Talk:Autism

Risk?

In the wiki article about risk- risk is defined as something “bad happening”. Is this article implying autism spectrum is a bad thing? Please explain why Autism is a “risk” (something bad), I’d like to know more about your bigotry. 2606:CE40:70:7F06:7D91:2B4:804E:2B0 (talk) 20:32, 13 September 2024 (UTC)

• Outside the term "risk factor", a phrase with a medical/technical meaning, the word here is used for instance in the phrase "risk of suicidality". Suicide is a pretty bad thing. You don't need to wikilink "bigotry", by the way. Drmies (talk) 20:35, 13 September 2024 (UTC)

  Hi Drmies, thank you for your clarification! However, I believe the OP's point is worth consideration.

  To be specific, the term "risk" comes up a 47 times in this article, not just regarding suicidality or video game addiction (which is appropriate usage, yes). Most of these usages are regarding ASD itself.

  For example, the infobox plus "higher risk of a child developing ASD"; "many risk factors identified in the research literature may contribute to ASD"; "autism risk"; and many more times.

  The infobox uses the term Risk Factor, which its article defines as "a variable associated with an increased risk of disease or infection". I do not believe autism is classified as a disease any longer. Neither disease nor infection comes up in the ICD definition. I more often hear the term "condition."

  A more suitable term than risk would be "Causes." In fact, this is the title of the article Causes of autism. It also is the heading and term the ADA uses in its description of ASD. Evedawn99 (talk) 18:49, 25 September 2024 (UTC)

  I agree "causes" is better but we might need more votes before a consensus is made Anthony2106 (talk) 03:41, 5 October 2024 (UTC)

  This is incorrect. The term "risk factor" is used widely for neurodevelopmental disorders, and the definition you are finding are superficial and not reflective of the scientific consensus. For instance, see the International Consensus Statement on ADHD (Faraone et al., 2021-2022) which concludes "Most cases of ADHD [another neurodevelopmental disorder] are caused by the combined effects of many genetic and environmental risks". And further one, the ICS states "For most people with ADHD, many genetic and environmental risk factors accumulate to cause the disorder". Clearly, the use of both "risk" and "risk factor" in the context of neurodevelopmental disorders is warranted. A talk page consensus should probably be used to guide edits exclusively in matters requiring subject determination, and not overturn objective facts like these. Note that this is not to say the term "causes" cannot be used but the term "risk/risk factors" are not invalidated.Димитрий Улянов Иванов (talk) 21:34, 5 October 2024 (UTC)

  I think this is the point that they're trying to make. This is what makes your point appear to be bigotry. I'm not saying that it is. But, you clearly missed the point that risk of developing autism versus environmental risks (i.e. risks as it pertains to chances of developmental differences manifesting in vitro versus risks as it pertains to outside source of stimuli as causes for the developmental differences. Correlation and causation are not the same thing, and I think that's what you're conflating here, and that does not look very good as the differences in the two appear obvious. Especially as the risk being discussed is the condition of autism itself, not the causes thereof. When the use of the word risk is stated 47 times in the article, many were specifically referring to autism itself, not its causes. HarmonyA8 (talk) 07:42, 6 October 2024 (UTC)

  Thanks your comment but I don’t quite understand your point. First, referencing the scientific consensus should not even imply bigotry so that makes little sense to me. But the term ‘risk’ and ‘risk factors’ are clearly used in reference to the causes of neurodevelopmental disorders, not just disease. That’s essentially all my point. I’m not implying cause from correlational evidence; the consensus statement itself contextualises risk as a causal factor. Thus, the reasoning that these terms cannot be used because they are exclusive for disease is wrong. Димитрий Улянов Иванов (talk) 07:53, 6 October 2024 (UTC)

  Hi, 'risk' is pretty much universally used to describe the chance of an undesirable thing - as the Wikipedia summary says, 'Possibility of something bad happening'.

  It is not a neutral term.

  You might like to check out Avoiding Ableist Language: Suggestions for Autism Researchers, which suggests phrases like “At risk” for ASD⁷³ should be substituted for something like 'Increased likelihood/chance of autism'. No accuracy is sacrificed in such rephrasing! See also [1] on this specific point, and [2] and [3] for more general considerations on language use, accuracy and neutrality. Oolong (talk) 16:32, 2 November 2024 (UTC)

  Again - there is a global scientific consensus that "risk" is usable in the context of neurodevelopmental disorders. Sorry to be blunt, but quite frankly, I did cite the International Consensus Statement on ADHD [another neurodevelopmental disorder] and the scientific literature unanimously use the term for ASD as well (e.g., Dietert et al., 2010; Mojgan et al., 2017; Belmonte et al., 2022). Citation 11 you have given is a blog post, which is not peer-reviewed scientific literature. The other two are advocacy papers ,and they don't overturn the consensus. Димитрий Улянов Иванов (talk) 17:44, 2 November 2024 (UTC)

  The Open Notebook is a reputable source, and the other two are editorials/Perspective articles in scientific journals. I can provide many more citations if you really want.

  You are greatly exaggerating the degree of consensus on this. Oolong (talk) 15:04, 3 November 2024 (UTC)

  To take another example, the textbook 'Autism: A New Introduction to Psychological Theory and Current Debate', authored by two of the leading experts in this field, explains (on page 30):

  "The current diagnostic criteria, in both the 5th edition of the Diagnostic an Statistical Manual of Mental Disorders (DSM-5; APA, 2013 - see Table 3.1 and the forthcoming 11th edition of the International Classification Diseases (ICD-11; WHO, 2018) specify only one category for autism. This is termed "Autism Spectrum Disorder" (ASD) in recognition of the variability of presentation. The use of the word 'disorder' as part of the diagnostic ter minology is rejected by many autistic people, who emphasise that autism is a natural part of variation in the human population. For this reason, we refer to autism, rather than ASD, in this book." Oolong (talk) 15:12, 3 November 2024 (UTC)

  Notably, the 'Avoiding Ableist Language' paper, which only came out in 2021, has already been cited well over 1000 times.

  Do you have an argument in favour of using value-laden language like 'risk' instead of neutral terms like 'chance' which get across the message just as clearly? Oolong (talk) 15:28, 3 November 2024 (UTC)

  I am not "exaggerating the consensus on this". The examples given in the article currently are as follows:

  The ICD-11 and World Health Organization (WHO) conclude that autism is a neurodevelopmental disorder.

  The DSM-5 and American Psychological Association (APA) conclude that autism is a neurodevelopmental disorder.

  The UK National Institute for Clinical Excellence (NICE) Guidelines conclude that autism is a neurodevelopmental/developmental disorder.

  Because these are guidelines that are globally standardised for scientists and diagnosticians and are developed by a unification of thousands of researchers, they reflect the global scientific consensus on the matter. Even International Consensus Statements exist attesting to the fact that autism is a neurodevelopmental disorder (e.g. Cole et al., 2019).

  Blog posts are not peer-reviewed, scientific papers and thus are not "reputable" in comparison to the scientific literature. Regarding the other two citations, as I have already addressed, they are advocating for something that is not currently established. Thus, they are not sources that can overturn the statement that autism is a neurodevelopmental disorder as it's currently defined. In fact, several peer-reviewed papers cited in this Wikipedia article criticise such advocacy papers on their logic that ASD is not a disorder, concluding that it indeed is in accordance with guidelines worldwide. So even in the context of advocacy papers, your opinion has not been demonstrated to represent a large number of researchers by any means.

  Unfortunately, none of this was addressed in your comment. I am having to essentially reiterate myself here.

  The Wikipedia article does a good job of balancing the debate on whether the term should be changed in the future, so I don't see what your arguing for exactly to change.

  The text-book you cited appears to - again - be implicitly advocating for a change in terms. It is also based on faulty logic. ASD is not incompatible with the concept of neurodiversity. There is indeed an underlying dimensional spectrum to ASD (which is why it's called autism spectrum disorder) but the term disorder is defined by the presence of impairment, wherein we draw the line and make a categorical diagnosis. There really is no contradiction there. The claim that it's "ableist" is just a subjective proclamation. On the contrary, continuing to espouse that autism is not a neurodevelopmental spectrum disorder may be offensive to those who actually experience impairment and dislike being obfuscated with mere diversity. This is for at least two reasons. First, traits of autism is not autism; you must be significantly impaired by those symptoms to be diagnosable (which is why it’s a disorder). Second, ‘diversity’ typically implies positivity and thus may be offensive to those who do not view it as such. Димитрий Улянов Иванов (talk) 16:35, 3 November 2024 (UTC)

  As regarding risk, I'd like to reiterate that the term is used in International Consensus Statements for the context of neurodevelopmental disorders and is used consistently in systematic reviews for ASD as well that I cited above. Unfortunately, none of these were acknowledged in your reply. Димитрий Улянов Иванов (talk) 16:38, 3 November 2024 (UTC)

I suggest that we should defer to the relevant style guide from NIH (the USA's National Institutes of Health) on this point, although some aspects of its guidance elsewhere are a little confused and/or outdated:

"Use increased likelihood for autism instead of terms like risk of autism or at risk for autism. Likelihood is more specific and less stigmatizing."

I haven't seen anything resembling a counter-argument to this.

While we're at it, the same source recommends that we "Use the terms characteristics, or traits, instead of symptoms when referring to people with autism."

Notably, elsewhere the NIH recommends to "Check a variety of sources, including self-advocacy groups and organizations led by the communities you are writing about, to see what language they use and why."

This seems like eminently sensible advice to me, and I'm pleased to see it from such an authoritative source (specifically Shannon Wooldridge, Public Affairs Specialist, NIH Office of Communications and Public Liaison, writing for their 'Science, Health, and Public Trust' section - "a place for discussion of ways to improve the quality and usefulness of information for the public about science and health"). Oolong (talk) 18:31, 6 November 2024 (UTC)

Please actually address the rebuttals to your comments here before deflecting. I have cited International Consensus Statements, the global diagnostic criteria, international clinical guidelines, and systematic reviews which unanimously attest to (1) ASD is a disorder; (2) the term “risk” can be used in the context of neurodevelopmental disorders like ASD; (3) ASD is characterised by symptoms and the presence of significant impairment, not “traits”. You are objectively contradicting the global scientific consensus by denying this, and that is why such changes in terms should not be made in this article. Димитрий Улянов Иванов (talk) 19:01, 6 November 2024 (UTC)

Paradoxically, different NIMH guidelines conflict with the one you cited, as some explicitly use the terms symptoms, disorder and risk in accordance with the scientific consensus: https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd

So even the NIMH you are citing is not a valid source to overturn the scientific consensus. Димитрий Улянов Иванов (talk) 19:12, 6 November 2024 (UTC)

Yes, the NIH doesn't always follow its own style guide. That's not a particularly strong argument for saying that we shouldn't follow its recommendations on this, but it is worth noting.

You haven't addressed most of my points either, and I'm afraid that puts me off investing a huge amount of time in addressing yours - I recognise that this might put us at an impasse. You have denied a couple of my points, but have not provided persuasive arguments for your denials.

I can't find the 'International Consensus Statement' you refer to (Cole et al., 2019). Do you have a reference for that? Thanks.

You keep referring to "scientific consensus", but the questions of whether autism is, or should be referred to as, a disorder, are not actually scientific ones. We're talking about terminology, not objective facts to be determined by experiments. To the extent that there's anything to be determined scientifically, one centrally important question - which has received significant attention from researchers - is surely how the people being described feel about it - on which question see e.g. Kenny et al (2016), Lei, Jones & Brosnan (2021) and Bury at al (2020).

Again, there is nothing close to universal consensus among relevant scientists on the status of autism as a disorder, as such - but even if there was, scientists are not in fact the only ones whose views matter on this; we're discussing how best to describe a population, not what the empirical facts are. Hence the NIH's advice, again: "Check a variety of sources, including self-advocacy groups and organizations led by the communities you are writing about, to see what language they use and why."

It seems worth repeating that Wikipedia is not a scientific journal. Oolong (talk) 18:19, 10 November 2024 (UTC)

Please see the recent talk page section I made entitled "Should autism continue to be described as a neurodevelopmental disorder characterised by symptoms, impairment and severity?". In that, I provide a systematic review of the totality of scientific evidence to show a clear, unanimous consensus, going through numerous consensus statements, meta-analyses and international guidelines, and I cite indications from Wikipedia guidelines. The latter affirm that the article must continue to refer to autism as a neurodevelopmental disorder due to the pertinence of the scientific consensus and that public opinion in no way sways that determination. I have in fact addressed your points and do so in that talk page section more extensively. If you wish to discuss further, please do so under there. Димитрий Улянов Иванов (talk) 19:43, 10 November 2024 (UTC)

The issue appears to be that you get hung up singularly on the word risk. So, understanding the differences in their uses in terminology here appears to be missed. The risk of developing autism versus environmental risks (i.e. risks as it pertains to the CHANCES of developmental differences manifesting in utero versus risks as it pertains to outside sources of stimuli as CAUSES for the developmental differences themselves. More widely, as I stated before, the word risk is often used for neither of those; rather to describe the condition of having the disorder itself. Most scientifically peered reviewed research has stated that autism is a developmental issue that begins in the womb. My issue is not the use of the word. It is just how the word is used, which is at times incorrect, with no consistency. So again, I am not saying that you are being bigoted in your language. I am stating that the use of the word in certain situations can be seen as problematic by those experience the condition themselves first-hand. HarmonyA8 (talk) 02:55, 11 November 2024 (UTC)

No problem. I don’t contest the use of the word with an interchangeable one in certain contexts (like likelihood), as the scientific consensus indeed does so. I was mainly trying to rebut the notion that the term risk can never be used in any circumstances for characterising neurodevelopmental disorders like ASD as some have implied or explicitly argued, as I recall. Димитрий Улянов Иванов (talk) 08:46, 11 November 2024 (UTC)

Remove "Disorder" and add "Coocuring Conditions "

Please reframe behavioral deficit-centric influence of the autism industrial complex to honor the lived experience of autistic people with many different manifestations. Do not assume that lack of speaking means lack of intelligence. Furthermore, consider root somatosensory causes of so-called social communication difficulties. Consider the eyes of the neurodominant beholders. 2600:1014:B131:5BCD:0:10:B10B:DA01 (talk) 19:23, 8 October 2024 (UTC)

Autism is a neurodevelopmental disorder. This is the global scientific consensus. See the ICD-11, the World Health Organisation and the DSM-5, as examples, all cited in the article to substantiate the classification. So it is to be kept.

Various approaches have been used to establish this fact. A very useful one stipulates that there must be scientifically established evidence that those suffering the condition have a significant deviation or deficit in or failure of a physical or psychological mechanism that is universal to humans. That is, all humans normally would be expected, regardless of culture, to have developed that neuropsychological trait or ability.

And there must be equally incontrovertible scientific evidence that this serious deficiency or deviation leads to harm to the individual. Harm is established through evidence of increased mortality, morbidity, or impairment in the major life activities required of one’s developmental stage in life. Major life activities are those domains of functioning such as education, social relationships, family functioning, independence and self-sufficiency, and occupational functioning that all humans of that developmental level are expected to perform.

As attested by the scientific consensus, autism candidly meets such criteria and thus is a neurodevelopmental disorder. Димитрий Улянов Иванов (talk) 22:13, 8 October 2024 (UTC)

It is incorrect to suggest that there is a general scientific consensus that autism is a disorder. The neurodiversity perspective is taken seriously by a large and growing number of researchers, and contradicts the assumption that differences like autism should be seen as disorders.

See for example this Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science; the journal Neurodiversity; Wiley's 38-journal neurodiversity special issue; or indeed the 31,600 Google Scholar results for the term. Oolong (talk) 16:41, 2 November 2024 (UTC)

It is not taken seriously by a "large and growing number of researchers". Autism is classified as a neurodevelopmental disorder by the ICD-11, World Health Organization, DSM-5, NICE etc because it is defined by the presence of impairment, not merely symptoms. That is thereby citing the worldwide scientific consensus, and that of clinicians who unanimously use the above diagnostic criteria. In response to the article you cited, the lede of the article further states that:

"On the contrary, other scientists argue that ASD impairs functioning in many ways that are inherent to the disorder itself and unrelated to society.[17][18]"

The neurodiversity movement is a political, not a scientific, movement. Many people also subscribe to the anti-psychiatry movement, whose presence doesn't negate the scientific consensus on the validty of psychiatry as it's largely political in nature. Димитрий Улянов Иванов (talk) 17:28, 2 November 2024 (UTC)

The neurodiversity movement is absolutely a scientific (or perhaps more accurately, meta-scientific) movement as well as a political one. The choice of the term 'neurodiversity paradigm' is neither accidental, nor inaccurate.

You are simply incorrect to claim that neurodiversity is not taken taken seriously by a large and growing number of researchers, which should already have been clear from my comment above. Oolong (talk) 15:35, 3 November 2024 (UTC)

I have addressed the above reply in another page, but I will reprint it here so others don't miss it:

I am not "exaggerating the consensus on this". The examples given in the article currently are as follows:

The ICD-11 and World Health Organization (WHO) conclude that autism is a neurodevelopmental disorder.

The DSM-5 and American Psychological Association (APA) conclude that autism is a neurodevelopmental disorder.

