♾️ Community of Practice Kent and Medway Learning Disability and Autism Cross-Services | Cross-Sector | Led by Lived Experts
Session 4 Reducing Autistic Suicidality: How Do Our Systems and Services Need to Work Together? 📅 Wednesday 2nd September 2026 🕐 12:00pm to 2:00pm (2 hours) 💻 Online, on Microsoft Teams – join from anywhere 👥 Open to everyone. You do not need to have attended before.
If you are not already part of the Kent and Medway Learning Disability and Autism Cross-Services Community of Practice please sign up:
⚠️ Content note
This session will discuss suicide and suicidality. We are discussing this because understanding these experiences is essential to improving services. Nobody will be asked to share personal experiences. Content notes will be circulated with the agenda.
❓ What is this session about?
This topic was chosen by the Autistic lived experts in our leadership group, based on their own experiences of trying to access mental health support.
They told us: ❌ There is no clear pathway for an Autistic person in mental health crisis. Mainstream services say they do not deal with autism. Autism services are not set up for crisis. ❌ Crisis teams turn people away for not being severe enough – punishing people for coping. ❌ Autistic people are being misdiagnosed with personality disorders because their distress does not look like typical depression. ❌ Services described as “adapted for autism” often cannot explain what that actually means in practice.
University research by one of our members (76 Autistic participants) found that Autistic suicidality is often driven by information deprivation and system failure, not a primary mental illness. But the system treats it as mental illness, and the interventions can make things worse.
After this session, these findings will be presented to the Kent and Medway Safeguarding Adults Board. What we discuss on 2nd of September will directly inform what system leaders hear on 22nd of September.
🗒️ What will happen at the session?
Setting the scene A short presentation on what we know about Autistic suicidality, drawing on research and lived experience.
Lived experience voices Time for people to share what happened when they or someone they support tried to access help. Led by lived experts. Nobody will be asked to speak – listening is contributing.
What needs to change? A practical discussion: what pathway should exist? How should services work together? What does “adapted for autism” actually need to look like?
What we will do with this We will capture the key themes and feed them into the Safeguarding Adults Board presentation and the KMMH LD&A programme plan.
👥 Who is this for?
Everyone is welcome. This session is for: ✅ Autistic people and people with a learning disability with lived experience of mental health services ✅ Family carers and parent carers ✅ Clinicians and practitioners from any service across Kent and Medway ✅ Managers and commissioners who want to understand what needs to change ✅ Anyone who works with or supports Autistic people or people with a learning disability
You do not need to have attended previous sessions. You are welcome whether you work in the NHS, social care, education, housing, the voluntary sector, or are here because of your own experience.
♾️ About the Community of Practice
The Kent and Medway LD&A Community of Practice brings together people from across services and sectors to learn from each other, share good practice, and solve problems together. It is cross-services, cross-sector, and led by lived experts, currently with support from the KMMH LD&A programme.
Previous sessions have covered: what matters most to our community (values clarification), sharing good practice and barriers across services, how we build a community that works at lived expert pace, the importance of language used for and about Autistic people and people with a learning disability.
The Community of Practice is largely planned and led by lived experts. We are looking for KMMH colleagues and system partners who can support the running of the CoP going forward.
This could include: 🔧 Helping with logistics and administration (invites, technology) 🗣️ Co-facilitating sessions alongside lived expert chairs 📊 Sharing data, good practice, or case studies from your service 💷 Championing the CoP within your directorate or organisation 🔗 Connecting us to other networks, groups, or professionals who should be in the room
If you or someone in your team could contribute, please get in touch. The CoP only works because people across the system make time for it.
📧 If you want to discuss helping the CoP, please email: kmmh.ld-autism-admin@nhs.net Subject line: Community of Practice
On this page you will find two versions of this blog.
There is a blog plain language version and an easy read version.
Click the title of the version you would like to read below.
Regret Is Not Retraction: Simon Baron-Cohen’s non-apology, and the £26m question we should be asking
On 5 July 2026, the Guardian ran an exclusive: the man who gave the world the “extreme male brain” theory of “autism”* now regrets the phrase. Simon Baron-Cohen told the paper that terms like “male brain” and “female brain” are no longer useful, that they invite simplistic headlines, and – importantly – that it is a myth Autistic people lack empathy (Devlin, 2026).
[*autism is in quotation marks as it refers to the abstract concept used to describe “people with autism spectrum disorder”. I reject this term in favour of talking about us as Autistic people – whole Autistic humans]
Read quickly, it looks like a reckoning. Read carefully, it is nothing of the sort.
Because in the same breath, he insisted the underlying science had “stood the test of time” (Devlin, 2026). And he said all of this to the Guardianbefore the announcement of a £26m gift to Cambridge from the philanthropist Lisa Yang – money that will fund a new centre he will direct, alongside a clinical “autism” centre in a future Cambridge children’s hospital.
This is not an apology. It is a rebrand. And the timing tells us why.
What he conceded – and what he kept
Let us be precise about what has actually changed, because the distinction is everything.
