical person, I am not impaired in any measurable way and have achieved more in life than most. Urselius (talk) 20:36, 18 December 2024 (UTC)
- As as a fellow researcher, as I'm sure you know, personal anecdotes are not considered scientific evidence that overturn results of controlled studies. Димитрий Улянов Иванов (talk) 20:38, 18 December 2024 (UTC)
- That is not an explanation, scientific or otherwise. I was not seeking to comment on 'scientific evidence', I was just making a personal observation posed as a question. You have zero empathy for the effect of your overly negative wording in the article has on any autistic people that may read it. Lack of empathy is something we are supposed, incorrectly, to exhibit. Urselius (talk) 20:46, 18 December 2024 (UTC)
- I understand your concern, Urselius, but it's a spectrum disorder for a reason. Not all affected are as impaired as others, so if one generalises their personal experience to others who are significantly impaired by their symptoms, it would not be evidence against the disorder. Similarly, if someone generalised their impairing symptoms to people whose symptoms are not impairing, it would be problematic. I'm not trying to being unsympathetic, just reflecting the scientific evidence on the matter. I also hope you understand that contrary to your opinion, many, many other people diagnosed with autism despise the neurodiversity movement for trivialising and erasing their experiences. For example, see for a discussion: https://www.reddit.com/r/autism/comments/15h1p6n/autism_is_a_disability_to_say_otherwise_is_harmful/ Димитрий Улянов Иванов (talk) 20:56, 18 December 2024 (UTC)
- Advocates of neurodiversity overwhelmingly agree that autistic people are generally disabled, as references previously posted show clearly. The Reddit post you have linked both literally and figuratively says nothing about the neurodiversity movement.
- It is an odd thing to cite in this context. Oolong (talk) 11:02, 20 December 2024 (UTC)
- I understand your concern, Urselius, but it's a spectrum disorder for a reason. Not all affected are as impaired as others, so if one generalises their personal experience to others who are significantly impaired by their symptoms, it would not be evidence against the disorder. Similarly, if someone generalised their impairing symptoms to people whose symptoms are not impairing, it would be problematic. I'm not trying to being unsympathetic, just reflecting the scientific evidence on the matter. I also hope you understand that contrary to your opinion, many, many other people diagnosed with autism despise the neurodiversity movement for trivialising and erasing their experiences. For example, see for a discussion: https://www.reddit.com/r/autism/comments/15h1p6n/autism_is_a_disability_to_say_otherwise_is_harmful/ Димитрий Улянов Иванов (talk) 20:56, 18 December 2024 (UTC)
- That is not an explanation, scientific or otherwise. I was not seeking to comment on 'scientific evidence', I was just making a personal observation posed as a question. You have zero empathy for the effect of your overly negative wording in the article has on any autistic people that may read it. Lack of empathy is something we are supposed, incorrectly, to exhibit. Urselius (talk) 20:46, 18 December 2024 (UTC)
- As as a fellow researcher, as I'm sure you know, personal anecdotes are not considered scientific evidence that overturn results of controlled studies. Димитрий Улянов Иванов (talk) 20:38, 18 December 2024 (UTC)
- Please explain to me, an autistic former research scientist, called an expert in my field in print, with publications cited in other scientific publications over 1,300 times, member of the Royal Society of Biology, fellow of the Linnean Society of London (as was Charles Darwin), married with two children, house owner, with a tidy sum in the bank and investments, am 'significantly impaired'. Autism causes me problems, that I generally overcome, but, compared to the average neurotypical person, I am not impaired in any measurable way and have achieved more in life than most. Urselius (talk) 20:36, 18 December 2024 (UTC)
- Well what I saw was people reverting over an author whose qualifications seem to consist mostly of writing a web comic, operating a self-publishing platform, and teaching at a place that wants people to trip shrooms as therapy, out of their "campus" that is just a storefront. You're probably going to have to do better than that if you want to make grand claims about scientific consensus, because these looks like new age whackjobs. GMGtalk 17:54, 18 December 2024 (UTC)
- I agree with you; I was replying to Urselius. I meant that there is a scientific consensus that autism is a neurodevelopmental disorder, and you are correct to point out the citation for the neurodiversity movement perspective was problematic Димитрий Улянов Иванов (talk) 19:18, 18 December 2024 (UTC)
- I am a scientist, my peer-reviewed publications have over 1,300 citations. I understand how professional science works. Science is not monolithic and publications that are 10 years old or older may not reflect current views, though they will form part of a consensus if they are included without any weighting towards more recent publications. For example,there is a very definite and ongoing trend in recent publications and in clinical usage to move from 'disorder' to 'condition'. If you use publications from around 1990, then the consensus was that around 75% of autistics have lower than average intelligence, now it is more like 30%. If your monolithic overall consensus includes the older figure it will be plain wrong for the present. Urselius (talk) 20:19, 18 December 2024 (UTC)
- This is absolutely false. Around the world, the developers of scientifically-based guidelines, standardised diagnostic criteria, consensus statements, systematic reviews, meta-analyses etc. unanimously conclude that autism is a neurodevelopmental disorder, the references of which are the most up to date with respect to the e.g. guidelines and often from recent years (see Talk:Autism#c-Димитрий Улянов Иванов-20241126131200-Oolong-20241126104700). But you repeatedly leave all of this out as it would eviscerate your intentions. Димитрий Улянов Иванов (talk) 20:24, 18 December 2024 (UTC)
- You have exerted a stultifying stranglehold on this article, supported by very selective views on what constitutes medical and scientific consensus. This has to end. Urselius (talk) 20:40, 18 December 2024 (UTC)
- This is ludicrous. What, specifically, are you claiming is false in Urselius's post? Because I can't see a single thing that is even questionable. Oolong (talk) 11:04, 20 December 2024 (UTC)
- This is absolutely false. Around the world, the developers of scientifically-based guidelines, standardised diagnostic criteria, consensus statements, systematic reviews, meta-analyses etc. unanimously conclude that autism is a neurodevelopmental disorder, the references of which are the most up to date with respect to the e.g. guidelines and often from recent years (see Talk:Autism#c-Димитрий Улянов Иванов-20241126131200-Oolong-20241126104700). But you repeatedly leave all of this out as it would eviscerate your intentions. Димитрий Улянов Иванов (talk) 20:24, 18 December 2024 (UTC)
- For subjects related to health and medicine, specifically no. Wikipedia follows the widely accepted mainstream view. GMGtalk 15:57, 18 December 2024 (UTC)
- Perhaps not, but the books that take a social model of disability approach to autism written by professional academic scholars are numerous, as are the academic papers, as I pointed out earlier. Ignoring this considerable body of scholarly opinion would be the opposite of encyclopaedic. Wikipedia is supposed to be an encyclopaedia, not some sort of mirror for diagnostic manuals and nothing else. Urselius (talk) 15:25, 18 December 2024 (UTC)
- There is no part of this where I care, or we should care collectively about what people are buying on Amazon. Neurodiversity has its own article. GMGtalk 14:56, 18 December 2024 (UTC)