The UK National Institute for Clinical Excellence (NICE) Guidelines conclude that autism is a neurodevelopmental/developmental disorder.

Because these are guidelines that are globally standardised for scientists and diagnosticians and are developed by a unification of thousands of researchers, they reflect the global scientific consensus on the matter. Even International Consensus Statements exist attesting to the fact that autism is a neurodevelopmental disorder (e.g. Cole et al., 2019).

Blog posts are not peer-reviewed, scientific papers and thus are not "reputable" in comparison to the scientific literature. Regarding the other two citations, as I have already addressed, they are advocating for something that is not currently established. Thus, they are not sources that can overturn the statement that autism is a neurodevelopmental disorder as it's currently defined. In fact, several peer-reviewed papers cited in this Wikipedia article criticise such advocacy papers on their logic that ASD is not a disorder, concluding that it indeed is in accordance with guidelines worldwide. So even in the context of advocacy papers, your opinion has not been demonstrated to represent a large number of researchers by any means.

Unfortunately, none of this was addressed in your comment. I am having to essentially reiterate myself here.

The Wikipedia article does a good job of balancing the debate on whether the term should be changed in the future, so I don't see what your arguing for exactly to change.

The text-book you cited appears to - again - be implicitly advocating for a change in terms. It is also based on faulty logic. ASD is not incompatible with the concept of neurodiversity. There is indeed an underlying dimensional spectrum to ASD (which is why it's called autism spectrum disorder) but the term disorder is defined by the presence of impairment, wherein we draw the line and make a categorical diagnosis. There really is no contradiction there. The claim that it's "ableist" is just a subjective proclamation. On the contrary, continuing to espouse that autism is not a neurodevelopmental spectrum disorder may be offensive to those who actually experience impairment and dislike being obfuscated with mere diversity. This is for at least two reasons. First, traits of autism is not autism; you must be significantly impaired by those symptoms to be diagnosable (which is why it’s a disorder). Second, ‘diversity’ typically implies positivity and thus may be offensive to those who do not view it as such. Димитрий Улянов Иванов (talk) 17:16, 3 November 2024 (UTC)

Too often people in society have the “too long, didn't read” mentality; which only breeds ignorance. I perceive you have the intelligence coupled with patience enough to read the whole response. There was a time when all medical text considered hysteria. An actual medical condition that was mostly suffered by females. There was a time when there was almost no scientific reference to many of the health issues female face. And I'm talking in the 1900s. Something can be classified a certain way in the ISD for years, while the debate of the issue rages on before proper terminology, and understanding is updated. As the previous person stated, there is not consensus on the condition itself, much less its causes. For you to state that there is universal consensus on almost anything scientific is to show an ignorance of science itself. Also, the neurodiversity movement, as you call it; has nothing to do with politics. Unless by political, you mean from the sides that continue to disregard emerging understanding of the condition. And, much of what is often regarded as the neurodiversity movement, are actual neurodivergents. The people who all of this affects the most. It has only been within recent decades, and by this, I mean the last two; that understanding of the condition has grown or even been accepted widely in the medical community, much more society at large (who are often the last to know this information). As you perfectly ensample. The only ones that feel obfuscated, by the term "diversity" are those that continue to accept archaic ideas, that have not only been proven incorrect, but that are widely disavowed by actual medical professionals and the scientific community at large. The reason that it is a spectrum is because comorbid conditions can not only influence how the condition manifest itself, but also how the person is impacted. It has nothing to do with the severity of the condition itself. Your ignorance of what severely impacts someone is also very telling. I knew someone who died of cancer. Many thought it to be quite sudden. The only thing is, that person didn't die suddenly. They had known they had cancer for years. But, it would be found out that when the cancer was discovered, it had already metastasized through much of that region. Though this person visited doctors often for quite some time before the diagnosis, complaining of problems to the affected area (all of which severely impacted them). They were often turned away as being a “hysterical” woman or a drug seeker. The excuse used was the person looking healthy and the limited non-corresponding tests coming back normal. The problem was missed for years, until it had almost become too late for treatment. This is a problem in the medical community that is acknowledged by the medical community. For quite some time there has been inherent biases in the medical community. Though advancements have stemmed much of that, much still remains. Many newly diagnosed neurodivergents are often people diagnosed much later in life. All because they did not have other comorbid conditions that presented symptoms that were more easily recognizable, and having the ability to function to an extent in society in what they perceive as a normal manner. But, all of the years that person lived, they were being severely impacted. Most were often neglected in their need and left to adjust to the world on their own. And, this is a risk for developing other comorbid conditions; like depression or other mental issues. Nevermind the high suicide rates among autistic people; a clear correlation to society's ignorance and the inherent bigotry that still pervades in medicine. People on the spectrum often face abuse form both society and by medical professionals they seek help from. A psychiatrist once told me, that psychiatry believes that it has a clear answer for many mental disorders. So, it is easy for many to call a condition that is not well understood, and hard to treat something else that is easier. And, doctors are not immune from misdiagnosing patients thus. And, he is right. I will give two more very quick examples from personal experience. I was born with a condition called ehlers-danlos syndrome. It has severely impacted my life in health. Because it has no clear manifestations. At first, it is easy to misdiagnose. And to miss entirely and since the person often looks perfectly normal. This is how they are often pushed to interact with society. So, they learn to mask their pain. The ignorant believes that the ability to mask means that it is not impacting, or it is not detrimental. In spite of a lifetime of sublaxations, dislocations, cardiac anomalies, pain and other associate issues; I was not diagnosed until after I was 30 with a condition that I was born with. By which time, it had gotten to a point of not only severely impacting my life, but completely shutting it down. I had one doctor that had the audacity to yell (not just state loudly, but to yell) in the middle of the office waiting room what difference does it make if he misdiagnosed me with a condition he can treat, since he can’t treat the condition I actually have. Let that sink in… The second: when I started school, I had to have a neuropsych evaluation. It was demanded by the Board of Education for admittance. The reason is because I was 3 years old. It had to be proven that was both mentally, as well as intellectually prepared to start school. And, to do so with children that could be much older than me. I was certified a genius. A certified child prodigy; when I started school. I would change school later during elementary years. The experience was extremely jarring. The abuse I would receive from both teachers and children alike, caused me to shut down and manifest attributes that caused teachers to demand I be sent back for another neuropsych eval. At this time, I would have not only had been through the severely traumatizing experience of the change and all that it brought, but I had also experienced trauma outside of that in my everyday life. Whatever the exact same doctor that diagnosed me as a genius child prodigy saw, it caused him to decide to change my diagnosis to savant. And, this was only because one of my parents fought against diagnosing me as autistic. You see, there was also a time; and this was the time, when autism was diagnosed as a form of schizophrenia. Knowing this, as well as knowing the issues faced by my neurodivergent parent; they fought to have the diagnoses struck from my record. For that reason alone, the doctor struck the fact that I was a certified genius from my record as well. After which, I would receive heightened abuse from some teachers who found it proper to do so because now they had proof I wasn't a genius. I was just an idiot retard, even if it wasn't on my record. Would you like to take a good guess on the severity of impact on my life from just these two examples? And, these are actually mild… HarmonyA8 (talk) 04:44, 11 November 2024 (UTC)

See the talk page section I recently made called “Should autism continue to be described as a neurodevelopmental disorder characterised by symptoms, impairment and severity?”. In there, I provide a systematic review of the scientific evidence. The totality of international consensus statements, guidelines and meta-analyses clearly show a unanimous scientific consensus on the fact that ASD is a neurodevelopmental disorder characterised by symptoms, impairments and autism itself indeed has varying severity levels. Unfortunately, no one critiquing this is actually willing to discuss the mountains of references.

Moreover, Wikipedia guidelines I cited indicate this wording must be kept per the pertinence of those sources relative to public opinion.

I will not be reiterating myself here because I have already addressed some of these objections elsewhere and in extensively in that new talk section. Димитрий Улянов Иванов (talk) 08:40, 11 November 2024 (UTC)

Just to make a second point that the neurodiversity movement and its terminology it’s trying to impose are not scientific, they’re indeed political. They were coined and intended for the neurodiversity movement, which came out of autism activism. They've always been political.

See these blog posts by Judy Singer: https://neurodiversity2.blogspot.com/2021/02/neurodiversity-its-political-not.html?m=1

“Is Neurodiversity a scientific term? No, it's a political term”.

If she, the person who coined the term and basically launched the movement, acknowledges these issues, that we point out, then maybe you should give that some thought. Димитрий Улянов Иванов (talk) 12:45, 11 November 2024 (UTC)

Hi, first, it's extremely inaccurate to suggest that Judy Singer "launched the movement". What she did was to form a portmanteau out of a phrase and idea that was already in use on a mailing list she was a part of [4] and use it in her undergraduate dissertation, which was later published as a book chapter. She has occasionally made contributions to debates since. I agree with her on some things, disagree on others. She's hardly a leading light of the movement, and was almost entirely absent from it for around 20 years. I state these things simply to correct the factual record and provide context.

The article you cite is not bad - it makes some decent points, and there's not much that I actively disagree with. Again, the idea of neurodiversity is most accurately meta-scientific, rather than scientific as such: that is, it's about science (among other things). I don't think Judy would dispute this. As she says in the article you cite, on some level it's a truism scientifically: yes, "there is a virtually infinite diversity of humans on the planet, with infinitely diverse minds complexified further by experience in equally diverse bodies."

Accepting this diversity has many scientific implications, however. I'm just going to dump links to some articles discussing some of these, because I don't have that much time right now.

• https://doi.org/10.1177/13623613221129123
• https://onlinelibrary.wiley.com/doi/full/10.1002/brx2.70
• https://acamh.onlinelibrary.wiley.com/doi/full/10.1111/jcpp.13886
• https://onlinelibrary.wiley.com/doi/full/10.1111/cogs.13255
• https://www.mdpi.com/2673-8392/3/3/70

Oolong (talk) 11:14, 12 November 2024 (UTC)

If it isn't clear already: 'neurodiversity' is not scientific in exactly the same sense that 'disorder' is not scientific. Oolong (talk) 14:45, 12 November 2024 (UTC)

Thanks for providing these links but the discussion is diverting greatly from the main point of the issue. I would just like to, once again, summarise the point of my involvement here as in retrospect I don't think I've clarified the main issue at hand well and I apologise for that. I would ultimately like to reach a more definitive agreement on some of these issues.

So, the reason why I refer you to that new talk page section is because I keep seeing statements like "there is no scientific consensus on these issues" with people advocating the article be changed to not refer to autism as a neurodevelopmental disorder. Yet, the mountains of evidence I referenced there shows there is indeed a unanimous scientific consensus globally on the fact that autism is a neurodevelopmental disorder characterised by symptoms, impairments and varying severity levels because the evidence indicating it is so overwhelming. Wikipedia guidelines indicate that the peer-reviewed guidelines, diagnostic criteria, systematic reviews and consensus statements I cited are to be used in substantiating those classifications and that public opinion (e.g., blog posts or advocacy papers) in no way sway that determination. Therefore, this Wikipedia article must continue to refer to autism as such.

If you believe the Wikipedia article should instead frame autism as a mere neurodiversity and/or not being characterised with symptoms/impairments/severity, or something else in contrary to those references, please justify your reasoning under that talk page, accounting for all the citations I provided.

It's understandable that some may disagree personally with the classification and I don't want to invalidate the existence of advocacy papers or blog posts, but as things stand now, it would be erroneous to deviate the Wikipedia article from the scientific consensus. Димитрий Улянов Иванов (talk) 15:09, 12 November 2024 (UTC)

I've said this a few times now: you're greatly overstating your case when you say things like "there is indeed a unanimous scientific consensus globally".

Maybe it's autistic literal-mindedness, but when you make objectively false statements like this and stand by them after prevented with evidence that refutes them, I find it very difficult to engage with the rest of what you're writing. Oolong (talk) 18:16, 13 November 2024 (UTC)

Once again, I refer you to the recent talk page section I made where I cited a mountain of references, including consensus statements, and indications from Wikipedia guidelines. So far, you haven’t acknowledged any of that at all and thus are in no position to claim it’s “overstated”. That’s essentially the point I’m repeatedly having to make here. So if you believe it indeed is not a scientific consensus in contrary to the evidence, please actually address it. Thank you. Димитрий Улянов Иванов (talk) 18:29, 13 November 2024 (UTC)

I think perhaps we are talking at cross-purposes.

The thing is that you have insisted on denying what seem to me to be irrefutably accurate statements like 'The neurodiversity perspective is taken seriously by a large and growing number of researchers'.

I provided ample evidence for this, and your response reads something like 'sure, one of the world's biggest scientific publishers is doing a 38-journal special issue on this topic, which is mentioned in more than 30,000 peer-reviewed papers, but I still maintain that no actual scientist agrees with one of its central conclusions, that "disorder" is at best a misleading term when applied to autism, despite two of the world's leading autism researchers explicitly disclaiming the term in their 2019 textbook on the topic.'

I'm sure we could find some common ground if we look, but can you see how the above doesn't seem like a tenable position?

I assume there must be some miscommunication here, perhaps caused by us having different meanings in mind for unanimity, consensus or maybe scientist? Oolong (talk) 19:47, 18 November 2024 (UTC)

On the contrary, it seems to me that you are completely ignoring the existence and validity of a mountain of scientific literature I cited consisting of many national guidelines around the world, consensus statements, systematic reviews, reports from professional associations, and standardised international diagnostic criteria that collectively indicate a clear and unanimous scientific consensus, worldwide, thereby effectively rebutting your narratives. Our critics can cite one text-book and a series of advocacy papers - some of which aren't peer reviewed, which I do indeed address in the talk page entitled "Should autism continue to be described as a neurodevelopmental disorder characterised by symptoms, impairment and severity?". The miscommunication in my view is that none of this is being addressed while I have addressed your references, so I'd like to conclude our discussion here unless you are able to provide countering evidence in the aforementioned talk section - or at least handle such criticism more respectfully by not ignoring it. Димитрий Улянов Иванов (talk) 22:41, 18 November 2024 (UTC)

So you're simply ignoring the large and growing number of researchers who disagree with you, and insisting that they don't count at all.

Evidently you are using between one and three of the words in the phrase "unanimous scientific consensus" in a non-standard sense.

Well, at least we have clarity now, I guess! Oolong (talk) 16:32, 19 November 2024 (UTC)

Wow, great rebuttal! The references you have previously provided - two advocacy papers and a text book that are contradicted by other rebuttals and textbooks, as I have shown, are certainly not representing "a large" and "growing" number of researchers. They do not stand any relevance whatsoever to the mountains of scientific literature cited, none of which you even acknowledge. Even the very Wikipedia article concludes that the ICD-11, for one example of many, represents a production "by professionals from 55 countries out of the 90 involved and is the most widely used reference worldwide" wherein autism is defined as a neurodevelopmental disorder characterised by symptoms, impairments, and varying severity levels.

The references you cited are also advocating for something that is not currently established. Thus, they are not sources that can overturn the global scientific consensus that autism is a neurodevelopmental disorder as it's currently defined.

I will now conclude the conversation here as you are clearly commenting in bad faith by avoiding all of the evidence. It's a shame, really, as this is not my opinion per se, despite it being treated like it is, considering I am just representing the conclusions of scientists around the world. Димитрий Улянов Иванов (talk) 21:39, 19 November 2024 (UTC)

I am highly irritated by your accusation of bad faith here. You have persistently claimed 'unanimous scientific consensus' for something about which many scientists evidently disagree, including leading figures in the field - and which is in any case fundamentally a terminological question (with philosophical and political dimensions) not meaningfully a scientific one. As far as I can see, all of the arguments you've made are either orthogonal to these points, or simply wrong.

I don't know why you were so determined to defend a position which is so clearly indefensible, and which is largely incidental to the actual content of the page under discussion. It seems like you could easily have taken a step back here, taken stock and realised you did not need to keep insisting on this; that it was time to fall back on a more accurate but weaker claim.

I assume that your overarching intention here is to see this entry improved, and to prevent it from being made worse? I share this goal. I'm bad at letting incorrect statements slide, but again: I'm sure we can find some common ground on this. Oolong (talk) 16:33, 2 December 2024 (UTC)

First thing first, a "leading figure" is a subjective statement of authority, a type of logical fallacy to substantiate relevance. I am unaware of a Wikipedia guideline defining special inclusion of claims based on the speaker's degree of publicity.

I stand by the accusation, at least at this time. Considering that I have cited an extensive series of the following peer-reviewed, secondary scientific sources, from numerous countries around the world:

- Scientific consensus statements

- International guidelines by professional associations/institutes

- Standardised diagnostic criteria

- Systematic reviews and meta-analyses

- Academic Textbooks

And that these are based on and in reference to a variety of scientific fields including symptomology, epidemiology, education, diagnosis, causes, neurobiology, societal interpretation, treatment and therapies etc. and cited how in some cases, are developed by a unification of scientists (such as the ICD-11).

Additionally, reports based on Wikipedia guidelines indicating how a scientific consensus is established in these articles and their importance were cited.

Yet, despite this, you kept reiterating that the scientific consensus is "exaggerated" or false, in a baselessly persistent way. This is evident as you do not even acknowledge - let alone address - any of the scientific references, and do so persistently after pointing this out, apparently to maintain your position. The only time you referred to them was to falsely claim they are "people using" the terms. For context, see 18:40, 28 November 2024 (UTC).

