The following discussion is closed. Please do not modify it. Subsequent comments should be made on the dispute resolution noticeboard's talk page. No further edits should be made to this discussion.
Autism, in the wider world, is subject to a very deep disagreement about what it is, and what it means for society.
On Wikipedia, this schism (or paradigm shift) is manifesting in an interesting way, because the root of the disagreement is essentially about the degree to which it is correct or helpful to view autism as a medical issue - a disorder - at all.
Wikipedia has quite detailed guidelines for what to do within medicine, or outside of medicine, but it is less clear what to do when the dispute is about whether something is best thought of as a health issue, and/or something else (for example: a different way of thinking and experiencing the world, a disability, an identity etc.) There are many implications for this distinction, including (to some extent) what we include and (strictly) what counts as a reliable source for any particular piece of information. Many scientists have taken various positions on the issue of neurodiversity, as have autistic and other neurodivergent people, practitioners, family members and writers (all of these overlap greatly). The concept has greatly risen in prominence in recent years.
This underlying dispute manifests in many different ways, across many autism-related articles, often giving rise to tensions, and incredulity on more than one side, when people refuse to accept things that apparently seem obvious to the other side. These go back many years, but have reached a relatively heated pitch in recent weeks, with a number of editors making efforts to change the main autism entry in various ways.
A major point of contention is around systemic bias, relating to what I would call testimonial injustice. Who should be listened to, when it comes to what people should be reading about autism? What exactly should we balancing when we weigh viewpoints "in proportion to their prominence in reliable sources"?
How have you tried to resolve this dispute before coming here?
There are tensions and disagreements for which the resolution is not obvious, and neither is the route to a resolution; much of this has run in circles around what different sources do or do not demonstrate, and which Wikipedia guidelines apply, where, and how. There has also some agressive argumentation and editing which seems unhelpful. Outside input on how to work towards a balanced conclusion - conceivably even something like a consensus - could be helpful.
Summary of dispute by involved contributors
Summary of dispute by Димитрий Улянов Иванов
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The central tension in the dispute revolves around how autism spectrum disorder (ASD) is characterised and the prominence given to this characterisation. Some editors have argued for either reducing, minimising, or entirely removing references to autism as a neurodevelopmental disorder with symptoms, impairments, and varying levels of severity.
This proposed reframing of the article stands in stark contrast to the scientific consensus around the world. As regards the scientific consensus, the validity and relevance of the terminology for ASD has been established by standardised diagnostic criteria (e.g., the World Health Organization's ICD-11 and American Psychological Association's DSM-5), the developers of evidence-based national guidelines (e.g., the UK National Institute for Health & Care Excellence and the European Society for Child & Adolescent Psychiatry), and consensus statements endorsing these guidelines (e.g. IAP Guidelines on Neuro Developmental Disorders).
This is further substantiated by other peer-reviewed, secondary sources such as systematic reviews. For further details, see list of quoted references.
Since the article pertains to health where readers may rely on its information to make health-related decisions, restricting these high-quality references can have profound repercussions. Some editors have cited a series of blog posts and advocacy papers as sources supporting the notion that a neurodiversity-only perspective, which decouples ASD from these terms, is more, or at least comparably, appropriate for the article because of its publicity and acceptance amongst a subset of autistic advocates. However, it has been argued that relying on these sources is problematic for several reasons. First, Wikipedia policies and guidelines consider peer-reviewed sources as the most reliable when available; that blog posts are generally discouraged; and that it is the members of a particular scientific discipline who determine what is considered factual or pseudoscience. Second, while some advocacy sources are peer-reviewed, they are usually advocating for a future change that is not currently established. The dispute has since increasingly been over how Wikipedia's policies and guidelines can be correctly interpreted.
In my view, a failure to properly reflect the international scientific classification in this article will contribute to the stigmatisation of ASD and its treatments to millions of people around the world. Your decision may disproportionately mislead the poorest and highest risk of readers due to economic and educational disadvantages. This will increase morbidity, create chaos in families and drive up health care costs.
While considering each reply, I urge reviewers to carefully consider and weigh in the scientific evidence in regards to their recommendations.
Summary of dispute by Ó.Dubhuir.of.Vulcan
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Yes, as User:Oolong says, some of the dispute seems to concern epistemic injustice concerns and how to interpret standards of evidence here.
There is also definitely a strong debate going on over whether, per established standards of evidence for wikipedia and for medical claims within wikipedia, there is in fact a consensus of reputable sources (especially recent sources) supporting a traditional medical understanding of autism, or whether per such standards of evidence there appears to be a division between traditional medical and neurodiversity-aligned perspectives on autism. — Preceding unsigned comment added by Ó.Dubhuir.of.Vulcan (talk • contribs) 20:14, 20 December 2024 (UTC)
I would like to reiterate that any drop in evidential standards could lead to the inclusion of debunked and dangerous practices, particularly as at least one editor has revealed themselves to be sympathetic toward facilitated communication - an anti-autistic practice which is often falsely claimed to be supported from a neurodiversity perspective - the inclusion of which has already been litigated on Wikipedia. The medical model being poor does not automatically lead to the populist online autism movement being good. Autistic people deserve the same standards as everyone else. 2A02:C7C:9B04:EA00:F104:371A:5F87:5238 (talk) 08:52, 21 December 2024 (UTC)
I don't believe anybody is advocating for reduced evidential standards. The question is about which standards apply to what.
My position on FC is that it is a dubious practice, worryingly open to abuse, but that we need to be wary of over-generalising from the evidence available on it (and that it is worth looking at studies publised since this was last 'litigated on Wikipedia'). Oolong (talk) 11:07, 21 December 2024 (UTC)
Summary of dispute by HarmonyA8
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Summary of dispute by TempusTacet
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Summary of dispute by WhatamIdoing
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I think that only the first three editors in this list (Oolong, Димитрий Улянов Иванов, and Ó.Dubhuir.of.Vulcan) are very relevant. However, I'm willing to help (e.g., to provide assistance with the {{MEDRS evaluation}} of sources). WhatamIdoing (talk) 23:49, 21 December 2024 (UTC)
@Oolong, let me expand on Robert's directions below: Please post your desired changes in the #First statements by editors (Autism) section of this page. It will be clearest if you use the "X to Y" style (as if this were the Wikipedia:Edit requests process) and show your exact suggested wording. You can use Template:Text diff if you'd like to contrast your suggestion with the current paragraph.
Please keep it brief - less than 2000 characters if possible, it helps us help you quicker.
The conflict seems to be very longstanding, and I've only participated in the discussion during the last week, so my understanding of the conflict is very incomplete. A significant piece of it is that there are contrasting approaches to thinking about autism — a medical model and a neurodiversity perspective — and the article currently emphasizes the first of those, which makes it feel unbalanced to others. There are differences of opinion about which views/content are significant (in the NPOV sense) and therefore should be represented in the article; and among the various groups who might seek out the article (e.g., autistic people, family members, allies, different kinds of professionals), some will not find much content, even though there are reliable sources for it. For example, there's little about the lived experiences of people with autism, and some content that one might expect to be touched on with a link to further info (e.g., autistic meltdowns) are totally absent. Arguably, the text is not as accessible to as broad an array of readers as it should be. Some of the conflict seems linked to the role of scholarship. Everyone recognizes that when scholarly sources are available, they're usually the best sources; however, some may think that if content cannot be sourced to a scholarly source, then it shouldn't be included. I recognize that MEDRS guides sources for biomedical info; but some of the relevant info for the article is not biomedical. FactOrOpinion (talk) 04:03, 21 December 2024 (UTC)
I am willing to try dispute resolution, but I have no experience with it. I have read the rules introduced by Robert McClenon below, as well as DRN Rule A, and I agree to these rules. It's not clear to me when I should move to the Zeroeth statements by editors section rather than responding here. Once that's clarified, I'll respond to Robert McClenon's questions in the appropriate section.
Important note: I have no expertise in the subject. I ended up at the Autism talk page because an editor who is autistic posted a concern at the Teahouse about the imbalance in the article and felt that their Talk concerns were not being given due weight, and I hoped that I could be a bit helpful on the talk page. Given the breadth of the disagreement and my lack of expertise, it will be hard for me to suggest specific changes in the article, though I can make more general comments (e.g., comments about whether certain content might be introduced in order to address the needs of diverse readers who'd come to the article seeking information, whether the text is likely to be accessible to such readers, whether I think a given WP:PAG is being correctly interpreted). My guess is that I will not be as active in the discussion as the editors with subject matter knowledge / editors who have a longer history in the dispute, and it may be that my comments will simply be too general to be helpful and that I should therefore bow out. FactOrOpinion (talk) 16:30, 21 December 2024 (UTC)
Summary of dispute by 2409
40E0:102E:C01E:8000:0:0:0
(Pardon. My mobile IP keeps changing). I completely agree to the viewpoints supported by user @Oolong. I also want the people to know that there is no such division between "pathological symptom" and "non-pathological symptom". They are same features of a communication and socialization "disorder" where more than one neurotype is involved. It is the same, impairing symptom that can be credited to either neurotype, but unfortunately attributed to the cognitive minority solely. Although the article covers some aspects of neurodiversity perspective, still its language is too much negative and pathological, which isn't very helpful or uplifting for Autistic individuals. Too much importance given in biological causes and "epidemiology", while the more useful sress should have been on accommodation, accessibility, and AAC (Alternative Augmentative Communication). Trying to conceal the harmful effects of ABA therapies is misleading and un-encyclopedic. 2409:40E0:1F:E636:8000:0:0:0 (talk) 18:07, 25 December 2024 (UTC)
@LogicalLens was this your IP? You don't need to say this on your user page or anything, but just for this conversation it might be good to know because you got involved with the IP, not unless that's personal info and you don't gotta respond idk. Anthony2106 (talk) 11:39, 14 January 2025 (UTC)
Summary of dispute by GreenMeansGo
Please keep it brief - less than 2000 characters if possible, it helps us help you quicker.
Please keep discussion to a minimum before being opened by a volunteer. Continue on article talk page if necessary.
Zeroth statement by possible moderator (Autism)
I am ready to assess whether moderated discussion will be useful to improve the article on Autism and to resolve any content disputes. If we do use moderated discussion, this is likely to be a long mediation, and I will probably have to develop a new set of rules. I know that the rules will include;
Be civil. Civility is required everywhere in Wikipedia, and is essential to resolving content disputes.
Be concise. Long statements may make the poster feel better, but they do not always convey useful information. Remember that an editor who sees a wall of text is likely to ignore it.
Do not engage in back-and-forth discussion. The moderator will ask the questions. (I will be the moderator.) Address your answers to the moderator and to the community.
Comment on content, not contributors. The purpose of moderated discussion is to improve the article, so discuss the article or proposed changes to the article.
Do not make any reports to conduct forums while moderated discussion is in progress. One objective of moderated discussion is to avoid discussions of conduct and to resolve content issues first, because often the conduct issues resolve themselves when the content dispute is resolved.
In the meantime, my first question for each editor is whether you would like to try moderated discussion (mediation) in order to resolve content disputes. If you answer yes, I have a two-part question and another question. The purpose of moderated discussion, or of any dispute resolution, is to improve an article. I will split my usual introductory question into two parts. First, please state what changes, if any, you want to make to the lede section of the article that another editor wants to leave the same, or what you want to leave the same that another editor wants to change. Second, please list the sections and subsections of the body of the article that you want to change. We can go into more detail about those changes later. Third, please provide links to any previous discussions of content or conduct issues about the topic that have not been resolved. I just want a list of all of the previous discussions. Do not comment on them, because I am trying to focus the discussion by asking my usual introductory question (in a two-part form).
Yes, I would like to try moderated discussion. Are you looking for responses as replies here, or in the section below (or...)?
I've never participated in a dispute resolution procedure here (aside from the one linked above which was closed because I didn't get a notification, and didn't know to refresh the page daily, and which I didn't know how to reopen). Also, like many of the parties to this dispute, I am autistic. Explicit instructions will therefore be welcome! Thank you.
Answering your other questions will be complicated, because what really needs to happen involves rather extensive changes. Even small changes have persistently been blocked by parties taking one particular position on this, so moving on to questions around the bigger changes required has repeatedly been stymied.
I asked for specific statements of how the lede section should be revised, and what changes should be made to the body of the article. So far, the statements have not been specific. Please read Be Specific at DRN. I understand that one of the main issues is that the current article, beginning with the lede section, is focused on the medical model of autism, and that there is at least one other perspective on autism that is not medical. If sources that meet the ordinary standard of reliability describe other perspectives and provide evidence that these perspectives are supported by scholarly non-medical sources, then the lede section should describe all perspectives. Discussion of the non-medical perspectives should be supported by reliable sources, and discussion of the medical perspective and any aspects of the medical perspective should be supported by medically reliable sources. That is, discussion of non-medical perspectives is not required to meet the medically reliable standard of sourcing, but the sources must meet the ordinary standard of reliable sourcing.
If an editor thinks that the article should be revised to reflect multiple viewpoints, I will ask that they provide a revised draft of the lede section. We can wait to work on the sections of the body of the article until we have settled on the lede section, and then the body of the article should follow the lede. We need to start with something specific, in this case, a revised lede section. I will also repeat my request that each editor provide links to all of the previous discussions of how to revise this article, so as to provide a better overview of the issues.
I would prefer that statements go in the sections for the purpose, such as First statements by editors (Autism), because that is what they are for. However, I will not enforce rules about where to make statements, as long as basic talk page guidelines are met.
After I see at least one specific proposed revision to the article, preferably a draft rewrite of the lede section, I will know better whether DRN is a place to discuss the issues. Are there any other questions? Robert McClenon (talk) 18:05, 25 December 2024 (UTC)
Thanks @Robert McClenon! That helps clarify matters, including the question of evidence required for non-medical perspectives, which has been a source of much contention over the years.
I will see if I can draft more detailed proposals tomorrow in the appropriate section; as I said earlier, part of the problem has been that the clash of viewpoints (with a supporting clash of readings of Wikipedia guidelines) has caused so much friction that it has been difficult to move on to the details of the rather large (and very overdue) project of rewriting and restructuring most of the page! I do at least have some fairly solid ideas about the lead, but of course, ideally the lead should reflect the rest of the article... Oolong (talk) 19:52, 25 December 2024 (UTC)
@Oolong@Robert McClenon I have made a semi protected edit request which is phrased like the follows (sample):
" Autism, Autism spectrum condition (ASC), Autism spectrum disorder (ASD), or Autism Spectrum (AS) is a set of neurodevelopmental conditions, which have been described variously as a disorder, a condition, a valid human neurotype, and a socio-cultural misfit. No two Autistic persons are same, differing in their abilities and inabilities in multiple dimensions, and usually show a spikey or highly uneven cognitive profile. Many Autistics are capable of reading, writing, speaking clearly, or taking part in logical arguments, while having unnoticed deficits in working memory, information filtering, gross or fine motor skills issues, executive functions, sensory issues, trouble making eye contact or reading facial expressions etc. On the other hand, in some Autistics the deficits or differences can be immediately visible. In such cases the strengths might be unnoticed or ignored. Although an Autistic person may fall somewhere in between- and described better through a multidimensional approach than a unidirectional or linear "mild" vs "severe" categorization. Autistics often use repeatitive behaviour as a means of coping mechanism, and often requires structure and predictability to cope up. Autism is sometimes classified as a hidden disability or an invisible disability, as its features could be not immediately noticeable, and in some cases highly masked or camoufledged. Autistics may differ in the amount and nature of support they need in order to thrive and excell. Autism has close overlaps with specific learning disabilities (Such as dyslexia or dyscalculia), Personality disorders (Schizoid personality disorder, Pathological Demand avoidance), etc. that makes it often hard to differentiate from other psychological diagnoses. Autistic people are valuable member of society, regardless of their talents or impairments. "
1. what changes, if any, you want to make to the lede section of the article that another editor wants to leave the same ====
The overall framing of the lead is very much within the medical model of autism, taking for granted various things which are hotly contested in the wider world - particularly among autistic people, but also among researchers in this field.
Let's take the opening paragraph.
Autism spectrum disorder (ASD), or simply autism, is a neurodevelopmental disorder characterized by repetitive, restricted, and inflexible patterns of behavior, interests, and activities; deficits in social communication and social interaction; and the presence of high or low sensory sensitivity. A formal diagnosis requires that symptoms cause significant impairment in multiple functional domains, in addition to being atypical or excessive for the person's age and sociocultural context.
I've highlighted the particularly contentious terms! Essentially, this paragraph takes the mainstream psychiatric perspective on all of these things for granted.
Here's one alternative version, which I contributed to in 2022, with instances of more neutral terms highlighted:
The autism spectrum, often referred to as just autism or in the context of a professional diagnosis autism spectrum disorder (ASD) or autism spectrum condition (ASC), is a neurodevelopmental condition (or conditions) characterized by difficulties in social interaction, verbal and nonverbal communication, and the presence of repetitive behavior and restricted interests. Other common signs include unusual responses to sensory stimuli.
Note that for the most part these terms convey the same information, without assuming a particular interpretation is the correct one. Condition is often thought to be a slightly less value-laden equivalent of disorder,[1] although arguably the difference is marginal. The hypothesis that autistic people have inherent deficits in social communication and interaction has been disproven quite convincingly (see double empathy problem); the difficulties, however, certainly remain in many contexts, and are in practice all that diagnosticians can go by on this front. There are all sorts of issues with applying the term symptom to the ways that autism manifests, starting with the assumption that they're problems, as opposed to e.g. coping strategies or objectively neutral characteristics.
I recently edited the third paragraph simply to accurately reflect views associated with neurodiversity, correcting text based on blatant misunderstandings; variations on these edits have now been reverted at least four times, including after they have been restored by other editors. These reversions have not been accompanied by sensible edit summaries, instead claiming for example that they are ideologically motivated, and that my references (an academic textbook and a peer-reviewed paper researching community views) are somehow inadequate. I am aware that these reversions are starting to suggest that administrators' noticeboard for incidents may be a more appropriate venue for resolving these issues.
The final paragraph of the lead is dubious, and largely reads like an advertisement for applied behavior analysis
Second, please list the sections and subsections of the body of the article that you want to change.
Classification goes into enormous technical detail, and seems to overlap heavily with both
diagnosis and signs and symptoms.
We need to cover common aspects of autistic experience somewhere (see Talk:Autism#Glaring Omissions for some of these; there are many more) and it is not clear if they can fit in the above section, although they may be at least as important, just because they are not adequately covered by the current editions of diagnostic manuals.
Possible causes should obviously be no more than 2-3 paragraphs at most, in line with summary style. Likewise epidemiology.
Management is an awful framing; autism is a fundamental difference in a person, not an illness to be managed. I note that this heading is absent from the gender dysphoria entry. Perhaps it would be constructive to replace this section with something around access: access to healthcare, education, workplaces and so on.
Prognosis probably doesn't warrant a section at all: it's lifelong. If it's going to be there, it needs to be completely rewritten.
History and especially society and culture probably deserve to be significantly higher up in the article.
Re your third question, I provided various links in my original submission - are those specific enough?
My explanation about source reliability is my own interpretation, based on the principle to use common sense. Other editors may disagree, but it is the rule that will be in place while I am moderating this discussion.
The unregistered editor is strongly advised to register an account if they wish to take part in this mediation. Their IPv6 address has changed between the time that this discussion was created and the time of this post. It is both difficult to remember IPv6 addresses and difficult to communicate with shifting IPv6 (or IPv4) addresses.
The requested rewrite has no references. It also includes a statement of opinion that is not a summary of existing knowledge and is therefore not encyclopedic. On the other hand, the first sentence of the proposed rewrite is, in my opinion, a good starting point for a rewrite of the lede. The later sentences about differences between different autistic persons are, in my opinion, a good idea to be included somewhere in the article, but not necessarily in the lede paragraph.
In the above paragraph, I am taking a more active role in trying to lead this discussion than I usually take. If the participants agree with my taking an active role, I will write a new set of rules providing for a semi-active role by the moderator. If the participants would prefer that I be less active, I will step back somewhat, and will implement DRN Rule A.
So I have issues with the proposed lede change, with interpreting the scientific consensus classification as a "medical model", among other issues. I'd like to clarify these per my involvement here, but I need time to formulate a reply. I saw an article stating that editors must reply within 48 hours but I cannot consistently do this with my time constraints. May I ask if this will be a significant issue and if it's a requirement can it not be so strict under the circumstances? Thanks. Димитрий Улянов Иванов (talk) 16:32, 26 December 2024 (UTC)
The provision about responding within 48 hours is in DRN Rule A, which is a standard rule but is not always used, and I have not yet specified what rules we are using, so there isn't a 48-hour provision at this time. Will 72 hours work better? Robert McClenon (talk) 17:11, 26 December 2024 (UTC)
72 hours should be fine in general. I plan to respond quicker than that if I can of course, my only concern is that I occasionally am not free to reply within 72 hours as sometimes I won't be able to until the weekend. Apologies if this is causing some issues. I'm much more free now with Christmas over so I think it'll mainly become an issue if our discussions extend much into January. Димитрий Улянов Иванов (talk) 18:49, 26 December 2024 (UTC)
"The requested rewrite ... includes a statement of opinion." - Which part is a statement of opinion? I am not disputing your assessment; rather, I want to make sure I understand your point correctly. Thanks! - Mark D Worthen PsyD(talk)[he/him]20:27, 27 December 2024 (UTC)
@Robert McClenon Hi there, I have a question following your third statement. I would like to clarify the issues with the proposed lede change, and with the interpretations of "models", but I'm unsure as to where I should write this out here and if this is necessary to do at the moment. Димитрий Улянов Иванов (talk) 23:33, 29 December 2024 (UTC)
@Robert McClenon Respected editor, I have noticed a miscommunication. Although I could not read the rules and formats of dispute resolution; and also did not took part in the dispute resolution due to mental health issues, I want to notify that since some of my talk page comments have been marked as relevant by various editors; I plea for forgiveness regarding unintended miscommunication(s). I have just discovered at least two editors have wrote regarding "at least one user not being familiar" (probably I am the intended user) "not knowing" the use of "et al". But this is totally a miscommunication mainly originating from my side.
I think a very serious miscommunication has happened. Please read my comment https://en.wikipedia.org/wiki/Talk:Autism#c-RIT_RAJARSHI-20241213144000-Димитрий_Улянов_Иванов-20241213141800 where I explicitly wrote "Thank you for explaining why you used 'et al'. I know et al means colleagues but I was expressing individual opinion." What I tried to mean that, I know the meaning of latin phrase et al. which means "colleagues" or "coworkers" but since I expressed my individual opinion, I perceived calling me as "et al" to be weird. I was also super stressed out and mentally unstable after entering that discussion so I decided to not further proceed with this stressful topic.
Hi, sorry to ask in this rather odd place, but something seems to have gone wrong with this page - when I click 'edit' on any of the relevant sections, it goes to either edit the entire page, or a different, unrelated section (and either way, the visual editor isn't available).
I assume something has gone weird with the markup somewhere, but I have no idea how to diagnose problems of this type! Oolong (talk) 08:59, 2 January 2025 (UTC)
Try a "hard refresh" (⌘+⇧ Shift+R on a Mac; I don't know what the equivalent is on Windows). If that doesn't work, drop by my talk page with a link to the section you want to click the [edit] button in, and then tell me which section actually opens for you, and what kind of a computer you're using. WhatamIdoing (talk) 09:29, 2 January 2025 (UTC)
I think a very serious miscommunication has happened. Please read my comment https://en.wikipedia.org/wiki/Talk:Autism#c-RIT_RAJARSHI-20241213144000-Димитрий_Улянов_Иванов-20241213141800 where I explicitly wrote "Thank you for explaining why you used 'et al'. I know et al means colleagues but I was expressing individual opinion." What I tried to mean that, I know the meaning of latin phrase et al. which means "colleagues" or "coworkers" but since I expressed my individual opinion, I perceived calling me as "et al" to be weird. I was also super stressed out and mentally unstable after entering that discussion so I decided to not further proceed with this stressful topic. RIT RAJARSHI (talk) 16:27, 31 December 2024 (UTC)
I think a very serious miscommunication has happened. Please read my comment https://en.wikipedia.org/wiki/Talk:Autism#c-RIT_RAJARSHI-20241213144000-Димитрий_Улянов_Иванов-20241213141800 where I explicitly wrote "Thank you for explaining why you used 'et al'. I know et al means colleagues but I was expressing individual opinion." What I tried to mean that, I know the meaning of latin phrase et al. which means "colleagues" or "coworkers" but since I expressed my individual opinion, I perceived calling me as "et al" to be weird. I was also super stressed out and mentally unstable after entering that discussion so I decided to not further proceed with this stressful topic. RIT RAJARSHI (talk) 16:34, 31 December 2024 (UTC)
Thank you, you are perfectly correct. My apologies. More accurate to say that the discussion about the use of et al was an irrelevant and separate issue to the topics here, and was due to a miscommunication rather than you being unfamiliar with the term. I would forgive you but I don't think you've done anything wrong here at all! Димитрий Улянов Иванов (talk) 17:27, 31 December 2024 (UTC)
Please read DRN Rule G. This is the new set of rules for this mediation.
Please sign all of your posts. It is more important to sign your posts than to put them in the correct sections, although both are a good idea. If you forget to sign your post, the rest of us may not know who posted it.
In the proposed lede by the unregistered editor, the last sentence reads:
Autistic people are valuable member of society, regardless of their talents or impairments.
That is true but not encyclopedic, because it does not summarize existing knowledge. It states a moral principle that governs development of the encyclopedia, and should also apply in the larger society. It is also not in a form that is verifiable because it is not attributed to anyone but in wikivoice.