What he gave up is a phrase. “Extreme male brain” was always indefensible – a piece of neurosexism dressed as neuroscience – and abandoning the label costs him nothing now that it has done its work. What he kept is the theory: the empathising–systemising model, and the claim that the science beneath it is sound.
And notice what the empathy concession really is. For two decades, the “empathy deficit” story – built on his own “theory of mind” work – told the world that Autistic people cannot read, or feel for, other minds. Now he tells us that was a myth. A myth that many of us spent those same two decades trying to correct, whilst drowning in other people’s feelings. That is not humility. That is a man conceding a point the community forced on him, and taking the credit for the correction.
The theories, one by one
Here is the harder truth the interview does not sit with: his theories have not “stood the test of time.” One by one, they have buckled – and, tellingly, several were dismantled by Autistic scholars he spent a career talking over.
Take “mindblindness” and the claim that Autistic people lack a “theory of mind.” Damian Milton reframed this entirely with the double empathy problem: the breakdown between Autistic and non-Autistic people is mutual – a two-way failure of understanding, not a defect that sits inside us (Milton, 2012; Milton, Gurbuz, & López, 2022). The evidence has followed. Non-Autistic people misjudge us within seconds and choose not to interact (Sasson et al., 2017); Autistic-to-Autistic communication, meanwhile, can flow perfectly well (Mitchell, Sheppard, & Cassidy, 2021). The “blindness,” it turns out, was never only ours.
Take the “empathy deficit.” A now-substantial body of work shows that the emotional differences once pinned on “autism” are better explained by alexithymia – a difficulty identifying and describing one’s own emotions – which often co-occurs with being Autistic but is not being Autistic itself (Bird & Cook, 2013). Control for alexithymia, and the supposed “Autistic empathy deficit” simply disappears (Cook, Brewer, Shah, & Bird, 2013; Bird et al., 2010). Baron-Cohen now calls the deficit a myth. The science that dismantled it was not his.
Take the “extreme male brain” itself. Even on its own terms – a population-level average dressed up as an individual truth – it fuelled a generation of missed, dismissed, and misdiagnosed Autistic women, girls, non-binary and trans people, because clinicians were trained to look for a “male” profile (and, let us be honest, plenty of Autistic men who did not fit it either). A theory that hides half a community from diagnosis is not a neutral scientific curiosity. It is a harm measured in lost years.
And the “prenatal sex steroid” theory – the foetal-testosterone claim on which his more recent honours rest – remains contested and poorly replicated, however decorated.
Am I claiming every strand is settled and dead? No – and I will not overstate it, because his defenders will pounce on any exaggeration. Some empathising–systemising findings do replicate on his own very large datasets (Greenberg et al., 2018). But what those self-report questionnaires actually measure, and the deficit story stacked on top of them, are precisely what has not held. The direction of travel is unmistakable – and in conceding the label and the empathy myth, Baron-Cohen is quietly walking it whilst insisting he is not.
Why now? Follow the aims, not the apology
Here I want to be careful, and honest, about the difference between what we know and what we suspect.
We have been here before. In 2021, Baron-Cohen’s Spectrum 10K set out to collect the DNA of 10,000 Autistic people. The Autistic community organised – I was part of that organising – under the banner Boycott Spectrum 10K and the slogan “Nothing about us, without us.” And we did the one thing the press releases never invite: we read the actual grant. Its stated aims were not the warm language of “wellbeing” on the website. In the funder’s own words, the study set out to identify genetic variants that “contribute to the development of “autism”,” to “investigate if there are any genetically-defined subgroups of people with “autism”,” and to “improve on existing methods for diagnosing “autism”” (Aucademy, 2021). Subtyping. Earlier diagnosis. That is what the money was for. After a two-year fight, the project was dropped (Gray-Hammond, 2025; Devlin, 2026).
So, forgive me if I do not applaud a regret delivered on the doorstep of a £26m centre – one whose stated priorities are, once again, earlier diagnosis and a clinical arm inside a children’s hospital.
Let me be clear about the limits of what I can prove. The Guardian piece does not say the new Yang centre is a genetics or subtyping project, and I will not tell you that it is. What I can tell you is that the last time this researcher received a major grant, the friendly public framing and the actual aims were two different documents – and the community only found the gap by reading the paperwork, not the press.
So the questions write themselves. What, precisely, are the Lisa Yang Centre’s research aims – in the funding agreement, not the interview? Who governs them? Are Autistic people partners and decision-makers in setting those priorities, with the power to say no – or are we, once again, to be “consulted” after the cheque has cleared? What happens to any data collected? And what does “earlier diagnosis” of children mean to someone who has always returned to attempting to subcategorise us?
Follow the aims, not the apology.
The harm was never abstract
We must not let a softer new tone quietly erase what the old theories did.