In contrast, I have actually addressed your references individually, showing how in many cases they are irrelevant or do not stand due weight in comparison.

Thus, I have sufficient grounds to conclude that you are acting in bad faith in regards to discussing these matters. Димитрий Улянов Иванов (talk) 21:32, 2 December 2024 (UTC)

Also, diversity implies just that; diversity. You can have a diversity of problems, that is not a positive thing. People's ignorance should never dictate a matter. It is because of people's ignorance that I have suffered abuse. Many are often abused and tormented into masking; such as myself. In spite of what I know my passed to be, I would still more likely to be misdiagnosed with an easier to manage mental condition that I do not have, than I would to be diagnosed autistic. Can you imagine how that severely and negatively impacts my life? Ignorance will eventually only impact a thing severely and negatively! HarmonyA8 (talk) 04:59, 11 November 2024 (UTC)

AGREED. It is not a disorder! (Coming from a autistic person) 206.57.152.111 (talk) 14:58, 6 November 2024 (UTC)

As an autistic person who knows what words mean, by very definition it is a disorder. Disorder - a deviation from the normal system or order, an upset of health; ailment, an irregularity, a disturbance in physical or mental health or function, an abnormal condition that affects the body's function, and can be physical or mental... HarmonyA8 (talk) 05:04, 11 November 2024 (UTC)

Which part of that definition do you think it fits, specifically? Oolong (talk) 11:15, 12 November 2024 (UTC)

Neurodevelopmental disorders have been defined extensively in the scientific literature, the current understanding of which goes back to research (Wakefield, 1990s) and an International Consensus Statement in the early 2000s (Barkley et al., 2002).

First, there must be scientifically established evidence that those exhibiting the condition have a significant deviation or deficit in a psychological trait or ability universal to humans. That is, all humans normally would be expected, regardless of culture, to have developed that mental ability.

And there must be equally incontrovertible scientific evidence that the extent of this deficiency or deviation leads to harm to the individual. Harm is established through evidence of increased mortality, morbidity, or impairment in the major life activities required of one’s developmental stage in life. Major life ctivities are those domains of functioning such as education, social relationships, family functioning, independence and self-sufficiency, and occupational functioning that all humans of that developmental level are expected to perform.

As the scientific consensus attests, there is no question that ASD involves significant deficits and deviations in a set of psychological abilities and that these deficiencies often pose serious harm to those affected. Current evidence indicates that deficits in social reciprocation and the presence of perseverative, restricted and inflexible patterns of behaviour are central to this disorder - facts demonstrated through hundreds of scientific studies. And there is no doubt ASD leads to distress and impairment pervasively in major life activities such as independence, self-sufficiency, self-care, social relations, education, peer functioning, family functioning, and adherence to obligations and one's goals. Evidence also indicates that people with autism are significantly more prone to early mortality and morbidity (such as physical injury and accidental poisonings). This is why no

professional scientific, medical, or psychological group doubts the validity of ASD as a legitimate disorder. Димитрий Улянов Иванов (talk) 19:22, 29 November 2024 (UTC)

I would like to point out that I believe you're arguing about different things. I don't think there is a disagreement that autistic people are in specific ways different from "typical" people. If that wasn't the case, autism would not exist, and if it wouldn't be negatively impacting people in some ways, we would not be concerned with it.

This can be described through medical terminology (as you, Димитрий, just did) but this language can be perceived as negative or even derogatory by those not familiar with it (understandably so, in my personal opinion). Words like "disorder", "functioning", and "deficiency" have a different meaning in colloquial language, which even affects those of us who are familiar with the definitions of these terms.--TempusTacet (talk) 20:14, 29 November 2024 (UTC)

why delete Wentworth Miller's image?

@Dashing24 why did you delete Wentworth Miller's image in this edit? you didn't leave behind an edit summery so now I'm curious. Anthony2106 (talk) 08:00, 10 October 2024 (UTC)

because all it does is reinforce how autistic people are so weird and whacky bro 82.168.236.78 (talk) 03:14, 9 November 2024 (UTC)

@82.168.236.78 highly doubt it Anthony2106 (talk) 03:17, 9 November 2024 (UTC)

It actually helps the intelligent person of understanding see, it really is a spectrum. And, that probably what they believe autism to be, is not what it is at all. HarmonyA8 (talk) 05:07, 11 November 2024 (UTC)

@HarmonyA8 what they think autism is: Lines in the Sand (House) Anthony2106 (talk) 10:33, 11 November 2024 (UTC)

only autistic people will ever get that. we live in a world of adhd 82.168.236.78 (talk) 18:54, 11 November 2024 (UTC)

Opening

I am writing because I fear that the opening to the article is difficult for the layperson to understand. Forgive me if there is something I have missed, but to me, "symptoms of deficient reciprocal social communication" sounds verbose and overly complicated. I feel that the previous "difficulties in social interaction and communication" is superior to this wording. I would edit this myself, but I would like to seek a consensus first. Please share your thoughts below if you have the inclination. FriendlyNeighborhoodAspie (talk) 12:37, 15 October 2024 (UTC)

I disagree. Terminology should not be dumbed down per se merely so the lay person can understand it as this is is the main English page, and not Simple English, which is available for this reason on Wikipedia. The definition given conforms to the ICD-11, World Health Organization, DSM-5 cited in the article and the other one you have given here is more ambiguous and less accurate. But thank you for checking on this issue and hopefully a consensus can be formed. Димитрий Улянов Иванов (talk) 16:28, 15 October 2024 (UTC)

According to Wikipedia's guidelines, the lead should be written in simpler language than the rest of the article. If that means that you have to "dumb down" a couple of sentences, then that's okay. You can keep the medicalese if you want; the guidelines only say not to put it at the top of the article (or as the first few sentences in a long section). See WP:MTAA for a good explanation. WhatamIdoing (talk) 01:40, 2 November 2024 (UTC)

Thanks for clarifying that. I think that’s fine as long as the underlying concepts are kept and consistent with the global scientific consensus (I.e., WHO, ICD-11, DSM-5, NICE, APA guidelines) so important information is not redacted. Basically, rather than shortening the first lede sentence, it can just be reworded differently. Димитрий Улянов Иванов (talk) 17:09, 3 November 2024 (UTC)

Yes, it's very badly written. Oolong (talk) 15:35, 3 November 2024 (UTC)

Do you have any suggestions as to how to improve the wording? FriendlyNeighborhoodAspie (talk) 16:59, 3 November 2024 (UTC)

how about very strong imagination that makes talking to "normal people" challenging? i'm autistic and my language skills are far beyond the people i meet everyday, which in itself causes problems. in my opinion all autism is is just a very strong imagination, unusually strong, so strong that people think it's an illness.

problems with small talk, chit chatting, "being normal" 82.168.236.78 (talk) 07:03, 11 November 2024 (UTC)

That's a very interesting take, but it isn't medical. It therefore can't be in the opening of the article. FriendlyNeighborhoodAspie (talk) 12:26, 11 November 2024 (UTC)

It’s not ‘badly written’. It’s precisely how ASD is defined by the World Health Organisation (WHO), ICD-11, DSM-5, NICE guidelines etc. Димитрий Улянов Иванов (talk) 17:07, 3 November 2024 (UTC)

I'm now very satisfied with the wording. If nobody has any problems with it, I suggest we keep this wording until further notice. FriendlyNeighborhoodAspie (talk) 18:36, 3 November 2024 (UTC)

It definitely was badly written, I'm afraid. Sorry to be blunt. The phrasing was different from any of those sources, as far as I can see? I'm not sure which specific sources you had in mind?

Wikipedia is an encyclopaedia for a general audience, and leads in particular need to be written with that in mind. Oolong (talk) 18:38, 6 November 2024 (UTC)

I think the editor had the ICD in mind. Perhaps it wasn't written verbatim, but I can see significant sampling from the ICD text. FriendlyNeighborhoodAspie (talk) 22:06, 6 November 2024 (UTC)

Hi, I just want to bring to attention that we have a Simple English Wikipedia for this purpose. The page can be found at simple:Autism. Lordseriouspig 10:06, 18 November 2024 (UTC)

Counterpoint: we have lead sections for this purpose.

"It gives the basics in a nutshell and cultivates interest in reading on—though not by teasing the reader or hinting at what follows. It should be written in a clear, accessible style with a neutral point of view."

Note also that the lead section of this article is much longer than it should be. Oolong (talk) 18:53, 28 November 2024 (UTC)

Being born with Asperger Syndrome and editing this article

Dear wikipedia community,

My name's Noam, 32 from Israel. I was born with Autism. Back in my childhood, they used the name Asperger Syndrome, which is still a name used today, but officially the name was changed to a mild type of autism, or high functioning. Its very important to me to be able to help edit this article and improve it. Being born with Autism, has made me a weird, different, special, emotional, and very disciplined person. Can you explain if the article is 100% complete or requires further ediiting? if so what needs to be edited? Noam Atadgy (talk) 23:50, 28 October 2024 (UTC)

Hi Noam, welcome to (English) Wikipedia! I don't know that anyone's going to be likely to respond to you telling you what they feel needs to be edited. I'd suggest being bold, and reviewing the article for yourself and making any changes that you feel will improve the article. That said, I'd also recommend being careful, making small numbers of relatively incremental edits (say, five at a time at most), and leaving edit summaries so other editors know what your intentions are. If you're adding information, you absolutely should provide reliable sources in the form of citations. It's reasonably likely that with an article of this nature your edits may be reverted; if and when that happens, please don't take it personally, but rather consider it a teachable moment, and above all, if that happens, please don't simply reinstate your edit(s), but rather initiate a discussion here or with the reverting editor, as suggested at WP:BRD. That way, other editors can review the situation as well and provide their counsel. I'm happy to try to answer any general questions you may have. Happy editing! DonIago (talk) 12:42, 29 October 2024 (UTC)

My brain works a bit differently. It affects how I see the world, how I communicate, and how I interact with people. It’s just a part of who I am, not something that needs to be fixed. It comes with its own strengths and challenges, but it's always been a part of my life. In essence, that is, I have autism as well. 206.57.152.111 (talk) 14:56, 6 November 2024 (UTC)

Hi Noam, there's a lot missing from the article, but there's also a lot that's included, but shouldn't be! This article is way too long, and quite a lot of it is not well-sourced.

I think it's safe to say that many Wikipedians are autistic, although not all have realised it yet - there is much about the site that is attractive to many of us... Oolong (talk) 18:57, 28 November 2024 (UTC)

Autism, Wikipedia and epistemic injustice

Over the last few years I've occasionally tried to improve Wikipedia's autism coverage, working to bring it up to date with modern understandings and so on. For example, in 2022 I put in a lot of work to ensure the 'Autism' entry was merged with 'Autism Spectrum' (rather than the entry under that title focusing mainly on 'classic' or 'Kanner' autism). I also started work on a substantial rewrite of the page with a couple of other editors, but I think we all got kind of burned out on arguing with people every step of the way.

Obviously this page - in common with other autism-related pages - has been a bit of a battle-ground at times. No surprise there, when you look at how controversial practically everything about autism is in the wider world! Still, I think the result is a page (a set of pages, actually) that badly needs bringing up to date, and where all attempts to do so tend to be exhausting, especially for any newcomers. Effectively, some of the material here is so out of date and/or one-sided as to constitute misinformation, while we completely miss out some absolutely key things about autistic experience that anyone living, working with or being an autistic person really ought to know about.

In the hopes of helping people to understand these issues and how they come about, I ended up writing a long article for Thinking Person's Guide to Autism about 'How Wikipedia Systematically Misleads People About Autism' (edited 2024-11-25 to reflect published title and URL). This may also help motivate some more people to work on bringing Wikipedia up to date on all this.

I'm posting this here because I thought existing Wikipedians should know about it: it could potentially be considered 'canvasing'; and I figured that anyone looking at this Talk page might find it an interesting read, which could help inform how they think about this and related articles. There are also some questions in there which I'd be interested in other editors' answers to. It's packed with references to further reading - I tried to ensure that anything vaguely contentious (or little-known) was backed up with high-quality citations.

I'm happy to answer any questions here, or by email. Thanks!

Oolong (talk) 17:16, 2 November 2024 (UTC)

To keep Wikipedians updated: the essay has now been published as How Wikipedia Systematically Misleads People About Autism; for those who prefer Wiki-style formatting and referencing, it's also here as User:Oolong/injustice.

I've also put a short video up on TikTok and Instagram, hoping to engage more people to help fix some of the substantial, outstanding issues with this and related entries. Oolong (talk) 17:41, 25 November 2024 (UTC)

Acronyms

Mitch Ames did you see my edit summary here? [5]. You have removed the acronym again as "unused" but it is used. Thus we should expand it on first use per web content accessibility guidelines. Sirfurboy🏄 (talk) 13:08, 7 November 2024 (UTC)

I did see your edit summary, but the use of the term in the reference title is irrelevant. It is not the article's responsibility to expand an acronym used in the title of a reference. We are not using the acronym as a replacement for a term (in the article) - we are merely quoting the article title verbatim. Mitch Ames (talk) 13:22, 7 November 2024 (UTC)

MOS:ACRO1STUSE, in line with the Web Content Accessibility Guidelines, says an acronym should be written out in full for the first time, followed by the abbreviation in parentheses, e.g. maximum transmission unit (MTU) if it is used again in the article. There are no exceptions for acronyms used in quotations or titles. It is the responsibility of the creator of a web page to ensure that the page complies with web content accessibility guidelines and Wikipedia policies. The acronym is on the page, so it should be expanded. Sirfurboy🏄 (talk) 14:21, 7 November 2024 (UTC)

I agree with the above ^. That is how I typically see this on the site, per WCAG Димитрий Улянов Иванов (talk) 14:22, 7 November 2024 (UTC)

MOS:ACRO1STUSE says (emphasis mine) "... the abbreviation in parentheses ... if it is used again in the article". Although "the article" includes the references, I suggest that that intent of that guideline is "used again in the article content (lead, table of contents, body)".

In any case...

• In the first reference, the term "NICE" is not "used", it is "mentioned", as part of the web page title (and the website address).
• In the second reference the publisher is listed as "NICE" - the name that their website repeatedly and almost exclusively uses to identify itself, including when describing themselves at https://www.nice.org.uk/about. Although we are using (rather than mentioning) "NICE" in this reference, I argue that we are not using the term as abbreviation of the full name, instead we are using the name that the organisation itself uses, so we do not need to define it.
• Given that NICE's own website almost exclusively uses "NICE", not "National Institute for Health and Care Excellence", I suggest that it is "most commonly known by its acronym, in which case the expansion can be omitted".
• With regard to Web Content Accessibility Guidelines, in both references (and in particular the second) the reader may click on the term to find out what it means, which satisfies Success Criterion 3.1.4 Abbrevations by way of Technique G55 Linking to definitions.

Mitch Ames (talk) 09:52, 9 November 2024 (UTC)

The first reference is a title, and the reference makes it clear it is from NICE. Who are NICE? the reader might wonder. Yes, indeed, they can click through to the reference and see it right there in the top left hand corner. Er... if they can see. But, in fact, that text banner in the top left of their page is not text at all but a scalable vector graphic (svg) and has no alternative description. The DIV on the page calls it a logo, but as an SVG, it doesn't benefit from alt text. It's just a chunk of data. Despite allegedly having an accessible site, the NICE site does not seem to expand the NICE acronym for the reader. That's an accessibility fail! This is the case for the second link too. So we have two references on the page, and the first one, labelled "... | Guidance | Nice" and a link to the nice.org.uk website, supporting the text "National Institute for Health and Care Excellence" and for some reason we shouldn't put (NICE) in brackets beside it per MOS:ACRO1STUSE? Sirfurboy🏄 (talk) 18:52, 10 November 2024 (UTC)

the NICE site does not seem to expand the NICE acronym for the reader. That's an accessibility fail! — So send a feedback to them and ask them to fix their website. The Wikipedia link satisfies Technique G55 - and thus Web Content Accessibility Guidelines.

In any case I still assert that having the acronym in the references is not "using" it for the purposes of MOS:ACRO1STUSE. Would you have this (and any other) Wikipedia article also explicitly define the acronyms doi, issn, lccn, pmc, pmid s2cid etc as used in the references? Mitch Ames (talk) 12:13, 17 November 2024 (UTC)

It doesn't meet G55, because we are not linking to the definition. The definition is not visible to anyone using a screen reader. I would indeed argue for similar expansion in any text where we discuss, for instance, the Digital Object Identifier (DOI). This is clearly better for a term that usually goes by its initialism and is expanded in full in the text. As for whether we could just use the initialism - that would not work for NICE in an international encyclopaedia. What might be instantly recognisable in the UK would certainly not be recognisable elsewhere. Sirfurboy🏄 (talk) 14:00, 17 November 2024 (UTC)

References

Semi-protected edit request on 8 November 2024

Add a citation for the percentage of fraternal twins both having autism spectrum disorder: Rosenberg RE, Law JK, Yenokyan G, McGready J, Kaufmann WE, Law PA. Characteristics and concordance of autism spectrum disorders among 277 twin pairs. Arch Pediatr Adolesc Med. 2009 Oct;163(10):907-14. doi: 10.1001/archpediatrics.2009.98. PMID: 19805709. Sunnyjw (talk) 20:20, 8 November 2024 (UTC)

 Done, thanks for finding that. DrOrinScrivello (talk) 23:24, 13 November 2024 (UTC)

I don’t see the point in playing Neville Chamberlain over the image.