I would still like a list from each editor of links to all the previous discussions about the issues that are being discussed here. I know that some of the discussions have been mentioned in various statements, but I would like each editor to provide a list, in one place, without commenting on the discussions, and without concerning about whether another editor is also listing the same discussions. I just want this for background material.
I am making a rather late entry into this process and am not sure if putting this here is correct. There are a number of aspects that I would like to comment on. I think that anyone with any knowledge of autism will have noticed that autism is not merely, or even primarily, a medical condition, even though it is diagnosable by clinicians and has diagnostic criteria. It has sociological, disability, cultural and identity dimensions. I have had two brain-involving medical conditions, autism and stroke. I have an identity as an autistic person, but no identity as a stroke survivor. Both are medical conditions, diagnosable by clinicians, but only autism has the additional, extra-clinical, dimensions I have described. The Wikipedia article has suffered, in my opinion, from too great an emphasis on the medical aspects of autism, to the extent that some editors have excluded the other aspects of autism from prominent parts of the article, such as the lead, or treated them as though they were unsupported by reputable references, or were 'fringe' in nature. Furthermore, too literal use of pathologising phraseology, gleaned uncritically from diagnostic manuals, introduces wording to the article which is unnecessarily offensive to autistic people, when less offensive wording, while retaining the original meaning, could have been employed. Efforts to moderate the offensive wording have been repeatedly reverted.
I have noticed that deafness, a condition which, like autism has cultural, communication, disability and identity dimensions, is treated in a way within Wikipedia (Deafness) that gives equal treatment to the purely medical and the sociological aspects. Though the deafness article is very much shorter than the one on autism, it struck me that the treatment of the subject might act as a useful paradigm. Urselius (talk) 13:59, 28 December 2024 (UTC)
List of discussions from WhatamIdoing
I think the present dispute started about two months ago:
I think a very serious miscommunication has happened. Please read my comment https://en.wikipedia.org/wiki/Talk:Autism#c-RIT_RAJARSHI-20241213144000-Димитрий_Улянов_Иванов-20241213141800 where I explicitly wrote "Thank you for explaining why you used 'et al'. I know et al means colleagues but I was expressing individual opinion." What I tried to mean that, I know the meaning of latin phrase et al. which means "colleagues" or "coworkers" but since I expressed my individual opinion, I perceived calling me as "et al" to be weird. I was also super stressed out and mentally unstable after entering that discussion so I decided to not further proceed with this stressful topic. RIT RAJARSHI (talk) 16:25, 31 December 2024 (UTC)
@WhatamIdoing ::I think a very serious miscommunication has happened. Please read my comment https://en.wikipedia.org/wiki/Talk:Autism#c-RIT_RAJARSHI-20241213144000-Димитрий_Улянов_Иванов-20241213141800 where I explicitly wrote "'''Thank you for explaining why you used 'et al'. I know et al means colleagues but I was expressing individual opinion.'''" What I tried to mean that, I know the meaning of latin phrase ''et al.'' which means "colleagues" or "coworkers" but since I expressed my individual opinion, I perceived calling me as "et al" to be weird. I was also super stressed out and mentally unstable after entering that discussion so I decided to not further proceed with this stressful topic. RIT RAJARSHI (talk) 16:31, 31 December 2024 (UTC)
@RIT RAJARSHI, please do not worry. I added this note so that Robert would know that it was a perfectly innocent and unimportant thing, so he would focus on the other (non-tangential) comments. WhatamIdoing (talk) 19:33, 31 December 2024 (UTC)
Response and list of discussions from FactOrOpinion
Since you (Robert McClenon) have posted a "Third statement by moderator," I'm guessing that I should respond in this "Third statements by editors" section, even though I never posted anything in the First or Second statements sections. I've read DRN G and agree to it. As I noted earlier, I haven't been involved for that long. I haven't read any of the archived discussions. I have only read comments on the current talk page, though not all of them, and I responded in even fewer sections. My list:
I made I talk page topic where I complained about "symptoms" being in the lead, but because I'm on phone and it's allmost 3:00 ill find it later. Anthony2106 (talk) 15:47, 31 December 2024 (UTC)
Fourth statement by moderator (Autism)
At this point, I want to clarify the overall approach that we are taking or will take. First, is the main issue the overall viewpoint with which autism is discussed? The current article discusses autism almost entirely as a medical condition. Is the main issue that some editors think that the article needs an overall rework to state that there are reliable sources that describe autism as a medical condition or disorder, and that there are reliable sources that describe autism as a human condition or a neurotype. Is that the main issue? If my understanding is correct, then I agree, because the neutral point of view is to describe the different views of different reliable sources. If that is the main issue, do we have at least rough consensus that the article should be revised accordingly? If there is a rough consensus that the article should be reworked in that way, then we need to rewrite the lede section first, and then to rework the rest of the article to be consistent with and expand on the lede. If there is disagreement with that approach, then a Request for Comments will be needed to formalize the change in viewpoint, but I will want the RFC to provide a revised lede, rather than just a statement of principle. So we need to start work on rewriting of the lede if we agree that the article should describe the multiple viewpoints, of which the medical model is one.
So I will restate my first question, which is whether our objective is to revise the perspective of the article to describe multiple viewpoints. Please at least answer yes or no. If you answer no, please state what you think we should be doing to improve the article (or to leave it alone).
If we have at least rough consensus that the end objective is to improve the article by describing other views of autism besides the medical model, then we will proceed to rewrite first the lede and then the body.
A second question has to do with a comment that efforts to neutralize the wording of parts of the article (to make the autism-neutral) have been reverted. If so, who did the reverting? I would like to invite any reverting editors to participate in this discussion.
Yes, revising the article to include information about autism as a human condition or a neurotype, supported by citations to the best reliable sources, will improve the article. Here is a quote from a reliable source that highlights this issue:
Autistic spectrum disorder (ASD) which is associated with alterations in structures and mechanisms underlying behavior, has traditionally been viewed as a harmful condition. However, there is a contrary position, which may be particularly relevant to milder cases of ASD. In this view, the positive attributes associated with ASD (e.g. high levels of creativity and mathematical ability) are emphasized and neurodiversity is celebrated, shifting the onus onto neuro-typical society to accommodate neuro-atypical persons. However, despite the growing prevalence of persons with ASD who choose to see themselves as situated on a spectrum of normal variation, there are many individuals and families who seek health interventions or advocate for more scientific research to cure or prevent ASD. These disagreements are perhaps indicative of the heterogeneous and dimensional nature of both ASD and its impact; in severe cases care rather than accommodation is required. Thus, judgments about whether or not an entity should be included in the nosology require careful assessment of the extent to which social accommodation is possible. [references omitted; quoted text is on pp. 897–898 in: Stein DJ, Palk AC, Kendler KS. What is a mental disorder? An exemplar-focused approach. Psychol Med. 2021;51(6):894-901] - Mark D Worthen PsyD(talk)[he/him]05:07, 2 January 2025 (UTC)
Note: In my first sentence (above), I changed the hyperlink destination for reliable sources from WP:MEDRS to WP:RS because I agree with Oolong (below) that, as WP:MEDRS itself indicates in the first paragraph, biomedical information in any article should comply with WP:MEDRS, and general information in medical articles should comply with WP:RS. - Mark D Worthen PsyD(talk)[he/him]15:30, 2 January 2025 (UTC)
My answers:
Question 1: Yes, I think that this (medical vs non-medical POVs) is the main dispute. However, because WP:LEADFOLLOWSBODY, I suggest that it would be more appropriate to re-write the body first.
Yes, the main issue is as you described; I'm not sure what determines a 'rough consensus' exactly, though. We have many people making the case for it, with one extremely strident dissent from that potential consensus; and one or two other editors broadly agreeing with him, without getting very much involved. This dispute, in a broad sense, predates the six months or so of his active involvement, though - a look through the Talk:Autism/Archive index (and, for completeness, Talk:Autism spectrum) will show that closely related arguments have been cropping up regularly since, I suspect, the start.
One recurring theme has been the over-application (from my perspective, at least) of WP:MEDRS. The guideline itself states that "Biomedical information requires sourcing that complies with this guideline, whereas general information in the same article may not" - but the boundaries of what does and does not fall under that rubric are not always clear. In this case, we have to ask whether the experiences and perspectives of autistic people ourselves are 'general information' or whether they are, perhaps automatically "Attributes of a disease or condition". There are likely to be grey areas like meltdown and burnout, where it is not necessarily clear which kinds of reliable sources we can lean on.
Whatamidoing has a point about the lead vs the entire article; it is traditional for the lead to follow the lead of the article as a whole, as it were. However, to the extent that we are talking about language use, perhaps it makes sense to make the lead more balanced even before we fix the whole of the rest of the article - which is an absolutely huge job, because the article is extremely overlong, and dreadful on multiple levels: repetitious, poorly structured, self-contradictory, out-of-date, with a series of gaping holes, and overwhelmingly written in a way that takes a pathologising perspective for granted. My impression is that it is so poorly maintained largely because disputes along these lines have consumed so much of the energy that could otherwise have gone into improving the article.
In case it's of interest, I ran a survey a couple of months to gather opinions and impressions of the entry (and Wikipedia's autism coverage more broadly) - I wanted to make sure I wasn't imagining how bad it was! You can see the full responses here, but the standout result is that out of 31 respondents who'd seen it and formed an opinion, the mean rating for the question 'How well does the main Autism entry reflect your own experiences and understanding of autism?' was 3.25 out of 10.
Replying here to correct egregiously misleading statements about me. Several other editors, other than myself, have extensively reverted edits on the article, as has the above poster, but this context has been omitted. Furthermore, the list of reversions cited are also implicated in different topics, not just the ones in this mediation, making the implication of "one editor" reverting things a generalised and selective representation of the edit history on the article. Димитрий Улянов Иванов (talk) 11:20, 2 January 2025 (UTC)
For the moderator my lie was here:[5][6] Sorry this last one was rude:[7] but I don't undo too much. Anyway lets not talk about each other too much because the moderator said "Comment on content, not contributors". Anthony2106 (talk) 11:53, 2 January 2025 (UTC)
No problem, I agree we should focus on commenting on the content, i was only responding to the implied misconduct accusations about me as I feel that these have the potential to undermine a constructive mediation. Димитрий Улянов Иванов (talk) 12:32, 2 January 2025 (UTC)
Hi, I see you are replying to me directly. I think this is specifically what Rule G.11 is about, but as long as we're doing this: based on searching the edit history, it looks like there have been a total of 35 reversions over the last six months, 29 of which (83%) were by you, while around half of the remainder were reversions of your reversions.
Perhaps a more thorough systematic search would turn up slightly different results; perhaps I have missed something; but I do not think that any part of my comment above is 'egregiously misleading'.
I think that your dissection of the problem is entirely accurate. Wikipedia guidelines on how to treat medical conditions have been used to assert that anything not adhering strictly to these guidelines is either inadmissible, or be treated as subordinate, or more extremely as 'fringe'. Autism is classed as a neurodevelopmental condition that is amenable to clinical diagnosis, but it also has social, communication and identity aspects that most medical conditions do not possess. As an example, the medical model highlights deficits in communication, but research has shown that communication between autistics is just as accurate as communication between allistics, problems exist only when autistics try to communicate with allistics. This raises the question, does this indicate a deficit in autistic communication, or only a difference in communication styles? To my mind there are two current viewpoints concerning autism, both having reputable supporting literature, the medical model and the neurodiversity model. Both are useful methods of describing autism, they even overlap to some extent, both have validity and both should be treated in a similarly full, dispassionate and encyclopaedic way on Wikipedia. Urselius (talk) 11:02, 2 January 2025 (UTC)
"autistics try to communicate with allistics" is the double empathy problem, you should of linked that because I don't think I'm allowed to edit your comment. You said "This raises the question, does this indicate a deficit in autistic communication, or only a difference in communication styles?" this indicates a difference because I like talking to autistic people a little bit better or at least I seem to make less mistakes (but non-autistic familiy members (or close people) always understand you because they know you well). autistic people say the neurotypical's are puzzling (they are just very uniform) the neurotypical's think we are puzzling, so they said we are disorded. We aren't but they aren't gonna change the name. If we were all autistic then no one would be "disorded" right? but that's off topic. Anthony2106 (talk) 11:35, 2 January 2025 (UTC)
I think that a move away from introducing autism as it is now in the article, would be beneficial. At present, we effectively have, Autism is ... then the reader is immediately launched into verbatim or edited definitions from diagnostic manuals, eventually followed by some mention of non-medicalised aspects, as a sort of aside. This gives the medical model of autism a rather erroneous place as THE defining model. The introduction should start with content that is not weighted in one direction, that all can agree on. I would see this as an expansion of something along these lines: "Autism is a neurodevelopmental lifelong condition characterised by differences in brain architecture and function. It has been linked to genetic and environmental factors and is defined by a range of behavioural, communication and sensory features. These features can vary widely between autistic individuals, hence autism is called a spectrum condition". "Two differing interpretations of autism are currently recognised, the medical model and the neurodiversity model." Following some similar sort of opening, both models can be described, beginning with the medical model, where the material from the diagnostic manuals can go, with the neurodiversity material following. Most of the aspects in the body of the text can follow roughly the same structure. Urselius (talk) 15:10, 3 January 2025 (UTC)
Fifth statement by moderator (Autism)
Thank you for your responses. I think that there is agreement that our objective is to change the focus of the article from viewing autism purely as a medical disorder to presenting multiple viewpoints on autism as they are described by reliable sources.
I would like to be able to close out the moderated discussion and resume normal editing to resume in no more than two to four months. I know that it may take longer than this to finish rewriting the article, but I would like to be able to step back from the rewrite in less than six months.
I am aware that it is the recommended usual practice that lead follows body. I think that this is a special case in which a rewriting of the lede may simplify rewriting the body. If there is opposition to the change in viewpoint, then revisions to the sections of the body may be reverted as inconsistent with the lede, which will require multiple RFCs to formalize the change in emphasis. It is true that if the lede is rewritten first, it may then be later necessary to do a second rewrite to be consistent with the revised body, but I would like to get the change in viewpoint established earlier, rather than doing it on a piecemeal basis. If anyone knows of a way to formalize the change in viewpoint other than by changing the lede, I am willing to consider it. I don't like the idea of an abstract RFC saying to change the emphasis of the article. I am ready to consider a coordinated approach to rewriting the body first, but I would like first to see a description as a coordinated approach. I am aware that we may need to revise the lede twice, once at the beginning and once at the end. I just don't see a way to get the rewriting of the body on a consistent basis without first rewriting the lede the first time.
I will restate the rule of reliability of sources. When autism is discussed as a medical condition, sources must satisfy the standard of medically reliable sources. When autism is discussed as a human condition, or in a cultural context, sources must satisfy the general standard of reliable sources. In particular, material that is sourced to sources meeting the general standard of reliability but not the medical standard of reliability should not be rejected unless the context is medical or psychiatric.
Please do not engage in back-and-forth discussion after responding to my questions. I have provided a space for back-and-forth discussion.
72 hours have not passed per the rules since your last statement, I'm still in the process of writing a response. There are substantial issues with the arguments for the proposed lede changes which have remained unaddressed. These include the lack of reliable sources opposing the global scientific consensus, and that the consensus is demonstrably not isolated to a medical context, and so the medical interpretation of the evidence is a gross misrepresentation for basis to rewrite the lede. May I elaborate on these issues in a statement without this DRN prematurely concluding and normative editing resuming? I did make a request in a prior reply if I can do this, but I didn't receive any response. Thank you. Димитрий Улянов Иванов (talk) 16:05, 3 January 2025 (UTC)
2. Would it be appropriate to reinstate the {{unbalanced}} tag on the autism page while this work is ongoing? We seem to have something close to a consensus that it is indeed unbalanced. Oolong (talk) 08:25, 4 January 2025 (UTC)
Statement 5.1 by moderator (Autism)
Perhaps I wasn't clear about at least one aspect of my approach to the lede rewrite. After the draft revision of the lede is developed, I recognize that there may be disagreement with it. If there are disagreements with it, there will be a Request for Comments to obtain community input and establish community consensus. While the RFC is in progress, other discussion of the lede will be on hold, although there can be discussion of edits to the sections of the body of the article. So this DRN will not conclude prematurely. I hope that this is clear. A rewrite of the lede will be a draft rewrite, to be followed by an RFC, which will accept it or reject it. This will give editors who agree with the draft and disagree with the draft rewrite thirty days to present their cases to the community. Any decisions as important as changing the lede will not be made by local consensus here but by the community. Are there any further questions? Robert McClenon (talk) 17:47, 3 January 2025 (UTC)
I have residual concerns. First, from my understanding, the rules state that we have 3 days to make a statement responding to the moderator's statement. However, just one day after, you issued statement 5.0 in which you basically concluded that there is agreement to move the article away from a "medical position". This is not a fair assessment as I was in the midst of writing my statement to demonstrate how that assertion is highly inaccurate as well as provide further countering evidence. As such, there is no such agreement, making it as well as support for the medical interpretation of the evidence, prematurely concluded. Additionally, in my initial statement I cited the citations demonstrating the global scientific consensus and Wikipedia guidelines and policies on its importance, which have not been acknowledged in any responding statements as of yet. Please may you redact these conclusions, or alter them accordingly, based on considering my newest statement?
Second, we initiated this DRN process to seek an assessment from a neutral moderator because discussions on the talk page have been marred by persistent misrepresentation of arguments and citations, among other issues. Does "community consensus" in this context refers solely or primarily to the participants in this DRN from the article talk page? Without relying on external mediators, this risks replicating the same issues in the talk page. We would just be reiterating the same points already made in the talk page to the same users.
And I seem to be the only active participant for maintaining the current general framing of ASD in the article. Numerous other editors who indicated their support for maintaining the current framing are not included in this DRN. I hope you can understand my concerns that this would ultimately skew any perceived consensus. Димитрий Улянов Иванов (talk) 18:34, 3 January 2025 (UTC)
Fifth statements by editors (Autism)
I like your proposed plan and your rationale, i.e., to start with a new lede, that will likely require revision down the road, but that will serve as a framework for revising the body of the article. I also appreciate your clear, coherent statement about reliable sources. Thank you for your hard work on this. -- Mark D Worthen PsyD(talk)[he/him]15:54, 3 January 2025 (UTC)
Your proposal makes sense to me, and I am quite grateful for your willingness to devote such a long period of time to moderating the discussion so that headway occurs in improving the article. As I said earlier, I can only contribute in limited ways here, but I will continue to read the exchanges, and will contribute when I think I can be helpful. FactOrOpinion (talk) 19:58, 3 January 2025 (UTC)
I also support your proposal, and (just to be clear) your decision to use Rule G. There is a lot of work to be done, and I am hopeful that we can make progress a lot faster once we have overcome some of the roadblocks preventing edits to date.
Dmitriy's concern about being the only neurodiversity-opposing participant in this process is understandable - I did try to include at least two others when I initiated this, but they have not joined. This is one reason I suggested notifying Wikipedia:WikiProject Autism; historically, other editors broadly sharing his outlook have been much more involved. It might be best if he were not the only participant representing the pro-pathologisation side of this discussion, given our goal is presumably to produce an article which is acceptable to people with a range of personal views on these subjects.
--Oolong (talk) 10:41, 4 January 2025 (UTC)
Sixth statement by moderator (Autism)
I will again restate, and maybe clarify, about consensus. Any contested changes to the article will be made only by community consensus, which is obtained by an RFC, which runs for thirty days and is formally closed by an uninvolved editor. A majority of the editors in this DRN is only a local consensus and will not change the article substantively.
I would like each editor who agrees that the focus of the article should be changed so that it describes both the medical paradigm and the neurodiversity paradigm either to draft a revised lede section for the article, or to provide a plan for a coordinated effort to rework the sections of the body of the article. I think that revision of the lede should precede the revision of the sections of the body of the article, but am ready to consider a plan for a coordinated effort to rewrite the sections of the body first. Editors who want to leave the article more or less as it is may either provide a statement supporting their view, or nothing.
Robert McClenon (talk) 04:37, 6 January 2025 (UTC)
In DRN Rule G, you said Do not engage in back-and-forth discussion to statements by other editors; that is, do not reply to the comments of other editors. That has already been tried and has not resolved the content dispute (since talk page discussion is a precondition for discussion at DRN). Address your comments to the moderator and the community. Except in a section for back-and-forth discussion, replies to other editors or back-and-forth discussion may be collapsed by the moderator and may result in a rebuke. Would you clarify when it's appropriate to have a back-and-forth discussion with someone in the Back-and-forth discussion section? For example, is it fine for editors to use this section whenever we want to respond to something another editor wrote, or — given your point that back-and-forth discussion on the Talk page already failed to resolve the content issues — would you like us to reserve the use of this section to limited situations, and if so, would you briefly describe these situations?
You emphasized "Comment on content, not contributors" several times in the DRN rule. If I think an exchange is veering into that territory, is it acceptable to give a gentle reminder, or is that something that I should leave entirely to you?
I lack the knowledge base to "either to draft a revised lede section for the article, or to provide a plan for a coordinated effort to rework the sections of the body of the article." Is it acceptable for me to contribute in smaller ways when I think I might be helpful, or would you rather that I simply step back from any active participation (perhaps with the thought that such limited participation is as likely to distract as to help)? If it's the latter, I will likely continue to read some of the exchanges for my own learning, but I'm totally fine with it if you'd rather that I no longer comment.
From editors who are both dissatisfied with the article and also have specific ideas about what they want to see changed:
They want the article more prominently reflect a POV that is popular in the neurodiversity movement (e.g., as it appears on social media, but also in some scholarly sources). This POV says that autism is part of each individual's personality and identity. If you could get rid of autism, then you would be getting rid of the autistic person's true character and identity.
This POV also believes that autism is good. Everything about autism is to be presented in as positive a light as possible. For example, we should say that someone "prefers eating the same food every day" or "his favorite food is plain pasta" instead of being negative and saying that person is "at risk of scurvy and other vitamin deficiencies because he refuses to eat anything except plain pasta, rice, and eggs"[8]. We should say that someone "has a strong desire to talk about their particular interests" instead of "fails to engage in reciprocal social communication by noticing that the other person is not interested in hearing a long lecture about the exact differences between Lego Mindstorms robots and Lego Education Spike Prime robots, and thus changing the subject to something the other person would enjoy".
By default, if isn't good, then it isn't autism. Any 'bad' things should be called a "co-occurring disorder". If something negative cannot be omitted and cannot credibly be claimed to be a co-occurring disorder instead of autism, then it must be presented sympathetically, and the autistic person should not be blamed or shamed in any way. Most/all distress experienced by autistic people is caused by society's failure to provide sufficient accommodations and to value autistic people's views and perspectives, so "society" can be blamed and shamed.
"Treatment" is not wanted, needed, or effective. ABA in particular is evil. If a parent or caregiver wants an autistic person to quit engaging in a behavior (e.g., removing their clothes in public), then the parent should simply figure out what prompts that behavior (e.g., clothes that are too hot, itchy, stiff, loose, tight, synthetic, smelly, colorful, wet, stained, torn, sewn, peed-in) and proactively remove the prompt, so that the child won't think about doing that.
Overall, autistic people (adults) are to be presented as capable, autonomous, valuable people who can do great things. Towards this end, the article should focus primarily on the type of autistic people who are similar to Wikipedia's many autistic editors (e.g., having good verbal skills and having normal-to-high IQ) and less on autistic people who are intellectually disabled, who cannot effectively communicate their needs, who require round-the-clock, lifelong custodial care, or who hit or kick people if they are startled or their routine changes. If we write about autistic people who cannot be left in a room with windows because they will break the glass, then neurotypical people will get bad ideas about their co-workers or the autistic people they meet in the community. If there is going to be a bias in the article, that bias should favor making life better for autistic people who are high achieving (or at least living independently).
For editors who are dissatisfied with the article but not proposing specific changes:
I think they see autism as a maladaptive biological situation that is not synonymous with the person's true character and identity. For example: Eating a wide variety of foods/flavors/textures is adaptive; having sensory issues that restrict you from eating whatever food is available is maladaptive and therefore a disorder; you would not stop being "you" if you could eat a wide variety of foods without severe anxiety or physically gagging.
I think they also believe that the article should present a significant amount of information about "profound" or "severe" autism, and that autism be presented as a medical disorder serious enough to result in an average lifetime cost (in the US) of US$2,200,000 per autistic person with intellectual disabilities, and US$1,400,000 per autistic person without an intellectual disability.[9]
The neurodiversity view does not view autism solely as a positive thing but as a neutral way of being that can come along with challenges as well as positive and neutral aspects[10]. This has been pointed out repeatedly in these discussions here. LogicalLens (talk) 03:26, 10 January 2025 (UTC)
This (Dwyer's) source gives what it calls an "interactionist definition of a neurodiversity approach". This might (or might not) be Interactionism (nature versus nurture). I think it might be a possible compromise model for us, as it is flexible and not extreme in either direction. He describes it as a middle ground between biological essentialism and biological denialism. It's okay to medically manage or treat features of autism that you dislike, and okay to not treat features that you like. We can predict that editors who hold one POV or the other will want the article to "flex" in the direction of their POV, so this alone will not resolve the dispute.
The main focus on the neurodiversity side appears to be marketing: "the disabled individual should not feel they are deficient". We are to use euphemisms, e.g., that a person has "areas of challenge" rather than "deficits", to achieve this end. We are to have "a focus on positive aspects of neural differences" and to remember that the goal is "promoting well-being". One of the main targets of such marketing is parents caring for the kind of autistic editor who won't be editing Wikipedia, or reading it. He says that "much opposition to the neurodiversity approaches centers around the idea that the approaches should not be applied to so-called “severe” or “low-functioning” autism", and suggests that these parents would be less likely to want their child to be "normalized" if autism were less stigmatized by society. (Personally, I suspect these parents are looking for well-being for themselves and their child: fewer meltdowns, fewer injuries, better hygiene, something like an ordinary family life – not normal merely to be the same as everyone else, but normal because their everyday experience has low well-being for everyone.) There is an unstated belief that "being normal" is incompatible with well-being.