The empathy myth did not stay in a journal. It was baked into diagnostic criteria, school reports, relationship counselling, and the private self-image of every late-discovered Autistic person who spent decades believing they were cold, broken, or unlovable. It taught non-Autistic people that we were the ones who could not connect – and then blamed us for the disconnection. This is not abstract damage: it is exactly the isolation, self-blame, and minority stress that erode Autistic wellbeing (Botha & Frost, 2020; Farahar, 2022). Meanwhile, “autism” research poured its funding into causes, genes, and mechanisms, and starved the things our community actually asks for – support, services, and a decent quality of life.
What accountability would actually look like
I am, as ever, more interested in repair than in point-scoring. So, what would a genuine reckoning look like – not a rebrand, but accountability?
It would mean retracting the theory, not merely the terminology – stating publicly that the deficit models were wrong, and why. It would mean putting £26m where the community’s priorities actually are: the healthcare, the mental health support, and the premature-mortality crisis Autistic people have been naming for years. (And yes – if his own team’s cardiovascular findings hold up to peer review, that is precisely the kind of work worth funding: led by us, not merely conducted about us.) It would mean lived experts as researchers, co-researchers, partners and decision-makers, with the power to shape and to veto, from the first line of the grant. And it would mean transparency: the aims, the governance, and the data pathways, published where we can read them.
We are still here
Every major theory this man built has been challenged, reframed, or quietly abandoned – much of it by the very Autistic people his theories rendered voiceless. He has been knighted, medalled, and prized for that body of work, and now, as the honours and the millions arrive, he tells us the phrasing was “unfortunate”.
Regret is not retraction. A softer sentence is not a safer science. And an apology delivered alongside a £26m grant is not an apology – it is a strategy.
We read the aims last time. We will read them again.
#BoycottSBC · #BoycottSpectrum10K · Nothing about us, without us.
Bird, G., & Cook, R. (2013). Mixed emotions: The contribution of alexithymia to the emotional symptoms of “autism”. Translational Psychiatry, 3(7), e285. https://doi.org/10.1038/tp.2013.61
Bird, G., Silani, G., Brindley, R., White, S., Frith, U., & Singer, T. (2010). Empathic brain responses in insula are modulated by levels of alexithymia but not “autism”. Brain, 133(5), 1515–1525. https://doi.org/10.1093/brain/awq060
Botha, M., & Frost, D. M. (2020). Extending the minority stress model to understand mental health problems experienced by the Autistic population. Society and Mental Health, 10(1), 20–34. https://doi.org/10.1177/2156869318804297
Cook, R., Brewer, R., Shah, P., & Bird, G. (2013). Alexithymia, not “autism”, predicts poor recognition of emotional facial expressions. Psychological Science, 24(5), 723–732. https://doi.org/10.1177/0956797612463582
Devlin, H. (2026, July 5). Pioneer of ‘extreme male brain’ theory of “autism” now says phrase unhelpful. The Guardian.
Farahar, C. (2022). Chapter Nineteen – Autistic identity, culture, community, and space for wellbeing. In D. Milton, & S. Ryan (Eds.), The Routledge International Handbook of Critical Autism Studies (1st ed.). Routledge.
Gray-Hammond, D. (2025, January 31). Spectrum 10K closed: The power of community organising. Emergent Divergence.
Greenberg, D. M., Warrier, V., Allison, C., & Baron-Cohen, S. (2018). Testing the empathizing–systemizing theory of sex differences and the extreme male brain theory of “autism” in half a million people. Proceedings of the National Academy of Sciences, 115(48), 12152–12157. https://doi.org/10.1073/pnas.1811032115
Milton, D. E. M. (2012). On the ontological status of “autism”: The ‘double empathy problem’. Disability & Society, 27(6), 883–887. https://doi.org/10.1080/09687599.2012.710008
Mitchell, P., Sheppard, E., & Cassidy, S. (2021). “autism” and the double empathy problem: Implications for development and mental health. British Journal of Developmental Psychology, 39(1), 1–18. https://doi.org/10.1111/bjdp.12350
Sasson, N. J., Faso, D. J., Nugent, J., Lovell, S., Kennedy, D. P., & Grossman, R. B. (2017). Neurotypical peers are less willing to interact with those with “autism” based on thin slice judgments. Scientific Reports, 7, 40700. https://doi.org/10.1038/srep40700
Did Simon Baron-Cohen really say sorry? – An Easy Read blog
Written by Dr Chloe Farahar
What has happened?
🔬 Simon Baron-Cohen is a scientist. He has studied autism for a long time.
💬 He has just said sorry for one of his phrases. The phrase was “extreme male brain”.
But saying sorry for one phrase is not the same as saying his ideas were wrong.
What did he say about empathy?
❤️ He said it is a myth that Autistic people have no empathy.
Empathy means caring about how other people feel. Autistic people do care about other people.
Did he say his ideas were wrong?
⚠️ No. He still says his science is right.
But many of his ideas have been shown to be wrong.
How have his ideas caused harm?
💔 For many years, his ideas told people that Autistic people do not understand or care about others.
This hurt many Autistic people. Some felt broken or unloved.
Many women and girls were not told they are Autistic, because people looked for the wrong things.
What is the truth?