- No, it's not a "fringey" position. For example, when I did a Google Scholar search on ("autism" "neurodevelopmental disorder") and ("autism" "neurodiversity"), the respective number of results was 63K and 23.9K (of which the intersection accounts for ~2K), an imperfect gauge, but one that still provides info relevant to the lack of "fringey-ness." I'm also puzzled by your comment that "There is no part of this where ... we should care collectively about what people are buying on Amazon." WP:NPOV "means representing fairly, proportionately, and, as far as possible, without editorial bias, all the significant views that have been published by reliable sources on a topic." I'd say that widely read books about Autism give us useful information about which views are significant, though they don't tell us which are RSs. FactOrOpinion (talk) 17:53, 18 December 2024 (UTC)
- Amazon search results mean exactly nothing. There's not much further debate to be had there. GMGtalk 17:59, 18 December 2024 (UTC)
- They mean nothing to you. Whether they're meaningful to other editors is up to those other editors. How do you assess what non-research views are significant? FactOrOpinion (talk) 18:14, 18 December 2024 (UTC)
- Not Amazon search results? GMGtalk 18:27, 18 December 2024 (UTC)
- Yes. How do you assess which non-research views are significant when it comes to "representing fairly, proportionately, and, as far as possible, without editorial bias, all the significant views"? FactOrOpinion (talk) 18:58, 18 December 2024 (UTC)
- For medical or health topics, we would generally look for meta-analysis, textbooks, or professional guidance from recognized institutions. These subjects have among the highest burden of proof as readers may make health related decisions based on Wikipedia, and so providing flawed information could be actively harmful. GMGtalk 19:54, 18 December 2024 (UTC)
- But medical and health info is not the only info relevant to the Autism article. So I'll try to make my question clearer: for info in the Autism article that doesn't fall under MEDRS, how do you assess which non-research views are significant when it comes to "representing fairly, proportionately, and, as far as possible, without editorial bias, all the significant views"? FactOrOpinion (talk) 20:34, 18 December 2024 (UTC)
- Certainly not some rando's self published book. GMGtalk 21:14, 18 December 2024 (UTC)
- I didn't ask you what you wouldn't accept. I asked you how you do assess which non-research views are significant. Surely you understand the difference. I'm still hoping that you'll answer my actual question. FactOrOpinion (talk) 21:23, 18 December 2024 (UTC)
- Critical thinking and context? There isn't like a checklist where if you tick seven out of ten boxes then you count. Even the same source may be both reliable and unreliable depending on the usage. Green Eggs and Ham is perfectly fine for the article on the book. It's not very useful for the main article on Ham. If you're looking for hard-fast rules to evaluate sources, then you're going to be disappointed. GMGtalk 12:38, 19 December 2024 (UTC)
- I didn't ask about the evaluation of sources, nor did I suggest that a checklist was involved. Again, I asked: How do you assess which non-research views are significant when it comes to "representing fairly, proportionately, and, as far as possible, without editorial bias, all the significant views"? Critical thinking and context alone cannot tell you whether a view is significant. For example, you said "the neurodiversity moment [sic] ... is very much a fringey position given the totality of what's been published on the subject" of autism. You assessed that the neurodiversity perspective is not a significant view. You should be able to explain how you went about assessing that. FactOrOpinion (talk) 14:04, 19 December 2024 (UTC)
- "I didn't ask about the evaluation of sources" ... "How do you assess which non-research views are significant"
- Umm...I'm not sure what semantic distinction you think you're making. But my answer remains the same. GMGtalk 14:18, 19 December 2024 (UTC)
- I'm surprised that you don't see a semantic distinction between sources and views. Are you truly suggesting that when you read WP:NPOV, "All encyclopedic content on Wikipedia must be written from a neutral point of view (NPOV), which means representing fairly, proportionately, and, as far as possible, without editorial bias, all the significant views that have been published by reliable sources on a topic" (links and emphasis in the original), you don't understand why "views" and "sources" link to very different content? If that's the case, perhaps you should follow the links to help you better understand their meanings. I'm trying to AGF, but you seem to be working very hard not to answer the actual question. FactOrOpinion (talk) 14:49, 19 December 2024 (UTC)
- I can assure you I'm quite familiar with the policy. You seem to think there is a thing called "a view" that is disconnected from sources. It's sources all the way down, and there is no views that Wikipedia cares about sans sources. GMGtalk 15:03, 19 December 2024 (UTC)
- I said nothing that suggests
there is a thing called "a view" that is disconnected from sources
(emph. added). I pointed out that "views" and "sources" have different meanings, so it should have been clear what the semantic distinction was in the two excerpts you quoted from my comment, and that my question about how you assess whether a view is significant is not asking forhard-fast rules to evaluate sources
. Assessment doesn't always involve rules, and "connected" doesn't mean "interchangeable." For example, re: your claim thatthe neurodiversity moment [sic] ... is very much a fringey position given the totality of what's been published on the subject
of autism, in what way did you assess "the totality of what's been published on the subject"? Too much has been published for a single person to read everything in that totality, so your assessment isn't based on reading it all. What was your assessment of its insignificance based on? Agreed that "there is no view[] that Wikipedia cares about sans sources," but when sources exist, we're still tasked with assessing whether they do or don't present significant views vis-a-vis the article's subject. FactOrOpinion (talk) 16:36, 19 December 2024 (UTC)- Okay. I'm done. Good luck. GMGtalk 16:42, 19 December 2024 (UTC)
- You could have saved both of us a lot of time by responding to my initial question with "I'm not willing to explain how I assess a view's significance." FactOrOpinion (talk) 16:50, 19 December 2024 (UTC)
- Okay. I'm done. Good luck. GMGtalk 16:42, 19 December 2024 (UTC)
- I said nothing that suggests
- I can assure you I'm quite familiar with the policy. You seem to think there is a thing called "a view" that is disconnected from sources. It's sources all the way down, and there is no views that Wikipedia cares about sans sources. GMGtalk 15:03, 19 December 2024 (UTC)
- I'm surprised that you don't see a semantic distinction between sources and views. Are you truly suggesting that when you read WP:NPOV, "All encyclopedic content on Wikipedia must be written from a neutral point of view (NPOV), which means representing fairly, proportionately, and, as far as possible, without editorial bias, all the significant views that have been published by reliable sources on a topic" (links and emphasis in the original), you don't understand why "views" and "sources" link to very different content? If that's the case, perhaps you should follow the links to help you better understand their meanings. I'm trying to AGF, but you seem to be working very hard not to answer the actual question. FactOrOpinion (talk) 14:49, 19 December 2024 (UTC)
- I didn't ask about the evaluation of sources, nor did I suggest that a checklist was involved. Again, I asked: How do you assess which non-research views are significant when it comes to "representing fairly, proportionately, and, as far as possible, without editorial bias, all the significant views"? Critical thinking and context alone cannot tell you whether a view is significant. For example, you said "the neurodiversity moment [sic] ... is very much a fringey position given the totality of what's been published on the subject" of autism. You assessed that the neurodiversity perspective is not a significant view. You should be able to explain how you went about assessing that. FactOrOpinion (talk) 14:04, 19 December 2024 (UTC)