I do not believe that either euphemisms or a strong focus on the positive is compatible with WP:NPOV, so there are limits on how far we could implement this in a Wikipedia article, but I think that some form of this approach is feasible. WhatamIdoing (talk) 07:20, 10 January 2025 (UTC)
Yes, euphemisms should be avoided but the terms that we are proposing for a more balanced article are not euphemisms. It is euphemistic to use words with positive connotations. Note that all these negative terms like "symptom", "risk", "cure" or "burden" are the exact opposite of euphemisms (words with negative connotations) that should be avoided as well in favor of neutral terms. Two papers explaining that scientific accuracy is fully compatible with anti-ableist language: [11][12]. LogicalLens (talk) 08:40, 10 January 2025 (UTC)
That sounds like a way forward to resolving the dispute in part so that we can arrive at a version of the article that is at least roughly acceptable to most of us. I envision including a section explaining the pathology paradigm and a section explaining the neurodiversity paradigm. In the pathology paradigm section, it could be mentioned that autistic characteristics are described as "deficits" by the DSM whereas in the neurodiversity section, positive descriptions like mentioning strengths in detail could be used (although actually the neurodiversity paradigm views autism as a neutral thing instead of something positive). In general (when not referring to either the pathology or the neurodiversity paradigm), I suggest using the following language guides for autism [13][14][15]. These sources disagree in some aspects, for example, the US health authority NIH uses the term "autism spectrum disorder" while the UK’s NHS and Bottema-Beutel’s paper (1094 citations) prefer or recommend avoiding it. In many cases, we could just write "autism" or "neurotype" (and where it is inevitable, maybe "condition") instead to avoid the controversy. @Oolong and I have proposed mentioning the fact that public health authorities and diagnostic manuals classify autism as a neurodevelopmental disorder in the second paragraph of the lead section. The Manual of Style of Wikipedia also recommends using neutral terms and that “Words like disease, disorder, or affliction are not always appropriate”. So we could try to avoid the term “disorder” outside the pathology paradigm section as much as we can.
In many other aspects, these sources agree with eath other, for example:
- avoid “severe” or “disease”/”illness”
- “characteristics”/“features”/”traits” instead of symptoms
- not using the terms “cure” or “prevention”
- “low/high support needs” instead of “low/high functioning”
- “nonspeaking” instead of “nonverbal”
- “likelihood”/”chance” instead of “risk”
- “interventions”/”services”/”therapies”/”adjustments” instead of “treatments”
- prefer identity-first language or “on the autism spectrum” instead of person-first language
- avoid using the term “suffering”
- “distressed behavior”/“stimming”/”meltdown” or other specific and neutral description of behavior instead of “challenging behavior”
- “focused/intense/passionate interests” instead of “special interests”
- describing specific needs instead of writing “special needs”
- “impact”/”effect” instead of “burden”
- “co-occurring” instead of “co-morbid”
- “non-autistic”/”neurotypical” instead of “healthy control group”
- avoid using “psychopathology”
- avoid talking about autism as a puzzle, an epidemic or an economic burden
I would like to hear whether we can reach a consensus on these changes.
Remark: It is far from being a universal viewpoint among parents of autistic children with high support needs (e.g. 24/7 care) to hope for a “cure”. See Shannon des Roches Rosa (author of the well-known blog Thinking Person’s Guide to Autism) for example[16]. LogicalLens (talk) 08:55, 10 January 2025 (UTC)
I want to thank @FactOrOpinion for asking the above. I think the volume of back-and-forth discussion is out of hand, and while some of that has been constructive, much of it is exactly the kind of going-in-circles that Do not engage in back-and-forth discussion to statements by other editors" is clearly intended to prevent.
I would certainly welcome clearer guidance on this.
@Robert McClenon I plan to re-draft my proposed lead section in line with @LogicalLens's comments, and paste them in a separate section below, as nobody else has proposed an alternative or fed back on my earlier draft, aside from Mark saying "I like what you wrote and I appreciate you seeking to integrate even if it means including statements you don't necessarily agree with."
In answering the moderator's question, I see two main issues implicated in the dispute. First is, whether - or the extent to which - ASD should be framed in the article as a neurodevelopmental disorder characterised by symptoms and impairments, varying severity, and risks/causes. The second issue regards compliance with due weight based on the sources.
Addressing the First Issue
Due weight and neutrality on Wikipedia do not indicate that two contrasting viewpoints ought to be presented equally or be of comparable influence in the terminology used in articles. The reliable sources substantiating positions need to be weighed in based on their reputability and the consensus of them in the field. For further details, see Wikipedia:reliable_sources and Wikipedia:scientific_consensus.
Around the world, the developers of scientific guidelines, standardised diagnostic criteria, consensus statements, systematic reviews, etc. unanimously conclude that autism is a neurodevelopmental disorder with symptoms, impairments and varying severity levels (for references, see list of references). Additionally, some of these references are essentially developed by a unification of scientists. For example, the Wikipedia article concludes that ASD in the ICD-11 was "produced by professionals from 55 countries out of the 90 involved and is the most widely used reference worldwide".
The idea that this global scientific consensus is localised to the context of medicine is highly inaccurate. The references pertain to a wide array of subfields and contexts related to ASD, clearly substantiating a general scientific consensus for the validity and application of the terminology - not just in a medical context. For a list of quotes documenting this, see list of quotes.
In fact, many of the references are not medically based at all, with some such as the international guidelines from ESCAP concluding that no medicines exist to reduce the core symptoms of ASD, and as such, is irrelevant to the primary purposes of the guideline and thus gets a minor mention. Another example to demonstrate, are the standardised diagnostic criteria, which include the World Health Organization (WHO) ICD-11 and the American Psychological Association (APA) DSM-5. These exist primarily to establish the diagnosis of ASD; they are not attempting to promote medicalisation of ASD, for it is not even mentioned. The 23rd citation in the Wikipedia article (Nelson, 2020) also concludes "the fact that autism is a disorder does not entail that medicalization is the only course".
Addressing the Second Issue
The references given to support the opposing perspective are insufficient relative to the scientific consensus. If we exclude the blog post citations (because they are considered unreliable according to Wikipedia:reliable_sources), one editor has provided the following sources per their edit to alter the third lede paragraph:
A link to A PDF stored on thedigitalcommons.com, apparently authored by Tom Shakespear. This is not a link to a peer-reviewed journal, and has a single author.
A peer-reviewed article in Sage Journal (Dwyer et al., 2024) finding that the Neurodiversity Movement advocates for the de-normalisation of ASD.
In a prior discussion, which I cannot locate as it appears to have been archived or deleted, they have also cited a text-book and other advocacy papers or trade books which advocated against framing ASD as a neurodevelopmental disorder.
Relying on these is problematic for several reasons. First, as shown in list of references, other peer-reviewed reports and textbooks disagree with the above articles. Thus, they cannot be selectively relied upon for the general framing of ASD in the lede. Second, these sources are advocating for something that is not currently established and as such, cannot overturn the scientific consensus classification of ASD as it stands currently. Third, by taking due weight and source reliability into account, the references do not overturn the global scientific consensus. This is because they are not even close to the source reliability of the standardised diagnostic criteria, international and national guidelines, and scientific consensus statements, which indicate otherwise.
Conclusion
In conclusion, the lede should continue to reflect the global scientific consensus that recognises ASD as a valid disorder characterised by symptoms, impairments and varying levels of severity, as required by Wikipedia guidelines and policies. The medical interpretation of the consensus is flawed and lacks careful consideration. Thus, rewriting the lede to exclude the terminology except in medical contexts should not be admissible.Димитрий Улянов Иванов (talk) 16:50, 3 January 2025 (UTC)
Quick reply to clarify two things. I have not elaborated on the specific issues with the changes proposed by an editor on the third lede paragraph because I don't think this is (at least, as of yet) a main matter in the dispute, so I didn't want to include it and make my statement overly lengthy. I also apologise if I have not comprehensively covered the refs that have been given to support the Neurodiversity Movement's perspective; some have been scattered across talk discussions, and so I cited the ones used in article edits and the main ones I recall cited in discussions. In either case, the points about their general invalidity would still stand. Димитрий Улянов Иванов (talk) 17:25, 3 January 2025 (UTC)
Here is a first stab at a lead. I have combined bits from various versions, and rewritten some parts. I have leaned towards neutral language rather than bifurcating from the start; I think this allows a much more concise treatment, without eliding the major differences of opinion.
Note that in many ways this is a compromise lead; there is language that I am not entirely comfortable with, because it still foregrounds a medical perspective, this being the dominant lens still used by wider society as well as most relevant professionals. The direction of travel of both of those has been strongly towards neurodiversity in recent years; it is likely that in another few years, anything based on current discourse and research will need updating to reflect this ongoing progress.
For now, I have entirely omitted the final paragraph, which in the existing version goes into talking about treatments and cures. Producing a balanced version of this will be a challenge, given the evidence that most autistic people (including those with high support needs) would not want a cure, if such a thing were ever possible, and that the most popular 'treatment', applied behavior analysis is extremely unpopular with autistic people. I am also not sure we need a paragraph on this (this draft lead is about the longest I think a lead should be); we certainly shouldn't be devoting as many words to ABA as the current version does.
Autism, officially known as autism spectrum disorder (ASD), is a neurodevelopmental condition (or conditions) characterized by difficulties in social interaction, verbal and nonverbal communication; the presence of repetitive behavior and restricted interests; and unusual responses to sensory stimuli. Being a spectrum disorder, autism manifests in various ways, and support needs vary widely between different autistic people. For example, some are nonspeaking, while others have proficient spoken language.
Public health authorities and diagnostic manuals classify autism as a neurodevelopmental disorder.[1][2][3][4][5] An alternative perspective, arising out of autistic communities,[6] is neurodiversity, which positions autism as a healthy part of the diversity of humankind, rather than a disorder. This is usually associated with some version of the social model of disability,[7] suggesting that disability arises out of a mismatch between a person and their environment.[8] Others argue that autism can be inherently disabling.[9][10] The neurodiversity approach has led to significant controversy among those who are autistic and advocates, practitioners, and charities.[11][12]
Disagreements persist about what should be part of the diagnosis, whether there are meaningful subtypes or stages of autism,[19] and the significance of autism-associated traits in the wider population.[20][21]. Estimates of autism prevalence have increased greatly since the 1990s, mainly due to the combination of broader criteria and increased awareness; there is disagreement on whether the actual prevalence has increased.[22][23]Lundström et al 2015 - fix ref The increase in reported prevalence has reinforced the myth perpetuated by anti-vaccine activists that autism is caused by vaccines.[24] Boys are far more frequently diagnosed than girls[25], although this gap has been narrowing.[citation needed]
While I, like @Oolong, would like the lead section to be significantly more respectful and neurodiversity-affirming, I also agree that we should be aiming to build bridges, but I still want to make some suggestions to make the proposal by @Oolong clearer and more neutral. Feel free to comment on them.
First paragraph
1) Is “officially known as” the best wording? On the one hand, it can encourage readers to just use autism in daily life contexts but on the other hand it can imply a sense of authority that is already conveyed in the second paragraph and doesn’t necessarily need repetition. But it might still be better than just calling it ASD and suggesting it to be a fact of nature.
2) Remove „(or conditions)“ because it’s confusing (general audience doesn’t know what is meant by it).
3) Include „differences and difficulties in social interaction“ as not all social features of being autistic are difficulties.
4) Change „Being a spectrum disorder“ to „Being a spectrum“: the term disorder has already been mentioned in the first paragraph. The next paragraph makes it clear that diagnostic manuals classify autism as a disorder, using the term „disorder“ out of this context makes it appear more objective than it is.
5) Mention strengths of autistic people, like pattern recognition. 1
Second paragraph
1) Change „healthy part of the diversity of humankind, rather than a disorder.“ to „healthy part of the diversity of humankind to be valued and supported, rather than a disorder to be treated.“
2) Remove the citation of Shield’s paper as it focuses mainly on the criminal justice system and states that its conclusions need not apply to autistic people who don’t commit crimes, which is the overwhelming majority. It is too marginal of an aspect to be included in the lead section. Maybe Russell (2020) 2 could be cited as an analysis of critiques of the neurodiversity movement. The sentence that others view autism as inherently disabling would then have to be changed. It is also misleading because neurodiversity academics don’t state that autism cannot have inherently disabling features alongside neutral features and strengths 3. It is a misconception and when deliberately used, a straw man.
3) Make it clear that the debate is changing and the support for the neurodiversity movement is growing rapidly. Your proposal makes it appear to be a stalemate conflict which it isn’t. Also highlight the growing importance of self-advocacy and of seeing autistic people as the primary experts on the topic 4. Also cite Bottini et. Al (2024) 5. It is a secondary source with regard to the terminology being used in autism research. The fact that it is a primary source in its judgement of some of the terms as neurodiversity-affirming and others as not neurodiversity-affirming does not change that because critics would (if they are well-informed) not contend that not calling autism a disorder, for example, is neurodiversity-affirming while doing the opposite is not. Moreover, as @Robert McClenon [argued for], we should only apply the rigid standards for medically reliable sources for sources that are about biomedical information. So even someone who sees it as a primary source cannot reasonably contend its citation anymore. Additional useful sources to cite are: 6 and 7
4) Maybe change „The neurodiversity approach has led to significant controversy ...“ to „There is a significant controversy between the neurodiversity perspective and the medical model of disability among ...“
Third paragraph
1) Write „autism is highly heritable“ instead of „the disorder is highly heritable“ (see my remark 4) for the first paragraph). This is completely neutral and even those who view autism as a disorder should be able to agree.
2) Include mental health issues like depression and anxiety as co-occurring conditions 8, ideally with a reference to masking and stigma 9.
Fourth paragraph
1) Change „Disagreements persist about what should be part of the diagnosis“ to „There is an ongoing debate within the autism community and among researchers regarding diagnostic criteria“ and also cite 10.
2) Change „myth“ to „entirely disproven conspiracy theory“
3) Use this citation for the narrowing gender gap between males and females 11 and also mention the biases leading to females being under-diagnosed.
Thanks, I support most of these suggestions. I suggest we wait a day or so to see if any other parties to this dispute have other feedback, before co-producing a draft lead integrating suggestions.
A few of your suggestions, like 'entirely disproven conspiracy theory', may be unnecessarily wordy - important to keep in mind the guidelines here, I think, given how many of the problems with the existing entry relate to its ballooning length.
Just to reinforce the overall thrust of what we're trying to do here: accoding to Wikipedia guidelines, 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 avoiding language that disparages autistic people should be a priority, as long as it doesn't otherwise violate neutrality (or other guidelines).
This paper [17] mentions the tensions between autistic people and the research community, calling for a paradigm shift in biomedical autism research. The authors are important figures in Europe's largest autism research project, AIMS-2-Trials. It could be cited at the end of the second paragraph where it is about the controversy between the models. LogicalLens (talk) 04:12, 8 January 2025 (UTC)
Redraft
I have re-drafted the lead below. As you will see, I have adopted many but not all of LogicalLens's suggestions. Brevity has been my biggest consideration where I have not accepted their changes; in a couple of cases, I have left the wording as it was in the name of maximising neutrality. One or two other bits have been tweaked for the sake of clarity or, again, brevity. "Health authorities classify autism as a neurodevelopmental disorder" is shorter, for example, and, I think, unambiguously accurate; the reason the diagnostic manuals and guidelines are seen as important is because they are produced and endorsed by medical or public health authorities, after all.
I have also tweaked the description of the social model of disability slightly, and the following sentence now reads "It can also be argued that autism can be inherently disabling" - I take LL's point that this is argued by many of the same people taking the former position, so saying 'other people' here (let alone 'other scientists'!) was misleading. Few proponents of the medical model are absolutist about it, certainly in the context of the neurodiversity movement.
Autism, referred to in clinical contexts as autism spectrum disorder (ASD), is a neurodevelopmental condition characterized by difficulties in social interaction, verbal and nonverbal communication; the presence of repetitive behavior and restricted interests; and unusual responses to sensory stimuli. Being a spectrum, autism manifests in various ways, and support needs vary widely between different autistic people. For example, some are nonspeaking, while others have proficient spoken language.
Health authorities classify autism as a neurodevelopmental disorder.[1][26][3][27][28] An alternative perspective, arising out of autistic communities,[29] is neurodiversity, which positions autism as a healthy part of the diversity of humankind, rather than a disorder - with advantages, as well as disadvantages. This is usually associated with some version of the social model of disability,[30] suggesting that disability generally arises when a person's environment does not accommodate their needs.[31] It can also be argued that autism can be inherently disabling.[32][33] There is a significant controversy between the neurodiversity perspective and the medical model of disability among autistic people, practitioners, researchers and charities.[34][35] Support for the neurodiversity approach has greatly increased in recent years among all of these groups.[36][37]
There is ongoing debate within the autism community and among researchers regarding diagnostic criteria, whether there are meaningful subtypes or stages of autism,[43] and the significance of autism-associated traits in the wider population.[44][45]. Estimates of autism prevalence have increased greatly since the 1990s, mainly due to the combination of broader criteria and increased awareness; there is disagreement on whether the actual prevalence has increased.[46][23][47] The increase in reported prevalence has reinforced the myth perpetuated by anti-vaccine activists that autism is caused by vaccines.[24] Boys are more frequently diagnosed than girls[25], although this gap has been narrowing.[48]
Oolong, I sometimes find it hard to find/re-find draft text amidst the wall of other text on the page. Would you mind using something like the {{tq2}} template to set the draft text off? (That's the template I'm familiar with, but perhaps there's another that has a similar effect.) Thanks! FactOrOpinion (talk) 14:03, 11 January 2025 (UTC)
Ah, I wondered what markup you were using for that! Yes, I'm happy to - but note that this one has the heading #Redraft so you should be able to find it that way! Oolong (talk) 08:30, 12 January 2025 (UTC)
I thank the editors who are developing a proposed revised draft of the lede section. I have one question, and that is: Do you think that you will be able to develop a draft that has the support of those editors who want to rework the article to reflect the neurodiversity viewpoint? My plan, as I have noted above, is to prepare an RFC for the lede section, knowing that it may have to be revised again after the body of the article is revised.
I am responding to the comments about the walls of text that have been posted by moving this dispute. I have created two DRN subpages for the discussion of the article on Autism. I am copying all of the material except the back-and-forth discussion to Wikipedia:Dispute resolution noticeboard/Autism, and am requesting that future work be in that subpages. I have copied the back-and-forth discussion to a separate subpage, Wikipedia:Dispute resolution noticeboard/Autism discussion. In the near future, I will be collapsing the previous dispute resolution on Autism in the main DRN page so that it does not overwhelm other cases.
Димитрий Улянов Иванов, my understanding is that by "community consensus," Robert McClenon means consensus via an RfC advertised to the community at large; elsewhere, he contrasted that with "local consensus here" (i.e., consensus only among the editors participating in this DRN). Re: "Numerous other editors who indicated their support for maintaining the current framing are not included in this DRN," at least one of them was invited to participate here but declined (as did some editors who don't support the current framing); participation here is entirely voluntary. My understanding is that you can invite wider participation as long as the invitation is consistent with the guidelines in WP:Canvassing; however, since the existence of this DRN has already been advertised on the Autism talk page, I don't know that there are any other venues that would make sense to advertise it. FactOrOpinion (talk) 20:18, 3 January 2025 (UTC)
I'm baffled as to why my comment has that visual appearance. I don't see anything in the source editor that would result in that. Apologies, FactOrOpinion (talk) 20:22, 3 January 2025 (UTC)
You have a space before the first curly bracket, that produces the 'box effect'. Feel free to remove this pointer once you have edited your text. Urselius (talk)
... standardised diagnostic criteria, which include the World Health Organization (WHO) ICD-11 and the American Psychological Association (APA) DSM-5. These exist primarily to establish the diagnosis of ASD; they are not attempting to promote medicalisation of ASD, for it is not even mentioned.
(a) Correction: The American Psychiatric Association publishes the DSM.
(b) "... it is not even mentioned." - What is not mentioned?
(c) "they are not attempting to promote medicalisation of ASD" - I encourage you to consider the history of mental disorders listed in the DSM. For example, until 1973, homosexuality was considered a mental disorder, and therefore a medical disorder, since the DSM is published by an organization of physicians. For many years, including for many years after 1973, children, adolescents, and adults were told that homosexuality is a mental disorder, a psychopathology that requires long-term treatment to (possibly) eliminate the mental illness—such as the medical treatment provided to Alan Turing.
Simply listing an alleged disorder in the DSM medicalizes it. I hope you understand this important point.
At the same time, there are some important differences between homosexuality and autism spectrum disorders, so I should make clear that I am not comparing them in most aspects. I actually agree with you that autism spectrum disorders are neurodevelopmental disorders. However, this article is about autism, not just autism spectrum disorders. Also, we are an encyclopedia, not a professional treatment guideline or diagnostic manual, so it is important for us to discuss political, sociological, phenomenological, and many other aspects of autism. The article will still be about, mostly, a neurodevelopmental disorder. But it will also include an enriched understanding, grounded in reliable sources, that reviews the many facets of this condition, including the lived experience of people diagnosed with it. What we're trying to do is get away from narrow, rigid editing that creates articles that sound like a psychiatric treatment textbook. -- Mark D Worthen PsyD(talk)[he/him]04:04, 4 January 2025 (UTC)
a) By that statement, I meant the DSM criteria for ASD does not mention medical treatments.
b) Sorry, I made a typo there, indeed the American Psychiatric, and not Psychological, Association publishes the DSM. Note that while they are not the direct publishers, the American Psychological Association among other professional groups collaborate to develop and produce the DSM which consists of a variety of experts, such as neuropsychologists, beyond psychiatrists.
c) I understand your concern but you are specifically referencing borderline pre-scientific conceptions of disorders that have no bearing on our modern outlook. In the early DSM iterations, homosexuality was indeed implicitly included as a disorder. This was largely because of political reasons and an idiosyncratic interpretation of what qualifies as a disorder. For decades since then, there has been a global scientific consensus (Barkley et al., 2002; Faraone et al., 2021) that for something to qualify as a disorder it must meet two criteria. First, there must be scientifically established evidence of a dysfunction or deviation in a trait universal to humans. One may argue homosexuality meets this first criteria as it deviates from the more typical heterosexuality in the underlying spectrum of sexuality universal to humans.
However, the second criteria requires this deviation or dysfunction causes significant impairment or distress in major life domains and/or predisposes to increased morbidity and early mortality. Homosexuality does not meet this criteria and is therefore not a disorder; whilst some homosexual people may experience problems due to societal oppression and discrimination, this is not attributable to the condition itself.
This is ultimately why we can't compare things like homosexuality and transgender (which are not impairing or disabling) to neurodevelopmental disorders like ASD (which are). I'm know you agree with this differentiation and are aware of the criterion for establishing disorders, but it seems I need to describe it so we can avoid these sort of comparisons.
It is false to suggest listing a disorder in the DSM thereby medicalises it. It's simply a diagnostic manual, as is the ICD, with many diagnosticians not necessarily using the diagnosis to prescribe medical treatment. Certainly, a diagnosis opens the gateway for medical treatment in cases where it is suitable but this is not itself the only purpose of the DSM. No medication has been found that reduces the core symptoms of ASD (see guidelines from ESCAP). No guidelines I know of have approved use of any medication for ASD symptoms. Yet, ASD is diagnosable according to the DSM and ICD.
I'm aware and have personally dealt with the fact that DSM committees are far from perfect and make egregious errors at times, including for political reasons, which is why I have not relied on the DSM at all. This was much worse back in its early versions indeed, but has improved substantially since. It was one reputable reference of many I have provided. I'd like to ask you please consider re-reading my statement, the citations, and the contexts of the aforementioned scientific literature which go far beyond medicine.
The article is about autism which is a neurodevelopmental disorder. If someone exhibits autistic-like traits but are not sufficiently severe to lead them to be functionally impaired, then they do not have autism, and by extent are not on the autism spectrum (with an exception for borderline cases that may periodically fluctuate in and out of impairment). From my understanding, everyone is on the spectrum that underlies autism. But the autism spectrum is a dichotomy imposed on this spectrum, starting where people have autism to represent its different severity levels; as such, the autism spectrum is not applicable to people who do not have the disorder. If I have misinterpreted this, please let me know. Димитрий Улянов Иванов (talk) 13:30, 5 January 2025 (UTC)
I'm puzzled by your comment that "It is false to suggest listing a disorder in the DSM thereby medicalises it." It seems that your assessment of whether something is medicalized is a function of whether it's treated/treatable with medication. Have I misunderstood how you assess whether something has been medicalized? There are many medical concerns that are addressed through behavioral or other adaptations rather than medication (e.g., through physical therapy, condom use, hand washing, use of mosquito nets, exercise, water treatment). When I look at the terminology used for many of the main headings in the article (e.g., symptoms, diagnosis, etiology, comorbidities, interventions, prevention, prognosis, epidemiology), these strike me as mostly medical terms, and certainly the combination strikes me as a medical perspective (e.g., if you do an internet search for that set of words, the results are medical conditions). Would you mind clarifying how you assess whether something has been medicalized? Thanks, FactOrOpinion (talk) 15:37, 5 January 2025 (UTC)
I don't like it when neurotypical people say "every one is on the spectrum" but luckily you only almost said that:
"From my understanding, everyone is on the spectrum that underlies autism." So everyone has everything then? You didn't say that but this idea of people-having-something-but-it-not-being-bad-enough-to-count could be used on any condition or disability, at least in a social way like when talking to people, you could use it to offend and devaluatie someone.
