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Autistic ppl+ have long emphasised need for more practical research (journals.sagepub.com/doi/full/10....) & have been concerned about ethical issues raised by genetics research when not done in collaboration w/ autistic community+ w/ appropriate safeguards (journals.sagepub.com/doi/abs/10.1...). 8/

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Deficit, difference, or both? Autism and neurodiversity - PubMed

Autistic people instinctively understand that autism is natural (pubmed.ncbi.nlm.nih.gov/22545843/). Only we have direct access to how autism is experienced, which may contribute to way autistic adults had highest scientifically based understanding of autism (www.frontiersin.org/journals/psy...). 7/

pubmed.ncbi.nlm.nih.gov

The neurodiversity movement challenges the medical model's interest in causation and cure, celebrating autism as an inseparable aspect of identity. Using an online survey, we examined the perceived op...

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Parental voices and controversies in autism

Some parents have falsely blamed vaccines (www.tandfonline.com/doi/abs/10.1...). Vaccines and proposed causes in the physical environment are in the news because the U.S. government and its advisors have been driven by ideology rather than settled science ((www.statnews.com/2026/08/28/v...). 6/

tandfonline.com

Parents of children with autism have played a prominent role in controversies surrounding this condition. Parental voices were critical in challenging the ‘refrigerator mother’ theory and more rece...

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Parents may not recognise natural differences in sensation, attention, & movement & later perceive a child as "regressing" into autism when they become overwhelmed w/ sensory overload. annualreviews.org/content/journals/10.1146/annurev-vision-093020-035217?crawler=true&mimetype=application/pdf 5/

annualreviews.org

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However, role of life & social experience well beyond caregivers influences the development of communication (journals.sagepub.com/doi/full/10....). A newborn who engages in high levels of eye contact if anything is more likely to later be diagnosed w/ autism (www.frontiersin.org/journals/int...) 4/

Sage Journals: Discover world-class research

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Medicine: Frosted Children

Autism's history involves false blaming of so-called "refrigerator mothers" for causing autism (time.com/archive/6600...), which increased stigma for families and broke them up (www.taylorfrancis.com/chapters/edi...). 3/

time.com

Psychiatrist Leo Kanner used to stand up for parents. He championed them against the experts, said that it was unfair to blame the mother or father every time something went wrong with the child....

While no gene always accounts for autism, this may partially reflect that autism's diagnostic criteria emphasise social communication, which by definition happens between people - and reflects broader dynamics. journals.sagepub.com/doi/full/10.... 2/

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Frontiers | Sensory–movement underpinnings of lifelong neurodivergence: getting a grip on autism

@autisticsociety.bsky.social's review that autism is genetic aligns with research that autism is a lifelong neurodivergence (www.frontiersin.org/journals/int...) - as the National Autistic Society said, people are born autistic and remain autistic for life. 1/

frontiersin.org

While the autism diagnosis emphasizes “deficits” in social communication, the article advances that sensory–movement differences underpin autism through a re...

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Steven Kapp @drstevenkapp.bsky.social · 15/09/2026

You’re welcome. See you tonight for induction?

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Steven Kapp @drstevenkapp.bsky.social · 15/09/2026

A few years ago it was more dignifying *and* more protective of rights (which go together). The retrenchment does increase distress and fears of belonging for getting needs met, and it is disrespectful.

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Cross-cultural variation in experiences of acceptance, camouflaging and mental health difficulties in autism: A registered report

The UK arguably has (had) the lowest known stigma toward autism journals.plos.org/plosone/arti..., yet critics seem to think stigma has dropped too far in a world that remains too often deadly. All the retrenchment in the media and policy risks making the world a deadlier place. 8/ end

journals.plos.org

Recent findings suggest that stigma and camouflaging contribute to mental health difficulties for autistic individuals, however, this evidence is largely based on UK samples. While studies have shown ...

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In Chinese connectivity study (2 above), those w/ high autistic traits were offered assessment for possible autism diagnosis, but they declined to stigma. Debates in West re: higher autism diagnoses partially that stigma is low enough that some (eg white) ppl may be safer to be diagnosed than not 7/

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Diagnostic debate threatens to curtail access to support for those who have masked needs can be deadly, esp again as those diagnosed early tend to have fewer autistic traits than autistics identified later & those seeking diagnosis tend to be most distressed: www.sciencedirect.com/science/arti... 6/

sciencedirect.com

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The Future of Neurodiversity

Unqualified "superpower" rhetoric is generally co-option by corporations the like, rather than the neurodiversity movement establishment (see @drrobertchapman.bsky.social's essay for @bostonreview.bsky.social: www.bostonreview.net/forum/the-fu...) 5/

bostonreview.net

The movement has made important progress, but focusing on rights and representation leaves too many behind.