- Critical thinking and context? There isn't like a checklist where if you tick seven out of ten boxes then you count. Even the same source may be both reliable and unreliable depending on the usage. Green Eggs and Ham is perfectly fine for the article on the book. It's not very useful for the main article on Ham. If you're looking for hard-fast rules to evaluate sources, then you're going to be disappointed. GMGtalk 12:38, 19 December 2024 (UTC)
- I didn't ask you what you wouldn't accept. I asked you how you do assess which non-research views are significant. Surely you understand the difference. I'm still hoping that you'll answer my actual question. FactOrOpinion (talk) 21:23, 18 December 2024 (UTC)
- Certainly not some rando's self published book. GMGtalk 21:14, 18 December 2024 (UTC)
- But medical and health info is not the only info relevant to the Autism article. So I'll try to make my question clearer: for info in the Autism article that doesn't fall under MEDRS, how do you assess which non-research views are significant when it comes to "representing fairly, proportionately, and, as far as possible, without editorial bias, all the significant views"? FactOrOpinion (talk) 20:34, 18 December 2024 (UTC)
- For medical or health topics, we would generally look for meta-analysis, textbooks, or professional guidance from recognized institutions. These subjects have among the highest burden of proof as readers may make health related decisions based on Wikipedia, and so providing flawed information could be actively harmful. GMGtalk 19:54, 18 December 2024 (UTC)
- Yes. How do you assess which non-research views are significant when it comes to "representing fairly, proportionately, and, as far as possible, without editorial bias, all the significant views"? FactOrOpinion (talk) 18:58, 18 December 2024 (UTC)
- Not Amazon search results? GMGtalk 18:27, 18 December 2024 (UTC)
- Thanks, @GreenMeansGo, for pointing this out. Multiple times I've cited Wikipedia's guidelines which indicate that peer-reviewed sources and scientific consensus are to be relied upon when available, yet contrarians insist on such non peer-reviewed sources. It's also disappointing to see the global scientific consensus[1] frequently omitted by them from these discussions, as it has been clarified numerous times on this talk page. Димитрий Улянов Иванов (talk) 19:42, 18 December 2024 (UTC)
- They mean nothing to you. Whether they're meaningful to other editors is up to those other editors. How do you assess what non-research views are significant? FactOrOpinion (talk) 18:14, 18 December 2024 (UTC)
- FOO, autism is not the only neuropsych situation for which varying viewpoints exist, so perhaps looking at some others will produce a functional model. Two obvious examples are Culture-bound syndrome and Anti-psychiatry.
- Generally speaking, we're looking for MEDRS-style sources (of any reasonably common viewpoint) for biomedical information. If a viewpoint isn't in the biomedical line, then we usually want something similarly scholarly to contest it. They can be sources that describe views the authors don't hold (e.g., anthropologists describing the Hmong beliefs about epilepsy being a spiritual condition), but they should be high-quality sources. We want to avoid using informal sources (e.g., social media, news media) to debunk the POV presented in MEDRS-style sources.
- A simple answer is: If the non-biomedical viewpoint is in multiple-to-many scholarly sources, then it's probably worth mentioning. WhatamIdoing (talk) 07:31, 20 December 2024 (UTC)
- Thank you for this helpful summary of what Wikipedia guidelines actually say about this. Oolong (talk) 07:23, 24 December 2024 (UTC)
- Amazon search results mean exactly nothing. There's not much further debate to be had there. GMGtalk 17:59, 18 December 2024 (UTC)
Dispute Resolution Request
[edit]Obviously several of us have been arguing in circles for some time now, so I have opened up a Dispute Resolution request.
Parties I have named besides myself are @Димитрий Улянов Иванов, @Ó.Dubhuir.of.Vulcan, @HarmonyA8, @TempusTacet, @WhatamIdoing, @FactOrOpinion and @GreenMeansGo. I understand that participation in this process is voluntary, and I don't believe it is restricted to those named (I could have include many more handles if I'd gone back a bit further - please chime in if there's anyone you think should be included).
Discussions should of course be "civil, calm, concise, neutral, objective and as nice as possible."
Of necessity, the request is couched in pretty broad terms; underlying disputes have surfaced in so many different ways, over so many years, that obviously the recent tensions are just the tip of the iceberg. I am aware that in general, it would be better to keep requests shorter, but I wanted to make sure that anyone coming in could make some sense of what's happening here. Oolong (talk) 16:04, 20 December 2024 (UTC)
- I think RIT RAJARSHI might wish to know as well, as they'd placed an "unbalanced" tag on the article, which was quickly reverted by Димитрий Улянов Иванов, leading RIT RAJARSHI to voice concern at the Teahouse about the imbalanced article content and contentious Talk page discussions (which is what drew me to this Talk page). FactOrOpinion (talk) 17:27, 20 December 2024 (UTC)
- Thanks for telling me but I am highly sensitive person unable to handle mental stress and conflicts. I also have privacy concerns. And also I get scared if I get a lot of public attention. I am NOT just good with tension filled situation. I have specifically mentioned on several places that I wanted to quit this discussion (at least for now); as my mental health condition is not supporting. I get easily influenced by other peoples' negative emotions and criticisms. I still think the article is misleading and lacking a balanced view, but I expect the editors to be kind and empathetic enough to try to understand the harms of a scientistic-reductionist view of human beings, the harms of strictly medical model or a deficit centric tragedy model. Noted neuroscientist Robert Sapolsky also discussed the failures of "categorical thinking" and "behaviourism" to look at a living creature. Since communication involve more than 1 person, all debates regarding ANY communication "disorder" involve more than one group of people; how mild or severe the "disorder" [Sic] may appearently look like. There will be fundamental debates, relativity, and subjectivity regarding whom we consider as the "norm", the "healthy" one... which is the "disordered" one. To deny that using votes or consensus is to deny reality of the situation. Debates and arguments are not suitable things for me. I pray the editors to try to understand the situation with empathy (not sympathy)... I am spending time in spirituality, art, meditation, etc. in order to heal...
- I pray the editors esp. on medicalization side, to accept the other viewpoints, and acknowledge the duality of the issue. It is not that there are some "pathological symptoms" and some "non-pathological symptoms". It is the same set of symptoms that can be described in 2 different ways. And even after adopting to a "Strength based model" than deficit centric, you will still be able to provide supports, services, and accommodations.
- Regarding behaviourist "evidence based therapies", In a previous comment (I am too exhausted to locate it) ... I explicitly mentioned a few quotes from Hari Srinivasan, who is a mostly nonspeaking Autist. I also posed several questions regarding people who might be seen as severely biologically impaired from a majority viewpoint, but they adopted a social model approach. You may locate that comment for further understanding.
- I ask for forgiveness from all editors from all the sides. I am not well. And I regret stepping into this debate. I can't take this tension and negativity. My mental health is rapidly deteriorating. Please forgive and exempt me from the negativity of this subject matter.