From I’ve gathered, some people on here started clutching pearls over a picture of a child stacking cans that’s been up for years, because apparently the lifelong disorder with noticeable signs commonly beginning in childhood (one of which is the said stacking of cans) shouldn’t have an photo that reflects that. But even if you wanted to do your science by council, you need only look up the keywords “Wikipedia,” “kid,” and, “autism” in literally any order whatsoever and I’d be very impressed if you didn’t realize that the amount of people who prefer or feel represented by the image (including the parents of the actual child) vastly outnumbers those that for whatever reason do not. I feel ridiculous for even having to type some of this. Apparently, other photos throughout the article have also been deleted purely because, from what I can tell, one or two people didn’t like the subjects in them. If you’re going to start stripping articles whenever a few people begin to complain and wait until “a clear consensus has been reached” over everything, you’ll wind up with the most barebones site, especially if it’s over something as innocuous as this. Zeltzamer (talk) 02:59, 13 November 2024 (UTC)

I am somewhat tempted to open a WP:RFC regarding this as I've seen it be debated so many times on here but I'm not sure if that is the best path moving forward. IntentionallyDense ^(Contribs) 03:38, 13 November 2024 (UTC)

If you cannot see that representing a lifelong condition through an image depicting a non-universal behaviour enacted by a toddler is fundamentally inappropriate, then nothing anyone says will have any effect on your thought processes. I am a diagnosed autist, I never stacked cans or lined up toys. Despite having long bouts of selective mutism at infant school and other problems, my autism was not picked up in childhood. I was diagnosed in late adulthood. The photo has zero relevance to me and to many other autistic people. Urselius (talk) 08:55, 15 November 2024 (UTC)

I agree with @Urselius. That image is trivialising and portrays the disorder in a very superficial way. The inclusion of an image is not necessary nor a matter of urgency so its much more preferable to have no image at all unless one can be proposed that at least attempts to offer some comprehensive or underlying depiction of ASD, as we see in the ADHD article for instance. Understand that to find an acceptable image is problematic not because of some baseless disagreement happening in the talk pages here, but the complexity of the topic and the absence of a unified construct that can be depicted in an image are the main constraints. Димитрий Улянов Иванов (talk) 14:54, 17 November 2024 (UTC)

By this logic, any image on any article attempting to use any evocative visual shorthand to convey behaviors commonly associated with a select disorder is inappropriate and should be deleted. Not everyone with depression clutches their head while sitting in a chair and not everyone with anxiety feels an infinite scream passing through nature over a Norwegian fjord. Nor does everyone with a disorder/disease lie sick in bed with a book (some edit Wikipedia.) Sorry, Van Gogh, Munch, and Ancher. You did some good work but the talk page round table has declared you non-universal. Zeltzamer (talk) 07:30, 30 November 2024 (UTC)

@Zeltzamer I don't care that autism mums (mums of autistic children) might like the image, it makes people think autism is for babys or a kid condition, it makes the "but you don't look autistic" type conversations from non-autistic people, its stereotypical as of course its a boy (everyone knows autistic girls don't exist). No image is fine. Anthony2106 (talk) 06:51, 29 November 2024 (UTC)

Question: who thinks this? So far the only people I’ve seen either like the image or are worried that it’ll make others think that autism only exists in babies or something. None of these hypothetical “people who saw picture of kid stacking cans and based their entire view of autism around that” have actually been proven to exist. Any of these alleged people who see that picture and think those things would’ve thought them without it; removing it isn’t going to give them any more of an incentive to educate themselves. And you shouldn’t worry about curtailing a page because someone may or may not base their entire medical opinion around the first innocuous image they see. That person would already be dead from forgetting how to breathe. Zeltzamer (talk) 05:06, 30 November 2024 (UTC)

Discussion at Wikipedia:Categories for discussion/Log/2024 November 14 § Identity-first language for autistic people categories

 You are invited to join the discussion at Wikipedia:Categories for discussion/Log/2024 November 14 § Identity-first language for autistic people categories. Raladic (talk) 23:02, 14 November 2024 (UTC)

Signs and symptoms --> Common characteristics

The section is now called "Signs and symptoms" but I liked the old name. I don't care if "symptoms" is common in books if some autistic people don't like it we should try to avoid it, the old name worked fine.

Can people other then Димитрий Улянов Иванов respond? Anthony2106 (talk) 09:44, 19 November 2024 (UTC)

Apologies but I must reply to this. First, to preface, to say you “lied” in the edit summary about why you restored the edit may qualify as vandalism. I won’t personally revert it now, but please be mindful of doing such things.

Wikipedia Guidelines state “It is important to note that in forming its consensus it is the members of a particular scientific discipline who determine what is scientific and what is questionable science or pseudoscience. Public opinion or promoters of what is considered pseudoscience by the scientific consensus hold no sway in that determination." (Wikipedia:Scientific consensus).

A global scientific consensus has been demonstrated on the page section entitled “Should autism continue to be described as a neurodevelopmental disorder characterised by symptoms, impairment and severity?”. The term symptoms and impairments are used primarily in national and international guidelines, consensus statements, standardised diagnostic criteria, systematic reviews and other secondary scientific sources but signs are as well so including both gives due weight.

Thus, the classification must be kept to comply WK guidelines. I will keep making and adhering to these points unless the references are adequately addressed. Димитрий Улянов Иванов (talk) 17:39, 19 November 2024 (UTC)

Yes, there is a strong case to made that 'symptoms' is inaccurate and inappropriate here, and it's not at all clear what advantages it has over the alternative.

I see that the Signs and symptoms page describes them as "diagnostic indications of an illness, injury, or condition." The 'nutshell' summary of the page just says "Indications of a specific illness, including psychiatric", which obviously doesn't fit. Similarly, the Cambridge Dictionary defines "symptom" as "any feeling of illness or physical or mental change that is caused by a particular disease" - again, autism is not considered a disease by reputable sources, making the use of the term inappropriate here.

If the intention of this section is merely to summarise the diagnostic criteria (which is how I interpret the page linked above) then 'Diagnostic criteria' would be a more accurate heading. If we want a section on common characteristics, I wonder if we should also have that, given how much the existing diagnostic criteria miss out or mischaracterise!

I have raised a set of related questions over on WikiProject Medicine (explored more deeply in my recent article). It is not clear what the medical framework really adds to this article, and interpreting it rigidly seems to be actively hampering its usefulness as an encyclopaedic entry. Oolong (talk) 10:47, 26 November 2024 (UTC)

Again, it is not "inaccurate" nor "inappropriate". I'd like to cite and contextualise the evidence for this so others don't miss it. Hopefully it can be addressed in this thread against the references you have provided above, which are not related specifically to Autism. As one reads the evidence here, keep in mind my comment above about what Wikipedia guidelines mandate:

References

The ICD-11 and World Health Organization (WHO), guidelines used globally, conclude that autism is a neurodevelopmental spectrum disorder and that "The onset of the disorder occurs during the developmental period, typically in early childhood, but symptoms may not become fully manifest until later, when social demands exceed limited capacities. Deficits are sufficiently severe to cause impairment in personal, family, social, educational, occupational or other important areas of functioning". [1] . This Wikipedia article also has concluded that "ICD-11 was produced by professionals from 55 countries out of the 90 involved and is the most widely used reference worldwide".

The DSM-5 criteria, used internationally, concludes that autism is a neurodevelopmental spectrum disorder; per diagnosis that "Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning" and that "Severity is based on social communication impairments and restricted, repetitive patterns of behavior". 2

Guidelines from the UK National Institute of Health & Care Excellence (NICE) conclude that autism is a neurodevelopmental spectrum disorder. They write "The clinical picture of autism is variable because of differences in the severity of autism itself". 3 NICE guidelines also refer to "symptoms of possible autism..." 4

National Institute of Mental Health (NIMH) Guidelines conclude that "Autism spectrum disorder (ASD) is a neurological and developmental disorder" and acknowledge the existence of "signs and symptoms of ASD". 5 Paradoxically, a different NIMH publication advocates against some of the above [6].

The European Society for Child and Adolescent Psychiatry (ESCAP) and Autism Europe (AE) guidelines, used internationally, conclude that "autism spectrum disorder (ASD), which is now recognised not only as a childhood disorder but as a heterogeneous, neurodevelopmental condition that persists throughout life". They also state that "Earlier recognition of autism symptoms could also be improved...". 7

German AWMF guidelines conclude that autism is a neurodevelopmental disorder characterised by symptoms, impairments and varying severity levels in accordance with the above guidelines. 8

National Guidelines in France conclude that autism is a neurodevelopmental disorder, with varying severity levels, characterised by symptoms and the presence of significant impairment, endorsing the DSM-5 and ICD-11(9).

A scientific consensus statement on the evaluation of ASD conclude that it's a neurodevelopmental disorder, with varying severity levels and is characterised by symptoms and the presence of impairments (National Consultation Meeting for Developing IAP Guidelines on Neuro Developmental Disorders under the aegis of IAP Childhood Disability Group and the Committee on Child Development and Neurodevelopmental Disorders et al., 2018)).

Consensus Guidelines on ASD concluded that "Autism spectrum disorder (ASD) is a neurodevelopmental disorder with an estimated lifetime prevalence of at least 1% (Baird et al., 2006; Brugha et al., 2011). Core symptoms include..." (Howes et al., 2018).

Canada's national diagnostic guidelines from the Canadian Paediatric Society (CPS) conclude autism is a neurodevelopmental disorder; that "[children with ASD] can present with a wide range and severity of symptoms"; that "This statement proposes three ASD diagnostic approaches, the choice of which depends upon the paediatric care provider’s clinical experience and judgment, and the complexity of symptom presentation" (CPS, updated: 2024).

The International Consensus Statement on ADHD, authored by 80 scientists, coendorsed by 403 experts and numerous associations, across 27 countries and 6 continents (Faraone et al., 2022) conclude that ADHD [another neurodevelopmental disorder] "the clinical significance of the signs and symptoms of the disorder has been recognized for over two centuries". This shows the term symptoms and signs are both applicable to neurodevelopmental disorders. Systematic reviews and meta-analyses use these terms for Autism as well, not just that specific neurodevelopmental disorder (Dietert et al., 2010; Mojgan et al., 2017; Belmonte et al., 2022).

It appears that some blog posts, advocacy papers and a textbook advocate for a change in terms deviating from calling ASD a neurodevelopmental disorder but simply a neurodiversity wit mere "traits" rather than symptoms and impairments.10,11,12. Note that these are advocating for something that is not currently established. Thus, they are not sources that can overturn the global scientific consensus that autism is a neurodevelopmental disorder as it's currently defined. Notably, other textbooks do not share such views (e.g., Volkmar, 2021). As cited in this WP article, other peer-reviewed reviews disagree with these advocations (Neison et al., 2021; Shields et al., 2021). Note that blog posts are not peer-reviewed, scientific papers and thus are not reputable in comparison to this literature. This Wikipedia article at the time of writing does a well-balanced view of the ongoing debate about whether an alteration in terms should take place in the future. Димитрий Улянов Иванов (talk) 13:12, 26 November 2024 (UTC)

You don't seem to be making any reference to the definition of symptom here.

Yes, many people use the word 'symptom' with respect to autism.

No, that doesn't demonstrate that it is accurate or appropriate. To do that, you have to look at the meaning of the word. Oolong (talk) 18:40, 28 November 2024 (UTC)

International guidelines, consensus statements, diagnostic criteria on autism that are standardised around the world, which define it as characterised by symptoms, are not "people using" the term.

Dictionary definitions, which attempt to generalise and are unrelated to autism, do not overturn the global scientific consensus. The scientific understanding of autism is what informs its definition—not a generalized dictionary entry that has nothing to do to with autism. The plethora of citations provided substantiate this, yet you have failed to acknowledge their existence and are instead dismissing them by inaccurately equating them to individual opinions.

Wikipedia's guidelines (as noted above) explicitly state that such references must guide the phrasing of articles, not public opinion or unrelated, nonspecialised references. Димитрий Улянов Иванов (talk) 18:59, 28 November 2024 (UTC)

It looks like what you're citing there is an essay. If you look at the box at the top, you'll see that it states: "It contains the advice or opinions of one or more Wikipedia contributors. This page is not an encyclopedia article, nor is it one of Wikipedia's policies or guidelines".

Perhaps Wikipedia has actual guidelines that are relevant here, but this is not one of them.

In any case, the term 'scientific consensus' is generally used regarding matters of fact, not terminology. These are very different sorts of thing!

The factual question we'd want to put to scientists to resolve this would be about whether or not autism, and its characteristics, fit agreed definitions of these terms. To which end, we'd want to know what those definitions are. Hence reaching for a dictionary. Feel free to suggest alternative definitions; these are obviously not the only ones in use... Oolong (talk) 19:21, 28 November 2024 (UTC)

Here is what was actually concluded in Wikpedia:Scientific Consensus (see what I marked in bold):

"When writing about ideas around which scientific consensus has coalesced, Wikipedia editors should strive to describe those ideas as plainly as possible. It is important to note that in forming its consensus it is the members of a particular scientific discipline who determine what is scientific and what is questionable science or pseudoscience. Public opinion or promoters of what is considered pseudoscience by the scientific consensus hold no sway in that determination. (See Wikipedia policy and guidelines regarding Undue weight, extraordinary claims sourcing, verifiability, reliability, and dealing with fringe theories)." (Wikipedia: Scientific Consensus).

So while you are correct that the citation is an essay itself (thanks for pointing out my error there), it does link to the corresponding Wikipedia policies and guidelines to substantiate that. On the contrary, I think what you are doing here is failing to acknowledge the existence of the plethora of references, and misrepresenting guidelines and standardised diagnostic criteria as "people's use" of a term. Instead, you can address the references showing the scientific understanding of autism informing its definition—not some dictionary's generalised entry that has nothing to do with it. Димитрий Улянов Иванов (talk) 19:36, 28 November 2024 (UTC)

While I think terminology is important & words shape our thinking, I don't believe this discussion is helpful if the goal is to get to a more informative & balanced Wikipedia entry.

It seems self-evident to me that when one refers to the established medical/psychiatric literature, one is going to find a definition of autism as a "neurodevelopmental disorder characterized by persistent deficits in social communication/interaction and restricted, repetitive patterns of behavior". This is undoubtedly the consensus in that field, and within it terms like "symptom" and "disorder" with their specific meanings make a lot of sense.

But this terminology is perceived differently outside of the field, and as Oolong has pointed out here and elsewhere there is a movement towards terms that are perceived as less deficit-oriented within the medical field as well as in other fields concerned with autism (eg education, psychotherapy, public health).

Rather than arguing about which terminology is "correct" I'd rather we discuss whether the Wikipedia entry "Autism" should take a strictly medical/psychiatric point of view or, if not, how it could balance different perspectives. Different points of view require different vocabulary to do so accurately and simply replacing eg the word "symptom" with "characteristic" does not improve the entry in my opinion. A "diagnosis" requires "symptoms" but describing the experiences and needs of autistic people using medical vocabulary is awkward. Sometimes, there's a shared terminology (eg autistic masking) but usually it's best to follow what's most commonly used (eg RRBs and stimming).--TempusTacet (talk) 23:44, 28 November 2024 (UTC)

@TempusTacet Daim yeah we should do both -- Include some technical words from the books and words autistic people actually want. Anthony2106 (talk) 23:50, 28 November 2024 (UTC)

I did not mean to suggest simply "mixing up" the vocabulary. My point is that neither Димитрий nor Oolong are wrong and my proposed solution is to be acknowledge that there is not one true perspective on autism, each of which comes with their own terminology. It can be meaningful to describe autism as a difference in cognition & perception (eg in an educational or therapeutic setting) in the same way it's functional to talk about symptoms, their severity, and their management in a medical setting. This has little to do with what "people actually want" but more with what's established & productive. (I'm not implying that it's not important to interrogate the effects & perception of terminology and make changes, as we do.)--TempusTacet (talk) 08:35, 29 November 2024 (UTC)

Yes, I broadly agree with this.

It is important to note, though, that while it's true that there is a partial consensus within the medical/psychiatric establishment around medicalised views of autism, even very mainstream, explicitly medical sources like the Cleveland Clinic ("Autism symptoms — more accurately called characteristics — are specific behaviors that healthcare providers look for") and the NHS (which completely omits the term 'symptom' from its pages on 'signs of autism') often present autism in a much less medicalised, deficit-based way than the existing entry on Wikipedia.

Similarly, leading researchers strongly associated with biomedical autism research, like Simon Baron Cohen[6] (who I do not have a lot of time for, in general) and Francesca Happé & Uta Frith[7] are very publicly on record questioning the validity of framing autism as a 'disorder'.