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Autism and autistic traits in those who died by suicide in England - PubMed

Autistic people and people with high autistic traits are greatly overrepresented among those who died by suicide, and it is an academic question (for those people at least) whether those who were not diagnosed met strict criteria for an autism diagnosis: pubmed.ncbi.nlm.nih.gov/35166201/ 4/

pubmed.ncbi.nlm.nih.gov

Elevated autistic traits are significantly over-represented in those who die by suicide.

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Camouflaging, internalized stigma, and mental health in the general population

Other research shows that camouflaging and self-presentation in people with high ADHD traits but few autistic traits was related to better mental health, but camouflaging in people with high autistic traits was related to poor well-being, especially for women. pmc.ncbi.nlm.nih.gov/articles/PMC... 3/

pmc.ncbi.nlm.nih.gov

Camouflaging, the strategies that some autistic people use to hide their differences, has been hypothesized to trigger mental health ramifications. Camouflaging might reflect ubiquitous impression man...

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Rachel pointed to a study in which camouflaging was substantiated by neurological connectivity patterns linked to anxiety and depression only in those with autistic traits generally above a clinical threshold, not non-autistic people with few traits. pmc.ncbi.nlm.nih.gov/articles/PMC... 2/

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Autisme : faut-il redéfinir l’étendue du spectre ? Un débat médical, scientifique et sociétal

Rachel Moseley and I are quoted in France's @lemonde.fr. lnkd.in/e6KTVNjr I want to bring attention to how most people wear social masks & camouflage in context to an extent, but the effects are not the same for everyone: they are worse (deadlier) for autistic ppl. 1/ www.lemonde.fr/sciences/art...

lemonde.fr

Rattrapage ou surdiagnostic ? La prévalence du trouble du spectre de l’autisme (TSA) a bondi depuis les années 2000, un phénomène qui conduit certains spécialistes à plaider pour une révision de sa dé...

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Very true! I also think about Sheffer's book on Asperger and the Nazis in which she states that a survey in Saxony in the 1920s found most parents would kill their disabled child if they thought it would "ease their suffering" (or similar language). Then the fascist AfD just won the state on Sunday.

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Additional reflections from the researchers of the assisted dying study (not shown during the webinar): youtube.com/watch?si=vvGOAipQQ7-LbIsA&v=yvbtfuBbmac&feature=youtu.be 7/

Reflections on assisted dying & people with a learning disability

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How can we expect to allow ppl w/ intellectual disabilities to make decisions about whether to die when many have not been allowed to make little decisions in their daily life? Video of study results and reflections (30 mins): youtube.com/watch?si=OI_NFlV5AVnkOofl&v=CDROwZvteWg&feature=youtu.be 6/

Assisted dying & people with a learning disability

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People with intellectual disabilities did not want to "be a burden" and as one participant self-advocate in the assisted dying study said, they can be "massively influenced, and people pleasers". Only 2 out of 21 participants talked about control and self-determination. 5/

Assisted dying & people with a learning disability

Even among people who understood it (including after accessible explanations), many people with mild intellectual disabilities felt like it was in their "best interest" for someone else to decide - or they feared their decision would be overturned anyway. 4/

Assisted dying & people with a learning disability

I attended a webinar on assisted dying by The Kind Research Group, and there were many misunderstandings about it among people with intellectual disabilities, including internalized ableism. full webinar recording (45 mins): youtube.com/watch?si=8x8O1WAiKjWRvko_&v=6MaTUFlg1Ac&feature=youtu.be 3/

Assisted Dying & Learning Disability Webinar

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MPs urged not to take ‘extraordinary risk’ of forcing through assisted dying bill as vote looms

Parliament might make the extraordinary move of not allowing the House of Lords to review the assisted dying bill, after finding serious issues last year: www.theguardian.com/society/2026... Research by The KIND Research Group indicates risk of coercion for people with intellectual disabilities. 2/

theguardian.com

Labour MPs Gareth Snell and Meg Hillier say Lords must be allowed to fulfil duty in scrutinising bill on serious public issue