- RIT RAJARSHI (talk) 19:52, 20 December 2024 (UTC)
- Hey, sorry to see you dragged in again (but I appreciate @FactOrOpinion's good wishes here!) - I know how stressful this kind of thing can be, and I got your message that you didn't want to be part of this if you can help it. Thank you for your efforts to date, anyway! Oolong (talk) 20:02, 20 December 2024 (UTC)
- just FYI... I am unable to be a part of it... brcause too much mental pressure, negativity, and public attentions/ privacy concerns. Its not like I have no willingness to say... but I am unable to bear the emotional cost of it. I ask for forgiveness from all the editors and scholars in concerned interestsRIT RAJARSHI (talk) 20:51, 20 December 2024 (UTC)
- Participation is 100% optional. Do not worry about this. I hope that you feel better soon. WhatamIdoing (talk) 01:12, 21 December 2024 (UTC)
- just FYI... I am unable to be a part of it... brcause too much mental pressure, negativity, and public attentions/ privacy concerns. Its not like I have no willingness to say... but I am unable to bear the emotional cost of it. I ask for forgiveness from all the editors and scholars in concerned interestsRIT RAJARSHI (talk) 20:51, 20 December 2024 (UTC)
- Hey, sorry to see you dragged in again (but I appreciate @FactOrOpinion's good wishes here!) - I know how stressful this kind of thing can be, and I got your message that you didn't want to be part of this if you can help it. Thank you for your efforts to date, anyway! Oolong (talk) 20:02, 20 December 2024 (UTC)
- Honestly, as chaotic as it is and as a lurker who doesn't use wikipedia all that much, in defense of Димитрий Улянов Иванов and a few others, from my interpretation, I generally don't really see Димитрий Улянов Иванов (and other users more or less on his side) to be in the wrong here, and I certainly don't believe Димитрий Улянов Иванов in particular is intending to create much conflict, as opposed to just wanting the article to follow the scientific consensus, (though to be fair, that's certainly not to say I would like to see it as a bit less personally confrontational from certain users on all sides at times). I also know that many of the citations given to provide opposing perspectives really are questionable and their inclusion of which from my understanding feels only like it is done specifically to highlight neurodiversity and anti-psychiatry perspectives the editors identify with to contrast that of the mainstream medical model which is found by those, perhaps "partisan" users as "problematic" or "abelist", focusing mostly on that basis to bolster their own edits regardless of potential own conflicting POV, and less about the exact validity, or scientific credibility of their citations in relation to the rest of the articles data, including the rewritings and removals of cited material, even despite their ideological aims sometimes being directly in conflict with that of the current scientific consensus. So, in general, while I do agree there is a serious risk of the article becoming imbalanced and sharing undue weight because some people want to hold the article towards a certain slant, from my own point of view from some random lurker, I really only see it from one side mostly, although to give credit, I certainly don't think that in anyway means there hasn't been non-productive, non-constructive conflict from certain individuals of either side, so I do think seeking to rectify that is understandable, if perhaps obscuring that one sides objections to numerous, fairly recent and heavily conflicting additions/sources, is generally valid. GigaMigaDigaChad (talk) 17:58, 20 December 2024 (UTC)
- I disagree with almost all of that, but let's leave that to one side.
- I just wanted to flag up one thing, because I think it's important: I haven't seen a single person put up anything promoting anti-psychiatry perspectives. Have you? I might have missed something. But neurodiversity is a very separate movement from anti-psychiatry, much though they might share a few of the same concerns. In my experience anti-psychiatry folks are just as hostile to neurodiversity-based perspectives as anyone on the pro-psychiatry side! Oolong (talk) 20:07, 20 December 2024 (UTC)
- Hi there, regarding Anti-psychiatry, I had understood them to be ideologically adjacent similar to the "mad pride" movement. If I was incorrect in my assessment then feel free to ignore that as a misunderstanding on my part. GigaMigaDigaChad (talk) 20:11, 20 December 2024 (UTC)
- Hi, although there are similarities, there are also drastic differences between radical antipsychiatry, criticism of psychiatry/psychiatric survivor movements, mad pride, and neurodiversity movements. The philosophies or reasoning may sound apparently same, but there are differences both in the principle and history.
- Antipsychiatry:
- It has been claimed at least a section of anti-psychiatry believers are also connected to "Church of scientology" and similar organizations. I don't know its truth.
- Anti-psychiatry groups often oppose any kind of label, including Autism.
- They are absolute abolitionists
- Some of the supporters also claimed to support various conspiracy theories.
- Criticism of psychiatry + Psychiatric survivors moment
- It addresses issues like death of great literary [[Earnst Hemingway]] or similar negative outcomes.
- Critic of malpractice
- Critic of existing bad practices
- At least a section are reformists than absolute abolitionists.
- Mad Pride
- Mostly based on opposition of normal-abnormal judgement.
- At least a subsection is against all therapy and medications.
- A subsection is seriously affected by psychiatric misunderstanding or existing bad practices.
- Neurodiversity movements
- Very often framed from a personal and civil liberty aspect.
- Embraces diagnoses, self-identifications, and other non-derogatory labels instead of throwing them off
- Puts importance on various aspect of life, including education, learning, economics, etc.
- Embraces some form of therapy and medication, but more power goes to lived experience and insight of the patient party than imposed rapid-fire treatments.
- The diffferent disabled communities also differ in their principles. Such as Autistic communities and Down Syndrome communities have many similarities as well as some differences in their principles.
- It looks like many editors are confused about so many ideas those looks like they are closely related but has distinctive principles and histories. RIT RAJARSHI (talk) 20:37, 20 December 2024 (UTC)
- Thanks for this.
- My sense is that there's very little awareness of anti-psychiatry in the neurodiversity movement; where they interface at all, it seems critical to the point of hostility. Damian Milton debated with Sami Timimi one time about eight years ago, which showed that the latter had failed to understand many rather basic things about neurodiversity; Robert Chapman spends a fair chunk of Empire of Normality criticising anti-psychiatrists, especially those coming from a capitalist-friendly angle; the Mad in America blog (which I take to be broadly aligned with anti-psychiatry, but that's based on a surface reading) recently ran a short, hostile series on neurodiversity which, again, seemed to be based largely on misunderstandings.
- Extremely unhelpful for anyone to assume that these movements are closely aligned. Oolong (talk) 10:28, 21 December 2024 (UTC)
- Firstly, thank you Rit Rajarshi for taking your time to clarify a more nuanced explanation of the various sides, while there certainly is overlap. If I were to give a little more reasoning behind my previous edit.
- I would however disagree with Oolong however from what I have researched of the movements, because the movements such as neurodiversity as well as other, older "anti-medicalist" model movements are for the most part, incredibly decentralized in nature with their own individual theorists and advocates who share their own unique perspectives and influences, and often may even conflict even with other adherents of their own movements on the specifics of the nature of disability (or a lack thereof).
- Instead I think it would be much more generalizable to say these groups were all vague and broad social movements, who as mental-activist groups all have found themselves loosely adjacent to each other in contrast to the more medically recognized and "orthodox" health authorities who adhere to the "pathological/biomedical model", and as such have shared much cross-pollination as well as mutual critique between each others and only sometimes forming alliances between certain individual groups or factions rather than representative of the movement as a whole.