Change has been rapid on this front in recent years, and the aggregate shift has been very much towards a more neurodiversity-based way of thinking about autism. Oolong (talk) 17:38, 1 December 2024 (UTC)

I agree with what you wrote here. I don't have the impression that Димитрий is denying that there is a change in language or would claim that medical terminology is without problems, especially when used outside of the field. From our discussion here, I've understood that his main concern is that autism could be presented in a way that contradicts current medical consensus, and that using language that's also associated with voices that are outside of this consensus (eg positions in the spirit of Indigo children) could invite their uncritical presentation. I would like to add that the same problem arises when using language that is also used by voices that are painting autism in an overly negative light eg in hopes of selling snake oil to desperate parents.

Since you mention Francesca Happé, I'd like to point to this recent public lecture of hers, where she models a communication style like I'm trying to advocate for here.--TempusTacet (talk) 18:51, 1 December 2024 (UTC)

Hi, thank you for your diplomatic comments, and for acknowledging that there is indeed a scientific consensus on the issue. That was the initial point I have repeatedly been showing here because some editors discount the references without any justification to claim a consensus to the contrary. I agree that exclusively describing autism through a scientific standpoint may not be most appropriate, and thus balancing this with public opinion should be done but really only in the relevant sections.

I hope the question can now be about reconciling the scientific consensus with public opinion, and where specific terms would best be placed.

For context, we are extremely familiar with the neurodiversity movement, and how a subset of its advocates are making a mockery of the decades of effort expended to have neurodevelopmental disorders taken seriously. A significant portion of the movement is anti-psychiatry, oriented around science-denial, and downplays or even erases the harms, experiences and subsequent distress of people as a direct result of their various cognitive impairments.

To substantially reframe the article in favour of viewpoints that contradict the scientific consensus would be problematic - even if done in a neutral way. It would result in various other kinds of science-denial beyond the rejection of autism as a valid neurodevelopmental disorder. For example, it could lead to the article promoting the myth that vaccines are a cause of autism because, after all, movements exist adhering to these narratives. This is ultimately why the Wikipedia guidelines exist stating that scientific consensus should be prioritised and relied on, so the content is accurate.

Thus far, I don't see major concerns with regards to reconciling the portrayal of ASD with public opinion. Sections exist on those matters and even the lede neutrally and accurately describes the controversy on the framing of ASD. Additionally, the article describes the disorder interchangeably with the terms signs and symptoms, as it does in the section title. Both terms are scientifically valid, but just because personal disagreement exists with the use of the latter term doesn't suggest it should be discarded, or that we should reframe autism as a mere neurodiversity.

It's important to note that to be diagnosed with autism, the diversity must reach an extreme enough point to cause significant impairment or distress to the individual. This article is specifically concerning autism - the diagnosis - and not autistic traits, so the scientific description that has been used is accurate for the context. But I can see how a different framing might be appropriate in different contexts, so you are correct to point out this nuance.

I hope this helps clarify matters. Димитрий Улянов Иванов (talk) 18:45, 29 November 2024 (UTC)

Димитрий, please don't conflate "scientific" with "medical". I know that it can seem otherwise to those of us working in the field but there are other fields & professions concerned with autism as well. This has little to do with "public opinion" or contradicting the medical viewpoint. Multiple perspectives can be valid at the same time & more often than not considering them simultaneously is productive.

I'm not advocating for the inclusion of fringe theories or minority positions promoted without substantial evidence. I'm also not advocating for taking a "neurodiversity perspective", which would be equally limiting & excluding.

I disagree that "This article is specifically concerning autism - the diagnosis" and I believe that this is what we should discuss, rather than terminology, which will follow naturally. From my point of view, this article should cover "autism - the phenomenon". This includes "autism - the diagnosis", which certainly has to take up a larger part. But a well-rounded depiction of autism includes more than the narrow lens of a diagnostician, whose focus is on what differentiates autism from other conditions. In my opinion, a Wikipedia entry on autism should also cover epidemiology, causes, and pathophysiology as well as therapies, education, and legal aspects, in addition to history, well-being, and advocacy. Each of these topics yields a different perspective (all of which are compatible with a medical perspective!) & requires its own terminology.--TempusTacet (talk) 19:53, 29 November 2024 (UTC)

Medical science is a science, and I wasn't merely referring to autism in the context of medicine. The guidelines, consensus statements, and systematic reviews I cited are interdisciplinary, covering not only its diagnosis but the causes, prevalence, associated features, implications in major life activities, therapies for etc of ASD, unanimously using the same terminology and concluding autism is a valid neurodevelopmental disorder. The aforementioned description is not exclusive to the context of medicine.

I agree the article is not just regarding the diagnosis itself. Apologies for accidentally implying that. What I meant was that the underlying topic is autism as it's diagnosed, which upholds the other areas. Causes, epidemiology and pathophysiology, treatments, legislation etc all revolve around the diagnosis and validity of ASD. Scientific studies use the same terminology in these contexts too.

In terms of advocacy, the terminology may differ depending on the group represented and that's perfectly understandable. I wouldn't be against using different terminology in such contexts if appropriate. For instance, in the lede, the controversy regarding the neurodiversity movement is mentioned. The first sentence that represents the movement uses the terminology they tend to use (e.g., neurodiversity), while the second one representing the opposing perspective uses that context's terminology (e.g., disorder, impairments). This gives due weight. However, what I'm against is reframing the article such that it no longer describes autism according to the scientific consensus in areas it applies, which are not isolated to medicine.

My main concern is how some other editors have argued the terms disorder, symptoms, impairments and severity should be completely removed from the article because it doesn't align with the opinions of some blog posts or advocacy groups. That simply doesn't overturn the scientific consensus nor should it, except in the contexts where the topic concerns these specific groups or where the consensus may be to the contrary. It seems to me that using this sort of logic as to what constitutes valid sources, anyone can argue something like "the article should say autism is caused by vaccines because blog posts and advocacy groups exist saying so! Disregard the scientific consensus!". I don't mean to suggest this is what you uphold but it has been suggested by others in the talk page. Димитрий Улянов Иванов (talk) 11:27, 30 November 2024 (UTC)

I understand your concerns and share many of them myself. I would like to broaden "what I'm against is reframing the article such that it no longer describes autism according to the scientific consensus in areas it applies, which are not isolated to medicine" and say that personally I'm opposed to reframing any description of autism & related topics through a lens that is unsuitable for the particular area. I'm not so much thinking about advocacy but the coverage of topics like autistic burnout that has come up elsewhere. There seems to be the desire to describe it as a well-defined & diagnosable condition rather than take it as a common experience of a large portion of autistic people that is researched as such. (Personally, I find it strange that on the one hand, there's a justifiable desire to view & describe autism as non-pathological unless specifically discussing it as a disorder in a strictly medical context but on the other hand there seems to be a feeling that unless something gets an entry in the DSM or at least tentative diagnostic criteria it's somehow invalid.)

I don't think there's a danger that fringe blog posts or the like would be accepted as sources. A lot of academic & professional literature (eg psychotherapy, education, parenting) describes autism without using terms like "disorder", "deficiencies", or "managing symptoms". Saying "stimming" instead of "stereotyped and repetitive motor movements" and "special/intense interests" instead of "highly restricted interests that are abnormal in intensity or focus", or saying "masking" instead of attempting to differentiate camouflaging from compensatory behaviors does not change anything about what's described. But language like this is more appropriate in many circumstances, even in psychoeducation delivered by psychiatrists. A parenting or self-help book written like the DSM is useless, as is a diagnostic manual written like a parenting book. Both can & should deliver the same correct information backed by scientific evidence but have to present it differently to fulfill their purpose. The same goes for a Wikipedia entry on autism.--TempusTacet (talk) 12:24, 30 November 2024 (UTC)

You make very good points. Personally, I'm unaware of the intricacies with autistic burnout so I can't offer a comment there. But the conflicts withwhether and to what extent reliance should be with diagnostic criteria is quite a concern, I do notice this quite a lot too in other pages. There are instances where the DSM and ICD are simply wrong. For example, both exclude emotional dysregulation as a diagnostic symptom of ADHD despite the mountains of scientific evidence indicating it should be. In general, they characterise ADHD in a very superficial way rather than as a far more complex, underlying disorder of executive functioning and self-regulation. The article on ADHD was originally very DSM focused in its descriptions and so I strived ot fix that with references to other reputable sources.

If a lot of academic and professional literature in those contenxts specifically do characterise autism differently, then certainly such characterisations should be used in the article. The secondary literature (guidelines, reviews, meta-analyses etc) primarily describes autism as has been aforementioned in many of the main topics (symptomology, impairments, treatment, accommodations, prevalence, comorbidities, etc). This may differ when it comes to other areas. Disseminating scientific findings, for example in trade books for the public is one for sure. In many cases, this is to make the information more understandable to a lay audience and thus not necessarily contradicting other descriptions. And I know plenty of clinical handbooks and books for the public that are pro-disability in their descriptions (e.g. Barkley et al, for ADHD and CDS), and for good reason.

I agree that blog posts and other non-peer reviewed sources are suitable for some contexts, like cultural and societal interpretations of topics. I think we just need to be careful to ensure they are not generalised or contravene on areas where the scientific consensus is much more relevant.

This shouldn't be based on just e.g. the diagnostic criterion; we should be citing a variety of scientific literature to gain as much of a balanced perspective as possible. These can go from guidelines to reviews and meta-analyses, editorials to reports directly from journals, diagnostic criteria to primary studies to consensus statements etc. but they all share a degree of reputability and peer-review other types of sources don't.

Anyways, thank you for the discussion and the chance to reach greater understanding of this nuance! Димитрий Улянов Иванов (talk) 14:09, 1 December 2024 (UTC)

Thanks for this. Yes, the fact that medical science is not all of science is really important to bear in mind for an article like this!

This is part of the reason I've repeatedly challenged Димитрий's insistence that what he's arguing for is simply the medical consensus; that and the fact that, as noted above and elsewhere, even among scientists specifically working within a biomedical framework, there is in fact serious disagreement about the appropriateness of framing autism as a 'disorder'.

But of course, you are right that this is largely beside the point: Wikipedia is a general-purpose encyclopaedia, written for a general audience. We should absolutely be avoiding making claims that are contradicted by a scientific consensus, but that's simply not what anyone is arguing for here! How we frame those claims is what is under dispute.

There is of course a separate, but overlapping question of which claims we should be including, and how much weighting we should be giving to each, but I don't think that's the issue at stake in this particular discussion. Oolong (talk) 17:46, 1 December 2024 (UTC)

I think the last question you raise is the important one. I'm not overly worried that there could be major disagreements about what to include in a basic Wikipedia entry on autism. Right now, there is a major disbalance because over the years some topics have been moved to their own entries, with not even a summary being left in the main entry (eg pathophysiology & history). Other sections are overly long or specific (I would be surprised if there was opposition to eg trimming down the sections on use of digital media or various flags and symbols.)

When it comes to language, I believe that each topic should be presented using its inherent terminology. This ensures clarity and that potentially harmful words are embedded in an appropriate context. (If there are established alternative terms in the relevant literature/discourse, the least problematic one should be chosen, of course.) While this will not make everyone entirely happy, it would hopefully avoid perpetual arguing about language in favor of improving the information in the entry, and it would result in a Wikipedia entry that reflects the current understanding of autism across fields & perspectives.--TempusTacet (talk) 18:21, 1 December 2024 (UTC)

Brevity

Among other problems, this article is way too long and verbose. Without the references, I think it comes to more than 12,000 words. In line with Wikipedia:Summary style and Wikipedia:Content forks, we should be looking at leaving out chunks that have their own entries, perhaps including just a very short summary within the article body. We probably want to lose at least 3,000 words.

Articles being this long is a problem both for readability and maintainability - I suspect that the sheer size of the entry is a big part of the reason it's been allowed to get so out of date.

The lead has six paragraphs, and a couple of them are long enough that they should probably be split in two, with a total of about 600 words. Wikipedia:Manual of Style/Lead section states: "The leads in most featured articles contain about 250 to 400 words." In other words, we should almost certainly be looking at cutting out about a third to a half of the lead. I would suggest we follow Wikipedia:How to create and manage a good lead section and try to keep this section down to no more than four paragraphs. Oolong (talk) 17:35, 19 November 2024 (UTC)

I propose to remove the Causes section and replace it with something on these lines, following the link to the main Causes of autism entry:

Exactly what causes autism remains unknown. It appears to be primarily genetic. It is not caused by vaccines, nor by 'cold' parenting. Oolong (talk) 19:05, 28 November 2024 (UTC)

Personally, I don't see a reason so as to completely remove the causes section or condense it substantially unless it's definitively required. The complexity of ASD can necessitate a word count of this nature but I can see how some sections could be made less verbose. In other words, rather than focusing on reducing the word count, perhaps we should focus on making it less verbose so important details are not excluded.

Regarding causes, from what I can see the article reflects these points you make that are scientifically accurate. Meta-analytic data of twin studies more broadly shows that the rearing social, familial or shared environment is not a statistically significant contributor to symptoms (but rather genetics and neurobiological events). By mentioning that, I think it would cover far more of the unscientifically attributed causes without having to mention them all explicitly. Димитрий Улянов Иванов (talk) 21:08, 28 November 2024 (UTC)

I would welcome condensing the section of causes to the current state of knowledge, with less weight given to disproven or abandoned hypotheses, as well as yet unproven theories. In particular, I don't think the main autism entry has to describe why we have come to the conclusion that something is (not) a cause. Presentation of the research history & meta analyses backing the current understanding could be left to the causes of autism entry.--TempusTacet (talk) 23:11, 28 November 2024 (UTC)

Thanks! Yes - I just don't see the advantage of having more than a very short section on causes, when people can easily go to a separate entry on it; causes are of very little importance to the average reader, relative to many other things that this entry currently spends far too little time on or omits entirely. It's true that a large proportion of autism research money has been spent on (overwhelmingly inconclusive) studies hunting for causes, but this has never aligned with never aligned with community priorities for research. It's simply not very useful information for most people interested in learning about autism.

As Wikipedia:Summary style says, 'The original article should contain a section with a summary of the subtopic's article as well as a link to it' - no more than a summary. Otherwise we're dealing with two parts of the encyclopaedia that need to be maintained in parallel, and again, I think a big part of the reason this particular article is so badly out of date is because it's too big to maintain in its current form. Oolong (talk) 18:26, 29 November 2024 (UTC)

@Димитрий Улянов Иванов, the second paragraph of the lead section does not need to be in the lead. It is accurate, and should be noted further down (I think it, isn't it?) but I don't see any reason why it would need to be part of the concise summary of key points that opens the article. It certainly doesn't need a whole paragraph.

I am raising this here before deleting it, as a courtesy Oolong (talk) 16:23, 8 December 2024 (UTC)

Thanks for raising your concern, but please don't just delete it. The second paragraph is crucial because impairment, and developmental inappropriateness, are defining aspects of autism and thus warrant inclusion. The mere presence of symptoms/traits is not autism; they must be inconsistent with one's developmental level and socialcultural context, and especially be severe enough to lead to significant impairment in major life activities.

In essence, many people have elevated traits of autism and almost all of us occasionally experience its symptoms, so it would be highly inaccurate to exclude any of these; they are all equally important, and in combination, characterise autism. Just how we don't define ADHD as the mere presence of e.g. inattention, as this by itself would categorise everyone, we shouldn't do it for autism either.

I know you agree on the accuracy of this, but I hope this helps emphasise how these really aren't much more minor, unrelated features that can be delegated entirely to sections below. The first paragraph basically refers to the symptomatic characteristics of autism, which is understandable as it's trying to be concise, hence the second paragraph.

Alternatively, we could include this within the first paragraph and make it more concise, as other articles do, but risk poor readability.

For a comparison, if we took the article on ADHD, the first sentence defines it as follows:

"a neurodevelopmental disorder characterized by executive dysfunction occasioning symptoms of inattention, hyperactivity, impulsivity and emotional dysregulation that are excessive and pervasive, impairing in multiple contexts, and developmentally-inappropriate"

Because its underlying nature (executive dysfunction) and overarching symptom dimensions (e.g., emotional dysregulation or inattention) can be described in one or word phrases, and still comprehensively be covered (so we are not missing out crucial aspects), there is room to mention its other defining aspects within the same sentence. However, l I'd expect we'd find complicity replicating this for this article given that ASD's symptom dimensions by themselves are already lengthy to describe even in a summatory manner.

To account for this, two sentences might be able to be used in the first paragraph as was done previously, and perhaps shortening the description for its symptom dimensions if possible. However, I don't see the issue with maintaining it in it's current state, where the paragraph thereafter mentions this. This was split originally to help with readability.

With all of this said, I do support your removal on the 4th Dec of a paragraph that was just listing specific symptoms and reiterating some from the first paragraph. It wasn't adding much distinctively important detail and so appeared inappropriate for the lede.Димитрий Улянов Иванов (talk) 17:16, 8 December 2024 (UTC)

Okay, thanks for that. It definitely doesn't warrant that level of detail in the lead section - mentioning the two main diagnostic manuals by name, etc.