🤝 Autistic and non-autistic people can find each other hard to understand. This goes both ways.
Autistic people often understand each other very well.
This idea is called the double empathy problem. An Autistic scholar, Damian Milton, first explained it.
Why is he saying this now?
💰 At the same time, he is getting a lot of money. It is £26 million.
He will be the boss of a new autism centre. It will also work with Autistic children in a new hospital.
Has this happened before?
🧬 Yes. A few years ago he got big money for a study called Spectrum 10K.
He wanted to collect the DNA of 10,000 Autistic children.
DNA is tiny information inside our bodies. It helps make us who we are.
The study wanted to find “types” of autism. It also wanted to find out earlier which children are Autistic.
What did Autistic people do?
🛑 Many Autistic people were worried. We were scared the DNA could be used to stop Autistic people being born.
We started a campaign called Boycott Spectrum 10K. We worked together, and the study was stopped.
What are we asking now?
❓What is the new money really for?
Who is in charge? Are Autistic people helping to make the choices?
What will happen to any information they collect?
What would make things better?
✅ Say the old ideas were wrong.
Spend the money on what Autistic people need, like good health care and support.
Let Autistic people lead and make the decisions.
Be open and honest about the plans.
What is the main message?
👀 Saying sorry for a phrase is not the same as saying the ideas were wrong.
On this page you will find two versions of this blog about the House of Lords debate on the Autism Act happening on the 10th of June 2026.
There is a blog plain language version and an easy read version.
Click the title of the version you would like to read below.
Time to deliver: Why the House of Lords debate on the Autism Act matters
On Wednesday 10 June, the House of Lords will debate something that should matter to every Autistic person in England – and to everyone who works alongside us. The subject is the future of the Autism Act 2009, and of the strategy that is meant to give that law its teeth. Simply put, this is a debate about whether the promises made to Autistic people will finally be delivered.
The debate takes place on Wednesday 10 June, starting at around 2:50pm and lasting up to three hours. You can watch it live online at parliamentlive.tv.
What the Autism Act actually does
The Autism Act 2009 is a law for, and about, Autistic people in England. It is short – but its purpose is significant. The Act requires the Government to publish an autism strategy (a plan to improve Autistic people’s lives), and to back that strategy with statutory guidance telling the NHS and local authorities what they must do.
In other words, the Act is the legal hook on which everything else hangs. The current strategy runs from 2021 to 2026. It expires in July 2026 – and that deadline is precisely why this moment matters.
A Committee, and a report worth reading
In January 2025, the House of Lords appointed a Select Committee on the Autism Act 2009, chaired by Baroness Rock, to examine how well the Act and its strategies have worked, and what should come next. The Committee heard from dozens of Autistic people and those who support us, and took written evidence from hundreds more. Dr Chloe Farahar of Aucademy was invited to present evidence, and you can read more about the Autism Act 2009 review, held 2025, and what Chloe said here.
The Committee’s final report, Time to deliver: The Autism Act 2009 and the new autism strategy, was published on 23 November 2025. The Government published its response in January 2026. The debate on 10 June is where the report is formally considered – and where the Committee will, in its own words, judge the Government against the commitments it has made.
What the report found
The Committee is honest about progress. The Act, successive strategies and statutory guidance have driven real change: they set out who is responsible for meeting Autistic people’s needs, brought more of us into decisions about our own services, and expanded access to adult autism assessment.
But the report does not soften its central finding. The Act and the strategies that followed have failed to tackle the key barriers standing in the way of better outcomes. At the same time, the numbers of Autistic people and families seeking assessment and support have risen sharply – because understanding has grown, because more of us are struggling to cope, and because overstretched services have quietly raised the bar for who qualifies for help. One witness captured it starkly: the report describes a situation in which the state is fighting the state.
The detail is sobering, and worth naming directly:
Autistic people face stark health inequalities and die younger than the general population, with Autistic women far more likely to die by suicide.
Too many Autistic children are unhappy in mainstream schools; rising numbers of families turn to home education not by choice but because school is no longer an option, and suspension and exclusion rates remain too high.
A persistent employment gap shuts capable Autistic people out of work.
Autistic people remain too often detained in mental health inpatient settings – in some cases for years – when the right community support could have prevented it.
Six themes for a new strategy
Crucially, the Committee does not stop at criticism. It sets out a path. It calls on the Government to begin developing a new, cross-government, all-age autism strategy immediately, so that it is ready the moment the current one expires in July 2026 – with a proper implementation plan attached. The report recommends building that strategy around six themes:
Improving understanding, acceptance and accessibility.
Identification, assessment and support.
Reducing health inequalities and building support in the community.
Access to education and transitions to adulthood.
Employment.
Criminal justice.
Why the timing is everything
There is a cliff edge approaching. If the current strategy expires in July 2026 with nothing ready to replace it, Autistic people are left in a policy vacuum. The Committee has been clear that this cannot happen, and that each of its recommendations needs urgent action. The 10 June debate is a moment to hold that commitment to account before the deadline arrives.