"starting where people have autism to represent its different severity levels; as such, the autism spectrum is not applicable to people who do not have the disorder."
But only a little bit so it doesn't count. I understand, but personally I only think the autistic ones are autistic, but that's off topic. Anthony2106 (talk) 03:59, 6 January 2025 (UTC)
Anthony, I believe there are two different ways to understand the "ASD" spectrum.
One works like this: All the neurotypical people get put in this big neurotypical bubble over here: ⭕️. They are not on the spectrum because they are not autistic. All the autistic people are excluded from the neurotypical bubble, and they line up along the autistic spectrum, ranging from . The spectrum runs (more or less, because being autistic is a multidimensional experience, and this is an over-simplifed two-dimensional spectrum) from "barely qualifies as autistic" to "extremely autistic".
The other works like this: All humans have a place on the spectrum of human variation. Everyone is somewhere in the colors. The extremely neurotypical people are at one end, and the extremely autistic people are at the other end. People who are not at the extremes line up somewhere in the middle. This is "everyone is on the spectrum"; that spectrum runs from "extremely non-autistic" to "extremely autistic".
I have my own preferences, and I think it's confusing to use the word "spectrum" to describe both the spectrum of autistic people and the spectrum of all humans, but neither of these is bad or wrong. It may help if people are clear about which meaning they're using. WhatamIdoing (talk) 07:39, 6 January 2025 (UTC)
Way #1 is better, also some people believe you can't be more or less autistic[18] I think I mostly agree with this unless the person is intellectually impaired, or maybe that just means their intellectually impaired. Anyway yt is bad for Wikipedia but if there are any other sources that fell this way it should probably be mentioned on the page: "some autism advocates say you can't compare who's more or less autistic". Anthony2106 (talk) 11:27, 8 January 2025 (UTC)
I agree that moving away from the psychoanalytic diagnostic model to a research based model with DSM-III was a major improvement. However, my point is that including a condition in a medical diagnostic manual has the potential for both positive and negative impacts on people in a variety of ways. By itself, this is of course not a reason to exclude or include a condition in a medical diagnostic manual, it's simply one of many considerations.
Note that I am intentionally calling the DSM a "medical diagnostic manual", because psychiatry is a branch of medicine. With regard to the American Psychological Association, while some psychologists and other non-physician professionals serve on DSM committees, there is no doubt that this is an American psychiatric Association publication and that psychiatrists run the show. A useful way to highlight this distinction is to note that the American psychological association is not listed as an author or copyright holder for the DSM, and does not earn any income from the sale of the DSM and all that related products associated with it. On the other hand, the American Psychiatric Association makes a ton of money with their copyright and trademark of the DSM name and contents. Since we, in the United States, live in a country with a free market economy (capitalism), all I can say is more power to them. But my point here is that while some psychologists are involved, it is the psychiatrists who are in charge and make the final decisions. Mark D Worthen PsyD(talk)[he/him]04:35, 6 January 2025 (UTC)
I feel puzzled by the statements <quote> If someone exhibits autistic-like traits but are not sufficiently severe to lead them to be functionally impaired, then they do not have autism, and by extent are not on the autism spectrum (with an exception for borderline cases that may periodically fluctuate in and out of impairment). From my understanding, everyone is on the spectrum that underlies autism. But the autism spectrum is a dichotomy imposed on this spectrum, starting where people have autism to represent its different severity levels; as such, the autism spectrum is not applicable to people who do not have the disorder. If I have misinterpreted this, please let me know </quote> at many levels.
Firstly, somebody can show less extent of Autistic traits yet be more stressed/ impaired due to mismatch with environment or bad consequences. A person with more significantly severe symptoms might be less stressed / do better with better support and understanding. School or workplace problems, self ha*rm, agressions meltdowns etc are often caused by stressful situations the person is unable to handle.
When an Autistic (or non-Autistic) person cannot cope up and end up with traumatic complication (according to their own nervous system), it is called PTSD/ CPTSD. When a person shows significant level of Autistic traits then the person is called Autistic. When the person cannot function due to these (better to say a more sensitive nervous system that gets messed up in the same stimuli that neurotypicals comfortably digest) and enters into a state of shutdown or paralysis or bad condition, it is called PTSD/ CPTSD co-occuring with Autism.
Autism is primarily defined as a social and communication disorder, and it takes at least 2 people to establish communication. Telling only one of them having communication disorder just because this group is less understood and less in number, is ridiculous. The mismatch between interaction is the key factor that make us appear functionally impaired.
People do not fluctuate in and out impairment: Autistic people remain same level of Autistic. The stress level, mental stability, cope-up power fluctuates depending upon incidences and environment.
No, everyone is DAMN not little bit Autistic. If everyone was somewhere on the Autism spectrum, then understanding and accommodation would NOT be this hard, we would NOT be so much misunderstood and judged. It is true that many people are misdiagnosed with a secondary mental health condition only. Or miss a diagnosis, never come to know they were Autistic, or access a diagnosis late in life... as a surprise discovery or accidental medical finding on some weird or traumatic life phase. STILL, no, NOT everyone in the planet is anywhere on the spectrum.
The Autism spectrum is multidimensional, and the severity level is an unhelpful linear oversimplification of Autism spectrum. Because different Autistics have their needs and strengths in very different cognitive and sensori-motor domains. So called mild Autistics can have a different set of more severe problems, so called severe Autistics can have less problem in those domains. Each Auyistics go through different life situations. RIT RAJARSHI (talk) 22:28, 9 January 2025 (UTC)
The goal should be reducing or minimizing the traumatic state. We can also prevent traumatic situation to some degree if diagnosis, support, and information are more accessible. RIT RAJARSHI (talk) 22:47, 9 January 2025 (UTC)
To quote Sir Simon Baron-Cohen, a very well respected scientific researcher (world renowned) and theorist of autism and one of the developers of the AQ autism test: "Regarding scientific evidence, there is evidence for both neurodiversity and disorder. For example, at the genetic level, about 5 percent of the variance in autism can be attributed to
rare genetic variants/mutations, many of which cause not just autism but also severe developmental delays (disorder), whilst about 50 percent of the variance in autism can be
attributed to common genetic variants such as single nucleotide polymorphisms (SNPs), which simply reflect individual differences or natural variation. At the neural level, some regions of the autistic brain (such as the amygdala, in childhood) are larger, and others (such as the posterior section of the corpus callosum) are smaller. These are evidence of difference but not necessarily disorder. Early brain overgrowth is another sign of difference but not necessarily disorder." See: https://docs.autismresearchcentre.com/papers/2019_Baron-Cohen_Concept-of-neurodiversity.pdf
I think that in and of itself, this single quotation destroys the idea that the scientific consensus is only supportive of the 'medical model' of autism. It also effectively discredits its corollary, that scientists reject the 'neurodiverity model' of autism, or consign it to the realms of 'fringe theory'. I suggest that Baron-Cohen's ideas on the equal and complimentary nature of the two models is a useful paradigm for the treatment of autism on Wikipedia. Urselius (talk) 07:26, 4 January 2025 (UTC)
I hope that Baron-Cohen isn't actually claiming, as it sounds from this quotation, that anything resulting from SNP mutations is "natural variation", because some SNP mutations result in deadly diseases (e.g., some forms of cancer, cystic fibrosis, etc.). Premature death could be described as "natural" but it's not what most people think of as "natural variation". WhatamIdoing (talk) 23:06, 4 January 2025 (UTC)
That is exactly what he is claiming. The majority of natural human variation consists of SNPs. Some can indeed cause disease states, but very many are neutral, especially in non-coding regions or where the SNP does not affect the coded amino acid, while some are beneficial. He is contrasting SNPs with larger scale changes to DNA, such as deletions, transpositions and duplications, which are almost always highly deleterious. The major determinant of blue eyes in humans is a SNP in the OCA2 gene, known as rs12913832, I doubt that possessing blue eyes can be called a 'deadly disease'. Even if Baron-Cohen is not a molecular biologist by training, I am. Urselius (talk) 09:08, 5 January 2025 (UTC)
I think it is easier to interpret Baron-Cohen's sense here if you omit SNPs, which are given as an example: '50 percent of the variance in autism can be attributed to common genetic variants which simply reflect individual differences or natural variation'.
There's no implication that all SNPs 'simply reflect natural variation', on my reading... but either way, it's worth bearing in mind that the term 'natural' is notoriously slippery. Sounds positive; actually includes all sorts of value-neutral or feared phenomena. Oolong (talk) 15:57, 5 January 2025 (UTC)
Baron-Cohen is saying that many of the SNPs involved in autism are part of the natural variation within humanity as a whole. That is, he is pointing to these SNPs as being part of neurodiversity. A simplified corollary would be, again, the major blue eye colour SNP. Blue eye SNPs are found throughout populations of European descent, but an individual only displays blue eyes when they have two copies of the OCA2 gene with the SNP. With autism-associated SNPs, the individual will only display autism when they have above a certain threshold number of the alleles containing the 'autism SNPs'. It is a simple concept. For the majority of the population with lower numbers of autism-associated SNPs, they are not autistic and the individual SNPs may be neutral or even beneficial in their effects. Some autism-associated SNPs are connected to higher than average academic attainment. SNP variants as such can be deleterious, neutral or beneficial. I have a number of Neanderthal-derived SNPs, one that affects my muscles - makes me a better sprinter than distance runner, two that make me less fearful of heights and one that means I do not get agitated or moody when hungry. SNPs are variable in their effects they are just changes to one nucleotide, it is where and how that change occurs that determines its phenotypic outcome. The concept of SNPs is not 'bad' or 'good' in and of itself. Urselius (talk) 17:17, 5 January 2025 (UTC)
Urselius, if Baron-Cohen is actually using the molecular mechanism as a way to define "normal human variation", then that's quite WP:Extraordinary. He'd be defining XYY syndrome – which is mostly harmless – as a "disorder" and most cases of Phenylketonuria – which can be deadly – as normal variation. Let's find better sources for determining what "normal human variation" is. I suspect (but would be happy to be proven wrong) that those better sources are going to rely more on the phenotype, e.g., "It is not 'normal' for children to scream for multiple hours a day." WhatamIdoing (talk) 08:16, 6 January 2025 (UTC)
WhatamIdoing, I think the difference between "natural" and "normal" might be meaningful here. Among the meanings of "natural" (the word in the Baron-Cohen quote) is "typical" or "normal," but another is "found in nature." When I read Urselius's comment that "The majority of natural human variation consists of SNPs. Some can indeed cause disease states, but very many are neutral, especially in non-coding regions or where the SNP does not affect the coded amino acid, while some are beneficial," my sense is that "natural" is being used in the second sense, not the first. My interpretation of Urselius's comment is that most human variation found in nature "consists for SNPs," where that variation might result in disease, or have a neutral effect, or be a beneficial change.
Elsewhere in the short article, Baron-Cohen explains some of the terms he's using:
The term “disorder” is used when an individual shows symptoms that are causing dysfunction and where the cause is unknown, whilst the term “disease” is used when a disorder can be ascribed to a specific causal mechanism. The term “disability” is used when an individual is below average on a standardized measure of functioning and when this causes suffering in a particular environment. In contrast, the term “difference” simply refers to variation in a trait, like having blue or brown eyes.
So I don't think he'd say that XYY syndrome is a disorder, and he might say that phenylketonuria is natural in the sense of "found in nature," but not natural in the sense of "normal." He doesn't define how he's using either "natural" or "normal" and only uses each one time in the article, and even then, he only uses "normal" inside quotation marks:
Many autistic people—especially those who have intact language and no learning difficulties such that they can self-advocate—have adopted the neurodiversity framework, coining the term “neurotypical” to describe the majority brain and seeing autism as an example of diversity in the set of all possible diverse brains, none of which is “normal” and all of which are simply different.
If the relevant definition is "found in nature", then "larger scale changes to DNA, such as deletions, transpositions and duplications" are equally "natural".
It sounds like we need a definition of "dysfunction". (We leave aside the fact that asymptomatic dysfunction is also a medical disorder, since his focus is on behavioral health.) Is it a "dysfunction" if you are "below average on a standardized measure of functioning"? In a less politicized area, such as low back pain, we would say that you have a "dysfunction" or a "disorder" if you are significantly worse than average on standardized measures of functioning, such as the ability to lean forward without pain. If an autistic person is significantly below average on a standardized measure of functioning, e.g., social communication, then would that not be "a disorder"? WhatamIdoing (talk) 21:32, 6 January 2025 (UTC)
I think which definition is relevant depends on the context. Yes, if the intended meaning is "'found in nature', then 'larger scale changes to DNA, such as deletions, transpositions and duplications' are equally 'natural'". But Urselius indicated that the human variation that results from larger scale changes to DNA is less common than the variation that results from SNPs, and that SNPs and larger scale changes to DNA have different distributions of deleterious, neutral, and beneficial effects. I'm guessing that "dysfunction" is meant as something like "impaired function relative to what's typical for a healthy person." I wouldn't think that simply being below average necessarily means that you're atypical, since "typical for a healthy person" is often a range, and someone can be below average but still in that healthy range. However, significantly below would indicate dysfunction. I don't understand your last question: why would it not be a disorder? Seems to me that it falls in his description of disorder: "an individual shows symptoms that are causing dysfunction and where the cause is unknown." FactOrOpinion (talk) 23:04, 6 January 2025 (UTC)
To a first approximation, all mutations are lethal. For the uncommon subset of mutations that both produce a practical effect and aren't immediately lethal, then on average, bigger changes are more damaging than smaller changes. However, that's about the average, and as a simple example, a single SNP mutation can change the three-letter code for a Tyr or Cys amino acid into a stop codon, which has the same practical effect as a deletion of the rest of that gene. It would be silly to say that cystic fibrosis caused by a deletion is a "disease" but cystic fibrosis caused by an unfortunately located stop codon "simply reflect individual differences or natural variation" when both cases are producing the same partial and equally ineffective protein. WhatamIdoing (talk) 02:12, 7 January 2025 (UTC)
Yeah, I'm assuming that the discussion isn't about mutations that are immediately lethal and is instead about human variation among those who are born. Re: your example, aren't they both examples of "variation found in nature," with both cases resulting in disease? Somehow I'm missing the point of your example. FactOrOpinion (talk) 03:25, 7 January 2025 (UTC)
The point is that declaring "deletions" to be 'disorder' and "SNPs" to be 'normal variation' is nonsense. The genetic mechanism is less important than the practical result. WhatamIdoing (talk) 22:53, 7 January 2025 (UTC)
But I don't think anyone is declaring "deletions" to be 'disorder' and "SNPs" to be 'normal variation'. As I understand it, both deletions and SNPs are "natural variation" (not in the sense of "normal"), and either can produce disorder, but disorder is a more common result with the former than the latter (excluding all of the mutations that are immediately lethal). FactOrOpinion (talk) 00:09, 8 January 2025 (UTC)
This is an awful lot of discussion of what I'm fairly sure is a misunderstanding of what SBC said in the first place. Maybe it could be good to refocus on redrafting, with the odd excursion into things directly relevant to that process? Oolong (talk) 08:59, 8 January 2025 (UTC)
I can't really contribute to the redrafting, and perhaps I should stop participating entirely. At any rate, I will try to be more mindful about whether or not my comments are productive with respect to the dispute resolution and to avoid those that are peripheral. FactOrOpinion (talk) 21:34, 8 January 2025 (UTC)
Is a reliable biological difference between autism with intellectual disability and autism without intellectual disability an established theory or is it just a conjecture posed by some? I wonder why those who advocate for viewing autistic people with intellectual disabilities as disordered don't seem to use this as an argument (apart from Baron-Cohen) and even scientific sources don't often mention it and instead refer to there being multiple subtypes some of which have a somewhat higher likelihood of intellectual disability than others.
In the talk section, you wrote (Talk:Autism#c-Urselius-20241218203600-Димитрий Улянов Иванов-20241218172800) about your achievements, marriage, children, house owning and savings in order to counter claims of impairment. Maybe you have read about the social model of disability in the meantime, but showing how much we achieve is not necessary for countering disorder narratives. It can even come close to Aspie supremacism ([19]) because it implies that one's brain is superior to that of an autistic person with intellectual disability. There is certainly a hope for a biological difference among autistic people without intellectual disability who want to distance themselves from what they call the "really impaired" ones.
From my perspective (I'm not a geneticist or neuroscientist) it looks more like there is no clear boundary between the two, but please correct me if I'm wrong. LogicalLens (talk) 00:50, 8 January 2025 (UTC)
I don't necessarily doubt the status of this scientist but it is quite a fallacious argument from authority to use this to help perceive the reputability of a source (as it seems implied to me). People are fallible, scientific consensus is usually much less so.
I'm glad you point towards how neurodiversity and disorder as concepts are not mutually exclusive. The issue is with the so-called Neurodiversity Movement, specifically the subset of its advocates who argue they are incompatible and thus assert ASD is not a real disorder.
The validity of ASD as a neurodevelopmental of course doesn't deny the underlying neurological diversity that leads to the disorder. But what's been empirically demonstrated is that once this diversity becomes sufficiently severe, significant impairment in major life domains, distress and/or predisposition to morbidity, injury and early mortality arise.
I'd like to note the scientific consensus for concluding ASD is a disorder isn't medically based, regardless of whether people wish to impose this term on it in order to contrast it with a "social model". Diagnosticians do not necessarily prescribe medical treatment but merely affirm the presence or absence of a disorder or other form of condition. No medication has been found to reduce the core symptoms of ASD (see guidelines from ESCAP) and no reputable guidelines, to my knowledge, have approved use of any medication for ASD. This doesn't take away from the fact that it's a neurodevelopmental disorder, as noted by Nelson (2020). In the list of references, the terminology is not invalidated but actually consistently used in subfields of ASD that are unrelated to medicine. Димитрий Улянов Иванов (talk) 14:14, 5 January 2025 (UTC)
A consensus is not a consensus if a major player does not subscribe to it. Baron-Cohen, amongst active researchers in the field of autism, is far from being alone in his views. There was a scientific consensus that space was pervaded by aether, which was the 'carrier' for electromagnetic radiation, until the work of Einstein disproved it. Scientists, let alone medics, can adhere to incorrect consensuses. More cogently, science can also admit the possible validity of two or more differing hypotheses or theories at the same time, if the evidence is interpretable in more than one way. Urselius (talk) 16:57, 5 January 2025 (UTC)
The field of contributors and published literature in ASD and its subfields far transcends the potential for a single researcher or publication to wave the scientific consensus. Keep in mind that the argument supporting a conclusion is contained in the evidence put forward that the scientific consensus is based on, not by any one or group of scientists stating the consensus. Thus, if one researcher presented sufficient evidence to overturn the scientific consensus, naturally a paradigm shift in the literature would occur.
Citing the scientific consensus shouldn't be automatically untrustworthy because it has been wrong in the past. This implication ignores the Darwinian self-corrective process that is the scientific enterprise---proposing, testing, and refining based on the evidence thus far obtained. Even when paradigm shifts occur in science, it is exceedingly rare that the prior model is discarded but rather superseded by a more comprehensive model, e.g., the introduction of General Relativity didn't invalidate Newtonian mechanics (to expand on the example topic you cited).
An appeal to scientific consensus isn't fallacious in the same way appealing to a singular authority is. For instance, if every single chemist alive unanimously agrees on the existence of the periodic table, then it's very indicative of the fact that that's how molecules work. This would be so even if I am unqualified to understand the reasoning used to reach the conclusion. Димитрий Улянов Иванов (talk) 19:13, 5 January 2025 (UTC)
A consensus is a generally accepted opinion, it comes close to suggesting unanimity. As I have said, Baron-Cohen is not just eminent in the field of autism research he is far from alone! Here are just some scientific/medical publications and their authors that challenge your consensus: Akhtar, N., & Jaswal, V.K. (2013). Deficit or difference? Interpreting diverse developmental paths: An introduction to the special section. Developmental Psychology, 49, 1–3. Bagatell, N. (2010). From cure to community: Transforming notions of autism. Ethos, 38, 33–55. Bertilsdotter Rosqvist, H., Chown, N., & Stenning, A. (Eds.) (2020). Neurodiversity studies: A new critical paradigm. London: Routledge. Callanan, M., & Waxman, S. (2013). Commentary on special section: Deficit or difference? Interpreting diverse developmental paths. Developmental Psychology, 49, 80–83. Dawson, M., & Mottron, L. (2011). Do autistics have cognitive strengths? Should ASC be defined as disorders? In S. Bolte & J. Hallmayer (Eds.), Autism spectrum conditions: FAQs on autism, Asperger syndrome, and atypical autism answered by international experts (pp. 32–39). Boston: Hogrefe Publishing. den Houting, J. (2019). Neurodiversity: An insider's perspective. Autism, 23, 271–273. Jaarsma, P., & Welin, S. (2012). Autism as a natural human variation: Reflections on the claims of the neurodiversity movement. Health Care Analysis, 20, 20–30. Leadbitter, K., Buckle, K.L., Ellis, C., & Dekker, M. (2021). Autistic self-advocacy and the neurodiversity movement: Implications for autism early intervention research and practice. Frontiers in Psychology, 12(Article 635690), 1–7. Nicolaidis, C. (2012). What can physicians learn from the neurodiversity movement? American Medical Association Journal of Ethics, 14, 503–510. Robertson, S.M. (2010). Neurodiversity, quality of life, and autistic adults: Shifting research and professional focuses onto real-life challenges. Disability Studies Quarterly, 30. Einstein's work did entirely consign the concept of aether to the dustbin. Your extrapolation, away from the point I was making, in no way invalidates that assertion, or the mutability of scientific consensuses. Urselius (talk) 21:28, 5 January 2025 (UTC)
As with the term 'medical', it's unclear what 'scientific consensus' means to you, which is why I have pressed you on this before. It appears that you do not mean the same thing as what other participants here mean by the phrase.
I would argue that it is not a 'fallacious argument from authority' to point out that the author of the single most-cited paper on autism (Mota et al 2024) publicly disagrees with the putative 'scientific consensus', and that this indicates that it is in fact something short of a consensus among scientists. There are, however, many other, stronger lines of evidence for this conclusion, as discussed exhaustively elsewhere. Evidently, a large number of relevant scientists actively disagree with the position you are describing. As such, it straightforwardly does not fit what most people mean by the phrase 'scientific consensus' - hence my sense that in order to move forward, we need you to explain exactly what you mean by the term.
Respectfully, and as I take into account my time constraints, I don't think us conversing or debating the specific issue again of whether a large number of scientists disagree would be worthwhile. I believe we've already made our positions clear in the talk page about the juxtaposition of sources, and what Wikipedia guidelines suggest, at least as we perceive them, so it would just be a regurgitation of essentially the same points that weren't convincing the first time.
With that said, I'm not arguing that citing a single source is an argument from authority, but rather the insertion of "a very well respected scientific researcher (world renowned) and theorist of autism and one of the developers of the AQ autism test" is fallaciously implying we should consider their opinion at a higher regard than sources who don't exhibit this subjective status of respect or have developed the AQ autism test.
I understand why people like to mention this sort of background context; in fact, I sometimes do similar things in informal settings to show my admiration of a scientist; but it's fallacious given the context. To give an analogy, if Stephen Hawking had told someone or had published a scientific article concluding that the moon was made out of cheese, we would have had little or no reason to accept this as fact on Wikipedia. If he published a scientific paper, peer-reviewed it and the referees of the entire scientific community astonishingly did not find anything wrong with it, we arguably would have to.
Citing a singular source isn't fallacious but, in our context, is insufficient. This is because ASD and its subfields far transcends the potential for a single researcher's stance to wave the existing consensus. I'd like to be clear: this does not suggest a researcher is unable to be right about the consensus being wrong. The argument supporting a conclusion is contained in the evidence put forward that the scientific consensus is based on, not by any one or group of scientists stating the consensus. Thus, if one researcher presented sufficient evidence to overturn the scientific consensus, naturally a paradigm shift in the literature and by extent, the consensus, would occur. Димитрий Улянов Иванов (talk) 19:54, 5 January 2025 (UTC)
Again, there appears to be a misunderstanding here relating to the meaning of words, particularly consensus. I have pointed this out a number of times, but you are still not addressing it.
The eminence of SBC in the field of autism is clearly relevant to the weight of his dissent from the supposed scientific consensus (although if it was just him, there might be a conversation to be had). When multiple leading scientists in a field disagree, there is simply not a consensus. Oolong (talk) 07:44, 6 January 2025 (UTC)
@Urselius I do not like Simon Baron Cohen. For his claims regarding lack of empathy, for his weird extreme male brain theories, his eugenetic ideas and close association with Spectrum-10K, a controversial study. RIT RAJARSHI (talk) 22:50, 9 January 2025 (UTC)
You are entitled to your dislike. However, your opinion does not affect Baron-Cohen's standing in the field of autism research. I think you will find that he has quietly distanced himself from the extreme male brain theory and generalised lack of empathy (towards specific difficulties with cognitive empathy) over recent years. Urselius (talk) 11:17, 14 January 2025 (UTC)
There seems to be a basic difference in understanding here of what 'medical', 'medicalisation' and related terms mean. The DSM is the Diagnostic and Statistical Manual of Mental Disorders. It is published by the American Psychiatric Association. It is absolutely, fundamentally, a medical document: a clinical handbook. If you look down the list of contributors, you'll see significantly more 'M.D.' than 'Ph.D.'
Similarly, ESCAP is the European Society for Child and Adolescent Psychiatry. Psychiatry is a medical field. Psychiatrists are, by definition, doctors. NICE is the National Institute for Clinical Excellence. ICD is the International Classification of Diseases (ICD), which Wikipedia describes as 'a globally used medical classification', and so on.