Two sentences might be just about justified. Do you want to see if you can get it down to that, or shall I just go for it? Oolong (talk) 16:52, 9 December 2024 (UTC)

For reference, the lead as a whole is currently 50% longer than the upper limit suggested in MOS:LEADLENGTH. Oolong (talk) 16:57, 9 December 2024 (UTC)

I can't read that policy at this precise moment, apologies for my ignorance, but I'd just like to note that I often see such policies suggesting articles should generally follow a specified length but if the topics are complicated and cannot be summarised so easily, exceptions are permissible. In any case, we should focus on omitting unnecessary detail. We should just keep that in mind, if it's true, considering the complexity of ASD so we aren't getting rid of necessary info. Димитрий Улянов Иванов (talk) 20:36, 10 December 2024 (UTC)

No worries, two sentences should be a suitable change if it can be reflected properly this way. I'm quite constrained by time at the moment but I will try to review this as soon as I can and hopefully suggest some changes here, please feel free to suggest some too in the meantime if you wish! Димитрий Улянов Иванов (talk) 20:29, 10 December 2024 (UTC)

I've removed one paragraph from the lead that was almost entirely redundant. It's still far too long, and not very well balanced - it's not really the place to get into the nitty-gritty of different arguments. Overall it includes way more detail than a lead section should. Oolong (talk) 14:53, 4 December 2024 (UTC)

References

Section on Autistic Burnout

It seems unusual that an entire subsection has been designated for just one sentence on the topic. While it does link to the accompanying wikipedia article for further details, it would probably be better that such a short description was placed under a more overarching area (like associated features) or was expanded. Димитрий Улянов Иванов (talk) 14:00, 26 November 2024 (UTC)

Should we use {{Excerpt}}? or make it bigger? Anthony2106 (talk) 10:08, 27 November 2024 (UTC)

Rather than covering autistic burnout in a separate section, I suggest to create a section on (mental) well-being that could cover topics that are discussed in more detail in the Autism-friendly entry. This would also help to address the concern that the current article is overly focused on ASD as a medical condition.--TempusTacet (talk) 15:51, 27 November 2024 (UTC)

Yes, this is probably a better approach. It's good that it has its own entry; it obviously warrants more than a sentence in this one; it's one of several key concepts for autistic wellbeing that absolutely need to be covered in more depth here. Shutdowns and catatonia are (arguably) closely related; the former is closely related to meltdowns, the latter to autistic inertia.

The absence of anything on these topics is bizarre, as is the failure to cover anything about the sensory, social or task overload that often triggers them. Oolong (talk) 18:49, 28 November 2024 (UTC)

Personally, I'd rather it be expanded if possible as I'm sure there is more to be mentioned, which is better than maintaining it at it's current length. If that's problematic, it can certainly be moved to a more overarching section. Димитрий Улянов Иванов (talk) 01:04, 28 November 2024 (UTC)

The problem with "autistic burnout" is that it is a colloquial term. It describes an experience shared by a group of autistic people but neither is it known how large this group is (eg if it's a majority) nor do we know if it is an autism-specific condition or eg an umbrella term for exhaustion, depression, and classic occupational burnout. There are some early studies investigating the latter question (ie trying to view autistic burnout through a medical lens) but the findings are still inconclusive & contradictory.

Since the experience referred to as "autistic burnout" undoubtedly exists & as Oolong points out there is much that can be said about sensory and social experiences of autistic people, I believe that describing it in this context is the most appropriate way to include it in the Wikipedia entry.--TempusTacet (talk) 23:04, 28 November 2024 (UTC)

As a note, autistic burnout is well discussed in scholarly literature. Significa liberdade (she/her) (talk) 03:05, 30 November 2024 (UTC)

It is getting some attention in recent years, but not (yet) as a medical condition. There are a handful of studies that analyze self-reports with the aim to understand if what is colloquially called "autistic burnout" describes a well-defined state, why it occurs, and what people find helpful in recovery.

This is valid and important research but it does not belong in a section on co-occurring conditions (eg like autistic catatonia). Even if it turns out that through a psychiatric lens autistic burnout is an umbrella term for exhaustion, depression, and occupational burnout, this does not make it any less relevant or real.--TempusTacet (talk) 08:50, 30 November 2024 (UTC)

Semi-protected edit request on 29 November 2024

The language in the 'Early life' segment is too confident as it states inconclusive information. Consider revised expressions such as this one: "Some studies have explored associations between air pollution and heavy metals and autism, but findings remain inconsistent and inconclusive. While such complications may interact with genetic predispositions, their role in autism is not well understood." Tuutelis (talk) 02:09, 29 November 2024 (UTC)

@Tuutelis I don't know what text you want to be changed you can tell me or you could fix ten spelling mistakes and then edit the page yourself. You could also write subtitles for song samples on song pages. Anthony2106 (talk) 04:44/8, 29 November 2024 (UTC)

 Not done: it's not clear what changes you want to be made. Please mention the specific changes in a "change X to Y" format and provide a reliable source if appropriate. Bowler the Carmine | talk 06:12, 11 December 2024 (UTC)

Extent of Scientific Consensus on Terminology & Reconciling Perspectives

@TempusTacet, @Oolong

Hi everyone - I think it’s a good idea we divert the discussion here so it’s more organised and to invite participation from others. The topic of discussion is also much broader than referral to symptoms.

There are still two main issues that, after seeing the most recent replies, I don’t think have been adequately addressed.

First, I am still very confused as to why there is still thought to be an obfuscation with science and medicine. Most (perhaps all) of the citations I provided are not exclusive to the context of medicine, they range from the type of source (guidelines, consensus statements, diagnostic criteria, systematic reviews etc) and cover a variety of contexts, not merely medicine (symptom presentations and impairments, therapies and accommodations, epidemiology, implications in society, etc). I haven’t evidence overturning such a scientific consensus.

Second, a compatibility of neurodiversity with ASD diagnosis would be an accurate point for the article than continuing to present both perspectives in a conflicting way.

One can acknowledge that ASD represents the extreme end of a typical distribution of a psychological trait while at the same time acknowledging that those at the extreme end of this trait experience harm and impairment. We should expect this from a dimensional disorder on which we are imposing a categorisation or dichotomy.

In short, neurodiversity and a disorder diagnosis are not incompatible conceptualisations of the underlying autism spectrum.

What is inaccurate, really, is the idea of one or the other being fundamentally wrong - that is what contradicts the scientific consensus, from my understanding.

By the way, just for a more minor note, please keep in mind the context of citing the NHS website. Signs and symptoms can be interchangeable, while most sources use symptoms, some use a combination of both. The UK NICE (of which the NHS is categorised under) does attest to the validity of ASD as a disorder characterised by symptoms and varying severity etc in their guidelines, they just use ‘signs’ at times as well. The Wiki article is consistent with this on the title of the section. The NHS page for the public - which was referred to - is highly superficial in its descriptions and is not reputable relative to the peer-reviewed NICE guidelines.

To give one example of many inconsistencies, that NHS website says ADD is a separate disorder on the ADHD page - even though ADD hasn’t been a diagnosis for decades, since the incorporation of subtypes and now even those have been replaced with presentations of the same disorder. This is corrected on NICE guideline pages, which undergo substantial peer review compared with that page.

Димитрий Улянов Иванов (talk) 22:49, 1 December 2024 (UTC)

Димитрий, I don't think it is helpful to open yet another discussion section. As I've tried to explain in multiple different ways, there is no dissent over the scientific consensus. So far, nobody has come forward to claim that anything that is in the sources you researched & summarized is wrong. Nobody has advocated for introducing information into the Wikipedia entry on autism that would contradict the sources. (Of course, one could include novel findings or hypotheses that have not yet reached consensus level when presented appropriately, but I don't think that's revelant right now.)

Most importantly, nobody has advocated for "the idea of one or the other being fundamentally wrong". You say "neurodiversity and a disorder diagnosis are not incompatible conceptualisations of the underlying autism spectrum" and I would not only agree, but broaden this statement. While you have repeatedly said that you agree that there is more to science than medicine, you continue to almost exclusively list sources that look at the world based on a medical model. This is a very relevant and productive perspective on autism, but a restricted one (as all perspectives are). Neuroscientific, genetic, therapeutic, educational, sociological, you-name-it perspectives are scientific & relevant as well. We cannot exclude those, even if they use a different terminology or use the same words with different meanings.

I still think that you conflate discussions about what language one should use to represent the scientific consensus with discussion about the validity of the scientific consensus. One can use different words to describe the very same thing. Above, in a discussion with Oolong, I've already shared this recent talk by Francesca Happé, whose work you'll likely be familiar with. Since she was a member of the DSM-5 workgroup on neurodevelopmental disorders, I believe it's fair to charaterise her as a mainstream autism researcher. In the talk (and elsewhere), she manages to present highly accurate information using language that includes medical terminology where necessary but contextualises and complements it so that it remains accurate but does not sound overly negative/harmful to the untrained ear. I'm sure that the audience of that talk walks away with a much better understanding of autism than if she had strictly used the language of the DSM that she helped author.

My suggestion is that we start working on improving the entry, as I'm sure that we'll have little disagreement about what information to include.--TempusTacet (talk) 11:10, 2 December 2024 (UTC)

Very cogent sentiments, I agree wholeheartedly. Urselius (talk) 17:28, 2 December 2024 (UTC)

Thanks again for your contributions!

There's a point here that I sort of disagree with, and I think it's worth setting out carefully why that is: there is a sense in which 'neurodiversity' and 'disorder' entail incompatible conceptualisations of autism. The most basic insight of the neurodiversity paradigm is that things which have been described in pathologising terms may not really be pathological: not diseases, not disorders.

It's a genuine philosophical difference in how we look at human variation, accompanied by a critique of the use of these and various other pathologising terms, as well as things like priorities for research and practice.

As the NAS puts it, in its guidance on how to talk and write about autism, "most autistic people (and many others) do not consider autism to be a disorder." (see also Bagatell 2007 and Kapp et al 2013 on this particular point).

On the other hand, according to the criteria set up by professional bodies like the APA and NICE, obviously autism is defined as a disorder! The DSM and ICD effectively ensure this by fiat - albeit without much regard for what words like disorder actually mean in general use, and often without close examination of terms like 'symptom'. The diagnostic manuals are obviously very important, and very few advocates of neurodiversity are opposed to 'diagnosis' wholesale - even if we contend that's not really the right word for it!

It is inevitable that there will be some medical language in an entry of this sort - as there is (cautiously) in the Cleveland Clinic page I linked to about autism, for example. However, in many cases there are other terms in use which are at least as accurate, and less likely to make people feel bad! 'Risk' is just 'likelihood' with a value judgement attached, for example.

In a few cases, like 'symptom', there is a strong case that the most common term in medical circles is not only unduly negative, but actively misleading. A symptom is typically seen as resulting directly from a condition (usually a disease), and

Thanks for the link to the Happe lecture - I saw her deliver an earlier version of this a few years ago at the Scottish Autism Research Group conference, so I won't watch this all the way through, but yes, I agree that for the most part she hits a good balance in the way she talks. For her to come this close to being on board with neurodiversity, she has come a long way across her life career.

I have noticed over the years that a lot of opposition to neurodiversity comes from people who seem to think it implies things that it does not, and which very few people who advocate it would ever suggest! Perhaps we can make progress here if we make sure to focus on reconciling any tensions between people's actual positions, and reflecting what they mean in the text of the article. Oolong (talk) 17:35, 2 December 2024 (UTC)

Oh, a quick example of that kind of mistaken opposition to the concept of neurodiversity: I still occasionally run into people who think accepting neurodiversity implies that autism isn't a disability - even though the neurodiversity movement largely arose out of the disability rights movement, and neurodivergent people are disproportionately likely both to be disabled for other reasons, and to have more disabled family members.

It has never been clear to me what is lost when we describe autism as a disability but not a disorder, but obviously some people are attached to the latter term! Oolong (talk) 17:43, 2 December 2024 (UTC)

I do agree that there is a "genuine philosophical difference" between a medical model and a neurodiversity perspective. Both are limited & perhaps flawed in their own ways, and are incompatible. But I think it's not necessary to reconcile them. Both can and do exist, and a Wikipedia entry can describe them.

As you say, "in many cases there are other terms in use which are at least as accurate, and less likely to make people feel bad", ie language promoted by the neurodiversity movement has been picked up across various fields. These days, using words like "neurodivergent" or "differences"/"difficulties" instead of "deficits" does not necessarily imply strong alignment with the neurodiversity perspective. This language is used in the context of a medical model of autism as well, a lot of people that would not subscribe to a neurodiversity model have adopted it.

I'll stop quoting you & repeating myself here. I hope that we have disentangled the positions & can focus on trying to improve the article.--TempusTacet (talk) 18:00, 2 December 2024 (UTC)

Yes, this is absolutely correct, and I appreciate you expressing it so clearly. Oolong (talk) 20:42, 3 December 2024 (UTC)

"Neurodivergence" and "neurodiversity" are all-encompassing political terms meant to group together people with otherwise-unrelated mental disorders into one group. It is not the case that these are used in the medical context, nor are scientifically validated terms, for characterising NDDs.

"Neurodiversity" is a property of the human species as a whole. It includes every single person that's ever been born. "Neurodivergent" is basically a synonym for people with mental disorders, but it's poorly defined. There's a lot of disagreement about who falls under the "neurodivergent" banner and which neurological conditions are applicable. There's also the issue that it's part of this us-vs-them mentality that's contributing to the self-imposed isolation and alienation of people with mental disorders from the rest of society. At times it's being used to build walls and divide them, not build understanding and bridges.

The term "neurotypical" is only accurate when localised to the dimension of a specific trait, such as executive functioning. Neurotypicality does not occur in a general sense despite it being used that way (we all have thousands of psychological traits, each with unique variations, deficits, gifts, aptitudes etc).

Even Judy Singer, who coined the term 'neurodiversity', has talked here and here about the use of neurodiversity by neurodiversity advocates to cause division.

"Take Home Lesson: ND is not a classificatory term dividing us from them. We are all Neurodiverse. We live on a Neurodiverse planet in which amoral nature generates endless genetic diversity, while we humans have evolved the capacity to make judgments about nature’s bounty. What Neurodiversity brings us is a challenge to find a place for everyone and to distribute the bounty fairly."

Ultimately, however, the concept of neurodiversity (rather than the way it's used politically to classify people) is not incompatible at all with the status of NDDs as valid disorders, which again is objectively far from limited to a medical context. One the degree of diversity reaches an extreme degree so as to cause functional impairment is when it becomes a disorder. Indeed this fact is reliant on there being an underlying spectrum. For further details, see Barkley et al. (2002), Nelson, 2021 and Shields et al. (2020). Димитрий Улянов Иванов (talk) 00:52, 4 December 2024 (UTC)

Why are you explaining this to us?--TempusTacet (talk) 01:11, 4 December 2024 (UTC)

Because you said things like “This language is used in the context of a medical model of autism”, to which I replied to explaining that this isn’t the case.

And the other commenter said “ in many cases there are other terms in use which are at least as accurate, and less likely to make people feel bad”, the first part of which is objectively wrong and the latter unsubstantiated and I disagree with - so I offered my perspective and cited references.

I am trying to add to the discussion, and I don’t get your reply and the repeated need to have to explain the basis of my comments. Димитрий Улянов Иванов (talk) 01:27, 4 December 2024 (UTC)

I really don't know how else to say this, so I'll be frank with you: Do you really think it adds to this discussion to give a Neurodiversity 101 mini-lecture? What lets you believe that this is necessary?--TempusTacet (talk) 01:45, 4 December 2024 (UTC)

I think we've nearly belaboured this long enough, so I'll focus on main residual issues. In light of these, and the absence of a valid response, I am once again faced with the problem that the medical interpretation of the scientific evidence must be considered flawed and even inadmissible.

First, a cursory look at the talk page reveals that people have argued that inclusion of one or the other perspective is fundamentally wrong, through advocating to remove terms (e.g. disorder) from the article, to blend comorbidity with ASD severity, as well as opposing the validity of scientific consensus itself.

To cite 2 examples, on 8th October, a user initiated a section entitled "Remove "Disorder" and add Coocuring Conditions". On 2nd Nov, Oolong wrote, as a reply to my comment defending the article's inclusion of the term, "It is incorrect to suggest that there is a general scientific consensus that autism is a disorder. The neurodiversity perspective is taken seriously by a large and growing number of researchers, and contradicts the assumption that differences like autism should be seen as disorders." - who has since adhered to this point repeatedly, even after my extensive references to the contrary, based on incorrectly equating them overall to people's mere use of terms.

I would therefore like to repeat that it remains a significant issue requiring acknowledgement.

This leads into my main point I would like to reiterate about the - as I think - inappropriate generalisation of medicine. Since we agree on the validity of a consensus, our contention concerns its unanimity across fields. I have already elaborated that the vast majority of the peer-reviewed scientific references cited here pertain to and originate from a wide array of contexts within autism; including, as you write "Neuroscientific, genetic, therapeutic, educational, sociological". Unfortunately, it has been argued that the scientific consensus demonstrated is exclusive to the context of medicine. This is now the repetition of a wrong argument as indicated by criticism (e.g. 22:49 UCT, 1 December 2024). If you are unable to offer countering evidence, I would ask you to abstain from this claim – or at least handle such criticism more respectfully by not ignoring it.

Because of the interchangeability of terms and establishing their appropriateness in different contexts, I agree with your point "one can use different words to describe the very same thing". Validating terminology scientifically is however of utmost importance according to Wikipedia guidelines so they are not minimised or completely removed from the article (as people advocate). This does not contradict the simultaneous use of potentially conflicting terms when accountingj for their context, which ultimately is what we are aiming to focus our deliberations and implement edits on.