- Perhaps me referring certain arguments as "anti-psych" or "something akin to anti-psych" could be seen as risking conflating the various different diverse movements and lumping them together which might risk misrepresenting the other movements, even when there is indeed some general overlap. Which is an argument I think is a perfectly reasonable argument and I do appreciate @RIT RAJARSHI for wanting to help take some of his time out to specify this. GigaMigaDigaChad (talk) 00:58, 22 December 2024 (UTC)
- Just wanted to mention one more thing I felt like I should also mention. I do think in practice it is kinda hard to separate these movements too much either since they often don't have any central belief system and thus certain advocates from one field may borrow aspects from another (see the neurodiversity advocates cross-pollination with mad-pride) but I do think it's more professional and less personal and confrontational to not conflate the movements together as mostly equivalent despite that. GigaMigaDigaChad (talk) 01:05, 22 December 2024 (UTC)
- Regards. RIT RAJARSHI (talk) 20:37, 20 December 2024 (UTC)
- Just wanted to mention one more thing I felt like I should also mention. I do think in practice it is kinda hard to separate these movements too much either since they often don't have any central belief system and thus certain advocates from one field may borrow aspects from another (see the neurodiversity advocates cross-pollination with mad-pride) but I do think it's more professional and less personal and confrontational to not conflate the movements together as mostly equivalent despite that. GigaMigaDigaChad (talk) 01:05, 22 December 2024 (UTC)
- RIT RAJARSHI, please see WP:NOR, WP:NOT#ORIGINAL, and WP:NOT#FORUM. This talk page is for discussion of editorial improvement to the article content, not long-winded personal suppositions (some of which are wrong) about vague classes of people in an attempt to promote a particular viewpoint. If you are looking for Facebook, it's over there ↗ ... — SMcCandlish ☏ ¢ 😼 05:42, 23 December 2024 (UTC)
- If people are under misapprehensions about terms and positions relevant to this page, and they are affecting how they approach edits and Talk page discussions, I don't see how it would be inappropriate to correct these errors. Oolong (talk) 08:50, 23 December 2024 (UTC)
- With all due good faith, I think at very worst I only made a minor blanket statement which I was quick to clarify. I don't think it's that big of an issue worth focusing on. GigaMigaDigaChad (talk) 11:44, 23 December 2024 (UTC)
- It looks less like a forum diacussion and looks more like clarifying the audience on what they are talking about. 2409:40E0:1F:E636:8000:0:0:0 (talk) 17:53, 25 December 2024 (UTC)
- Oolong: That's still meta-discussion about editors and their viewpoints and understandings, not about how to improve the content in this article for readers, so it's a discussion for WT:AUTISM, which is where editors interested in this topic and its intersections can work out how to collaborate better to produce article coverage that is both consistent from article to article and consistent in a WP:DUE manner with WP:RS (and particularly WP:MEDRS). That's not going to be the sort of discussion and compromise/consensus process that is going to differ substantively on a page-by-page basis, and it is also incredibly long-winded and sometimes heated, so it is not helpful to fight about these matters, and re-re-re-fight about them repetitively, at the talk pages of articles that are within the topical scope. Even at WT:AUTISM, this sort of discussion needs to re-focus on editorial production of reader-facing content, not ideological positions about different approaches to or definitions of medicine, psychology, psychiatry, and mental health generally. We have WP:NOT#FORUM and WP:NOR and WP:NPOV policies for good reasons. — SMcCandlish ☏ ¢ 😼 05:15, 6 January 2025 (UTC)
- The suggestion that neurodiversity is aligned with antipsychiatry has come up more than once on this Talk page, from different editors; and navigating ideological position is absolutely central to the editorial production of reader-facing content on pages such as this one.
- It seems to me that it is worth correcting misconceptions on this Talk page when they are directly relevant to people's views about what should be in the article. Oolong (talk) 07:38, 6 January 2025 (UTC)
- Personally I think a simple clarification or a link to the previous post would be much more constructive. The mention was clearly not done dishonestly nor in bad-faith, as it was clarified as a misconception, as having vague relations to each other both historically and today rather than being the generally the same.
- To keep re-opening the discussion from that when it was already clarified beforehand might come off as a little bit petty or confrontational. Especially since it hyper focuses on tiny part of my overall argument which was a minor mistake said in passing, filling up the talk page with THAT as opposed to focusing on what I really was trying to say, and my argument that some claims of a slanted article are made by users who I saw as having a degree of confirmation bias from their own contributions, edits and removals in the article which itself slants the article to a clear narrative. GigaMigaDigaChad (talk) 19:11, 6 January 2025 (UTC)
- Oolong: That's still meta-discussion about editors and their viewpoints and understandings, not about how to improve the content in this article for readers, so it's a discussion for WT:AUTISM, which is where editors interested in this topic and its intersections can work out how to collaborate better to produce article coverage that is both consistent from article to article and consistent in a WP:DUE manner with WP:RS (and particularly WP:MEDRS). That's not going to be the sort of discussion and compromise/consensus process that is going to differ substantively on a page-by-page basis, and it is also incredibly long-winded and sometimes heated, so it is not helpful to fight about these matters, and re-re-re-fight about them repetitively, at the talk pages of articles that are within the topical scope. Even at WT:AUTISM, this sort of discussion needs to re-focus on editorial production of reader-facing content, not ideological positions about different approaches to or definitions of medicine, psychology, psychiatry, and mental health generally. We have WP:NOT#FORUM and WP:NOR and WP:NPOV policies for good reasons. — SMcCandlish ☏ ¢ 😼 05:15, 6 January 2025 (UTC)
- If people are under misapprehensions about terms and positions relevant to this page, and they are affecting how they approach edits and Talk page discussions, I don't see how it would be inappropriate to correct these errors. Oolong (talk) 08:50, 23 December 2024 (UTC)
- Hi there, regarding Anti-psychiatry, I had understood them to be ideologically adjacent similar to the "mad pride" movement. If I was incorrect in my assessment then feel free to ignore that as a misunderstanding on my part. GigaMigaDigaChad (talk) 20:11, 20 December 2024 (UTC)
- Димитрий Улянов Иванов, Ó.Dubhuir.of.Vulcan, I have no experience with the Dispute Resolution Noticeboard (though I've occasionally browsed discussions there), and perhaps you don't either. My understanding is that the moderator is waiting for each editor to explicitly say "whether you would like to try moderated discussion (mediation) in order to resolve content disputes," where that includes agreeing to the rules the moderator establishes (some already on the page, some perhaps added later). You might find it useful to read the usual DRN rules, one of which is to check back on the DRN page at least every 48 hours. FactOrOpinion (talk) 15:51, 23 December 2024 (UTC)
- Thanks for the information. Unfortunately, I do not have the time to consistently respond within 48 hours. Hopefully that is not a strict requirement. Димитрий Улянов Иванов (talk) 15:57, 23 December 2024 (UTC)
- I suggest that you ask the moderator about that. FactOrOpinion (talk) 16:09, 23 December 2024 (UTC)
- Thanks for the information. Unfortunately, I do not have the time to consistently respond within 48 hours. Hopefully that is not a strict requirement. Димитрий Улянов Иванов (talk) 15:57, 23 December 2024 (UTC)
- Just posting a heads up that Robert McClenon has posted a new comment to the Dispute Resolution Request for this article. He needs people to address his comment, so that he can assess whether DRN is a good venue for discussion of the conflict / whether discussion there is likely to be helpful. FactOrOpinion (talk) 18:52, 25 December 2024 (UTC)
- Thank you! Димитрий Улянов Иванов (talk) 18:40, 26 December 2024 (UTC)
My two cents worth
[edit]I have been off here and not editing for a very long time but I have been watching and this is not an easy situation to solve. It all boils down to the rules of Wikipedia and what constitutes a reliable source first and foremost. Now what we have here is a situation where reliable sources are supporting both sides of the argument. So in essence both should be included in the article and in a neutral manner. Now the minute we start talking about deleting stuff in what has been proposed, we are crossing the line into personal opinion or a political slant - and that has to be shut off pronto as NPOV has gone once that line is crossed. ND is a fluid subject and off wiki politics is causing this leading to an abundance of sources - some of which are not reliable (blogs are a great example). A lot has changed since the DSM-IV and balance is being lost in the shuffle as people (not necessarily those involved here) push certain interpretations that might be right but need sources. It's a very touchy subject that needs outside help and the DR should help if everyone decides to get involved. Wikipedia is an encyclopedia. Never forget that. Let's get this balanced on the sources. Not everyone will be happy with the result but if the sources say this AND that, it is what we go with. That is what an encyclopedia should be. Aspie Lover (talk) 01:12, 21 December 2024 (UTC)
- Right! The extremely tricky thing is getting the balance right, and I haven't found anything in Wikipedia's guidelines which comes close to resolving the question of how to do that in a dispute of this specific nature. Hence the many open questions in my essay about all this...