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disabilitynewsservice.com

UK Government admitting there would be "pressure" for people to die www.disabilitynewsservice.com/government-a..., Parliament will again vote on "assisted dying" today. It is not too late for UK residents to e-mail your MP to tell them to vote against the bill: actionnetwork.org/letters/oppo... 1/

Government admits disabled people may face ‘subtle pressure’ to choose an assisted death, if bill passes

A new government assessment has admitted that disabled people – and particularly older disabled people – could face subtle pressure to choose an assisted death, if a bill described as “unsafe” and …

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Example for measuring diversity among autistic ppl w/o official subtypes. We in AASPIRE recruited autistic adults w/ subcohorts from 2 healthcare systems, 2 disability service systems, & larger autistic community (via direct report w[/o] support or proxy support) journals.sagepub.com/doi/10.1177/...

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021

Reposted by Steven Kapp

Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

Chair of #IACC is now claiming that all the comments were processed using an LLM - basically just commenting on whether the comments support or oppose the plan. Here's why this is a problem!

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Reposted by Steven Kapp

Thinking Person's Guide to Autism @thinkingautism.com · 27/08/2026

Good morning! This is @samanticka.bsky.social , guest-posting today to update everyone about today's meeting of the federal Interagency Autism Coordinating Committee (IACC)! The views I'm posting are my own - and in my capacity as a former member of the committee. #IACC

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There are many other #IACC posts. Could you use #IACCAugust2026 or some such?

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Statement says "But public comments submitted to the IACC between August 15 to August 20 were not even distributed to Committee members until this afternoon. They were not considered for inclusion in the revised draft, nor are they available online...deadline for comment submission was August 20."

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All major autism organizations submitted comments *after* August 20? I thought the public statement is that comments even made during the public comment period were not delivered until yesterday.

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They received comments just yesterday despite the submission deadline of August 20 yet they do not claim to have read the comments, only to have analyzed them by AI. They claim fewer than 2% of comments are in opposition, which seems hard to believe.

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New paper: few autistic ppl & parents like "profound autism" or support levels, even w/ a more conservative recruitment strategy (SPARK data from medical model Simons Foundation): journals.sagepub.com/doi/10.1177/... Yet US autism policy is trying to force PA agenda w/o considering public comments.

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0124

Reposted by Steven Kapp

Richard Amm ♿ (Disability & Research) @richamm.bsky.social · 07/08/2026

England V Disability covers some of the attacks on disability rights in recent years. The most political and harrowing zine that we have made so far. Find it here for free : files.libcom.org/files/2026-0...

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Steven Kapp @drstevenkapp.bsky.social · 21/08/2026

The co-chair of the review into the UK disability benefits system is “very rushed” and there is not genuine collaboration or partnership with disabled people, admits the co-chair or the process, as the Government is committed to reduce benefits regardless. www.benefitsandwork.co.uk/news/timms-r...

benefitsandwork.co.uk

Timms review process seems rushed and not true co-production, says co-chair

Get the benefits you're entitled to: help with personal independence payment (PIP), universal credit (UC), employment and support allowance (ESA),disability living allowance (DLA). Claims, assessments...

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Steven Kapp @drstevenkapp.bsky.social · 21/08/2026

Ukrainian Jewish woman was 1st to describe autism as independent in 1925 & autism in girls in 1927, including that it’s as common as in boys but presents more subtly w/ often better motor skills that enable more camouflaging. Yet she is “triple-erased” from history: link.springer.com/article/10.1...

link.springer.com

A name absent from the curriculum: Grunya Sukhareva, triple erasure, and the unfinished history of autism - European Child & Adolescent Psychiatry

European Child & Adolescent Psychiatry -

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You need to be an INSAR member but could potentially (if you qualify and can afford to) pay to become a member just before applying. (I co-founded the ARC but am not currently on it, although I am on the Scientific Programming Committee) 2/

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W/ apologies to those in Australia etc., world's largest autism research conference is seeking new Autistic Researchers Committee members for 2026-2027. Application deadline is tonight/August 15 in your local time zone. Form is through this link/email for members: docs.google.com/.../1FAIpQLS... 1/

docs.google.com

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Deadly+ meaning that have sometimes deadly or other consequences, unfortunately potentially literally so in the case of Professor Arday, may he and his family finally find peace that is still being denied to them through more "debates" by those critical.

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