I have never encountered the suggestion before that these things could plausibly be considered non-medical; I'm not sure what definition Dmitri has in mind here, but from the context I wonder if he's interpreting it only to refer to medication?
I believe that nearly everybody here would interpret the term medical to include the above. Some might prefer clinical, but the distinction is largely academic, and 'medical' is the standard term used for the approaches in question. Hopefully with this misunderstanding cleared up, we can move on to a sober evaluation of the views of relevant scientists in general, and others with relevant expertise.
--Oolong (talk) 08:11, 4 January 2025 (UTC)
The Tom Shakespeare chapter is in an edited collection published by Routledge, which the original reference made quite clear, and was included merely to provide a clear and authoritative account of the social model of disability.
The Dwyer et al paper provides a thorough exploration of the relationship between neurodiversity and the social model of disability, and gives considerable insight into the views of relevant stakeholders (autistic people, professionals, family members and so on; the paper breaks this down in detail).
The description of what the "autism rights movement" says about disability in the current lead is unambiguously wrong. Oolong (talk) 08:21, 4 January 2025 (UTC)
While they are not the direct publishers, the American Psychological Association among other professional groups collaborate to develop and produce the DSM which consists of a variety of experts, such as neuropsychologists, beyond psychiatrists.
"The American Psychological Association has members with significant expertise in the scientific areas relevant to the DSM, and we have urged them to take part in the DSM revision efforts. We are encouraged that many psychologists are making meaningful contributions to the process as individuals, as members of the DSM-5 Task Force and work groups, and through the divisions of the American Psychological Association."
The C in NICE does not stand for "clinical"; it is the National Institute for Health and Care Excellence, where we produce guidelines that concern matters beyond clinically related efforts. NICE guidelines for ASD do focus more on diagnosis, management, accommodations and clinical advice (but not to the exclusion of other contexts), but I am not relying solely on NICE national guidelines but other reputable sources as well that cover other subfields and contexts. These show how the terminology is not valid exclusively in a medical nor a clinical context.
Beyond this, we should not be relying on the name of a guideline developer or public health body or even their overarching publication to contextualise it. This is very misleading. Yes, the D in ICD stands for diseases but it encapsulates conditions that are not diseases, such as neurodevelopmental disorders, thereby disqualifying the context you are interpreting through the name. Such names are often made as a matter of convenience or sustained due to complicity that would otherwise arise.
The International Guidelines of ASD from ESCAP cover: "prevalence, socio/environmental considerations, prognosis in autism, assessments in adulthood, provide access to full and effective participation and inclusion in society, common co‑occurring conditions, early markers of autism, individual rights, making the environment more “autism friendly”, transition to adulthood, social skills, naturalistic learning/development, treatments for co-occurring conditions"
Therefore, it is far from limited to a medical context. This is true for many of the other citations I gave - some of which do not even mention medical topics - and the quotes I used to demonstrate this (see the two lists I linked in my statement).
While it's sometimes obfuscated with other, more overarching terms like "clinical", according to Oxford Languages, medical means: "relating to the science or practice of medicine." While I am fluent, English isn't my first language, so I apologise if it's in fact synonymous with "clinical" or something alike, but I've always thought of "medical" as referring to "medicine" and not a specific, more overarching context.
It is false to suggest listing a disorder in the DSM thereby medicalises it. It's simply a diagnostic manual, as is the ICD, with many diagnosticians not necessarily using the diagnosis to conduct medical or clinical interventions. Certainly, a diagnosis opens the gateway for medical treatment in cases where it is suitable but this is not itself the only purpose of the DSM. No medication has been found that reduces the core symptoms of ASD (see guidelines from ESCAP) and no guidelines I know of have approved use of any medication for ASD symptoms. Yet, ASD is diagnosable according to the DSM and ICD. Димитрий Улянов Иванов (talk) 20:17, 5 January 2025 (UTC)
Hi Димитрий Улянов Иванов, I'm wondering if you'd find WP's discussion of "medicalization" to be helpful. It still seems that you're interpreting/using it in a sense that's narrower than its actual meaning. "Clinical" (when used in phrases like "clinical diagnosis," "clinical research," and "clinical evidence") means that the work involves direct observation of a patient. So "clinical" overlaps significantly with "medical," as the patient is most often someone interacting with the medical system (e.g., a doctor's patient, a hospital patient). When you talk about the DSM as a diagnostic manual, who do you envision doing the diagnosis of ASD? (Pediatricians? neurologists? psychologists? members of some other group?) FactOrOpinion (talk) 21:46, 5 January 2025 (UTC)
Thank you, @FactOrOpinion; and thank you, @Димитрий Улянов Иванов, for finally addressing the question of what you think 'medical' means. I hope you are starting to see why I have been pressing you to define terms that are at the centre of disagreements here: I think there is an ambiguity in the English terms medical and medicine that has been tripping you up.
Yes, 'medical' refers to medicine, but usually in the sense of 'what doctors do', not the 'substance which specifically promotes healing when ingested or consumed in some way' sense. I hope you can see how this makes sense of many of the claims you have been arguing with. There has obviously been some arguing at cross-purposes happening, as I figured there must have been.
And you are right, of course, that the C in NICE no longer stands for Clinical - I did know that they'd changed their name at some point, but obviously the old acronym was lodged deep in my brain, and I forgot in the moment. Oolong (talk) 07:53, 6 January 2025 (UTC)
Thank you, Oolong, for clarifying the meaning and connotations of that term. I do now see how I have been obfuscating the word to refer to medicine itself too much. More broadly, it can refer to the examination to assess a person's mental state/health as well, which would include diagnosis. Димитрий Улянов Иванов (talk) 00:28, 9 January 2025 (UTC)
<quote>"It is false to suggest listing a disorder in the DSM thereby medicalises it."</quote> I do not agree that the current Wikipedia version reflects that. Discussions to much regarding causes, prognosis, treatments etc. revolve around medicalization and intervention centered weight in the topic.
The current version of the article revolves around pathology and promotes behavioral suppression.
It feels like the other viewpoints, other consensus, and especially necessary details on AAC and social support has not received sufficient importance. The actually helpful things are critically missing from the article.
In your position I would want to apologise to @TempusTacet and @Ó.Dubhuir.of.Vulcan, whosepoints you persistently, angrily dismissed based on this misunderstanding. Your call, though, obviously.
One small point here, just in case of possible future misunderstandings: it doesn't just refer to the examination; as one Medical News Today article puts it, "Medicine is the field of health and healing. It includes nurses, doctors, and various specialists. It covers diagnosis, treatment, and prevention of disease, medical research, and many other aspects of health."
I didn’t "angrily dismiss" anyone’s points. In fact, the discussion you cite was about the degree to which the global scientific consensus pertains to the various subfields in ASD. I provided ample evidence to show how the terminology is applicable to many subfields and contexts that are not medical, diagnostic or clinical. This is consistent with the broader definition of "medical" that I have acknowledged, as supported by the references and quotes I cited; so, bringing this up is irrelevant.
More generally, the were a number of misrepresentations and false accusations of strawmen fallacies in that talk page to which I constructively pointed out. At no point did I use insults, ad hominem attacks or other rhetoric to express some sort of "anger". I also don't appreciate you apologising to people on my behalf. Your reply just seems to be attempting to elicit some sort of response from me, so I'll just leave this at the comments I have provided already. Димитрий Улянов Иванов (talk) 21:59, 9 January 2025 (UTC)
That's an interesting interpretation.
Perhaps you'd like to revisit those exchanges, now that you know what everyone else means by 'medicine' and 'medical', and clarify exactly which of these references and subfields you think are not medical.
It would be helpful if you could provide us with an updated list of just the ones that are not from medical/clinical sources (which obviously include psychiatric organisations) and address the arguments made by the above in light of this new list.
Thanks.
Also, you go on claiming a "scientific consensus". Can you clarify which of your sources substantiates this claim? As the guidelines quoted in that essay you like state clearly, such claims should only be made if backed up by reliable references specifically making those claims.
Again, I don't know what your working definition of the phrase 'scientific consensus' might be. For reference, mine would be on the lines of 'when there is little to no dissent, among respected scientists in relevant fields, on a scientific question'. Oolong (talk) 09:20, 14 January 2025 (UTC)
Thank you, you are perfectly correct. I now see how the term has at least two meanings, one which refers more specifically to medicine itself or its connotations while it can also refer to examining the health or status of a person and thus encapsulates diagnosis more broadly. So indeed, psychologists diagnosing ASD can be thought of under "medical", at least in contexts where the term is prompted I guess. Thanks! Димитрий Улянов Иванов (talk) 00:30, 9 January 2025 (UTC)
For the ICD and "diseases", I think we can give much better examples of non-disease medical conditions. Consider:
In ICD-11, the code is MG43.9 if hunger is increased intermittently, and VV00 if you're just adding a note that something else happens when the person is hungry.
@Oolong <quote>"It is false to suggest listing a disorder in the DSM thereby medicalises it." </quote> Do you really think the current version reflect that sufficiently? I don't think it reflects that way. RIT RAJARSHI (talk) 16:35, 9 January 2025 (UTC)
I believe that a scientific consensus exists, but it is not Dimitry's version of a consensus. The present scientific consensus is that there are two current models of autism recognised by the scientific community, the medical model and the neurodiversity model. Both have a substantial weight of scientific publications behind them, plus a significant number of papers and books have been published examining their respective merits in side-to-side comparisons. As I have shown, the two models are not entirely incompatible and a number of experts advocate that the application of a selective combination of both models should be used to elucidate both theoretical and practical aspects of autism. On Wikipedia both models need to be reported in an equal and dispassionate manner, this is how an encyclopaedia should function. An encyclopaedia needs to reflect the reality of scholarship on any subject. A treatment of a contentious subject that does not do this, should not be a part of any encyclopaedia. Urselius (talk) 07:37, 6 January 2025 (UTC)
Is the neurodiversity model meant to be scientific, strictly speaking? For example, to exclude lived experience as a way of knowing things about the world?
I'm not sure how we can have a scientific consensus that a non-scientific model is valid. It would make more sense to care about what the relevant non-scientific scholars say about their non-scientific model. Scientists should not be trying to pass judgment on whether historians, philosophers, ethicists, etc. are correct.
Your premise is fallacious. If a concept is repeatedly examined, researched and discussed in scholarly publications by scientists, then it is scientific. The concept and use of the word 'neurodiversity was first used in an academic setting in a thesis of 1998, by sociologist Judy Singer, it has been in the domain of academic scholarship ever since. I see no functional distinction between scholarly work produced by medics, sociologists and scientists, all are in the public domain and are open to criticism from peers. All are valid sources for Wikipedia purposes. Baron-Cohen was trained as a psychologist, but has worked on a subject that has a large genetic element. I was initially trained as a zoologist, but worked on the genetics of infectious human diseases. Nit-picking and asserting baseless inferences on relative merit between what is science, what is medicine, what is psychology, what is sociology in relation to a subject that is relevant to all these disciplines is fundamentally pointless. Urselius (talk) 10:21, 6 January 2025 (UTC)
"Academic" does not mean "scientific". Science can happen outside of academia, and academia covers non-scientific subjects. Scientists also get to be interested in non-scientific subjects. International peace isn't a scientific concept just because Einstein wrote about it.
The concept of neurodiversity can be academic without necessarily being scientific. We might have a scholarly or academic consensus without necessarily having a scientific one. WhatamIdoing (talk) 19:05, 6 January 2025 (UTC)
The only prerequisite for the use of references in Wikipedia, is that they are reputable. The idea of a Wikipedia article on a subject such as autism being entirely or primarily dependent on 'scientific' sources is erroneous. This is my point. Autism has many facets, clinical, psychological, neurological, genetics, lived experience, interpersonal communication, sociological, disability-related, legal, educational etc. etc. All of these facets are relevant and reputable academic sources from all should be treated equally - this is supposed to be an encyclopaedia, not a scientific textbook. I am a professional scientist (now retired) and I find the fetishization of 'science', displayed by some editors here, deeply illogical when applied to a subject that has many non-scientific aspects.. Urselius (talk) 10:55, 7 January 2025 (UTC)
I agree that Scientism is a problem, but I'm not the one asserting that there is a "scientific" consensus about a model based on "lived experience, interpersonal communication, sociological, disability-related, legal, educational etc." WhatamIdoing (talk) 22:58, 7 January 2025 (UTC)
The reference to fetishization was not aimed at you. However, it has bedevilled moving the article towards a more holistic and inclusive treatment of autism. Urselius (talk) 14:26, 8 January 2025 (UTC)
Neurodiversity is a way of interpreting scientific findings (among other things). It's scientific in exactly the same sense that looking at autism as a disorder is scientific: they're both about how we interpret empirical findings, what kinds of things we look for, what kinds of evidence we consider.
It's not non-scientific, but it is philosophical, and political - just as the medical model of autism is. It's a paradigm, in the Kunhnian sense.
Your question provoked me to write this, exploring it in a little more depth (but it's still only about 700 words, roughtly a 3-minute read). Oolong (talk) 19:39, 6 January 2025 (UTC)
Philosophy and politics are non-sciences. If neurodiversity is philosophical and political, then it is also non-scientific.
I read your blog post. I (think I) understand that you believe your autism is not a disorder. But I want to know if you think that everyone with autism has a non-disorder form of autism. So: Muhammed Almaliti had autism. He died because his house caught on fire, and he couldn't figure out how to escape, even with help. Did he have a form of autism that (unlike yours) actually is a disorder, or do you think his autism was still not a disorder and there was some unknown but non-autism reason why he couldn't walk out of the house when he needed to? WhatamIdoing (talk) 21:46, 6 January 2025 (UTC)
Why can't it have scientific aspects, philosophical aspects, and political aspects? Seems to me that there can be both political and philosophical aspects to the work of a natural scientist or social scientist. FactOrOpinion (talk) 23:20, 6 January 2025 (UTC)
I think it could, but Oolong asserts that It's not non-scientific. When we're talking about ordinary medical practice ("what doctors do"), about half of it is Evidence-based medicine – and half of it is not. I have seen doctors be offended at any suggestion that "the art and practice of medicine" is not True™ Science. It is at best an applied science, and the ordinary, everyday experience involves a lot of non-science. There is nothing "scientific" about telling a patient that beer and doughnuts are not a healthful diet, but they like to believe that they are Scientists™. Perhaps it is somewhat similar with the neurodiversity movement: our culture values science, and our views on neurodiversity are good views, so our views need to be called "scientific". It doesn't involve anything like the scientific method – there is no scientific experiment you can run to determine whether all people have equal moral value, or whether people should be treated with respect and accorded autonomy – but these days, we all want all of our treasured beliefs to be considered "scientific". Two millenia ago, we would have done the same thing, but claimed it was "philosophical"; two centuries ago, we would have done the same thing, but claimed it was "religious". "Scientific" is just a word we use in this century to say that my views are correct. WhatamIdoing (talk) 02:16, 7 January 2025 (UTC)
I'll have to think a bit more about how I classify things as "scientific" or not. Research in the natural and social sciences is scientific work. Interpreting such research might or might not be scientific work, depending on whether you're digging into the details (especially with an eye towards how it could influence or give you insight into your own research / how it fits into the body of research in the discipline) or only accepting the surface results. Some physicians carry out medical research, but they're a minority. Ideally, all physicians interpret medical research, but I don't know whether they really dig in unless they're researchers themselves. Scientific research certainly isn't limited to the scientific method. Personally, I don't treat all my treasured beliefs as scientific; some of my most treasured beliefs are values. FactOrOpinion (talk) 04:06, 7 January 2025 (UTC)
Science, especially on humans, inescapably has political and philosophical dimensions. This regularly comes to the fore during a paradigm shift.
Is philosophy of sciencenon-scientific? We're not talking about a scientific theory (hence the inapplicability of the scientific method) but we're talking about science. Philosophy of science is something that scientists ought to take seriously, especially in more contentious areas of science, to avoid making epistemological errors.
Here's a fun one: Is the scientific method scientific? There's no scientific experiment you can do to determine if it's the best way of approaching empirical questions, is there?
It is interesting to note that Jerome Wakefield, who Dmitri likes to cite as the authority who resolved the question of what disorders are and how they relate to diversity, is not really any kind of scientist, certainly not primarily - he's a professor of social work, who works interdisciplinarily and has therapy experience. To quote his faculty page:
He argues for a middle ground position in which the concept of a physical or mental medical disorder is a hybrid value and scientific concept requiring both harm, assessed according to social values, and dysfunction, anchored in facts about evolutionary design"
Accompanying this, a scientific paradigm has also been emerging, albeit in a somewhat piecemeal way. More neurodivergent individuals have become involved in research, and more neurotypical researchers have begun to listen to neurodivergent perspectives. This is beginning to change how researchers formulate hypotheses and produce knowledge. Among other things, researchers increasingly recognize neurodivergent strengths alongside limitations, study cognitive problems as relational rather than as arising from individual deficits, and view neurodivergent disablement and distress based on a social model of disability rather than a medical model.
I've possibly linked all of these before, but here are a series of peer-reviewed articles talking about what neurodiversity means for science: [20], [21], [22], [23], [24] and [25].
In short, there's no 'pure science' when it comes to the study of human difference, and it's not clear what can be achieved by trying to disentangle 'science' from 'non-science' in this context. Oolong (talk) 09:44, 7 January 2025 (UTC)
Because the study of humans inescapably has non-scientific elements. I thought I was clear about that. Science can be done using the neurodiversity paradigm. This being the case, claiming that neurodiversity is non-scientific is misleading, at best.
Thanks for your reply, the references, and the thought experiment, but I'm afraid you are arguing with an egregious misrepresentation of my citations. I have not been relying on the studies by Jerome Wakefield. I did, however, reference this author as a historical account of when the definition may have originated. In my comments, I referred to the first International Consensus Statement on ADHD by scientists (Barkley et al., 2002), and the updated International Consensus Statement (Faraone et al., 2021-2024) endorsing the model. There is also an Updated European Consensus Statement (Kooji et al., 2019).
Faraone et al. is coauthored by 80 leading researchers, its contents are endorsed by 403 additional experts, along with numerous professional groups and guideline developers, across 27 countries and 6 continents (Supplemental Tables), thereby demonstrating a global scientific consensus.
As concluded in the consensus statements, this model for determining a neurodevelopmental disorder to be valid is scientifically established. Both reference sources such as guidelines internationally that the model is based upon, which encapsulate autism spectrum disorder.
As I have written before, I agree that the DSM Committees occasionally enact on policy or other reasons at the expense of scientific evidence and even scientific consensus. My colleagues and I have even personally dealt with such issues, so I am very well aware of this nuance. This is why I have not relied on the DSM but many reputable sources from around the world. In my experience, incidents where the DSM fails to reflect the science are usually evident with the contradictory consensus in the field. Димитрий Улянов Иванов (talk) 01:29, 8 January 2025 (UTC)
I suspect that some people here think of 'neurodiversity' as some sort of fuzzy and trendy sociological term. In reality it is a shorthand term that researchers, including geneticists and other scientists, use for a concept. This concept being, "The phenotypic expression of natural variation in human brain architecture and physiology, largely determined by genetic causality; this genetic causality itself due to natural variation in alleles that are found widely throughout the general population". As such, the concept is scientific, but far too long winded not to require a specific and shorter term for general use. Urselius (talk) 11:10, 7 January 2025 (UTC)
"Neurodiversity is the diversity of human minds, the infinite variation in neurocognitive functioning within our species" (pretty much what you said) but we also talk about the neurodiversity paradigm (which entails seeing this diversity in broadly positive terms, on similar lines to biodiversity, of which neurodiversity is strictly a subset) and the neurodiversity movement (a human rights movement based around these ideas).
Urselius, we could give the same definition for bipolar disorder, schizophrenia, and depression. "Natural variation" is not "good variation".
The Wakefield definition above ("requiring both harm, assessed according to social values, and dysfunction, anchored in facts about evolutionary design") resonates more with me, but it would require autism to be defined as something that harms the person, which conflicts with the neurodiversity paradigm of insisting that autism be seen in "broadly positive terms".
So I ask this specific question again: Muhammed Almaliti's autism prevented him from walking out of a burning building, even with his mother trying to help him walk out of his bedroom, down the stairs, and out the door to safety. They both died as a result of his autism. Does your concept of autism allow his autism to be disorder that actually killed him, or is his autism just a "natural" and "normal" difference? WhatamIdoing (talk) 23:18, 7 January 2025 (UTC)
The first question is how many autistic people are unable to leave a burning house and the second is how many autistic people's houses burn. Being tall can also kill one if one bumps one's head very badly into something. Being a woman can kill one because of complications at childbirth. Being homosexual can kill one because of the higher risk of HIV transmission. So if dying for such reasons as the above mentioned is only a very rare event than we would not consider the thing a disorder or disease. LogicalLens (talk) 00:18, 8 January 2025 (UTC)
@LogicalLens There is a global scientific consensus that ASD is a valid neurodevelopmental disorder, as indicated by international guidelines, consensus statements, systematic reviews and standardised diagnostic criteria etc. around the world. (for references, see Talk:Autism#c-Димитрий Улянов Иванов-20241126131200-Oolong-20241126104700). This is not synonymous with disease. To qualify for a disorder two criteria typically must be scientifically satisfied (International Consensus Statement on ADHD, 2002; International Consensus Statement, 2021-2024). First, there must be evidence establishing neurological variation (e.g., dysfunction, deficit, deviation) in a trait universal to humans. Second, this variation must cause significant impairment in major life activities and/or significantly predispose to increased morbidity and earlier mortality.
Homosexuality, transgender and left-handedness are examples of neurological variation that do not meet the second criteria and thus are not disorders. Impairment experienced by these, if any, is attributable to societal oppression and discrimination rather than the variation itself. In contrast, ASD does meet the second criteria. It significantly predisposes to injury, morbidity and earlier mortality and so these statistics are relevant as they are not just some extraordinarily rare occurrences.
Note: Some commenters have opined that the citations supporting the aforementioned scientific consensus are localised to a medical context. I do not agree with this characterisation. Please feel free to judge the pertinence of these citations for yourself.Димитрий Улянов Иванов (talk) 00:52, 8 January 2025 (UTC)
You seem not to have understood the full scope of the medical model. The medical model of disability proposes that the disability is rooted in the individual (which is then classified as a disorder or disease) and the desired outcome is to normalise the person to become as similar as possible to people without the „disorder“ regardless of whether medications to reduce features of it are currently available or not. Because of this focus it is often called the „individualistic model“. If a person classified as disabled has difficulties in the current environment and people assess these difficulties to stem from a „disorder“ within the person instead of the environment then it is a viewpoint from the individualistic or medical model even if no medical treatment or medical professional is involved. The social model, in contrast, asserts that the disability stems from an unaccommodating environment. Social-relational models acknowledge that there can be aspects of the disability that are best ascribed to the condition itself, but, as Dwyer points out [26], „neurodivergence sometimes comes with strengths (Carter et al., 2015; Russell et al., 2019), whereas social-relational models may, by drawing on the vocabulary of the social model and its use of the term “impairment” to refer to the characteristics of the disabled person, risk implying that neurodivergence is synonymous with impairment/reduced function.“. The neurodiversity paradigm proposes that autism is a disability but not a disorder. LogicalLens (talk) 02:27, 8 January 2025 (UTC)
ASD impairs people’s ability to do things that they enjoy, to take care of themselves and their daily needs, function in their relationships with family and friends, and in many other ways that have absolutely nothing to do with a society. Reducing autism to a mere environmental mismatch is highly trivialising and erases the harms and experiences that directly result from people’s various cognitive impairments. Димитрий Улянов Иванов (talk) 09:47, 8 January 2025 (UTC)
The claim that it does this "in many other ways that have absolutely nothing to do with a society" is completely unsupported. Nothing in the DSM criteria is unrelated to society. Oolong (talk) 09:52, 8 January 2025 (UTC)
Nope. Major life domains required for diagnosis to establish impairment can include self-sufficiency and self-care, such as through ineffective maintenance of personal hygiene or the distress experienced by restricted, preservative interests and mental preoccupation. These are not necessarily related to society at all, and are valid functional domains for consideration in meeting the diagnostic criteria Димитрий Улянов Иванов (talk) 00:36, 9 January 2025 (UTC)
Yeah autism can be troubling by itself but it would be stupid to say the environment has nothing to do with it, I'm leaning towards the disability side and saying; if the world was less loud sensory overload would be gone. That's one example of a problem that the world makes. Maybe both is true but idk why we were talking about this -- I'm so behind. Anthony2106 (talk) 12:07, 8 January 2025 (UTC)
No, that's not true. If the world were silent, then sensory overload would still exist for people whose sensory problems focus on lights, smells, textures, tastes, etc.
This is part of the philosophical aspect of what we're trying to decide. At its loudest, thunder can match a rock concert. If someone's nervous system can't handle the noise of a windstorm or thunder is the problem in that person's limitations, or in the fact that thunderstorms exist? When an individual and nature don't fit, evolutionary biology would say that it's the individual who has the problem, not nature. Perhaps the neurodiversity paradigm says that the person is fine and it's nature's fault for being so noisy? Or simply ignores how terrifying thunderstorms are for many autistic kids, because that doesn't fit into the model of the kid being fine and other people causing the problems? WhatamIdoing (talk) 21:24, 8 January 2025 (UTC)
1) Society can provide accommodations even for natural events like thunderstorms (insulated home, earplugs, earmuffs etc.).
2) Invoking evolution as an argument for the disorder view represents an Is–ought problem. Just because people with certain characteristics had a lower chance of surviving in the past and the environment didn't provide accommodations (observation), it doesn't mean it is correct do assume that it is the individual who should change (normative judgement). LogicalLens (talk) 23:48, 8 January 2025 (UTC)
"Society can provide" a lot of things, but total protection from the noise of a major storm is not one of them. Based on California's recent experience, we can't even provide a decent prediction of where a tornado might form. I heard that the tornado warning was issued for 50 miles away from where it actually appeared. Good luck building a sound-proof bunker when the tornado's already headed your way.