- The only bit I'm not sure about in what you've posted is about deleting stuff - I'm not sure how to interpret this, and my perspective is that the main autism entry is at least 2-3000 words longer than it should be, while also missing many important subtopics that should clearly be in; we really need to make some collective calls about what needs to go. It does help that there is currently a lot of content which ought to be brought down to summary length because there are already separate articles covering those topics extensively, though. Oolong (talk) 10:36, 21 December 2024 (UTC)
Both the 'medical' and 'neurodiversity' viewpoints on autism admit that there is a difference in brain architecture and function between autistic and allistic people and that these affect behaviour and sensory reactions to stimuli. Both recognise that genetic and environmental influences are important facets of the etiology of autism. It is the interpretation of these facts where difference lies. The medical paradigm views autism as a pathology, with symptoms and deficits - the description of which can, quite easily, stray into being offensive to many autistic people. The neurodivergence paradigm sees autism as part of he natural variation in humanity, with, what are otherwise described as symptoms and deficits being described as merely differential traits. Additionally, the neurodivergence view recognises that autism can confer advantages, such as heightened abilities to concentrate on a task (pathologised as 'hyperfixation'), an enhanced eye for detail and unusual abilities in problem solving.
In my view, any topic that has two major interpretations or theories being used to describe its core features, in simultaneous existence, requires that each interpretation is given as close to equal weight and coverage as possible. That is, if any respectable encyclopaedic treatment of the topic is envisaged. Both the medical and neurodivergence viewpoints have numerous reputable scholarly publications behind them, the only difference being that neurodivergence is a newer concept and therefore has fewer publications. Urselius (talk) 10:14, 23 December 2024 (UTC)
- Wikipedia's official view is that neutral point of view (NPOV) means "representing fairly, proportionately, and, as far as possible, without editorial bias, all the significant views that have been published by reliable sources on a topic."
- As far as I understand it, the central question here is around what counts as reliable sources, and how do we decide? Whose voices count towards this assessment?
- I think it is worth saying that my perception is that some of the combativity has been motivated by anxiety about people doing things which nobody has expressed any intention to do. Perhaps it could be worth being quite explicit about what is actually being argued for, but it would be helpful to also have a clearer picture of what exactly people are afraid of happening here. I don't believe that anybody here is coming from an anti-science perspective, for example. I haven't seen any suggestion anywhere of people wanting to include things that are contradicted by empirical findings. I hope this can be borne in mind in future discussions.
- While you suggest that when two major interpretations exist, each should be given "as close to equal weight and coverage as possible", this isn't quite how Wikipedia interprets neutrality: rather, "avoiding giving undue weight means articles should not give minority views or aspects as much of or as detailed a description as more widely held views or widely supported aspects."
- However, it is not clear, as above, whose voices count towards this assessment. "Widely supported" among whom? One extreme position would be that only clinicians' voices should matter in this assessment. A slightly less extreme position would be that all relevant scientists (or other researchers?) should also count. I am sure that many other people would say that the view of the 'autism community' are the most important ones here: clinicians and researchers with relevant experience, yes, but also autistic people, their families, and people who work with them in non-clinical contexts. Another extreme position might be that only autistic people should really be important in deciding which sources are reliable.
- Perhaps we can find a compromise that most of us can live with.
- I suppose another approach would be to ask "what do scientists working in the field think about how much autistic people, for example, should be listened to about autism?" - I don't expect that we'll find definitive answers to that, though; I don't know that anybody has done a survey study asking researchers about this, but it is certainly true that many prominent autism researchers by now have spoken up about the importance of listening to autistic people, and how much they have learned about doing so. For example, "Making the future together: Shaping autism research through meaningful participation" (Fletcher-Watson et al 2018) calls for "the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is likely to lead to better translation into practice and improved outcomes for autistic people and those who support them."
- §
- It is interesting to note that apparently a neutral point of view "neither sympathizes with nor disparages its subject (or what reliable sources say about the subject), although this must sometimes be balanced against clarity."
- So, we should be avoiding language that disparages autistic people. That seems worth bearing in mind.
- It is also good to notice that according to the Manual of Style - which mentions the preferences of patient groups as a motivation for these sorts of choices - "Words like disease, disorder, or affliction are not always appropriate."
- There are questions here that Wikipedia's explicit policies and guidelines don't provide unambiguous answers for, but it seems clear to me that there is a strong case for toning down the pathologisation considerably, while ensuring that the scientific evidence that exists is fairly and accurately represented, and different viewpoints are represented in as balanced a way as possible. Oolong (talk) 18:21, 23 December 2024 (UTC)
I'm not sure whether everyone participating at the DRN has seen Robert McClenon's request that we "read DRN Rule G. This is the new set of rules for this mediation." Just a heads up. FactOrOpinion (talk) 14:15, 30 December 2024 (UTC)
Updates, 2025-01-19
[edit]Note: I have re-instituted the {{unbalanced}} tag on the article, pending resolution of its imbalances, as we seem to have a general agreement that it is in fact unbalanced. Anyone who thinks it's okay as it is might like to refer to the results of the survey I ran, in which the 31 respondents who'd seen the page gave it an average of only 3.25 out of 10 for how well it reflects their own experiences and understanding of autism.
Anyone wishing to follow the ongoing dispute resolution process should know that it now has its own subpage where a redrafted version of the lead has been proposed, as well as a separate page for relevant back-and-forth discussions.
--Oolong (talk) 08:01, 19 January 2025 (UTC)
- General agreement? I think there's certainly a fair bit of disagreement with how the current autism article is right now, but I really am not sure if it's really enough to qualify as "unbalanced", at best (while still trying to remain non-partisan), I could perhaps say the subject is still fairly contentious or perhaps controversial as there seems to be major clashes between bio-medicalist and neurodiverse advocates in the discussion page, and which sometimes have become very heated.