What must be true this time
A strategy is only as good as the people it serves – and the people who shape it. If the new strategy is to succeed where its predecessors fell short, Autistic people cannot be treated as an afterthought or a box to tick. We must be partners and decision-makers in the work, not merely consulted once the important choices have already been made. That principle runs through the Committee’s own approach: it went to considerable lengths to make its work accessible, and it asks the Government to do the same.
There is also a deeper argument here, and it is one I return to often. Autistic people do better when we belong – when environments are built around how we actually experience the world, rather than expecting us to mask, cope and unravel in silence. A strategy that embraces neurodivergence as difference, not deficit, and that gets the right support to people at the right time, is not a luxury. It is the difference between Autistic people surviving and Autistic people thriving.
I work hard as a disabled Autistic person to achieve real improvement in my role for my local NHS, and I have met amazing NHS colleagues who are with me when it comes to making changes that improve and save lives in Kent and Medway.Learn about my work here.
How to watch, and where to read more
The debate will be opened by Baroness Rock, followed by Committee members and other peers, then by the Liberal Democrat and Conservative front benches, and finally by Baroness Merron, the Minister at the Department of Health and Social Care, before Baroness Rock’s closing remarks. Watch it live at parliamentlive.tv from around 2:50pm on Wednesday 10 June. It is also possible to attend in person via the public gallery on a first-come, first-served basis.
If you would like to read the source material, the links below are well worth your time – please do share them with anyone who would find them useful:
The next year will decide whether the new strategy is a genuine turning point or another missed opportunity. I will be watching on 10 June. I hope you will too.
The Autism Act – An Easy Read blog
Written by Dr Chloe Farahar
What is happening?
On Wednesday 10 June, a group of people in Parliament will talk about autism and the law.
This group is called the House of Lords. They help make the laws for our country.
What is the Autism Act?
The Autism Act 2009 is a law for Autistic people in England.
The law says the Government must have a plan to make life better for Autistic people. This plan is called the autism strategy.
The strategy also tells the NHS and councils what they must do to help Autistic people.
Why are people talking about it?
A group of people in the House of Lords looked at how well the law and the plan are working. This group is called a Committee. Baroness Rock is in charge of it.
They listened to lots of Autistic people and people who support them.
Then they wrote a report. A report says what they found out and what they want to change.
The report is called ‘Time to deliver’. It came out in November 2025.
What did they find?
The law has helped some things get better.
But it has not fixed some big problems. For example:
Lots of Autistic people need help but cannot get it.
Autistic people often have worse health and die younger than other people.
Many Autistic children are not happy at school.
Many Autistic people find it hard to get a job.
Some Autistic people are stuck in hospital for a long time when they should be living in the community.
What do they want to happen?
The plan we have now ends in July 2026.
The Government must make a new and better plan, ready before the old plan ends.
The new plan should help Autistic people of all ages – children, young people and adults.
The new plan should help with health, school, jobs and more.
Most of all, Autistic people must help make the plan. We should be partners who help decide things, not just be asked at the end.
Why this matters to me
I believe Autistic people do better when we belong and feel safe. The world should be built so it works for how Autistic people think and feel.
Being Autistic is a difference, not something wrong.
How can I watch?
You can watch the talk on the internet. Watch it here: parliamentlive.tv
It is on Wednesday 10 June, at about 10 minutes to 3 in the afternoon (2:50pm).
Where can I read more?
You can read an Easy Read version of the report here:
On this page you will find three versions of my discussion about the problems with a research paper from 2025 by Litman et al. There are three versions depending on how you like or need to take in information.
There is a blog plain language version; a short essay version; and an easy read version.
Click the title of the version you would like to read below.
👇🏼 BLOG: Autism’s “four subtypes” – what the 2025 study actually found A short, plain-language take on Litman et al. (2025)
Autism’s “four subtypes” – what the 2025 study actually found
You may have seen the headlines. A study in Nature Genetics has, we are told, identified four genetic subtypes of autism. Friends are emailing it to me. Colleagues are asking what I think. So let me set out, in plain language, what Litman and colleagues (2025) actually did – and what they did not.
What they did
Researchers took data from over 5,000 Autistic children whose parents had filled in a battery of standard questionnaires: how their child communicated, what repetitive behaviours they did, what emotional difficulties parents perceived, when they first walked, when they first used words. A computer model sorted those parent responses into four groups. Then the researchers looked at the genetics of children in each group and reported that the groups had different genetic patterns.
What they did not do
They did not identify four genetic subtypes of autism. Quite simply, the four groups were built from parent-reported behaviour first. Genetics was looked at second. The genetics did not create the groups. The behaviour questionnaires did.
And here is the line buried in the paper that you will not see in the press release: none of the four groups had a significantly different polygenic score for autism. The genetic differences they did find were mostly in scores for ADHD, IQ, educational attainment, and depression. The two groups with the strongest rare-variant signals are essentially the groups of children with co-occurring learning disability and developmental delay – something we have known is associated with rare high-impact genetic variants for years.