I mention evolutionary biology because Oolong quotes Wakefield above as saying that this is the perspective used in the definition of disorder: "the concept of a physical or mental medical disorder is a hybrid value and scientific concept requiring both harm, assessed according to social values, and dysfunction, anchored in facts about evolutionary design".
We have "harm, assessed according to social values": The person is extremely distressed by the sound of a storm, and society's values include minimizing distress.
We have "dysfunction, anchored in facts about evolutionary design": This isn't a trait that has anything survival benefit to the person.
Given a definition that says harm+dysfunction==disorder, then this is a disorder. You might not like that, and you might prefer that it were instead called something more "positive", but it still is a disorder (according to that definition). WhatamIdoing (talk) 07:18, 9 January 2025 (UTC)
Lots of people (and other animals) are scared of thunderstorms - and distressed by all sorts of other stimuli. It's not at all clear that this is automatically a problem; you have certainly not demonstrated dysfunction here. There are indeed evolutionary reasons why animals are distressed by some stimuli. For more on the evolutionary front, please see Chapman (2021). Oolong (talk) 08:54, 9 January 2025 (UTC)
I doubt that lots of healthy people are distressed by the noise of thunderstorms. It's not unusual in children, but a significant level of distress is unusual in adults. Perhaps it's just my own circle, but I can't think of a single adult who finds thunder distressing and isn't autistic. (I would also expect this to be experienced by people with some other neurological problems and some people with PTSD, but I don't know anyone with that combination.) How about you? How many neurotypical, non-traumatized adults can you think of who meltdown from sensory overload during a thunderstorm? WhatamIdoing (talk) 17:57, 9 January 2025 (UTC)
Maybe I now understand your point a bit better. I’m going to reply to several of your posts here.
You assume that if there are negative aspects about something then it has to be classified as a disorder. Let me explain why this is not necessarily the case. An important paper about the revision of transgender diagnoses in the ICD-11 [27] states: "Distress and dysfunction were more strongly predicted by experiences of social rejection and violence than by features related to gender incongruence.". So the ICD-11 went from the term "gender identity disorder" to "gender incongruence" which is not a disorder but listed in the diagnostic manual in order to ensure access to needed gender-affirming care and they did so without being fully sure that all and every aspect of distress in trans people is because of the environment. The main reasons for the re-classification were that trans people want their gender identity to be respected and in some cases, to change the characteristics of their bodies instead of being talked or pressured out of their gender identity: "Treatment most often consists of specialized supportive mental health services as well as family and social (e.g., school) interventions while treatments aimed at suppressing gender-variant behaviours in children are increasingly viewed as unethical." This is a striking similarity to the rejection of ABA therapies directed at autistic children in order to make them appear more neurotypical.
Most autistic people don’t want to be turned into a non-autistic person ("cured") and those who want to be "normal" do so because they think it is necessary for being able to socialise, they would want to participate in situations that are inaccessible to them because of a sensory mismatch or because they consider their support needs in their daily lives or their unemployment to be shameful. Reducing accident risk is not among the relevant reasons why some autistic people want a "cure" and if it weren’t for the aforementioned reasons, they would not consider changing their brain so dramatically just to reduce accident risk. The percentage of accidents that contribute to increased premature mortality in autistic people is quite small, other causes are more common [28]. These aspects are not an insurmountable barrier for autism not be considered a disorder so we are talking about quite marginal aspects of the pathology vs neurodiversity debate here. LogicalLens (talk) 03:55, 10 January 2025 (UTC)
In the example here, distress and dysfunction are predicted less by social rejection than by the fact that noise hurts (some) autistic people.
In general (when not only focusing on specific aspects), the distress and disadvantages of autistic people are mostly due to societal barriers and ableism. Just like you can focus on specific situations like natural, very loud (and rare) noises being a problem for the autistic person primarily because of their autism, one could focus on the distress because of the mismatch between gender identity and the physical characteristics of one's body in transgender people and then say that most of that might be caused by the transgender identity itself and not by society. LogicalLens (talk) 08:21, 10 January 2025 (UTC)
Claiming that "Reducing autism to a mere environmental mismatch is highly trivialising" is in fact trivialising. There is nothing trivial at all about environmental mismatches. They are often intensely distressing and disabling.
Many, many grave harms and bad experiences are clearly avoidable by adjusting the environment in identifiable ways. Nobody's harms or experiences are being erased by saying that they arise from a mismatch between the person and their environment.
The idea that any of these harms and experiences, the reality of which is not in question, are direct results of somebody's cognitive makeup, and hence impossible to prevent without changing the person, appears to be pure speculation. Perhaps it is true, but I for one have never had experiences that didn't depend on my environment in some way. It's hard to imagine what kind of empirical evidence could plausibly demonstrate that a particular class of experiences has nothing to do with the experiencer's environment, but if you believe you have such evidence, by all means share it here. Oolong (talk) 16:20, 8 January 2025 (UTC)
First, the fact that an impairment may be implicated in an environment does not translate that the environment is therefore the ultimate cause of the impairment. Theoretically, eliminating all other humans may alleviate the impairments people with social anxiety disorder experience, but this is a completely unreasonable, practically impossible approach that is further complicated by the fact that effective social interaction is a biological adaptation of humans, as well as that they often want to interact with others without feeling anxious. Thus, when the adaptation becomes disrupted enough that it can no longer function effectively, it can be - and is - viewed as an inherent impairment to the disorder.
Similarly, ASD can impair people's functioning including in occupational functioning, cohabiting with others, in their relationship with family and friends, and other domains important to them, in ways where the responsibility for reducing an impairment cannot be entirely delegated to the surrounding people or environment.
ASD causes difficulties not just with doing the things people must do (our obligations to society), but the things they want to do (our agency to do the things we find fulfilling in life). As such, the potential for a person to select a less impairing environment is not a valid argument for attributing the impairment away from an individual's symptoms. Major life domains affected by ASD also include activities such as self-sufficiency and self-care, where one cannot neglect them and simultaneously be unimpaired. These are valid functional domains for meeting the diagnostic criteria.
ASD also impairs functioning in ways unrelated to a society and even an external environment, such as with the distress experienced by unwanted, restricted and preservative interests and mental preoccupation.
Natural variation in neurological makeup is not necessarily variation with purpose. Natural variation is a fact of existence, but nature does not seek to moralise. Димитрий Улянов Иванов (talk) 00:17, 9 January 2025 (UTC)
This is interesting, because relying overmuch on the idea that "society can provide" whatever it takes to eliminate disability sometimes ignores the agency and desires of the affected person. For example: In the US, two-thirds of autistic teenagers without intellectual disability want to learn how to drive. Only half of them actually earn a drivers' license over five years.[29] (For those outside the US, our driving instruction process is very lenient by international standards. The pass rate for the general population in the US is around 98%; almost anyone who actually wants to get a driver's license can do so easily, and usually in less than one year. If you're 18, the usual rule is: take a quick multiple-choice test, have a friend or family member teach you how to drive, come back as soon as you're ready to show the examiner that you know how to drive. If you're 15.5 years old, the process is a little more involved, but not much. About half of teens pass the practical driving test on their first try.)
Society can provide alternatives, like bus service and family members who will drive you.
But what if you actually want to have a driver's license, and you want to be able to drive independently? Society can't provide that if you don't have the necessary skills (e.g., multi-tasking, interpreting others' intentions, knowing where their body/vehicle is located in space, not being distracted by a leaf that lands on the windshield, not being consumed by anxiety when other drivers don't do what you expect...). Society isn't disabling people by refusing to give them a license when they don't have the skills, and society can't provide the necessary skills to everyone (autistic or otherwise) who doesn't have them and wants to be allowed to drive. WhatamIdoing (talk) 08:00, 9 January 2025 (UTC)
Thank you, you make very good points. I sometimes see this as politically driven that people should partake in societal activities according to their abilities so functional impairment is reduced, irrespective of peoples' personal agency, autonomy, and aspirations. I find it telling how forms of biological variation that are not disorders, such as sexuality, to which ASD is frequently compared to, do not lead to impairment in ways that conflict with the above. The impairment, if any, is attributable to society because it's usually in the form of discrimination and oppression, which by eliminating obviously wouldn't conflict with what the affected person would want, nor could it reach a degree of impracticality or unreasonableness. People with ASD also experience such oppression but this is not the primary or only impairment. Димитрий Улянов Иванов (talk) 22:27, 9 January 2025 (UTC)
The societal stress is not always due to DELIBERATE discrimination but due to cognitive and communication mismatch (Double empathy problem)
I understand, but deficits in social interaction is not the only symptom dimension and there are both practical and ethical limits to the degree an impairment can be accommodated, even if it's societally implicated, and it can also conflict with what a person may want to do, e.g. an autistic person may want the ability to effectively communicate. This does depend on the individual and symptom severity of course. Димитрий Улянов Иванов (talk) 23:17, 9 January 2025 (UTC)
Let's stipulate that the inability to safely drive a car is due to a "cognitive mismatch" between what the task requires (e.g., multitasking, not getting distracted) and what an individual autistic person can realistically do (e.g,. not multitasking, being easily distracted).
How does the fact that there is a cognitive mismatch between what the person wants to do and what the person can do mean that the thing causing this cognitive mismatch is somehow not a disorder? WhatamIdoing (talk) 23:27, 9 January 2025 (UTC)
@WhatamIdoing Pardon, it seems miscommunications took place again.
I think this is question is reply to my comment "The societal stress is not always due to DELIBERATE discrimination but due to cognitive and communication mismatch (Double empathy problem)".
Did I wrote anywhere that the social stress is the only kind of stress an Autistic person face?
Did I claimed anywhere that driving car is a social or communication task?
I do not think all Autistics are unable to drive a car. However, for those able to not drive a car, it is indeed partly due to cars being designed for neurotypicals. Battery operated chair cars without complex gear system would not be that hard to operate. Also the traffic jam and navigation is partly social. Or think of a joystick operated car? I think a great more number of people might be able to use them, if not all.
I think on many place I have acknowledged difficulties and cooccuring conditions.
I did not wanted to suppress your viewpoints... I wanted that encyclopedia should present existing options and other viewpoints too. I hope you consider them with kindness.
Driving a car is, as you point out, partly a social task. From what I see on social media, the problem isn't "the car", so a joystick would not help. The problem is "driving", and specifically:
knowing where you are, and
coping with inscrutable/unpredictable other drivers.
From what I've read, they estimate that about 30% of autistic adults in the US have a driver's license, compared to about 90% of all adults in the US. Autistic adults who can drive additionally tend to restrict themselves (e.g., only driving to familiar destinations, never driving at night or when it rains, never taking any passengers with them). Autism is preventing these people from being able to drive. WhatamIdoing (talk) 03:16, 10 January 2025 (UTC)
Robert Chapman suggests the concept of "neurotype dysphoria"[30] for this, covering cases where people are distressed because of a mismatch between their neurotype and their desires. They state that an adult able to consent could change their neurotype if they want without calling their neurotype a disorder which harms the majority of autistic people who don't want to be "cured". This is a similar framing that was used for homosexuals in the past who experienced their homosexuality as an entity separated from their identity and wanted to be converted ("ego-dystonic homosexuality"). Ultimately, this concept was abandoned because now it has become clear that this desire was rooted in internalised homophobia. In an interview, Chapman mentions that it might be an intermediate concept for autism as well and might even be viewed as unacceptable by society in the future but can be useful as of now[31]. Without making a judgement about whether the same is likely to happen for neurotype dysphoria in the long-term, could you agree on using this concept? LogicalLens (talk) 02:12, 10 January 2025 (UTC)
It could indeed be a starting point. Proponents of the neurodiversity view would of course argue that autism is more than just a neurotype and also a social construct to some degree but neurotype can be used as a neutral term for autism. Do you find the concept of "neurotype dysphoria" useful for those autistic people who don't like being autistic? LogicalLens (talk) 05:39, 10 January 2025 (UTC)
No, I don't. And I think that it's a marginal enough concept at this point that I wouldn't include it in Autism.
I don't see neurotype as a neutral term for autism. It seems to be used by some for "whatever's happening in my brain, some of which is autism and some of which is some other things". In other cases, it seems to be a vague category – like saying "He has a developmental disorder" when you ought to say "He has Down syndrome". WhatamIdoing (talk) 07:49, 10 January 2025 (UTC)
Using "developmental disorder" instead of Down's syndrome is only inaccurate if it is not clear from the context that one is talking about Down's syndrome. In the autism article, it is clear we are talking about autism so when we use the term "neurotype" as a replacement in order not to constantly write "autism" it is clear what it means. If we don't want this, we could just write "autism" all the time although it sounds repetitive.
I don't know whether you have noticed that I am not just talking about using the term "neurotype" but have suggested the concept of "neurotype dysphoria" (dysphoria is a word for unease or dissatisfaction) that was proposed by Robert Chapman[32] in order to account for autistic people who don't like being autistic without having to call autism a "disorder". LogicalLens (talk) 08:31, 10 January 2025 (UTC)
"How many people's houses burn" is not relevant. I've seen estimates that suggest perhaps as many as 30% of diagnosed autistic people, and at least 10% of all (diagnosed and undiagnosed) autistic people have impairments that could predictably put them in dangerous situations or prevent them from receiving help in escaping from a dangerous situation.
Autistic people, on average, have significantly (some estimates say 20 to 40 years) shorter lifespans than neurotypical people, and accidental deaths are one of the biggest causes of the disparity. WhatamIdoing (talk) 02:17, 8 January 2025 (UTC)
1) The shorter lifespan has many other reasons, especially suicide and barriers in healthcare, as well as an increased risk for many co-occurring conditions that reduce health. Please give me citations if you think that the thing you mentioned is a major contributor.
2) Some autistic people being predisposed to the inability to leave dangerous situations is not a reason to pathologise autism as a whole. First, individuals without these risks should then not be seen as disordered. Second, not the whole presentation of being autistic should then be seen as a disorder but only the aspects that lead to the risk. Remember that autism is most likely a clinical construct that was built for practical reasons without a single underlying cause, so there is no need to encompass the entire autistic spectrum here. LogicalLens (talk) 02:37, 8 January 2025 (UTC)
"We also found that deaths in individuals with autism were nearly 3 times as likely as were deaths in the general population to be caused by unintentional injury."[33]
"Elevated death rates were observed for several causes, including seizures and accidents" [34]
"Associated medical disorders (including epilepsy with cognitive impairment) and accidents accounted for most of the deaths"[35]
"The profile of the top causes of death for the ASD cohorts and the general population differed. The leading cause of death for those with ASD only was deaths caused by injury and poisoning...death from accidents was prominent specific causes of death for both those with and without ID."[36]
"These findings illustrate that poor social communication may well predispose autistic individuals to accidental death"[37]
Suicide is an example of subgroup differences: autistic people (especially females[38]) without intellectual disabilities have a higher than average rate of suicide, and autistic people with intellectual disabilities have a lower than average rate of suicide.
For your 2), I suggest that "Some autistic people being predisposed to the inability to leave dangerous situations" is a good reason to not de-pathologize autism completely. Though looking at the sources above, the bigger risk is probably choking (suffocating on inedible objects) and drowning (even if you really like swimming and really, really, really want to go swimming Right Now, not every bit of beautiful water is safe for swimming). WhatamIdoing (talk) 06:12, 8 January 2025 (UTC)
While I agree that having a higher risk of dying by accident is a sub-optimal thing, I don't think calling autism a disorder is the right response to this.
Children in general are far more vulnerable than adults, especially but not only when left alone. Nevertheless, being a child is seen as normal instead of a disorder. Even every person has a certain risk for an accident that is not seen as indicative of a disorder. I don’t think we are obliged to draw quite an arbitrary line there where we think a non-normal condition has increased the risk, especially because the percentage of autistic people dying by accident is still pretty low even if increased in comparison to non-autistic people. People have vulnerabilities and some people have more vulnerabilities than others, especially disabled people. Neurodiversity advocates argue for a non-pathologising disability framework[39] that still allows for some interventions for the individual. Leadbitter et al. mention functional communication (whether it be spoken or some other means of communication), anxiety, inertia and “intolerance of uncertainty” as potential intervention targets [40]. Reducing risks for accidents could also reasonably be seen as a desired outcome without trying to make the person non-autistic, just as reducing accident risks for people in general is seen as desirable.
The main reason why autism is classified as a disorder and researchers are trying to find a cure is the ascription of “deficits” in social interactions in daily live to the individual instead of viewing these difficulties as stemming from the interaction between the mostly non-autistic environment and the autistic person, the increased risk for accidents is only a marginal reason.
The problem is that all kinds of things (pain, support needs, vulnerabilities, prejudiced assumptions about normality) are lumped together under the terms disorder/disease. I would like to separate these things. If something causes pain and a cure is considered the right response, then it is a disorder or disease. If it means the person has higher support needs or vulnerabilities than others without necessarily wanting a “cure”, then it is a disability. If it is just a violation of prejudicial assumptions about “normal” functioning, then it is nothing of these and just a feature holders of which are discriminated against. Autism, in my view, combines aspects of the latter two without being a disorder to be “cured”. LogicalLens (talk) 00:41, 9 January 2025 (UTC)
We might not be "obliged" to notice that a 300% rate of dying from injuries, but I think we should. This is a statistically abnormal deviation in the rate premature death across all ages, not an "arbitrary" line.
This is "autism + intellectual disability = probably won't see their 40th birthday" level of risk. People with Down syndrome live longer than that (the median is around age 55–60), and DS is notorious for premature death due to heart disease and leukemia. Autistic people without intellectual disability have a median survival that is not much older than DS.
If something causes premature death, then a cure – or at least an effective treatment – seems like the right response to me. Some of these deaths happen because the now-dead person had those " “deficits” in social interactions", where "social interaction" means "understanding what that person means when they're saying 'Stop that, that's dangerous!' or 'No, we can't go swimming here. It's dangerous! Let's get your swimsuit and go to a real swimming pool.'". WhatamIdoing (talk) 08:14, 9 January 2025 (UTC)
No, in my view 'disorder' remains an unhelpful framing. What do you think it adds, specifically? Autism is a disability.
We can't prevent autism, and there are strong arguments to say that we shouldn't try. There are no actual treatments, but we have seen a whole parade of harmful quack treatments, many of which continue to be promoted.
Meanwhile, there are many, many things we can do to make life better for autistic people, at the societal level - for all autistic people. Oolong (talk) 09:46, 8 January 2025 (UTC)
I think that framing it as a disorder adds the understanding that autism is sometimes harmful. Autism is harmful when, despite all feasible efforts, the person's needs still cannot be met. We could theoretically ban fireworks to prevent noise from bothering noise-sensitive autistic people. We cannot ban the noise of thunder, tornadoes, or hurricanes.
You say that "many, many" harms and bad experiences are avoidable. My point is that "many, many" is less than "all", and the ones that you have already admitted are unavoidable is where the "disorder" exists. WhatamIdoing (talk) 21:54, 8 January 2025 (UTC)
All sorts of things are sometimes harmful. Sorry, but this is an absurdly low bar.
White people, especially redheads, are unavoidably going to get sunburned - so that's a disorder too, right?
The same traits that make me uncomfortably sensitive to loud noises make me sensitive to noises that I want to hear - be they warning sounds, or intensely pleasurable auditory experiences. Oolong (talk) 09:44, 10 January 2025 (UTC)
I usually hesitate to mention my personal experiences but I feel compelled to do so here, which I hope sharing may help clarify the why it being a disorder is necessary. It is simply the case that many of us experience serious impairment and distress in some form or other, in aspects of our lives that are dear to us, as a direct result of our ASD symptoms. This has been validated scientifically, and we cannot tolerate a movement or advocacy that tells everyone that the hurt and struggle they're experiencing is really just caused by their modern society being shit and that the issues caused by their neurology would be solved if society were somehow magically better. As someone with mild ASD myself, in my view modern capitalist societies are shit, but also the architecture of our brain doesn't necessarily work the way we want it to.
Here's one example: I find strong and unpredictable sensory stimuli physically and mentally painful. Coming into contact with a piece of fabric can leave me overwhelmed, and it makes even the simplest of activities such as brushing my teeth far more difficult than it needs to be. There is so much tooling available, and things that can help, but there is nothing that can make up for the overwhelming effort it takes to do certain tasks and sustain that for more than a few minutes. Many of these are activities required for self-sufficiency or tasks I want to do and are directly, innately disrupted by the symptoms of ASD, and it hurts. It hurts that I have so much trouble doing these things. And while I don't have ADHD or CDS, an autistic family member of mine does and can further describe the interplay of comorbidity in exacerbating such symptoms.
Accommodations help, but its far from perfect. It doesn't address all of our needs. There is nothing society can do to accommodate all of peoples' impairments, distress and predispositions to various adverse risks in life. This is not ultimately society's fault. It’s simply the nature of living with a condition like ASD
The diagnosis underscores that our neurological variation becomes impairing when sufficiently severe. Declassifying it risks eliminating or restricting access to entitlements we have fought obtaining, under a false and trivialising perception of disability or impairment being rooted entirely in a society, rather than the symptoms themselves. Димитрий Улянов Иванов (talk) 23:48, 8 January 2025 (UTC)
You mentioned hygiene above. In developed countries, we tend to think of basic hygiene as a social thing: "You need to take a shower so the other kids at school won't think you stink".
However, from a biomedical viewpoint, hygiene isn't primarily about the social aspect. It's about preventing skin infections. People need to wash their bodies every now and again so they don't get itchy, oozy, painful rashes. If a neurological condition makes a person ineffective at keeping their body clean (this happens in dementia, too), then this isn't just a social impairment. It's a infectious disease risk. In other words, if autism prevents someone from taking basic care of their body, it's a disorder, not an equally valid and valuable "difference". There is nothing valuable about dermatosis neglecta, nor about preventable fungal or staph infections. WhatamIdoing (talk) 08:30, 9 January 2025 (UTC)
That's precisely the point I was trying to emphasise there, that impairment can occur irrespective of social factors or not even necessarily be implicated in society, and thus can be attributed to the symptoms directly. Thanks for your comment. Димитрий Улянов Иванов (talk) 12:56, 9 January 2025 (UTC)
@WhatamIdoing @Димитрий Улянов Иванов @Oolong @FactOrOpinion and all other users: I do not thing social model or neurodiversity deny any of the biological co-occurrences. I think this is a very bad misunderstanding both neurodiversity and social model.
The problem is: The way we "frame" something as a "disease" or "disorder" inevitably comes with the consequence of a seek for cure, prevention, or erasure, or intervention.
Autism is a neurotype. It is also a part of the person's perception and worldview. We cannot ethnic cleanse the cognitive minority. Also we cannot love a version of the person (minus Autism) that does NOT exist. We cannot extinguish the things helpful for a person.
So called "Low function" Autism exists; but there are people who does not think the existing dominant neurotypical-favored pathology model is the right solution. Here is a statement from somebody:
"i really wish there was support and validation for us 'low functioning' autistics. not for the parents but for us. im an adult. i cant take care of myself, i cant even work. i dont need articles on 'how to care for your low functioning autistic child thats so clearly a monster and youre the godsend tough #warriormom'. not only is it incredibly dehumanising but extremely unhelpful.
@WhatamIdoing @Oolong @Robert McClenon Fishes are not "Normal" human being. Fishes can't (usually) breathe on air. Would you transplant lungs into fishes/ genetically engineer fishes? Or you would put them in water?
Autism is inherently defined as a "social interaction and communication disorder", (and I think this one matter is pretty consistent between Kanner, Asperger, Sukhareva, Gilberg, DSM/ICD versions, etc.) and "communication" cannot happen through 1 person it takes at least 2 person. If we think of only 1 "normal" communication style or modality, and describe the other as the pathological one (which inevitably imply cure or extinguish) then we only increase pain and suffering, left with zero social support and acceptance. It is not about mild severity or significant severity. It is the matter of involvement of more than one person and their cognitive pattern or communication modality.
I am not sure if here people are trying to create new definition of Autism solely based on negativity.
My impression is that the neurodiversity movement is trying to create a new definition based only on traits they find valuable. Savant-like focus on details? That's a valuable job skill, so that's autism. Inability to brush teeth or bathe more than twice a month? That's a bad thing, so that's not autism; it must be a completely separate condition that just happens to co-occur in some people who also have autism, but it can't be autism, because if we admit that it were autism, then at least some parts of autism would be something worth preventing, curing, or treating.
BTW, there are "disorders" that don't need prevention, treatment, or cure. For example, 80% of 80-year-old men technically have prostate cancer. But almost all of them will die from something else before the prostate cancer gets big enough to cause any problems. Framing something as a disorder does not inevitably result in demands for a cure. WhatamIdoing (talk) 21:43, 9 January 2025 (UTC)
That is my impression as well. Some advocates portray ASD as a binary condition that occurs either with or without comorbid intellectual disability (ID) and thus conclude there is no severity spectrum of autism, implying the more significant of impairments are explicable through ID. this ignores that many level 2 and level 3 people with ASD do not have this comorbidity and ASD is at its core a spectrum disorder, not a dichotomy.
I do not agree with the position "My impression is that the neurodiversity movement is trying to create a new definition based only on traits they find valuable. Savant-like focus on details? That's a valuable job skill, so that's autism. Inability to brush teeth or bathe more than twice a month? That's a bad thing, so that's not autism" Neurodiversity encompasses both high and low support need folks (although individual interpretation sometimes differ). I guess some of the editors are confusing neurodiversity with "Aspie supremacy". Nope, valuing person solely on capabilities or social contribution or usefulness is one of the worst ableist thing humankind can commit! Up to my knowledge, neufodiversity adherents do not support Aspie supremacy! The bathing or brushing example I gave clearly identifies as Autistic.