Let us conclude that there has been a failure to address the broader context and nuances required for accurately resolving these issues. I think that the medical interpretation of the scientific evidence should not be admissible and lacks careful consideration. Димитрий Улянов Иванов (talk) 20:55, 2 December 2024 (UTC)

You say that you feel that the "the broader context and nuances required for accurately resolving these issues" have not been addressed, however, there have been several attempts to explain to you that you appear to be arguing against a position nobody involved in the discussions holds. I don't think that you do this intentionally, but the only way to resolve this is for you to understand what others are saying, rather than repeating the same arguments over and over again.

I'm not saying that you're wrong, and I'm certainly not ignoring what you're writing. But you seem to be misunderstanding my position & my goals, which makes it difficult to have a discussion. I'm not trying to "offer countering evidence", because there is nothing to be countered. You don't have to convince me of what your sources say about autism. I'm familiar with the major guidelines & the discourse within academic research and outside of it.--TempusTacet (talk) 23:48, 2 December 2024 (UTC)

What? I am directly responding to positions you hold.

You claimed in your comment I was replying to that “you continue to almost exclusively list sources that look at the world based on a medical model”, to which was the basis of my reply - that the sources are in fact hardly exclusively medical and that you have failed to substantiate your claim that they are.

Additionally, you claimed “nobody has come forward to claim that anything that is in the sources you researched & summarized is wrong. Nobody has advocated for introducing information into the Wikipedia entry on autism that would contradict the sources”, as well as “Most importantly, nobody has advocated for "the idea of one or the other being fundamentally wrong". To which I replied citing examples of how people have, in fact, advocated for removing the term ‘disorder’ from the article as well as opposing the validity of the sources I cited.

This is the complete antithesis of a strawman/refuting nonexsistent points. Respectively, your comment makes little sense to me. Димитрий Улянов Иванов (talk) 00:06, 3 December 2024 (UTC)

I do understand that my comment makes little sense to you, and I hope we can continue from there.

In the section Talk:Autism#Signs_and_symptoms_-->_Common_characteristics you cite the ICD-11, the DSM-5, NICE guidelines, the NIMH website, the ESCAP, the AWMF guidelines, the HAS guidelines, the CPS guidelines, and the World Federation of ADHD. All of these share the same medical/diagnostic/management perspective on autism. The only exception is perhaps Autism-Europe, which is not a public health entity but an advocacy organization, to whom you attribute the ESCAP practice guidance for autism. I don't see their relationship to that document, other than that the PDF you linked is hosted on their website.

To be clear: All the sources you've listed meet WP:MEDRS and reflect the scientific consensus on autism from the point of view of clinical medicine and public health bodies.

To say that people who advocate for alternatives to the term "disorder" oppose the validity of the sources is insincere. The ESCAP guidelines, in their abstract, say that autism is "a heterogeneous, neurodevelopmental condition that persists throughout life". The CPS standards of diagnostic assessment say "There are no diagnostic biomarkers for ASD. This condition is diagnosed clinically". Using the word "condition" rather than "disorder" (which are interchangeable here) hardly draws into question the validity & scientific soundness of these guidelines.

We can also look at the NICE guideline Autism spectrum disorder in under 19s: support and management you listed among your sources. On page 5, they define autism as follows:

The term autism describes qualitative differences and impairments in reciprocal social interaction and social communication, combined with restricted interests and rigid and repetitive behaviours, often with a lifelong impact. In addition to these features, autistic children and young people frequently experience a range of cognitive, learning, language, medical, emotional and behavioural problems, including: a need for routine; difficulty in understanding other people, including their intentions, feelings and perspectives; sleeping and eating disturbances; and mental health problems such as anxiety, depression, problems with attention, self-injurious behaviour and other challenging, sometimes aggressive behaviour. These features may substantially impact on the quality of life of the individual, and their family or carer, and lead to social vulnerability.

The clinical picture of autism is variable because of differences in the severity of autism itself, the presence of coexisting conditions and levels of cognitive ability, from profound intellectual disability in some people to average or above average intelligence quotient (IQ) in others.

This description reflects our current understanding of autism from a clinical/medical point of view that avoids terms that are perceived & criticised as overly negative or harmful. It's probably not quite in line with some of the more far-reaching recommendations that Oolong shared above but I think it's another good example of how to accurately describe the medical/clinical understanding of autism. When you study the guideline, you'll see that it does use the term "disorder" where it is required for precision (eg when talking about diagnoses), but it rarely uses the term "symptom" but prefers "behaviours" (which is more specific in many circumstances) and "features". (It was updated back in 2021 to use identity-first language & "features" instead of "symptoms", cf page 36.)

If you still find that I make little sense, I'd like to ask you to interrogate my position rather than dismissing it.--TempusTacet (talk) 15:58, 3 December 2024 (UTC)

I am not merely dismissing your permission. I appreciate that you are replying with an individual consideration of the references, so I'd to take the time to explain the references in detail.

International Consensus Statement (Faraone et al., 2021-2024)

The International Consensus Statement on ADHD was compiled by the World Federation, but is not representative of them (the one organisation). In addition to the 80 authors, it is endorsed by 403 experts and by a plethora of professional associations of people with lived experience of neurodevelopmental disorders (NDDs), of researchers in a variety of contexts. From 27 countries and 6 continents, the ICS clearly highlights the perceived needs and strength of feeling among millions of people with ADHD around the world (see Supplemental Figure 2).

While I'd rather focus on ASD specifically, the ICS raises crucial points on the establishment of NDDs. For instance, it is concluded that "ADHD meets standard criteria for validity of a mental disorder established by Robins and Guze (Faraone, 2005; 1970). The disorder is considered valid because...", there, they refute the idea that biometric tests are needed for establishing neurodevelopmental disorders. So the absence of such diagnostic biomarkers do not dispute the validity of the term, or somehow makes it inappropriate.

References on Autism

Your claim that "All of these share the same medical/diagnostic/management perspective on autism". This is highly inaccurate, and is again my main contention.

Here are many examples of how diverse the fields and contexts the references take perspectives on are. Only small number were based exclusively on diagnosis or medicine (which I'll omit below for emphasis).

ESCAP guideline covers:

"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"

Note that these guidelines are indeed done in collaboration with Autism Europe (AE), I just had a re-look at the citation and the first section after the abstract substantiates this.

The International Consensus Statement on ADHD covers:

Neuropsychology of ADHD, genetic linkage, history of the disorder, symptomology and impairments, brain imaging, aetiology, epidemiology, comorbidities, effects of societal stigma, economic burden, quality of life, education, substance use, crime and delinquency etc.

The Consensus Statement of autism conducted by the Indian Academy of Paediatrics invited the following range of experts:

Psychologists, Remedial Educators, Pediatricians, Developmental Pediatricians, Psychiatrists and Pediatric Neurologists

In order to cover:

Aetiology, educational management, disability certification, public health burden, diagnosis & screening, comorbidities, therapy, symptomology, associated impairments, prognosis

The following systematic reviews cited: Dietert et al. (2017), and Mojgan et al., (2017) were about the environmental risk factors for autism.

The systematic review by Belmonte et al., (2022) was about digital tools for early identification of autism.

The German National Guidelines: "The guideline group comprised 14 clinical and scientific expert associations from the German healthcare system, in addition to representatives of relatives and patients".

The NIHM guidelines are disseminating the topic ontologically, and are covering autism generally for lay people (not to be confused with the NIHM editorial cited).

Consensus guidelines on ASD by Howes et al. (2017) covered aetiology, neuroanatomy, comorbidity, and general research directions.

The NIHM article u/Oolong cited to oppose the term symptoms is based on the ethical/social use of terminology. They concluded that "Both autism and autism spectrum disorder (or ASD) are acceptable ways of referring to the disorder, depending on the audience and the context" and earlier on they state "ASD should never be referred to as a mental illness or a disease". This is at complete odds with u/Oolong's claim (made on a video he referred us to) that the Wikipedia article, by using the term disorder, implies autism is a disease.

The textbook by Volkmar, 2021 appears to have comprehensively covered the variety of fields and contexts of autism.

The review by Nelson, 2021 concluded "the fact that autism is a disorder does not entail that medicalization is the only course".

The review by Shields et al. (2020) was attempting to establish the validity of autism as a disorder in the context of individual rights, disability, and as matter of scientific fact generally.

In conclusion, the references I cited clearly cover numerous fields and are endorsed from a variety of contexts, far beyond medicine and diagnosis.

UK National Institute for Health & Care Excellence

It is a bit disheartening to see the NICE guidelines misrepresented as to their perspectives. It is not the case that they "avoid" the aforementioned terminology because of stigmatisation. In their guidelines, they state "For this guideline we will use the term 'autism' to include all autism spectrum disorders", and do establish and refer to it as such. This indicates the terms autism, and ASD (in full) are interchangeable, typically for simplicity. Additionally, they refer to varying severity levels, symptoms, impairments etc of autism across the guideline, thereby contradicting the opposition to these terms by some in this talk page.

Conclusion

No sufficient evidence has been given to suggest the use of these terms are stigmatising and therefore should be minimised in the article relative to ones they're interchangeable with.

Wikipedia guidelines state that terminology and article content must be based on the consensus of scientists/professionals in the field. As shown here, the consensus is unanimous and across contexts.

I am also puzzled by the fact that the level of evidence requested for inclusion of these terms is substantially higher than that of other neurodevelopmental disorders, such as ADHD.

For these reasons, I keep strongly endorsing the inclusion of these terms in this article in a way that holistically considers all life contexts.Димитрий Улянов Иванов (talk) 23:36, 3 December 2024 (UTC)

I'd like to refer you to my last comment. You are not engaging with what I've written, apparently misunderstand it, and are instead arguing against positions I do not advocate for and attempting to counter claims I've never made.

I strongly object to the idea that I'm misrepresenting the NICE guidelines, and I'm most certainly not questioning the validity of neurodevelopmental disorders (or the terminology used to describe them) in the sense that you imply. (Also, I'm well aware of how medical guidelines are created, their scope, and their role.)

If you want this discussion to lead anywhere, you'll have to work to understand what I'm saying, which I've now tried to explain to you in multiple different ways.--TempusTacet (talk) 00:28, 4 December 2024 (UTC)

First, I am addressing your claim that all of the references are exclusively taking a medical or diagnostic perspective. Quoting and replying to a claim is the antithesis of a strawman. As I've shown conclusively, the claim is wrong and thus should not be used to conclude that the relevance of these have not been established in other contexts.

Second, you were implicitly advocating for the minimisation of terms because of stigmatisation, the matter of which I was addressing in my reply - not that you were invalidating the terms themselves. I was concerning the degree of interchangeability, not validity. I did talk about the validity of the term disorder in the context of biometric data, but only as a response to you suggesting there is no biometric test in this context. Even that statement was really intended to just add to the discussion (because it has been argued in the public that the disorder is invalid in the absence of biometric tests), I never suggested you yourself adhered to the claim. Димитрий Улянов Иванов (talk) 00:38, 4 December 2024 (UTC)

Please respect that I have repeatedly and explicitly told you that what you claim I'm advocating for or claiming is incorrect. It is also not on you to decide whether you have "conclusively shown" something.

I have said that your sources "reflect the scientific consensus on autism from the point of view of clinical medicine and public health bodies". This is already evident from the nature of the sources, and you have further substantiated that claim in your responses.

You have repeatedly expressed that what I'm saying makes little sense to you or you find it puzzling. I've invited you to ask questions so that we can move past this confusion & get to a shared understanding.--TempusTacet (talk) 01:08, 4 December 2024 (UTC)

I shan’t respect it, because you have in fact claimed things - as I show with quotes, that I directly refute.

My reply literally showed, with quotes, how the references were not all coming from a medical context, yet you claimed they were. May I ask then, how are systematic reviews investigating the environmental risks of autism talking about medicine? How are the guidelines from ESCAP, that I showed cover a variety of other fields, just talking about autism from the context of medicine? How are the peer-reviewed reviews on the social and political implications of terminology coming at it from a medial perspective, when they explicitly conclude how it’s not a medicalisation?

You keep making claims, to which I refute, and then you pretend you didn’t make these claims so the points I made go unaddressed. So continuing this discussion is really quite pointless. Димитрий Улянов Иванов (talk) 01:22, 4 December 2024 (UTC)

You are not refuting claims that I made, because you don't understand what I'm saying. If you cannot respect that I, as the person who is making claims & stating positions, know what these claims & positions are, any attempt at having a productive discussion is futile.--TempusTacet (talk) 01:27, 4 December 2024 (UTC)

I am, and have proved it with quotes. If you retrospectively don’t hold the claim, that is a separate issue.

To make this a bit more simpler if you still are not understanding. You claimed that “all” of my sources are, and are only, medically or diagnostically based. To cite one example of my references that disproves this claim, is the systematic review I cited reviewing the environmental risk factors of autism. Because this has nothing to do with a medical context, it refutes your claim. That review is also relevant because it uses the same terminology but clearly in a different context.

Thanks again for the discussion, but I’ll end it here. Димитрий Улянов Иванов (talk) 01:35, 4 December 2024 (UTC)

At the very worst 'All of these share the same medical/diagnostic/management perspective on autism' is very slightly inaccurate. You've evidently selected a bunch of sources that broadly share your chosen perspective. Tempus and I have both pointed out multiple sources, and types of sources, that directly refute your conclusion. You assert that a statement on environmental 'risk factors' 'has nothing to do with a medical context' - no, this categorically does not contradict Tempus's point, and the fact you think it does shows that you have not in fact understood what was being communicated.

I hope you will indeed end this discussion here, reflect on what is actually under contention, and work harder to understand the positions that other people are taking here before you return.

You might find it helpful to read and fully digest Talk:Autism#Autism, Wikipedia and epistemic injustice if you are sincerely interested in working to improve this entry in future. Thank you. I can see that this has been a frustrating exchange for you, as it has for all of us, and I wish that could have been avoided. Oolong (talk) 14:35, 4 December 2024 (UTC)

I'd like to refer you to my previous comment, where I explicitly quoted the variety of fields and perspectives the references undertook, were endorsed by, and originated from, to debunk the claim that "All of these share the same medical/diagnostic/management perspective on autism". It is therefore not "slightly" inaccurate.

Unfortunately, these arguments have been omitted from your reply.

We also disagree on why I felt it's necessary to end the discussion. On the contrary, continuing to misrepresent and ignore extensive scientific evidence may be unhelpful. I also suggest you read Wikipedia's policies on the standards for inclusion of content in such articles. Димитрий Улянов Иванов (talk) 16:42, 5 December 2024 (UTC)

Again, I'm afraid you are just misunderstanding the assertion you are trying to argue with. I don't know what else to tell you. Oolong (talk) 18:20, 5 December 2024 (UTC)

Glaring Omissions

One of the reasons I've highlighted the excessive length of this article is because, despite being around a third longer than it probably should be, it completely misses out several things that are absolutely key for anyone to understand who is interested in learning about autistic people.

We can discuss how best to cover these, but for starters, I just wanted to make a quick list. Most of these are things which anyone who's conversed with multiple autistic people should very much expect to see covered.

• Autistic meltdowns (not sure how these aren't even mentioned in passing here when they have their own entry)
• Sensory overload
• Shutdowns
• Executive dysfunction and/or autistic inertia
• Hypermobility and EDS (co-occurring; actually, the whole section about co-occurring conditions is overdue a radical overhaul)

There are also topics like Autistic burnout and augmentative and alternative modes of communication (AAC) which clearly deserve more than a passing mention. I'm sure there are others I'm forgetting right now!

We might want to refer, here, to some other guides to autism written for the general public. We should certainly be looking outside of the scientific literature as such to help assess what autistic people, family members and relevant professionals see as important, and bear that in mind when prioritising things for inclusion: I would suggest that a decent place to start would be studies looking at community priorities for research, e.g. ; I also support the NIH's recommendation to "Check a variety of sources, including self-advocacy groups and organizations led by the communities you are writing about, to see what language they use and why."

Oolong (talk) 17:38, 4 December 2024 (UTC)

Throughout several Wikipedia policies and guidelines it has been established that non-scientific sources generally should not be used in shaping such content in articles.^(1),(2) Unfortunately, these aspects have been omitted from the post.

While it is valid to suggest expanding the article to include these additional symptoms, associated features, and impairments of ASD, such contributions must be grounded in reputable, secondary and peer-reviewed scientific sources to accurately reflect the status of the field.

I'd also like to note that we carefully review the evidence before linking executive dysfunction and other associations directly to ASD. As I recall, the disorder does not have primary nor pervasive effects on EF but may secondarily impact individual components of EF, such as verbal working memory, as a consequence of delays in the development of language. This would differ from other disorders, including ADHD, where executive dysfunction is primarily attributable, and which is also comorbid with ASD in a substantial minority of cases. In short, the nuance with these sort of relationships should be emphasised so we distinguish between core symptoms, primary and secondary associations, etc so it's not written in a possibly misleading way. Димитрий Улянов Иванов (talk) 17:22, 5 December 2024 (UTC)

I'm going to have to fundamentally disagree with your characterisation of the contents of Wikipedia:Reliable sources, and the status of the essay you keep citing as if it was a set of Wikipedia guidelines.