- However, to specifically add the "unbalanced" tag, especially without any way to confirm a true general consensus or a way to tally the various users and contributors here who would agree with such an edit (many of which, including myself are also on the spectrum) seems to make me somewhat skeptical of any genuine signaling of any true consensus for the current state of the article, such skepticism is further bolstered for me from the potential significant personal or ideological biases that may occur in a small, self-organized survey ran without proper clarification for wikipedia users outside of their circle, by someone who holds a clear (self-admitted) personal bias as a vocal internet activist for neurodiversity, and who may wish to use such to push certain partisan worldviews onto the wiki through implying there article is unfairly slanted against ideology.
- As an autistic, and as someone who has to live and has a certain grasp of the complexity and nuances of those who have and struggle with the condition of autism; While I do think it's incredibly important, even noble to collect information and opinions from general users across the globe, especially those on the spectrum so as to get a wider array of perspectives in relation the overall quality of the article. I really can't help but question the validity of your Survey, and if it's actually truly doing that and reflecting the wide array of perspectives including those on the spectrum who otherwise wouldn't have been able to speak at all, or only propping up ones current confirmation bias with like-minded individuals who share said partisan agenda, and considering my overall feeling of sketchiness with the overall survey, I am slightly leaning towards the latter. this may seem in poor-faith, though remembering that the survey was presented and used as here as if it were solid proof when it was a small survey of a couple dozen people self-organized by a social media activist without any notification from outside your current circle, I find it somewhat hard to find the justifications for such a tag with strong implications as perfectly genuine. GigaMigaDigaChad (talk) 14:19, 19 January 2025 (UTC)
- I think that the important thing is that the dispute resolution process, especially the opinion of the uninvolved editor in charge, has come to the conclusion that the article requires extensive redrafting in order that it more faithfully reflects contemporary views on autism (scientific, sociological and cultural). This essentially is the same as saying that the current version is 'unbalanced'. That the current version gives medical usage unique authority, and sets it above some scientific and most sociological views, is both obvious and unquestionable. The 'unbalanced' tag is a temporary measure, until rebalancing of the text can occur. It is there to inform readers that what they are reading might not be an appropriately balanced treatment. Urselius (talk) 15:28, 19 January 2025 (UTC)
- @Urselius precisely this. Thank you. Oolong (talk) 16:01, 19 January 2025 (UTC)
- @GigaMigaDigaChad the survey was shared surprisingly widely, not only in my circles, but obviously it is just a small, informal survey.
- Without the evidence of a long stream of people coming to this Talk page and giving evidence on how unbalanced the entry is, I wouldn't think the survey on its own would be enough - even though it is so overwhelmingly negative, and the people who filled it in are mainly people with substantial personal experience and subject knowledge.
- But as it is, it would be quite clear without the survey that the article is unbalanced.
- --Oolong (talk) 16:17, 19 January 2025 (UTC)
- I think that the important thing is that the dispute resolution process, especially the opinion of the uninvolved editor in charge, has come to the conclusion that the article requires extensive redrafting in order that it more faithfully reflects contemporary views on autism (scientific, sociological and cultural). This essentially is the same as saying that the current version is 'unbalanced'. That the current version gives medical usage unique authority, and sets it above some scientific and most sociological views, is both obvious and unquestionable. The 'unbalanced' tag is a temporary measure, until rebalancing of the text can occur. It is there to inform readers that what they are reading might not be an appropriately balanced treatment. Urselius (talk) 15:28, 19 January 2025 (UTC)
edit 1267637698
[edit]@JenOttawa when you made [[[8]|this edit]] was it because you thought it sounded nicer? I'm curious. Anthony2106 (talk) 11:13, 6 January 2025 (UTC)
- FWIW, I felt Jen explained their motivation sufficiently in their edit summary, and was a bit surprised by what I perceived as a rather aggressive tone in your own edit summary when you reverted them, especially as they indicated that they were willing to revert themselves if they were mistaken.
- That said, I checked the link you provided in your edit summary, and I didn't see anything there explicitly stating that identity-first language is preferred, though I may have overlooked something? DonIago (talk) 13:55, 6 January 2025 (UTC)
- Essentially, some people prefer person first language, and others prefer disorder-first language when it comes to ASD. A preference isn’t unanimous, and I disagree with Anthony that the former is factually less correct. To make an analogy, my leg is part of who I am, but that doesn’t imply I can’t say “I have a leg” because person first context isn’t exclusive for things unrelated to the person, such as possession of objects. It is applicable to personal characteristics as well. I don’t think either is more or less factually correct, it just comes down to personal preference and is highly subjective. Димитрий Улянов Иванов (talk) 14:14, 6 January 2025 (UTC)
- I think it would be really funny if I just responded "I have legs too."
- but yeah "I have legs" "I have autism" I guess they are technically correct but in the autistic community identity first is preferred.
- Also Димитрий you think I should link "motor coordination impairment" to Developmental coordination disorder in the lead? because "motor coordination impairment"s part of autism might not be bad enough to count as dyspraxia. Anthony2106 (talk) 12:23, 8 January 2025 (UTC)
- FWIW, I've never seen a consensus amongst reliable sources that identity first language is preferred in the autistic community. Even if many prefer it, that would presumably leave many who do not. DonIago (talk) 13:42, 8 January 2025 (UTC)
- Yeah good point.
- Sorry @JenOttawa
- DonIago MOS:DISABILITIES does mention autism a handfull of times if you command-F you'll find it, they mention it in MOS:DISABILITIES#Autism and MOS:DISABILITIES#People-first language. Anthony2106 (talk) 03:55, 7 January 2025 (UTC)
- Thank you; I saw it when I looked this time. Still, I think Jen was acting in good faith and reverts are a dime a dozen; thank you for apologizing to them! I have mixed opinions on it, but I don't feel strongly enough about it to want to make any waves. DonIago (talk) 05:57, 7 January 2025 (UTC)
- Jen was doing good faith I reacted in a slightly drastic way. Anthony2106 (talk) 08:00, 7 January 2025 (UTC)
- Thank you; I saw it when I looked this time. Still, I think Jen was acting in good faith and reverts are a dime a dozen; thank you for apologizing to them! I have mixed opinions on it, but I don't feel strongly enough about it to want to make any waves. DonIago (talk) 05:57, 7 January 2025 (UTC)
- Essentially, some people prefer person first language, and others prefer disorder-first language when it comes to ASD. A preference isn’t unanimous, and I disagree with Anthony that the former is factually less correct. To make an analogy, my leg is part of who I am, but that doesn’t imply I can’t say “I have a leg” because person first context isn’t exclusive for things unrelated to the person, such as possession of objects. It is applicable to personal characteristics as well. I don’t think either is more or less factually correct, it just comes down to personal preference and is highly subjective. Димитрий Улянов Иванов (talk) 14:14, 6 January 2025 (UTC)
- Sorry for the delay in responding here. I apologize for my edit to the lead and not having read the other manual of styles first. Hopefully we can keep working together on these and other articles. All the best, JenOttawa (talk) 20:03, 7 January 2025 (UTC)
Sources that help others understand the lived experience of people with autism spectrum disorder?
[edit]Although I work with adults with ASD as a clinical psychologist, I do not have ASD myself so I know that my understanding of the lived experience of adults with ASD (including their childhood and adolescent experiences) is naturally very limited.
- → Question: Whether you have ASD or not, what films, TV series, podcasts, videos, books, journal articles or other sources would you recommend to better understand the lived experience of people with ASD?