The problem with "functioning labels" (not "support need levels") is that, the high function label takes away access to support, low function label takes away human value. It is not that suffering does not take place. The point is human value is taken away.
You are correct, @Rit, and some of the claims being made here are way out.
People, if you're making assertions about what neurodiversity does or claims, you need to be able to back them up.
@WhatamIdoing and @Димитрий, you may well share the impression that "the neurodiversity movement is trying to create a new definition based only on traits they find valuable" but this is simply fiction. If it wasn't bad etiquette on personal comments, I'd be slapping [citation needed] tags all over the place here.
I know you haven't based this impression on reliable sources. Literally nobody who understands the field thinks this, let alone people actually advocating for neurodiversity, and you have already been presented with a whole series of peer-reviewed and other sources that directly contradict this.
With all due respect, I beg you to take this more seriously, if you plan to continue engaging with this discussion. You appear to be misunderstanding very fundamental things about the neurodiversity movement and paradigm. It is stressful and time-consuming for everyone else having to correct such mistakes; we shouldn't have to.
No, it is not fictional. Many advocates of the movement focus on the benefits of these conditions, often at the expense of dramatically overstating or inventing them, while advocating against treatment of disorders in favour of only accommodations.
Here is one example of that by the economist, a popular trade media publisher, who recently publicised this neurodiversity perspective for ADHD: https://archive.is/hNPIQ#selection-971.0-971.40 . As I recall in reading your blog post from beforehand, there was a clear advocation against treatment and disorder validity for not just ASD but ADHD as well, under the broader neurodiversity movement.
There is a global scientific consensus ADHD is a valid disorder and that medication should be the first-line intervention for ADHD (International Consensus Statement, 2021), due to its high effectiveness relative to far less effective social interventions. No accommodation comes close to eliminating the impairments of the disorder, as society is not the ultimate cause of its impairments. Additionally, evidence from meta-analyses and systematic reviews that combine the primary literature have shown that people with ADHD, the disorder, are not more creative on average, nor that reducing symptoms with treatment impacts such creativity (Hoogman et al., 2020;Paek et al., 2016; Healey et al., 2008; Abraham et a., 2014). In every domain studied in the International Consensus Statement, people with the disorder do not outcompete typical people but often are worse in their performance. Millions of people with ADHD endorse treatment of their ADHD with stimulant medication (Cortese et al., 2024), which conflicts heavily with any advocation against treatment. All of this disproves the claims in that trade media article advocating ADHD is not a disorder, for minimal or no treatment, and only use of accommodations - claims that are fairly ubiquitous across the movement. Димитрий Улянов Иванов (talk) 12:22, 12 January 2025 (UTC)
"Many advocates of the movement focus on the benefits of these conditions, often at the expense of dramatically overstating or inventing them"
You're just completely disregarding the scientific evidence and consensus I cited in your response and fixating on the smallest of an issue. I was citing that post as an example to demonstrate the issues, of course that one post may not adhere to each and every piece of rhetoric from the movement.
One simply has to search key terms on the Internet to find similar narratives regarding supposed benefits that are indeed false or dramatically overstated as substantiated by an extensive body of research. Here is an example of that: https://www.additudemag.com/attention-deficit-disorder-vast/
It's unfortunate you don't acknowledge the many issues I point out with the neurodiversity-only framing, and with claiming the totality of impairments are attributable to society. Димитрий Улянов Иванов (talk) 15:50, 12 January 2025 (UTC)
Robert Chapman [41] and many others in the neurodiversity movement do not reject using methylphenidate in ADHD people because they share a progressive worldview that advocates for liberal drug policies, so just as someone should be allowed to use marijuana, they should not be prohibited from using methylphenidate if they freely choose to do so. The problem they criticize is a society that creates a pressure on ADHD people to use it in order to function in a world that sets normative requirements about functioning.
You seem to have quite a chaotic, irresponsible kind of people in your mind when you think about the neurodiversity movement. Autistic doctor Mary Doherty says in a presentation for Cell Press that people, including clinicians, who really understand the neurodiversity paradigm don't go back to the old view because they see the benefits it has and resistance to the new paradigm is because people have misunderstood certain key elements of it: [42]
You are again talking about ADHD although this article is about autism. There are similarities in viewing both things as an expression of neurodiversity but the neurodiversity movement is far more advanced for autism than it is for ADHD. Maybe it is your professional focus on ADHD that is the reason why you have missed the growing importance of the neurodiversity paradigm for autism.
Using a neurodiversity-only perspective has not been proposed by anyone here. The goal is to write an article that encompasses both the medical/pathology model and the social/neurodiversity paradigm. The proposal by @Oolong also suggests writing that it can be argued that some aspects of autism can be inherently disabling. LogicalLens (talk) 02:15, 13 January 2025 (UTC)
Sorry but Oolong was referring to the neurodiversity movement in general. I understand this talk page concerns ASD and I don't mean to generalise, but the neurodiversity movement encapsulates ADHD in their claims - as Oolong has also done in their blog post - and I have addressed the issues with it in regards to ASD. And they do in fact explicitly advocate against the use of treatment in replacement of accommodation.
The facts are based on extensive scientific evidence, not perceptions or wishful thinking. The issue is not modern society pressuring people to undergo treatment. Even the developers of CBT (ie., Ramsay, Solanto, Safren) acknowledge in the manuals that accommodations are no where near as effective as medication and must often be combined with medication for the patient to profit from them. So viewing societal changes as a stand alone approach to alleviating impairment is not supported in the scientific literature. Meta-analyses of twin and families studies indicate its symptom severity is influenced by genetics, and to a small extent, neurobiological events; not the rearing social environment. ADHD by virtue of its executive functioning deficits impairs a wide array of functioning unrelated to society,[49][50] and ultimately leads to a reduced life span of about 13 years.[51][52]
Known reports of ADHD go back to 1753 (Kernebeek et al., 2024), and the journal Nature published a meta-analysis examining ADHD gene variants in samples of modern, ancient, and archaic human populations going back to Neanderthals. They found substantial evidence that natural selection has steadily acted against these genetic variants over the course of at least 45,000 years, which means ADHD has been impairing way before modern societies (Cucala et al., 2020).
The draft written by Oolong doesn't seek to suggest writing ASD is inherently impairing at all. It simply erases much of the contextualising detail on this issue from the existing lede, while focusing the article on depathologising the disorder. This completely contradicts all of the national and international guidelines, systematic reviews, scientific consensus statements, and diagnostic criteria I have been citing and thus conflicts with Wikipedia guidelines. Димитрий Улянов Иванов (talk) 08:51, 14 January 2025 (UTC)
I'm not "fixating on the smallest of an issue" at all. @WhatamIdoing made a claim, which you repeated, that if true would be profoundly important, but which is in fact - I'm repeating myself here - pure fiction.
Your response to having this pointed out is emblematic.
Let's recap how this went, lightly paraphrased:
WhatamIdoing: "the neurodiversity movement is trying to create a new definition based only on traits they find valuable"
Me: That's just not true at all. Please be serious.
You: Here is someone with no apparent connection to the neurodiversity movement, writing an anonymous leader for The Economist, arguing that there are good various good things about ADHD, which I disagree with.
Me: How is that relevant, like, at all?
You: Why are you fixating on what we were actually talking about? Here's another piece about ADHD that I disagree with. Oolong (talk) 08:44, 13 January 2025 (UTC)
I'm trying to keep in mind that Robert McClenon has asked us to "Comment on content, not contributors" (which is sometimes hard for me, but I think is good advice) and has also stated that "our objective is to change the focus of the article from viewing autism purely as a medical disorder to presenting multiple viewpoints on autism as they are described by reliable sources." WhatamIdoing, Димитрий Улянов Иванов, are there citations in the field of autism to substantiate the claims "the neurodiversity movement is trying to create a new definition based only on traits they find valuable" and "Many advocates of the movement focus on the benefits of these conditions, often at the expense of dramatically overstating or inventing them"? If so, would you present them? Thanks. (My sense is that text about this wouldn't go in the lead, but would instead go somewhere in the body. So if there are citations, let's just hold onto them for the time being.) If not, then these claims don't help us. The moderator also said "I would like each editor who agrees that the focus of the article should be changed so that it describes both the medical paradigm and the neurodiversity paradigm either to draft a revised lede section for the article, or to provide a plan for a coordinated effort to rework the sections of the body of the article" Oolong has presented a draft. Is anyone else who wants the focus to change planning to respond to Robert McClenon's request? (I cannot; as I noted in a response to him, I lack the subject matter background.) Or do those who want the focus to change all think that Oolong's draft represents you well? I think it would help for people to say one way or the other. If no other draft or plan is going to be presented, it seems like the next step is to wait for guidance from the moderator (e.g., re: whether it now goes to an RfC or if he has another task first). FactOrOpinion (talk) 16:58, 13 January 2025 (UTC)
You were referring to the neurodiversity movement in general, but you omit this context. I understand this talk page concerns ASD and I don't mean to generalise, but the neurodiversity movement encapsulates other disorders in their rhetoric - as you have done in your blog post - and I have already addressed the issues with it in regards to ASD. And they do in fact explicitly advocate for the "de-medicalisation" of disorders while misrepresenting their nature, as the references show. Citing facts and the global scientific consensus statement is not "me disagreeing" with the claims, it's showing that they are demonstrably false. There is no official centralised Neurodiversity Movement organisation; both the economist article among the other one are advocating for neurodiversity to make their claims. Димитрий Улянов Иванов (talk) 08:59, 14 January 2025 (UTC)
The entirely fictional claim you were defending was that "the neurodiversity movement is trying to create a new definition based only on traits they find valuable".
The social model of disability asserts that disabled people should be given the supports they need. These skin infections do not emerge if the disabled person is properly cared for. It is important that the "social" in "social model" does not only refer to the disablement that arises in interactions between the individual and their society but also to the social normativity regarding the autonomy and independence of people. While the neurodiversity movement does not reject teaching autistic people self-care skills if the autistic person wants it, it is important to note that although these hygiene things have to be done by someone, it is a cultural and capitalist decision to create a small separated space for every person for which the person is considered responsible and which they are expected to be able to manage. All humans are interdependent, a single human would not survive for very long in the wilderness. It is an arbitrary construct to say those who have certain skills are „independent“ and only those who don’t have them are not. Take the Jun/oansi hunter-gatherers in Namibia as an example: "No one in these villages expects anyone to live on their own and be completely responsible for their own successes and failures. In Europe and North America, however, we’ve long idealized the autonomous individual, dignified those who produce the most capital, and stigmatized those who produce the least. It is, in fact, because of this obsession with independence that Europeans first invented mental illness categories during the early industrial revolution. The idea was to separate out unproductive workers into distinct identities. In capitalism, mental illnesses and dependence on one’s family became signs of disgrace. […] In a society like Geshe and Tamzo’s, one would never ask the question nearly every American parent with an autistic child is, at some point, asked: 'Will your child be able to live independently?'" [Nobody’s Normal by Roy Richard Grinker, first chapter]. You, @Димитрий Улянов Иванов, also wrote that you are against capitalism so I thought you might find this insightful. LogicalLens (talk) 03:39, 10 January 2025 (UTC)
It's true that cooperative societies don't ask "Will your child be able to live independently?" Instead, I believe that they skip that and ask some variant on "When you die, which of your other children will have the duty to care for their brother, because it's obvious that someone will be caring for him for the rest of his life?"
This story reminds me of the "Eskimos and Inuits don't die of cancer" thing from the 1990s. The informative question to ask wasn't "Wow, how do they avoid cancer?!" but "So, what's the rate of heart disease?" Here we have a group that assumes the child will be cared for by family. Maybe if they wrote this book, they would be saying "You know what happens in the US and Europe? When your first-born has a major congenital disability, people don't say, 'You need to have more children, so that when you die, there will be siblings to take care of this one.' It would be so nice to live in that culture, where people have children because they want them instead of as a type of social insurance and extra caregivers for their dependent older brother." WhatamIdoing (talk) 07:34, 10 January 2025 (UTC)
Actually, on the same page of the book it says: "When I asked his father if he is concerned about who will take care of Geshe when he and his wife pass away, he looked confused and then pointed to his neighbors. 'We won't all die at once,' he said." LogicalLens (talk) 08:15, 10 January 2025 (UTC)
Unlike more scientific terminology like neurological variation, "diversity" is associated with positivity and other such connotations as well as with the broader Neurodiversity Movement. That movement is notorious for denying the scientific validity of not just ASD but other disorders such as ADHD and the necessity of treatment (pharmacological or otherwise) in favour of homogenising peoples' neurological variation. The movement also tends to misrepresent their nature by minimising impairments and overstating or incorrectly ascribing positive benefits to the conditions in order to portray them in a positive light. Their positions contradict the global scientific consensus (e.g. Faraone et al., 2021) as well as the views of millions of people with lived experience of such disorders (e.g. Cortese et al., 2024). This has all the hallmarks of pseudoscience no matter how appealing it may be to some laypeople. It’s a pity so many are adversely affected by it.. Димитрий Улянов Иванов (talk) 00:28, 8 January 2025 (UTC)
The assumption that Judy Singer coined the term neurodiversity is being challenged [43] and Judy Singer didn't initiate the movement [44]. Both the term and the movement arose out of autistic communities and weren't created by any single person. LogicalLens (talk) 03:22, 8 January 2025 (UTC)
"A statement that all or most scientists or scholars hold a certain view requires reliable sourcing that directly says that all or most scientists or scholars hold that view."
Which of your citations directly states that all or even most scientists or scholars hold the view you are referring to? Oolong (talk) 09:11, 8 January 2025 (UTC)
Neurodiversity is "Hallmark of Pseudoscience"? I rather smell the pathology paradigm and all its army (usually paid and funded and supported by Autism industrial complex) as a form of colonialism and master-slave relationship within a species.
You might know about Drapetomania . "Science" told if a slave does not want to remain enslaved then it is a disorder.
Brownlow, Charlotte. "Re-presenting autism: The construction of ‘NT syndrome’." Journal of Medical Humanities 31, no. 3 (2010): 243-255. can be an interesting read on this regard.
Many neurodiversity supporters are also science lovers and also often prefer strict rationality.
Only Autistics can say what works best for them. Neurotypical professionals and scientists aren't going to perceive the matter... best they can is to conduct surveys, take opinions, having empathy, listening to us, reading our autoethnography. Anything imposed on us outside of that causes harm. I am tired of seeing another group of people deciding what's best for Autistics. Really unhelpful and bad ideas. RIT RAJARSHI (talk) 18:11, 9 January 2025 (UTC)
@Oolong I greatly oppose the idea that neurodiversity is "pseudoscientific". It has a sociological or philosophical dimension as well scientific dimension. But to think it as "pseudoscience" is really sick idea. I rather think the so called "global scientific unanimous consensus" is a pseudoscientific one: because they want to look like science, but all they do is to vote and raise/ lower the various arbitrary bars much like things happen in politics and diplomacy. They don't know everything, yet they pretend they know best for us. RIT RAJARSHI (talk) 18:17, 9 January 2025 (UTC)
If scientists discuss and accept a concept, then it becomes scientific. The theory of evolution through natural selection was thought up by a country gentleman of independent means, trained in theology, who once had a job as a geologist, and a wildlife specimen collector who had been trained as a surveyor. I think this shows that the profession of the instigator of new ideas is irrelevant, if the idea is later taken up by scholars who are, or are not, professional scientists. Urselius (talk) 15:37, 14 January 2025 (UTC)
What's next?
This discussion has been enlightening for me, in part because it has forced me to think about fundemental questions in my own field (clinical psychology) and to consider strong arguments from thoughtful, smart, experienced Wikipedians on both sides of this debate. I find myself going back and forth and back and forth again as I read through this discussion. Although I believe the article should do more to integrate insights and perspectives from the neurodiversity viewpoint, I start with the belief that autism is a neurodevelopmental disorder that causes suffering for people born with it (and their families), i.e., it is not merely a "difference" that society needs to accommodate. I remain hopeful that we can craft a consensus statement, in the form of a new lede for the article. Should we start work on that? -- Mark D Worthen PsyD(talk)[he/him]11:53, 8 January 2025 (UTC)
Thank you for reminding me about that word (suffer) being problematic. It has four or five meanings, which is part of the problem. Would it be better to say that autism causes distress? Mark D Worthen PsyD(talk)[he/him]08:24, 9 January 2025 (UTC)
In this context, it means much the same thing.
I would suggest that the bigger issue is that it's not autism on its own that causes suffering or distress; it affects people's reactions to the environment they're in.
I am certainly more distressed in some situations than a non-autistic person is likely to be, but in others I am undoubtedly less distressed. Similarly, I take great joy in some things that pass nearly all non-autistic people by, while I am baffled by the enjoyment that many seem to take in other things. Oolong (talk) 09:16, 9 January 2025 (UTC)
"I take great joy in some things that pass nearly all non-autistic people by" you mean small things everyone misses? Like when I'm on the train I like to stare out the window, kinda stimmy and fun. Also stimmy should be a disambiguation page.
I would argue, as an autistic person myself, that though autism can be difficult to live with and be problematic, it is very largely contextual. If I am on my own or with my family and/or close friends, in a comfortable or neutral environment, I am not inconvenienced by my autism at all, neither is anyone else. This suggests to me, that it is only in my interactions with society at large that me being autistic can become a problem, either to me or other people (social model of disability). Also my autism has benefits, yes indeed. In my job as a biomedical researcher monotropism was a positive thing to posses, concentrating on my project and not being distracted by other things paid dividends. My abilities to solve problems from unusual angles was also very useful. I produced two theses, MSc and PhD, both passed without revision or correction. My autistic eye for detail also enabled me to become the 'go to person' for proof reading other people's theses, I have lost count of the number I have proofread. The article does not conspicuously engage with any beneficial aspects of autism.
As an aside, the use of the term 'deficit' in the DSM 5 wording is largely due to US medical insurance requirements, rather than wording for clinical accuracy. Urselius (talk) 14:45, 8 January 2025 (UTC)
Right - I don't think anyone with any insight into autistic experiences at all would deny that related issues are "very largely contextual". In fact, it scare me to think that some might - I know there are parents out there with no insight into what causes their kids' meltdowns, trying to train them to behave differently, rather than learning to spot triggers and work out strategies for avoiding overwhelm. I know that something similar can happen with autistic people in institutions, causing whole cycles of meltdowns and ill-treatment, and that is chilling.[45][46][47]
There are good reasons why Luke Beardon's equation 'autism + environment = outcomes'[48] is so influential and widely quoted.
I discussed many of the ways that autism can be a disability, despite the same traits in many cases being neutral or even advantageous in other contexts, in this 2017 article. Might be helpful background reading for anyone interest in this discussion.
Is there something about Beardon's 'autism + environment = outcomes' that is meant to be unique to autism? The same equation works for any individual with any trait. It's not even specific to humans, or animals: 'Boston fern + environment = outcomes' or 'Flu virus + environment = outcomes'. WhatamIdoing (talk) 22:20, 8 January 2025 (UTC)
Only in the sense that for some reason, when it comes to autism, people often totally ignore this obvious point.
No, I had not seen your draft, and I apologize for missing it. I like what you wrote and I appreciate you seeking to integrate even if it means including statements you don't necessarily agree with. // I need to stop reading this on my phone because there's no way I can track the flow of discussions when they go up and down the page. I keep expecting sequential order going down the page, but that's not how a talk page works. Mark D Worthen PsyD(talk)[he/him]08:19, 9 January 2025 (UTC)
Thanks Mark! Yes, unfortunately it's extremely hard to follow these discussions on a phone (I've found the app helps a little, but not as much as I'd like). Also, on the phone there's usually no 'reply' button for some reason??
Urselius, when I read through your comment, I'm left with the feeling that we're saying "When you've met one high-functioning autistic person with a PhD, then you've met every autistic person". For every autistic person like you, there's another one who can't be left unsupervised. Can we write this article in a way that doesn't erase those low-functioning, extremely high-need autistic people. It needs more than just the occasional passing reference to their existence.
Conversations like this make me wish that they'd split autism back into separate components. It probably was better for autistic people with high academic achievement when they got a completely different label, so the distinction between highly capable and talented people vs those who have no hope of living independently was obvious on paper, not just in reality. WhatamIdoing (talk) 22:01, 8 January 2025 (UTC)
There is a great deal of distress, exhaustion and, indeed, mental ill health in autistics who can, most of the time, fully function in society. Most of the attention, support and accommodation, however, goes to those who cannot function in society. I believe that both sets of people deserve the help that they require to live the best life they can. For some autistic people that help might include sheltered accommodation, with round the clock supervision being available. For me, it might have been to be able to take examinations away from vast halls filled with crowds of other anxious people. Or department stores not making people walk through appallingly smelly perfume departments in order to get anywhere else. Yes autism is a spectrum, people on it have a variety of problems and require a variety of support or accommodation. Urselius (talk) 17:59, 9 January 2025 (UTC)
There were good reasons why psychiatrists gave up on the separate categories. Specifically, all the formulas they'd come up with to delineate these categories fell apart on closer inspection; in short, the differences between different autistic people do not appear to be categorical.
It is often said, and this is important, that the term 'low functioning' erases a person's autonomy, while 'high functioning' erases their difficulties.
There certainly are substantial differences between different autistic people (largely, but probably not exclusively, because of other co-occurring disabilities) - but also within the same autistic person at different times, and in different environments.
You asked if there was something special about autistic people with respect to Luke Beardon's 'golden equation'[49] 'autism + environment = outcomes' and I suggested there wasn't, really; but it is really worth emphasising how huge the differences in a person can be depending on environment. Someone who is eloquent and capable well things are going well may lose the power of speech when things go wrong. All kinds of capabilities can be lost this way. Autistic burnout is a very serious thing, and shorter-term shutdowns can also be very serious.
Spiky profiles are also an absolutely key concept for understanding the variability of autism. Sometimes people who can't feed themselves are quite capable of getting PhDs, with the right support. Often, people who don't obviously struggle in public barely function at all in private (you might want to read up on the 'coke bottle effect' regarding how this manifests with schoolkids). Many autistic people have much higher support needs than may be immediately obvious; many with obvious difficulties are capable of great things. Oolong (talk) 09:08, 9 January 2025 (UTC)
Chloé Hayden takes the day off after big events[50] so this is a example of how functioning can change. I think the DSM mentions how the functioning of a person can change but I'm not bothered to find it because I gotta continue programing something then sleep. Anthony2106 (talk) 12:22, 9 January 2025 (UTC)
This comment is about this: psychiatrists gave up on the separate categories. Specifically, all the formulas they'd come up with to delineate these categories fell apart on closer inspection.
According to [51], there's a minority POV that says all the formulas they've come up with to delineate autistic from non-autistic fall apart on closer inspection, and therefore the whole concept of 'autism' is invalid (in terms of clinical utility and nosology, not in terms of the political movement) and should be abandoned. Having difficulty differentiating 1.2345 from 1.2435 doesn't mean that the "1" can be reliably delineated from "2". WhatamIdoing (talk) 23:43, 9 January 2025 (UTC)
Yes, there is a reasonable case to be made that the construct of autism as we know it lacks scientific validity. In fact, I think the current version of the autism article boldly claims a "growing consensus" to that effect.
However, as Chapman points out, it retains considerable value as an identity; and as things stand, there is practical value to having a diagnosis. It's just sensible to be aware that classifications have changed in the past, largely for good reasons, and will likely change further in the future.
We seem to be generating a vast amount of verbiage from relatively entrenched positions. However, I think that these positions resolve into two fairly simple choices for the future of the article:
Choice 1 Largely the present situation. The 'medical model', also referred to in discussion as the "scientific consensus", retains priority, all other facets and models of autism are treated as being subordinate to this model, because, "Autism is a pathological state, defined by deficits, as described in clinical diagnostic manuals".
Choice 2 Requiring substantial rewriting to shift emphasis. Treating the 'medical model' and the 'neurodiversity model' as equal, partly complimentary, methods of considering and describing autism. This would involve creating a neutral descriptive lead, then a definition of the two models, followed by a more equal treatment, where appropriate, of both models as aspects of autism are explored in the body of the text.
Wikipedia HAS to treat any subject in a manner that reflects current scholarship, this is particularly the case where there is any level dissention among relevant academics or commentators. This is not a choice! Given that there is a significant body of academic support for both the medical and neurodiversity models, both must be given substantial coverage in anything that makes any claim to be encyclopaedic. There is also a significant opinion in relevant circles which combines elements from both models, and this also needs to be addressed.
To my mind, as an editor who has created 39 novel articles on Wikipedia, only choice 2 aligns with Wikipedia core values. The 'second pillar' is, "Wikipedia is written from a neutral point of view". When faced with two models describing any phenomenon, if editors are insisting that one is given preferential treatment they are then imposing their personal preferences on the reader, which is fundamentally against Wikipedia core values. Urselius (talk) 11:05, 11 January 2025 (UTC)
Urselius, the moderator has already stated "I think that there is agreement that our objective is to change the focus of the article from viewing autism purely as a medical disorder to presenting multiple viewpoints on autism as they are described by reliable sources," (Fifth statement by moderator), so the decision has already been made in favor of your Choice 2. He subsequently said "I would like each editor who agrees that the focus of the article should be changed so that it describes both the medical paradigm and the neurodiversity paradigm either to draft a revised lede section for the article, or to provide a plan for a coordinated effort to rework the sections of the body of the article" (Sixth statement by moderator; you may want to reread his statements in full, including 5.1, as they address additional aspects of the moderator's plans for how things will progress). Do you have a draft lede that you want people to consider? Or, if you think that the work must start with the body, do you have a plan for how coordinated work on that could occur? FactOrOpinion (talk) 13:35, 11 January 2025 (UTC)
Yes,, I know, but it did not stop further debate, did it? I considered that a recapitulation of the choices available was moot. We need to move on from what to how, without forever mulling through the what question. Urselius (talk) 14:34, 11 January 2025 (UTC)
Robert McClenon clearly proposed a "how": I would like each editor who agrees that the focus of the article should be changed so that it describes both the medical paradigm and the neurodiversity paradigm either to draft a revised lede section for the article, or to provide a plan for a coordinated effort to rework the sections of the body of the article.FactOrOpinion (talk) 14:42, 11 January 2025 (UTC)
Urselius - You are clearly a scholar in this area. Have you written a revised lede section for the article? If so, would you please link to it or tell me how I can find it? I did look, but there's so much here, I might have missed it. Thank you -- Mark D Worthen PsyD(talk)[he/him]20:40, 11 January 2025 (UTC)
Alternatively @Urselius, do you support my redraft? (the moderator did ask us each to draft a revised lede, but I'm not sure we should interpret that literally?)