The questionnaires they used are not neutral
The Social Communication Questionnaire asks parents to rate how “abnormal” their Autistic child’s eye contact is. The Repetitive Behavior Scale rates how “problematic” stimming and routines are. The Child Behavior Checklist measures “internalising” and “externalising problems”. Every one of these tools asks an outsider – a parent – to interpret an Autistic child’s behaviour through a deficit lens. None asks the Autistic child anything. None considers monotropism, sensory difference, the Cullen Autistic pragmatic language hypothesis, the double empathy problem, or the three-dimensional Autistic space framework (more on Autistic theories and research). None considers that what looks like a “problem” from the outside might be a coping mechanism, a preference, a strength, or a perfectly reasonable response to an overwhelming environment.
When the categories themselves are loaded – “Broadly affected”, “Moderate challenges” – we should ask: affected by what? Challenges according to whom?
Why this matters
Autistic people and our communities have spent decades dismantling the crude tiers that came before: high versus low functioning, Asperger’s versus autism, severe versus mild. We did this work because those binaries flattened us into hierarchies and decided in advance who got to speak, who deserved support, and whose autism was even “real”. We do not need a new four-tier vocabulary, wrapped in the authority of computational genetics and a Nature journal’s reputation, to bring those binaries back through the side door. Particularly when our profiles are never fixed ([Farahar TDAS link]), and subtyping historically and in the recent past has been weaponised against Autistic people with and without traditional speech to deny support and services.
A more honest summary
Here is what Litman et al. actually showed. Parent-reported behaviour patterns can be statistically grouped. The groups correlate with genetic variation, mostly for co-occurring conditions and learning disability. That is a useful contribution to research methods. It is not the discovery of autism’s genetic subtypes.
Until autism research starts with Autistic experience – until it asks us – every “subtype” it produces will tell us more about the people doing the looking than about the people being looked at.
Reference: Litman, A., Sauerwald, N., Green Snyder, L., Foss-Feig, J., Park, C. Y., Hao, Y., Dinstein, I., Theesfeld, C. L., & Troyanskaya, O. G. (2025). Decomposition of phenotypic heterogeneity in autism reveals underlying genetic programs. Nature Genetics, 57, 1611–1619.
👇🏼EASY READ: A new study about autism – what it really found 📖 An Easy Read explanation
A new study about autism – what it really found
📖 An Easy Read explanation
By Dr Chloe Farahar
📄 About this Easy Read • This Easy Read is about a new science paper. • The paper is about autism. • It came out in July 2025. • Some people said the paper found new types of autism in our genes. • I do not think that is what the paper found. • This Easy Read explains why.
🔬 What is the new paper? • A team of scientists wrote the paper. • The lead writer is called Litman. • It is in a science journal called Nature Genetics. • The scientists wanted to understand why autism looks different in different people.
👨👩👧 What did the scientists do? • They looked at more than 5,000 Autistic children. • They asked parents to fill in questionnaires. • The questionnaires asked about the child’s behaviour. • A computer sorted the children into 4 groups. • The 4 groups were based on the parents’ answers. • Then the scientists looked at the children’s genes.
📰 What did the news say? • Some people reported this as though the scientists found 4 genetic types of autism. • “Genetic” means caused by genes. • That sounds like the scientists found the genes that make someone Autistic. • But that is NOT what they found.
❌ What the study did NOT find • The 4 groups were made from parent answers – not from genes. • The genes were only looked at AFTER the groups were made. • This matters a lot. • The scientists also checked autism gene scores in each group. • The autism gene scores were the SAME in all 4 groups. • This means the groups were NOT different in their autism genes.
🧬 What about the gene differences they did find? • The scientists did find some gene differences. • But those differences were for OTHER things. • The differences were for ADHD, IQ, school grades, and depression. • These are NOT autism. • Two of the groups had more rare gene changes. • Those two groups were the children who also had a learning disability. • We already knew learning disability is linked to rare gene changes. • So this is not really new.
❓ Were the questions in the study fair? • The questionnaires see autism as something “wrong” or “broken”. • One asks parents to rate how “abnormal” their child’s eye contact is. • Another asks if stimming is a “problem”. • None of the questionnaires ask the Autistic child anything. • They do not think about monotropism. • Monotropism means deep focus on one thing at a time. • They do not think about sensory needs. • They see autism through a “deficit” lens. • “Deficit” means looking only at what is missing or wrong.
🏷️ The names of the groups are loaded • One group is called “Broadly affected”. • We can ask: affected by what? • Another group is called “Moderate challenges”. • We can ask: challenges to whom? • These names hide a judgement inside them. • They compare Autistic children to non-Autistic children.
⚠️ Why does this matter? • Autistic people fought for years to stop being put in boxes. • Old boxes included “high functioning” and “low functioning”. • Those boxes were unfair. • They decided who could speak. • They decided who got help. • This new study could bring those old boxes back. • That would be a step backwards.