- Note: I am looking for quality sources, whether or not they meet Wikipedia standard reliable source or medical reliable source requirements, although Wikipedia's RS requirements are often a good marker of quality.
- Feel free to mention sources that purport to portray autsim accurately, but (in your opinion) fail to do so.
- Please keep your recommendations succinct and without engaging in the important—but not relevant here—debate about how to define and describe autism.
- Along those lines, I understand there are objections to the importance of "lived experience" to policy development and other matters, but let's not debate that here either (please).
Thank you! Mark D Worthen PsyD (talk) [he/him] 18:46, 26 January 2025 (UTC)
- For example, does the Korean TV series Extraordinary Attorney Woo offer helpful insights into the lived experience of (some) adults with ASD? -- Mark D Worthen PsyD (talk) [he/him] 18:55, 26 January 2025 (UTC)
- Books and articles written by autistic people have overwhelmingly switched to a pro-neurodiversity viewpoint in recent years (at least in English; in German to a significant, but lower degree). Sources by non-autistic people that often take a medical model approach almost never address lived experience or speculate about it without asking autistic people. Therefore, most quality sources about lived experience that I listed below are pro-neurodiversity.
- General descriptions of autism:
- https://doi.org/10.1038/s44159-022-00099-z
- https://doi.org/10.1089/aut.2021.0099
- Book: "Is This Autism?: A Guide for Clinicians and Everyone Else" by Donna Henderson et al. (includes many statements by autistic people and there is a separate book of it for diagnosticians)
- Emphasizing with other people:
- https://doi.org/10.1080/09687599.2012.710008
- https://doi.org/10.1177/13623613241255811
- https://doi.org/10.1177/1362361320908976
- Book: "Understanding Others in a Neurodiverse World: A Radical Perspective on Communication and Shared Meaning" by Gemma Williams
- Book: "Authoring Autism" by Melanie Remi Yergeau
- Stigma/Identity/Masking:
- https://doi.org/10.1080/09687599.2020.1822782
- https://doi.org/10.1016/j.rasd.2021.101864
- https://doi.org/10.1002/aur.3105
- https://doi.org/10.15126/thesis.00854098
- Book: "Autistic Masking: Understanding Identity Management and the Role of Stigma" by Amy Pearson and Kieran Rose
- Interests/Monotropism/Sensory differences:
- https://doi.org/10.1177/1362361305051398
- https://doi.org/10.1089/aut.2023.0032
- Stimming:
- https://doi.org/10.1177/1362361319829628
- https://doi.org/10.1177/27546330241311096
- https://doi.org/10.1159/000526213
- Quality of life:
- https://doi.org/10.1007/s11920-023-01441-9
- https://doi.org/10.1111/josp.12456
- https://doi.org/10.1136/medethics-2016-103595
- ABA:
- https://doi.org/10.1108/AIA-04-2020-0025
- Experience of the diagnostic process and influence of the disability model chosen:
- https://doi.org/10.1177/13623613211001012
- The autistic YouTube channel "Aucademy" (led by autistic researchers) has many videos about autistic lived experience.
- Apart from the lived experience topic:
- I think you already know much about the medical model, the following sources help understanding the neurodiversity viewpoint better. If you want to read one book specifically about the neurodiversity paradigm, it should probably be "Neuroqueer Heresies" by Nick Walker, which is written for a broad audience and therefore not academic but written by an academic and arguably the most prominent book in the more academic part of the neurodiversity movement. Many of her essays are freely available online. A particularly noticeable article by Monique Botha on knowledge production in autism is the following: https://doi.org/10.3389/fpsyg.2021.727542 LogicalLens (talk) 10:47, 27 January 2025 (UTC)
- Excellent! Thank you so much LogicalLens. And, yes, I do want to improve my understanding of the neurodiversity viewpoint. Much appreciated -- Mark D Worthen PsyD (talk) [he/him] 18:45, 27 January 2025 (UTC)
- Another article about masking: https://doi.org/10.1089/aut.2020.0043
- Autistic inertia (difficulty starting and stopping tasks): https://doi.org/10.3389/fpsyg.2021.631596
- Autistic burnout: https://doi.org/10.1089/aut.2019.0079
- Meltdown and shutdown: https://doi.org/10.1080/01459740.2018.1460750
- Burnout, inertia, meltdown, shutdown (BIMS): https://doi.org/10.3389/fpsyg.2021.741421
- There are many more articles and I cannot list them all. Some can be found in the references of the ones I listed above, others are given in the Neurodiversity Wikipedia article. The journal "Autism in Adulthood" is also very helpful and has an impact factor of 9.9, which is, as far as I know, the highest value of all journals that are specifically for autism. A very popular theory among autistic people is Monotropism, which assumes that autistic people tend to focus their attention towards fewer things and that this explains nearly all autistic features. Much content on it can be found on https://www.monotropism.org. One of the core aims of the neurodiversity movement is to make participatory research the standard and change the power imbalance in autism research between autistic people and as of now mostly non-autistic researchers because this imbalance is the main reason why autistic voices are marginalized in all debates about autism: https://link.springer.com/chapter/10.1007/978-981-13-8437-0_10
- https://doi.org/10.1177/1362361318786721
- Newly published sources can be found by using a Google Scholar alert for "neurodiversity" and by following some neurodiversity researchers and advocates on social media, especially Bluesky. A few suggestions:
- Monique Botha [9]
- Autism in Adulthood [10]
- Christina Nicolaidis [11]
- Steven Kapp [12]
- Sue Fletcher-Watson [13]
- Catherine Crompton [14]
- Ann Memmott [15]
- Monotropism.org [16]
- Thinking Person's Guide to Autism [17]
- Robert Chapman [18]
- Mary Doherty [19]
- Kristen Bottema-Beutel [20]
- Michelle Dawson [21]
- Damian Milton (is still on Twitter) [22]
- Georgia Pavlopoulou [23]
- Amy Pearson [24]
- Kathy Leadbitter [25]
- Laura Crane [26]
- Katie Munday [27]
- Kieran Rose [28]
- Stimpunks Foundation [29]
- Autistic Self-Advocacy Network (ASAN) [30]
- Autistic Realms [31]
- Autball [32] LogicalLens (talk) 04:18, 28 January 2025 (UTC)
- Excellent! Thank you so much LogicalLens. And, yes, I do want to improve my understanding of the neurodiversity viewpoint. Much appreciated -- Mark D Worthen PsyD (talk) [he/him] 18:45, 27 January 2025 (UTC)
- ''Autism and Masking - How and Why People Do It, and the Impact It Can Have'' (2022) by Sedgewick, F, Hull, L and Ellis, H, Jessica Kingsley Publishers, has many descriptions of the personal experiences of autistic people and how they mask. Urselius (talk) 07:45, 28 January 2025 (UTC)
Semi-protected edit request on 29 January 2025
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AUTISUM makes people nervous in socal interactions 2601:18C:9201:A941:F2D:6C:8F5B:4A1 (talk) 11:56, 29 January 2025 (UTC)
- Not done: it's not clear what changes you want to be made. Please mention the specific changes in a "change X to Y" format and provide a reliable source if appropriate. DonIago (talk) 13:57, 29 January 2025 (UTC)
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