Thanks for linking, I must confess that I failed to find your lead earlier, on this rather full page. I think your lead is good. Personally, I would add, 'characterised by deficits' to the sentence on autism as a disorder. Plus, I would add hypermobility and gastro-intestinal problems to the commonly co-occurring conditions. Both advantages and disadvantages are mentioned in the 2nd para, but the 3rd only mentions associated problems, it would be good to mention some common advantages here, dependent on reputable supporting references, of course. I have come across a genetics paper where some commonly occurring autism-linked alleles were associated with higher academic attainment and, I think, sources for heightened abilities in concentration (monotropism) and attention to detail could be found. Urselius (talk) 09:09, 12 January 2025 (UTC)
That makes sense - probably a good call on both fronts. Thanks!
Why I think splitting the spectrum is NOT a good idea, and what could be done instead.
Although I think a more individualized classification system under Autism Spectrum might be helpful; I do NOT think categorization based of functionality levels or usefulness or societal contributions are ANY helpful. Technically, people with similar variations in different cognitive domains may have different societal repercussions. Such as I have some weird form of number-blindness (I can't often remember or recognize numbers in a meaningful way; such as dates, times, public transport routes, addresses or street numbers, etc. and particularly banking is a troll for me), and heightened recognition for "names" and "words"; which do have social repercussion, but just think of opposite combinations: a heightened sense for number but inability to remember or use words and names (anomic aphasia, hypothetical scenario). The scenario seen in at least few of the severely Autistic/ low-functioning (so called) individual. Who can tell dates and day names of calendar instantly but can't use words as principal mode of communication. For this minute difference I would probably have much more social repercussion, probably I would be mistreated as intellectually disabled, probably communication modes weren't offered, probably would have been subjected to abusive therapies. Perhaps I would never been learn to frame sentences due to inability to recall words. Perhaps parents were suggested to speak simple words loudly near my ears, which would feel as irritating as train numbers feel to me currently while in platform announcements.
In reality, no two Autistics are the same. Neither 2 high functional Autistics are the same, nor 2 low functional Autistics are the same. Some have more issues with fine or gross motor control, some have more issues with interoceptions, some have more issues with emotional safety (esp those on PDA profile or ODD characteristics), some have more issues with different use of episodic and semantic memories etc. Such as a relatively "low functioning" Autistic may have a lesser sensory issues. S/he might enjoy loud music and social gathering. Conversely a relatively "high functioning" Autistic may have much more issues in some aspects such as sensory, emotional regulation issues, alexithymia, etc. And intermediate-need Autistics do exist.
I guess the following diagram provides a rough representation on how these variations might look like.
a hypothetical radar plot of spikey cognitive profile. Similar details can be found in Doyle, Nancy. "Neurodiversity at work: a biopsychosocial model and the impact on working adults." British medical bulletin 135, no. 1 (2020): 108-125.[53]
FIGURE: Here is one hypothetical spikey profile, just think of another kind of hypothetical spikey or uneven profile.
Based on social outcome, we may mis-categorize some of us having just like some mild OCD like hyperreaction to small changes, or as if some common mental health disorder, and we may miscategorize some of others as "burdensome", "uneducable". But in reality, both kind of Autistics are part of a multidimensional continuum (Not just a linear spectrum of "more Autistic or Less Autistic" but differing in many many aspects).
Therefore, we cannot force like "high functioning folks can't speak for low functioning folks" or "low functioning folks cannot speak for high functioning folks". In that logic, one high functioning folk should not have speaking for another high funnctioning individual. Or one low functioning shouldnt support another low functioning. But that is NOT the situation. Some of the experiences like SYNAESTHESIA, SENSORY OVERLOAD, STIMMING, ECHOLALIA, MELTDOWN etc apllicable on all the subgroups more or less, depending on individuals. Insights on one group really helps other subgroups. Back and forth.
Look into underlying mechanism. Look into their introspection. Look into how they make friendships. look into what they want to share. Look into where they struggle. And deep inside there are similarities in mechanism,
I do think we need to provide individualized support cards to Autistic people, elaborating what kind of support needs they require. How to communicate with them. What kind of accommodations that person might need in workplace. But yes we can get a general and collective idea from multiple Autistics' experience which is indeed helpful. Personally I call the so called high functioning profile as the "interpreters" between Autistic and Non-Autistic universe. Of course there are exceptions but If not an individual level then at a collective level it is helpful to see the whole spectrum unsplitted. Neurotypical assumptions in the other hand, misleads. Even neurotypical people close to Autistic population often have no clue about how to effectively communicate, while some Autistics do communicate effectively among each other.
Nice you also think it's not a liner spectrum, I also think this is true and never compere who's "more or less"[a] but sometimes when I meet someone who is more intellectually impaired then me I can't not think their "more".
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Also a source for autistic people are good a dates:[54] Make sure you don't watch the whole thing its riddled with inspiration porn and then he donates to a bad charity, stupid. I wish it was under creative commons so it could be on the page inspiration porn for an example.
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Also now that we have established that it's not a linear spectrum can we remove the word "severity" form the second paragraph? I think @Димитрий undid me removing the word because of scientific papers saying "severity", so maybe if we find more papers against this we could remove the word? Anthony2106 (talk) 01:23, 10 January 2025 (UTC)
We don't need papers that say "My POV disagrees with using the word severity when describing their POV". We need a way to accurately communicate the POV that some autistic people are more impaired than others. A descriptive phrase such as "has higher support needs" might work. WhatamIdoing (talk) 05:06, 10 January 2025 (UTC)
(Moderators Please feel free to cut paste this to appropriate section)
(1) Are you Autistic?
‒ Yes, and also I have received formal diagnosis of “ASD”.
(2) What are your perception of this ASD? Is this causing impairment to you? Is this a disorder to you?
‒ This is rather complicated to answer. I have been seeing the world as too fast, too loud, too rigid, too figurative, too changing, too chaotic, too unempathetic, too complicated. I can do my stuff only if the situation favors it. However, I do think some of the conditions like situational mutism, executive function issues, fine motor and motor planning issues, meltdowns, shutdowns, etc. are causing difficulties and misunderstandings. You can compare it with a person with Dwarfism who see the public transport, school desks and blackboards, etc. are designed for taller people. Who feel like people around them are all taller. The difference is biological, but the impact is mostly social.
(3) Do you think Autism should be defined solely based on negativity or deficits?
‒ No, Autism should be defined and diagnosed based on its signs and internal experiences regardless of the stress level of the person. So that regardless of stress level you can predict and prevent or minimize traumatic experiences. Autistic person remains Autistic regardless of stress level or situations. In some situations we focus or work really well, in some other situation we meltdown or go into non functional, vegetative like state. But it is the same person and same brain. You can’t separate Autism from the Person and her/his core nature.
(4) What is the impact of ASD diagnosis on you?
‒ It gave a rational explanation of my entire life. That was positive and empowering. It was the starting point to learn to stop hating oneself.
(5) Why do you think that the pathology model causes harm?
‒ Before answering that, I want to let you know that I do not invalidate the impairments, stress, and suffering, regardless of need levels. For two reasons I think pathology model causes harm.
Firstly, it tries to extinguish the “disorder” and its symptoms itself, the so called “taking out the child or the person from the grasp of Autism”, and it causes a testimonial injustice and a systematic injustice by not considering whether Autistic people are being fruitfully helped by this approach.
Secondly, if we do not highlight the social nature of the problem, we would not achieve necessary societal changes and societal accommodations. As we know, Autism is often seen as a terror or an inherently undesirable trait, which leads to loss of human value and credibility. During COVID pandemic period just a few years ago; patients with learning disabilities were issued with DNR (Do not resuscitate) orders (Dougan, Lesley. "2.6 Neurodivergence." The SAGE Handbook of Counselling and Psychotherapy (2023): 56.) ; reflecting we are not yet seen as a full human being. The rate of job loss and unemployment, stress related disease, self-ha*rm and low life expectancy is skyrocketed.
(6) Do you benefit from treatment such as social skills lesson, behavioural therapy, ABC model or antipsychotic medications?
‒ I was offered with social skills lessons, ABC model, behavioral therapies, and 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. I also feel that there is not any real existence of “deficit of social skill” in the sense … because socialization is a 2 way process. I can do little if the so called “friends” abandons me or bullies me and I require to control myself to make room for everyone, yet I am considered to be the one who is “lacking” the social skills. Do not teach us forced eye contact etc. instead teach neurotypicals about existence and value of different kind of minds and brains. Further read: Sasson, Noah J., Daniel J. Faso, Jack Nugent, Sarah Lovell, Daniel P. Kennedy, and Ruth B. Grossman. "Neurotypical peers are less willing to interact with those with autism based on thin slice judgments." Nature Scientific reports 7, no. 1 (2017): 1-10. (PDF)
(7) 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.
(8) Will reasonable accommodation remove 100% of your problems?
‒ No, but it will minimize the survival mode.
(9) 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.
(10) Why do you think it is important to make Autism diagnosis and support more accessible?
‒ Currently the diagnosis and support for Autism are not accessible at all, because of existing stereotypes such as intellectual disability and inability to speak. Many professionals are also not aware of less typical presentations of Autism. As a result the stressed out person is often offered with mental health diagnosis such as depression, anxiety, bipolar, schizoid or borderline or introverted personality disorders, paranoia, anger, delusional disorder, OCD, etc. which are basically a secondary mental health condition. But cognitive differences esp. related to Autism Spectrum, Dyslexia, Dyscalculia, Prosopagnosia, Sensory processing disorder, etc. and its societal repercussions remain unaddressed.
Secondly, Autistics who are able to any one of : speak or write or communicate using AAC tools … can provide significant insight about Autistic lived experience. Lived experience may include Qualia or unfalsifiable components, but lived experience is the ultimate thing that shapes our lives. Thus Autistic lived experiences can function as an “interpreter” between non-Autistic and Autiistic communications. Note that each Autistic is unique, but we get better details on how to help Autistics, and to reduce harms, if we listen to and trust Autistic voices.
(11) Do you want to include testimony of any other Autistics?
‒ Yes, 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.
Bowman, Rachel A., and Jeffrey P. Baker. "Screams, slaps, and love: the strange birth of applied behavior analysis." Pediatrics 133, no. 3 (2014): 364-366.
Pyne, Jake. "“Building a person”: Legal and clinical personhood for autistic and trans children in Ontario." Canadian Journal of Law and Society/La Revue Canadienne Droit et Société 35, no. 2 (2020): 341-365.
Sandoval-Norton, Aileen Herlinda, Gary Shkedy, and Dalia Shkedy. "How much compliance is too much compliance: Is long-term ABA therapy abuse?." Cogent Psychology 6, no. 1 (2019): 1641258.
Shkedy, Gary, Dalia Shkedy, and Aileen H. Sandoval-Norton. "Long-term ABA therapy is abusive: A response to Gorycki, Ruppel, and Zane." Advances in Neurodevelopmental Disorders 5, no. 2 (2021): 126-134.
Conine, Daniel E., Sarah C. Campau, and Abigail K. Petronelli. "LGBTQ+ conversion therapy and applied behavior analysis: A call to action." Journal of Applied Behavior Analysis 55, no. 1 (2022): 6-18.
Graber, Abraham, and Jessica Graber. "Applied behavior analysis and the abolitionist neurodiversity critique: An ethical analysis." Behavior Analysis in Practice 16, no. 4 (2023): 921-937.
::"This is a topic concerning a community I care a great deal about. My
decision to retract this piece stems from my love for my brother and years of
inner turmoil over wanting to support both autistic individuals and their
parents and caregivers, and growing up in an era and within a community
that framed ABA as a positive tool for the autistic population that they had
been wrongfully denied. That, in recent years, has been followed by the slow
realization and resolution of cognitive dissonance in light of recent studies
and literature reviews on the impact of ABA on people with autism and the
individual testimonials of autistic adults on the trauma ABA caused them—
that real harm is being done to these individuals by ABA. ABA has been in
my family’s life for decades, since my brother was diagnosed in the 1990s, and though I am aware this retraction may not be well-received in our community of origin, I have seen enough for myself to
be convinced that ABA is
the autistic community’s analog to the LGBTQ community’s conversion
therapy." - Ariana Cernius
"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."
"Up to my common sense, impairment usually mean the biological aspects, and a disability means a barrier in societal aspect (societal participation, having voice, having access to the same things that a non-disabled do). For example: Retinal detachment or glaucoma is more of an impairment, but resulting situation such as inability to access books or a public library, lacking navigation support, etc. constitutes the disability. Sometimes a disability is not necessarily a deficit but a mismatch. Whereas not all deficits lead to a disability, such as draconian politicians (I would not name anybody) often lack affective empathy or conscience, to a various extent, and have excess of other dark triad traits ... but it does not put them in disadvantage, rather it makes them uninhibited to get what they want... by hook or crook. It makes them more advantaged. Distinguishing an impairment or a disability can be an interesting philosophical-ethical challenge, and that debate itself should cover a page."
Neurotypes and Internal experiences are not negotiable.
Concealing the views critical to mainstream pathology paradigm doesn't help Audience. It rather takes away better quality of life, takes away better understanding on the matter.
Encyclopedia should be encyclopedic, with all viewpoints.
Neurodiversity and social model isn't a fringe position
Neurodiversity and social model does not invalidate biological suffering and co-occurring coditions.
The article should boost confidence, wellbeing, value, and social safety and social support of Autistic people. And acceptance of Autism to general population. That is only possible through better language and more positive and uplifting representation of Autism.
Complete re-write of the article is required.
I assume that any Good Faith editor would want the BEST for Autistics, and to do that we need to listen to Autistics.
I PLEA the editors to come into a consensus to show the bigger picture including all opposing views and use uplifting perspective and uplifting language.
My opinion solely belongs to myself, and can have technical inaccuracies. however I do acknowledge an Autistic collective knowledge and Autistic consensus do exist, which does not often match with professional or biomedical consensus. This shows an existing shortcoming in the professional biomedical views, as it creates an epistemic injustice: So called high functioning folks are subjected to denial of support, job loss, self-ha*rm, stress etc. where as so called low functioning folks remain mistreated using inapplicable or coercive therapy methods with weird goals of extinguishing "behaviors" and not supporting inside out. I support that the concerns raised by @Oolong: is true and highly important.
@WhatamIdoing By Audience I mean Encyclopedia readers. They can be parents, professionals, Autistic readers, Classmates, School teachers, anybody. Don't conceal truth. Reveal contrasting paradigms. Simple. Thank you for asking RIT RAJARSHI (talk) 18:22, 9 January 2025 (UTC)
Thanks for this. I know that you've been finding engaging in these discussions extremely stressful, which is very understandable. I think all of your conclusions are clearly correct, although I imagine some will want to argue with this: 'I assume that any Good Faith editor would want the BEST for Autistics, and to do that we need to listen to Autistics.'
It looks like debates and discussions are going for a long period, but any permission to modify the article is not being obtained. Both in Talk page and DRN for Autism, wall of texts is growing up. People are not understanding that harmful things are being promoted in the name of only 1 consensus, and opposing viewes are being concealed. Emotional labour of the volunteers are being disrespected. Wall of text making things unreadable in talk and DRN.
What a hopeless situation RIT RAJARSHI (talk) 16:47, 9 January 2025 (UTC)
Note that I am not advocating for erasure of pathology view. I am just saying that encyclopedia should be encyclopedic. It should present all aspects of a situation. RIT RAJARSHI (talk) 16:49, 9 January 2025 (UTC)
The DRN has became an wall of text and it is being impossible for me to keep track so I am responding to intended discussions in a separate section. With loads of love and respect; I feel like some users grossly misunderstood or misinterpreted neurodivergence and/or social model. No, these paradigms does not exclude negative experience. Apart from that, in my very personal perspective, the “disorder” framing and “pathologization/ medicalization/ medical model” are 2 related but different issues. the “disorder” framing can be subjective, and many of the Autistics may even identify being in a disordered state. but the pathology paradigm has even one step ahead: it assumes the problem is in the person and not in the structure of civilization (that closes the doors to make simple adjustments) or even worse, a tragedy model, where the person is the problem.
<quote> “They want the article more prominently reflect a POV that is popular in the neurodiversity movement (e.g., as it appears on social media, but also in some scholarly sources). This POV says that autism is part of each individual's personality and identity. If you could get rid of autism, then you would be getting rid of the autistic person's true character and identity.” </quote>
Kind of true, but that does not mean that difficulties and stresses are being ignored.
<quote> “This POV also believes that autism is good. Everything about autism is to be presented in as positive a light as possible.” </quote>
This is strange. No, neurodiversity is NOT aspie supremacy. Autism is not bad either. It can have complex societal and individual impact. But pathologisation and negativity might take away social support. May not let us give the scope for societal supports and accommodations. Might lower the human value.
<quote> "prefers eating the same food every day" or "his favorite food is plain pasta" instead of being negative and saying that person is "at risk of scurvy and other vitamin deficiencies because he refuses to eat anything except plain pasta, rice, and eggs"</quote>
Keeping descriptions humanistic and positive, helps acceptance and social support. Yes there can be additional need for vitamins.
::::<quote>We should say that someone "has a strong desire to talk about their particular interests" instead of "fails to engage in reciprocal social communication by noticing that the other person is not interested in hearing a long lecture about the exact differences between Lego Mindstorms robots and Lego Education Spike Prime robots, and thus changing the subject to something the other person would enjoy".</quote>
This is such an insensitive and insightless reasoning. What’s wrong if somebody prefers to hyperfixate into things or topics they enjoy or love or value a lot? Other people too try to join in meaningful conversation through infodumping or prallel play. It is possible. In the other hand, it is possible to frame neurotypical shallow chit chats, vague hints, assumptions, and thin slice judgements as a pathology.
<quote> By default, if isn't good, then it isn't autism. Any 'bad' things should be called a "co-occurring disorder" </quote>
I rather perceive the opposite. Adherents of pathology paradigm seem to continuously claim that if a person is “not impaired due to the symptoms” then it is not Autism. Some other user’s comment
<quote>If someone exhibits autistic-like traits but are not sufficiently severe to lead them to be functionally impaired, then they do not have autism, and by extent are not on the autism spectrum (with an exception for borderline cases that may periodically fluctuate in and out of impairment). </quote>
It is like adherents of neurodiversity paradigm is trying to show us a whole picture that includes positive aspects, but adherents of pathology paradigm seem to define Autism solely based on negativity.
<quote> If a parent or caregiver wants an autistic person to quit engaging in a behavior (e.g., removing their clothes in public), then the parent should simply figure out what prompts that behavior (e.g., clothes that are too hot, itchy, stiff, loose, tight, synthetic, smelly, colorful, wet, stained, torn, sewn, peed-in) and proactively remove the prompt, so that the child won't think about doing that. </quote>
Like what was that?! A child feel sensory torture and the parents would not figure out what stressor is causing this? Instead you chose to suppress the behavior, teaching the kid to not listen to its body? Kind of horrible idea this is.
<quote> Overall, autistic people (adults) are to be presented as capable, autonomous, valuable people who can do great things. </quote>
Looks like the benefits of “presumed competence” and “strength based approaches” are being horribly misunderstood. No, social support is always important for every kind of human being, and nobody lives isolation from human civilization (parents / siblings/ spouse/ employer/ clients/ friends/ children/ students/ coworkers/ … / one way or other). In some situation the social support is quite different in nature.
The following discussion https://en.wikipedia.org/wiki/Wikipedia:Dispute_resolution_noticeboard#c-LogicalLens-20250110033900-WhatamIdoing-20250109083000 elegantly answers this as <quote> The social model of disability asserts that disabled people should be given the supports they need. These skin infections do not emerge if the disabled person is properly cared for. It is important that the "social" in "social model" does not only refer to the disablement that arises in interactions between the individual and their society but also to the social normativity regarding the autonomy and independence of people. While the neurodiversity movement does not reject teaching autistic people self-care skills if the autistic person wants it, it is important to note that although these hygiene things have to be done by someone, it is a cultural and capitalist decision to create a small separated space for every person for which the person is considered responsible and which they are expected to be able to manage. </quote> Note that presumed competence is different from invalidation of the struggles.
<quote> and that autism be presented as a medical disorder serious enough to result in an average lifetime cost (in the US) of US$2,200,000 per autistic person with intellectual disabilities, and US$1,400,000 per autistic person without an intellectual disability </quote>
It seems this cost is much due to a lack of culturally available social support, and also the high cost of ABA-based therapy methods, its side effects, and lack of access to strength based approaches.
<quote> and the autistic person should not be blamed or shamed in any way. Most/all distress experienced by autistic people is caused by society's failure to provide sufficient accommodations and to value autistic people's views and perspectives, so "society" can be blamed and shamed. </quote>
This is a misinterpretation. And why anyone would blame or shame an Autistic person? Note that societal stress is not always deliberate but due to systematic design fails due to normativity.
I ultimately support and share the viewpoint that accommodation can’t solve 100% of the problems but It worth working on improving societal understanding, acceptance, and accommodation.
<quote> Claiming that "Reducing autism to a mere environmental mismatch is highly trivialising" is in fact trivialising. There is nothing trivial at all about environmental mismatches. They are often intensely distressing and disabling.
Many, many grave harms and bad experiences are clearly avoidable by adjusting the environment in identifiable ways. Nobody's harms or experiences are being erased by saying that they arise from a mismatch between the person and their environment.
The idea that any of these harms and experiences, the reality of which is not in question, are direct results of somebody's cognitive makeup, and hence impossible to prevent without changing the person, appears to be pure speculation. Perhaps it is true, but I for one have never had experiences that didn't depend on my environment in some way. It's hard to imagine what kind of empirical evidence could plausibly demonstrate that a particular class of experiences has nothing to do with the experiencer's environment, but if you believe you have such evidence, by all means share it here.</quote>
I wished to visit and interact the DRN Page, but I feel like DRN is failing due to rigidity of the medical model. It is being harmful for my mental wellbeing. The topic is being extremely triggering and stressful for me once again.
I am sorry I can't agree with adherents of current version of Wikipedia article and the pathology paradigm.
^Bertelli, Marco O.; Azeem, Muhammad Waqar; Underwood, Lisa; Scattoni, Maria Luisa; Persico, Antonio M.; Ricciardello, Arianna; Sappok, Tanja; Bergmann, Thomas; Keller, Roberto (2022), Bertelli, Marco O.; Deb, Shoumitro (Shoumi); Munir, Kerim; Hassiotis, Angela (eds.), "Autism Spectrum Disorder", Textbook of Psychiatry for Intellectual Disability and Autism Spectrum Disorder, Cham: Springer International Publishing, p. 391, doi:10.1007/978-3-319-95720-3_16, ISBN978-3-319-95720-3, retrieved 8 June 2022, Persons with autism spectrum disorder and/or other neurodevelopmental problems are more likely than the general population to have transgender identity, non-heterosexual sexual orientation, and other gender non-conformities.
^Bertelli, Marco O.; Azeem, Muhammad Waqar; Underwood, Lisa; Scattoni, Maria Luisa; Persico, Antonio M.; Ricciardello, Arianna; Sappok, Tanja; Bergmann, Thomas; Keller, Roberto (2022), Bertelli, Marco O.; Deb, Shoumitro (Shoumi); Munir, Kerim; Hassiotis, Angela (eds.), "Autism Spectrum Disorder", Textbook of Psychiatry for Intellectual Disability and Autism Spectrum Disorder, Cham: Springer International Publishing, p. 391, doi:10.1007/978-3-319-95720-3_16, ISBN978-3-319-95720-3, retrieved 8 June 2022, Persons with autism spectrum disorder and/or other neurodevelopmental problems are more likely than the general population to have transgender identity, non-heterosexual sexual orientation, and other gender non-conformities.
^Barkley RA, Fischer M (July 2019). "Hyperactive Child Syndrome and Estimated Life Expectancy at Young Adult Follow-Up: The Role of ADHD Persistence and Other Potential Predictors". Journal of Attention Disorders. 23 (9): 907–923. doi:10.1177/1087054718816164. PMID30526189. S2CID54472439.
^Cattoi B, Alpern I, Katz JS, Keepnews D, Solanto MV (April 2022). "The Adverse Health Outcomes, Economic Burden, and Public Health Implications of Unmanaged Attention Deficit Hyperactivity Disorder (ADHD): A Call to Action Resulting from CHADD Summit, Washington, DC, October 17, 2019". Journal of Attention Disorders. 26 (6): 807–808. doi:10.1177/10870547211036754. PMID34585995. S2CID238218526.
^sometimes I have some intrusive thoughts where I do think about this
The discussion above is closed. Please do not modify it. Subsequent comments should be made on the dispute resolution noticeboard's talk page. No further edits should be made to this discussion.
– This request has been placed on hold.