✅ The main message • The study did NOT find genetic types of autism. • It found that parent answers can be sorted into groups. • The groups link to genes for OTHER things – not autism itself. • The headlines have got it wrong. • We should be careful before we believe them. • Until autism research asks Autistic people about our own lives, every “type” it finds will tell us more about the people doing the looking than about us.
👇🏼 ESSAY: Behaviour mistaken for biology A critical reading of Litman et al. (2025) – Decomposition of phenotypic heterogeneity in autism reveals underlying genetic programs
Behaviour mistaken for biology
A critical reading of Litman et al. (2025) – Decomposition of phenotypic heterogeneity in autism reveals underlying genetic programs
In July 2025, Litman and colleagues published Decomposition of phenotypic heterogeneity in autism reveals underlying genetic programs in Nature Genetics. Public coverage has, predictably, distorted what the study actually did. Headlines and social media posts have suggested that researchers have at last identified genetic subtypes of autism. Quite simply, they have not. This essay sets out what Litman et al. did, what they did not, and why the distinction matters.
What the study did
The authors took 5,392 Autistic children from the SPARK cohort and applied a generative finite mixture model to 239 phenotypic features. Those features came from four parent-completed instruments: the Social Communication Questionnaire-Lifetime (Rutter et al., 2003), the Repetitive Behavior Scale-Revised (Lam & Aman, 2007), the Child Behavior Checklist 6–18 (Achenbach & Edelbrock, 1979), and a developmental milestones form. From this, they generated four latent classes (“Social/behavioral”, “Mixed ASD with DD” (developmental delay), “Moderate challenges”, and “Broadly affected”). They then examined genetic data and reported class-specific patterns of common, de novo, and inherited variation.
What the study did not do
The study did not identify genetic subtypes. The classes were constructed entirely from parent-reported behavioural questionnaires before any genetic analysis took place. Once the classes were fixed, the authors looked for genetic patterns within them. This is a fundamentally different claim from “we found genetic subtypes.” The genetic signal here is downstream of an observer-rated behavioural classification, not the basis for it.
Equally important, the autism polygenic score showed no statistically significant difference between any of the four classes. The genetic differences the authors did find were in polygenic scores for ADHD, IQ, educational attainment, and major depression – co-occurring conditions and contested cognitive constructs, not autism itself. The two classes with the strongest rare-variant signals (“Mixed ASD with DD” and “Broadly affected”) are, on inspection, the classes capturing co-occurring learning disability and developmental delay. That learning disability has stronger associations with high-impact rare variants is already well-established (Satterstrom et al., 2020). The paper has, in effect, rediscovered this and reframed it as four “classes of autism”.
The framework is value-laden, not neutral
Each instrument used to construct the classes is built on the deficit-medical model. The SCQ asks parents to rate “abnormal” eye contact and “failure” to seek shared enjoyment. The RBS-R rates how “problematic” repetitive behaviours are. The CBCL frames distress, withdrawal, and emotional regulation as “internalising” and “externalising problems”. None of these instruments asks what an Autistic child’s experience is. None engages with monotropism (Murray, Lesser, & Lawson, 2005), sensory difference, the double empathy problem (Milton, 2012), pragmatic Autistic language (Cullen, 2018), or the variability of our Autistic experiences explained by the three-dimensional Autistic space framework (Farahar, 2018/2026) (more detail on these Autistic theories and research). The class names embed value judgements as well: “Broadly affected” – affected by what, and compared to whom? “Moderate challenges” – challenges defined by whose expectations of how a child should be?
Replication is not validation
The authors replicated the four classes in the Simons Simplex Collection. This is methodologically reassuring but conceptually limited. Both cohorts use the same observer-rated, deficit-framed instruments. Reproducing the same classification in another sample tells us the model is consistent; it does not tell us the underlying construct is valid. A consistently flawed measurement remains flawed.
Why this matters
Behaviour observed by parents has been reified into genetic destiny in public conversation. The risk is real. Autistic communities have spent decades dismantling the binaries – high versus low functioning, Asperger’s versus autism, severe versus mild – that reduced individuals to crude tiers (Kapp et al., 2013; den Houting, 2019). A new four-tier vocabulary, dressed in the authority of computational genetics, threatens to bring those binaries back through a side door. Binaries that are illogical given the knowledge that our profiles are never fixed (Farahar, 2018/2026).
The honest contribution of Litman et al. (2025) is narrower than the headlines: parent-reported behavioural patterns cluster in statistically describable ways, and those clusters correlate with genetic variation associated mainly with co-occurring conditions and learning disability. That is interesting. It is not the discovery of autism’s genetic subtypes.
References
Achenbach, T. M., & Edelbrock, C. S. (1979). The Child Behavior Profile: II. Boys aged 12–16 and girls aged 6–11 and 12–16. Journal of Consulting and Clinical Psychology, 47(2), 223–233.
den Houting, J. (2019). Neurodiversity: An insider’s perspective. Autism, 23(2), 271–273.
Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., & Hutman, T. (2013). Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology, 49(1), 59–71.