At the same time, I am all for working with peer-reviewed scientific sources to accurately reflect the status of the field here; there is just no reason they need to be our only sources, because we are describing human experiences here, not biomedical facts or recommendations. I discuss this in some depth in my recent essay. Either way, all of these topics have received significant scientific attention; just not nearly as much as they should, because autism science is systematically out of step with what autistic people, our families and people working with us all say we need.

On executive dysfunction in autism: 23,100 Google Scholar results and it isn't even mentioned in the Wikipedia entry! Genuinely baffling. I am of course with you that we should be writing about it with nuance, and not in a misleading way, Oolong (talk) 18:33, 5 December 2024 (UTC)

It is bizarre for someone to "disagree" with "my" characterisation" of Wikipedia policies. Adhering to guidelines is about facts not interpretation or agreement.

Wikipedia:Reliable Sources, which is an "an English Wikipedia content guideline... that editors should generally follow", concludes:

"Material such as an article, book, monograph, or research paper that has been vetted by the scholarly community is regarded as reliable, where the material has been published in reputable peer-reviewed sources"

And further on they state:

"Research that has not been peer-reviewed is akin to a blog, as anybody can post it online. Their use is generally discouraged"

And that:

"Many Wikipedia articles rely on scholarly material. When available, academic and peer-reviewed publications, scholarly monographs, and textbooks are usually the most reliable sources"

Wikipedia:Scientific consensus concludes:

"It is important to note that in forming its consensus it is the members of a particular scientific discipline who determine what is scientific and what is questionable science or pseudoscience. Public opinion or promoters of what is considered pseudoscience by the scientific consensus hold no sway in that determination. (See Wikipedia policy and guidelines regarding Undue weight, extraordinary claims sourcing, verifiability, reliability, and dealing with fringe theories.)"

As one can see above, Wikipedia:ScientificConsensus in fact substantiates the conclusion according to policies and guidelines.

Considering that you have shown to repeatedly misrepresent or ignore citations people cite you and use false claims of strawmen as a deflection, trying to engage constructively is futile. I've the cited the above references and quotes so other readers can be aware. Димитрий Улянов Иванов (talk) 19:11, 5 December 2024 (UTC)

You're implying that I'm somehow going against the guidelines, apparently without any basis at all?

As you are presumably aware, Wikipedia:Reliable sources discusses a wide range of non-scientific sources.

I have ignored citations that are irrelevant to the point of hand. I haven't misrepresented anything. This is an egregiously false accusation. Oolong (talk) 19:18, 5 December 2024 (UTC)

You claimed that "We should certainly be looking outside of the scientific literature" and then listed sources, such as self-advocacy books to refer to, in the context of rather than scientific literature. So indeed, it violates the above guidelines which state reliance should occur primarily on reputable, peer-reviewed sources and that non peer-reviewed sources hold no sway in the determination of article content, especially when the aforementioned sources exist (which they do for these issues).

This is why guidelines are ultimately in place; to prevent opinion pieces, editorialisation and unreliable sources from dominating articles and overturning the scientific consensus. Otherwise, there'd be substantial opportunities for misinformation to be included because of the existence of e.g. advocacy groups espousing them, including misinformation you presumably oppose. Димитрий Улянов Иванов (talk) 19:29, 5 December 2024 (UTC)

You are grossly misrepresenting Oolong's statement. Oolong wrote: "We should certainly be looking outside of the scientific literature as such to help assess what autistic people, family members and relevant professionals see as important, and bear that in mind when prioritising things for inclusion: I would suggest that a decent place to start would be studies looking at community priorities for research, ..."

In no way does this suggest that Oolong advocates that in a situation where we have peer-reviewed studies or consensus guidelines stating something and we can also find another source that contradicts it, we should dismiss the scientific sources.

You can also see that, with the exception of the BPS article and Autistica (hardly a fringe group), everything that follows are in fact peer-reviewed papers published in mainstream journals.--TempusTacet (talk) 20:24, 5 December 2024 (UTC)

My apologies, after re-reading that, I can how it can be interpreted in the way you are emphasising by adding italics to their words, so I see how I misrepresented the comment. However, this was not a gross misrepresentation. What people subjectively "see as important" could mean viewpoints contradicting science, and to "bear that in mind when prioritising things for inclusion" could thus be problematic.

Importantly, I also kept in mind the statement Oolong cited and supported that we:

"Check a variety of sources, including self-advocacy groups and organizations led by the communities you are writing about, to see what language they use and why [emphasis added]"

Therefore, note how their comment doesn't concern just assessing the prioritisation of content inclusion, but the specific types of language used as well. So according to their suggestion, they imply certain language used in the article (like terminology) can be influenced based on looking outside of the scientific literature to substantially less reputable sources they listed. This would indeed be problematic in the context of the guidelines and policies; and as I recall, they have expressed comparable viewpoints elsewhere. Димитрий Улянов Иванов (talk) 20:50, 5 December 2024 (UTC)

Thanks for carefully considering what I wrote! Regarding language, Oolong wrote: "I also support the NIH's recommendation to "Check a variety of sources, including self-advocacy groups and organizations led by the communities you are writing about, to see what language they use and why."" This is a verbatim quote from the linked NIH style guide, and it is a suggestion to study language use across sources to inform & perhaps evolve ones own language use. I can hardly take any issue with this, but would instead encourage everyone to do that from time to time & interrogate their own use of language in different communication settings.--TempusTacet (talk) 21:05, 5 December 2024 (UTC)

Thanks for this.

Interestingly, I see we have this a Wikipedia essay (which, again, does not constitute guidelines!) on disability style advice:

"Many autistic people, as well as those in the autism rights movement, do not view autism as a disease or disorder. Care should be taken when editing WP:BLPs, or pages related to the autism rights movement, to avoid describing autism through pathological terms like risk factors, symptoms, and treatment. Care should also be taken on BLPs to refer to the subject by using the language the subject prefers and the language the subject personally uses to self-identify ("autistic man", "woman diagnosed with Asperger syndrome", etc.)."

More significantly, the Wikipedia Manual of Style says "editors should seek to write articles accessible to the greatest possible number of readers. Minimize the use of jargon, and adequately explain its meaning when it is used."

Making articles accessible to the greatest possible number of readers obviously requires some consideration of views of non-scientists! Here is an excellent NHS reference on accessible language that is very relevant to this context. Oolong (talk) 22:10, 5 December 2024 (UTC)

There are also WP:WFTWA and WP:SUFFER in MOS:MED, which broadly say the same thing but specifically for medical topics. (Apologies if you had already linked this somewhere else.)--TempusTacet (talk) 18:21, 6 December 2024 (UTC)

Thanks, I'd seen some of this but there are some quality nuggets in there that I'd missed.

"Choose appropriate words when describing medical conditions and their effects on people. Words like disease, disorder, or affliction are not always appropriate."

...how interesting.

The Manual of Style also directs editors to style guides from non-scientific sources like the National Center on Disability and Journalism and the University of Kansas's Research & Training Center on Independent Living for more information. Well, well! Who'd've thought? Oolong (talk) 19:46, 6 December 2024 (UTC)

It really was a gross misrepresentation, I'm afraid. My words were not particularly ambiguous at all: you simply read something into them that I had never suggested, and responded - aggressively - to the meaning you imputed.

My inclination would be to hide this entire digression in a collapsible section, to make it (much) easier to discuss what is actually being proposed, as per the 'collapse' section here, but the guidelines say that this should be done by an uninvolved editor.

Any thoughts?

Either way, I would appreciate it if we could get on with discussing how to include key aspects of autistic experience that are currently omitted entirely. Some of them obviously fit into sections that already exist; others, less so... Oolong (talk) 20:28, 6 December 2024 (UTC)

"Throughout several Wikipedia policies and guidelines it has been established that non-scientific sources generally should not be used in shaping such content in articles.^(1),(2) Unfortunately, these aspects have been omitted from the post."

Wikipedia clearly has a use for non-academic sources, Wikipedia:Reliable_sources/Perennial_sources lists the Associated Press and Digital Trends as reliable and they are not academic sources (at most, greyfield literature).

Perhaps you are trying to argue that this article in particular meets some higher standard? If so, what is the policy that you are referring to here? Are you making the argument that the categories listed in Wikipedia:Biomedical_information should apply or not apply? Patrickpowns (talk) 19:43, 5 December 2024 (UTC)

There seems to be a slight but important misunderstanding here. Non-peer-reviewed sources should not replace/overturn reputable, peer-reviewed sources when they are available, particularly with the implicated topics. If pertinent scientific sources are not available, then non-peer-reviewed sources may be acceptable. From my understanding, the main exception to this concerns matters that are highly subjective or societal in nature (e.g., public controversies), where it's opinionated rather than fact based.

In short, some non-scientific sources may be reputable per se but are less reputable in relation. This is why the person I was replying to was wrong to state: "We should certainly be looking outside of the scientific literature" for these highly scientifically implicated topics.

For further details:

Wikipedia:Scientific consensus concludes:

"It is important to note that in forming its consensus it is the members of a particular scientific discipline who determine what is scientific and what is questionable science or pseudoscience. Public opinion or promoters of what is considered pseudoscience by the scientific consensus hold no sway in that determination. (See Wikipedia policy and guidelines regarding Undue weight, extraordinary claims sourcing, verifiability, reliability, and dealing with fringe theories.)"

Wikipedia:Reliable Sources, which is an "an English Wikipedia content guideline... that editors should generally follow", concludes:

"Material such as an article, book, monograph, or research paper that has been vetted by the scholarly community is regarded as reliable, where the material has been published in reputable peer-reviewed sources"

Further on, they state:

"Research that has not been peer-reviewed is akin to a blog, as anybody can post it online. Their use is generally discouraged"

And that:

"Many Wikipedia articles rely on scholarly material. When available, academic and peer-reviewed publications, scholarly monographs, and textbooks are usually the most reliable sources"

Димитрий Улянов Иванов (talk) 20:06, 5 December 2024 (UTC)

I think you are once again starting to argue against a point that has not been made. I'm sure that everyone here agrees that "Non-peer-reviewed sources should not replace/overturn reputable, peer-reviewed sources when they are available, particularly with the implicated topics. If pertinent scientific sources are not available, then non-peer-reviewed sources may be acceptable." I don't see that anyone has proposed to not follow this general guideline.--TempusTacet (talk) 20:12, 5 December 2024 (UTC)

Tempus, I literally have cited, twice in separate comments, throughout this discussion, how the individual I was replying to has stated:

"We should certainly be looking outside of the scientific literature", who then went on to list opinion and advocacy based non-scientific sources, in the context of highly scientifically implicated topics. They then also stated "and bear that in mind when prioritising things for inclusion".

My reply is therefore the antithesis of a strawman.

On the contrary, I find your replies in this talk page increasingly concerning because you have shown to repeatedly use false accusation of strawmen as a deflection. This is not an isolated incident by any means. Димитрий Улянов Иванов (talk) 20:22, 5 December 2024 (UTC)

I kindly ask you to stop implying that I'm not sincere or am trying to manipulate the discussion. I will quote myself here, taking what I just said above: You are grossly misrepresenting Oolong's statement. Oolong wrote: "We should certainly be looking outside of the scientific literature as such to help assess what autistic people, family members and relevant professionals see as important, and bear that in mind when prioritising things for inclusion: I would suggest that a decent place to start would be studies looking at community priorities for research, ..."

In no way does this suggest that Oolong proposes that in a situation where we have peer-reviewed studies or consensus guidelines stating something and we can also find another source that contradicts it, we should dismiss the scientific sources.

You can also see that, with the exception of the BPS article and Autistica (hardly a fringe group), everything that follows are in fact peer-reviewed papers published in mainstream journals.--TempusTacet (talk) 20:27, 5 December 2024 (UTC)

Please see my reply: Talk:Autism#c-Димитрий Улянов Иванов-20241205205000-TempusTacet-20241205202400

You have, however, falsely and persistently accused people of strawmen fallacies elsewhere in the article. For example: Talk:Autism#c-Димитрий Улянов Иванов-20241203000600-TempusTacet-20241202234800. Димитрий Улянов Иванов (talk) 20:56, 5 December 2024 (UTC)

Please do not start this discussion again. I will not engage with you further regarding that topic as long as you insist that you know what I'm arguing for or not, but I don't.--TempusTacet (talk) 21:01, 5 December 2024 (UTC)

This is a good summary of the discussion. I agree with Wikipedia:Scientific_consensus's essay interpretation of Wikipedia policies, and I don't think it's in conflict with Oolong's original suggestion of, say, highlighting comorbidities of autism and EDS (a biomedical claim which can be supported with scientific-only sources). Nor does that essay conflict with, say, Wikipedia:Biomedical_information categorizing "Social stigma against a condition or treatment, information about disease awareness campaigns or advocacy groups, public perception, public funding for research or treatment, etc" as non-biomedical information and thus allowing non-scientific sources.

In fact, I would argue there is agreement between scientific sources and non-scientific sources here! Of course, there is not universal and unanimous agreement (which should be called out in future edits), but for example (I'm quoting Botha 2019 here):

"Lastly, there is little theoretical grounding for what is high-functioning versus low-functioning. For example, it is acknowledged that, as a field (Psychology), we have little idea as to what autism is, or what causes it (Evans, 2013), there are still many theories of autism which gain currency in different settings with different people, meaning it is culturally bound (Matson et al., 2017; Perepa, 2014)"

So using cultural-level sources would provide a more accurate depiction of what theories of autism gain currency in different settings, and therefore should be discussed. Patrickpowns (talk) 20:27, 5 December 2024 (UTC)

Thank you, I agree with that position.--TempusTacet (talk) 20:29, 5 December 2024 (UTC)

We should for sure consider cultural-level sources in societal contexts or other appropriate ones; I assume this is what you mean with "what theories of autism gain currency in different settings", basically theories that are gaining traction/popularity etc with the word "currency" there. I would, however, oppose edits based on such sources for establishing factual content like the existence of a symptom or associated feature. Apologies for the confusion and thanks for checking on this issue. Димитрий Улянов Иванов (talk) 21:05, 5 December 2024 (UTC)

I agree that "sources for establishing factual content like the existence of a symptom or associated feature" should at least be peer-reviewed & preferably reflect a broad consensus (in line with WP:MEDRS).--TempusTacet (talk) 21:09, 5 December 2024 (UTC)

Thank you for acknowledging that. I have compared this with how Oolong changed "deficits" to "difficulties" in the lede earlier, despite the symptom dimension being defined as a deficit in the ICD-11 and DSM-5, among many other peer-reviewed sources. This is because the underlying psychological ability is itself deficient, and not a difficulty. They did not substantiate this edit, and I suspect they made the change to appeal to public opinion, as they have suggested elsewhere and alluded to in the post here. It is a fact that it's deficient, so such an alteration was problematic.

I believe this is why I inadvertently misrepresented their comment, as I had their edit in mind while writing. Димитрий Улянов Иванов (talk) 21:22, 5 December 2024 (UTC)

Thank you for carefully reading what I wrote & engaging with my comments in this discussion. I suggest that we'll leave revisiting the language discussion for another day, and instead focus on what I believe was Oolong's original intention when opening this section, which is to discuss which topics are missing from the current entry & if/how they should be included.--TempusTacet (talk) 21:32, 5 December 2024 (UTC)

No problem, these sort of edits are certainly provocative of a range of opinions and can initiate quite a conversation online. Of course, only 1 of so many readers replies so they are not representative of all viewers but it’s good to get some feedback nonetheless. I will cease responding for now until time permits me but thank you for the opportunity to discuss these issues. Димитрий Улянов Иванов (talk) 21:48, 5 December 2024 (UTC)

I referred to the Double empathy problem when I made that edit: it was not unsubstantiated. Read that entry, check out the peer-reviewed literature on this.

The evidence of recent years means that any source that works on the basis that autistic people have deficient social interaction and communication outdated. The hypothesis has effectively been disproven by a series of demonstrations that autistic people communicate perfectly effectively with each other; and that neurotypicals lack empathy for autistic people at least as much as vice versa.

Regardless, an edit that you disagreed with is no excuse for coming in on a different topic with guns blazing, wrongly accusing me of misrepresentation.

I would like us to get on with the project of addressing major holes in this article.

If you want to argue about what the 'double empathy problem' results do and don't mean, I encourage you to take it up under another new heading. Oolong (talk) 21:44, 5 December 2024 (UTC)

Glad to hear there's some consensus on this :)

sounds like there will definitely be future discussion about where to draw the line between the factual existence of a symptom or associated feature vs., say, an emic or etic (autistic/allistic, in this case) perspective on "Society and culture" or "Medical ethics" (just some examples from WP:MEDRS).

Just to plan out my future edits, I'll try to

- stick to scientific sources for biomedical information

- prefer scientific sources but also sometimes use non-scientific sources (ideally both) for non-biomedical information

For example, I might cite a study's interview transcripts if it's pertinent to a non-biomedical claim, and maybe also a reliable non-scientific source.

Any other thoughts? Patrickpowns (talk) 21:26, 5 December 2024 (UTC)

I think that's a good summary. Thank you.--TempusTacet (talk) 21:37, 5 December 2024 (UTC)

Just this. Thank you! Oolong (talk) 21:46, 5 December 2024 (UTC)