Lam, K. S. L., & Aman, M. G. (2007). The Repetitive Behavior Scale-Revised: independent validation in individuals with autism spectrum disorders. Journal of Autism and Developmental Disorders, 37(5), 855–866.
Litman, A., Sauerwald, N., Green Snyder, L., Foss-Feig, J., Park, C. Y., Hao, Y., Dinstein, I., Theesfeld, C. L., & Troyanskaya, O. G. (2025). Decomposition of phenotypic heterogeneity in autism reveals underlying genetic programs. Nature Genetics, 57, 1611–1619.
Milton, D. E. M. (2012). On the ontological status of autism: the ‘double empathy problem’. Disability & Society, 27(6), 883–887.
Murray, D., Lesser, M., & Lawson, W. (2005). Attention, monotropism and the diagnostic criteria for autism. Autism, 9(2), 139–156.
Rutter, M., Bailey, A., & Lord, C. (2003). The Social Communication Questionnaire: Manual. Western Psychological Services.
Satterstrom, F. K., et al. (2020). Large-scale exome sequencing study implicates both developmental and functional changes in the neurobiology of autism. Cell, 180(3), 568–584.e23.
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I’m all turned about this morning. It’s a long bank holiday weekend and I don’t know what to do with myself – the absence of a plan makes me feel emotionally low.
It’s made more uncomfortable by having had to swap my smart watch and my Visible app monitor to opposite arms. (The Visible monitor stays on for 24 hours at a time, other than charging weekly and swapping the band to a dry one after showering – which eventually led to skin irritation, and the need to swap.)
Simple-sounding. And yet this swap has thrown my morning routine into confusion. My brain is so accustomed to how I put the band on and how I glance at my watch that I now have to think very hard about the next steps. So hard, in fact, that I almost forgot deodorant.
We all learn that routine, structure, and predictability are important for Autistic people. Families with Autistic children know this well. As an Autistic person who knows I have routines and a need for predictability, it’s only recently occurred to me just how far that runs.
My Autistic, multiply disabled friend and fellow Aucademy CIC Director, Jessica, worked it out – on yet another drive to a training session we were delivering together, where, as usual, I was late. This time by nearly half an hour.
I’ve tried all sorts of things over the years: making earlier calendar entries to trick myself; changing all my clocks to run ahead; asking my partner to help me – get me out of bed, take my phone in the morning. It didn’t go well.
I’ve come to accept that I will be late for most things, particularly in the morning. I’d put it down to chronic fatigue. Not being a morning person. Finding it just too hard to leave the house (I mean – there are people out there).
But on that 45-minute drive to teach nursing students, Jessica worked it out.
“I’m always behind and late getting up, just like you – but unlike you, I can drop parts of my routine. I won’t have breakfast, or do my hair. But you can’t cut anything from yours.”
For Jessica, who also experiences anxiety-driven needs for autonomy, the pressure and demand of being late is more costly than dropping elements of the routine – the idea of someone calling to hurry them up is unbearable. For me, it’s almost the reverse. That external pressure doesn’t affect me as much as the distress of waking up exhausted and not moving through the predictability of my routine.
My lateness is not personal to you. If I am late for your class, our meeting, that appointment – know that it is not disrespect. I really did do my best to be on time, and if it were easy for me to “just drop some of your routine,” then at 42, I would. It frustrates my neurodivergent partner, who hates being late or having to rush for a train – but he knows I don’t do it on purpose. (At least, he tries to see it that way.)
I even use my lateness as a teaching moment. When I tornado into the simulation hospital ward 20 minutes late, I ask nursing students: “Before we start – discuss in groups what barriers there might be for an Autistic patient arriving to your appointment on time, what reasons they might be late, and how those barriers affect them – like being refused further appointments, or removed from services altogether.” Then I walk them through why I was late.
I can’t fully explain why my routine, in its current form, is so important to me and so difficult to alter, defer from, or break. My smart watch buzzes me awake; I’m still exhausted; I lie there for maybe half an hour. I try to take my duloxetine (for anxiety and pain) at my bedside, to help me surface. Then I check emails, LinkedIn, Aucademy Facebook, and Instagram. Steve has to come and remove the cat from my bed so I can do my morning stretches for pain management. Then shower, dress, makeup, breakfast if there’s time, the rest of my morning meds. And that’s before we get to the micro-routines: the order I do things in the bathroom; how long I clean my teeth to feel properly clean; the order I put my clothes on; my makeup.
And so we return to my disorientation this weekend. A watch and a Visible device on opposite arms, and a ripple effect through everything that follows.
Routines really are important to many of us. Some Autistic people, like Jessica, can override theirs – because the anxiety of being late, and the risk of someone pressuring them to hurry, costs more than simply dropping an element or two. For others, the world becomes utterly disorienting without that predictability, leading to low mood, or even meltdown or shutdown.
If you don’t experience this, please consider the cost to our wellbeing when routines are disrupted or questioned – and the knock-on effects on our timekeeping, our ability to transition, and the very real distress that comes when we are prevented from following them.
Please do share this with anyone who needs to hear it.
Every year, Neurodiversity Celebration Week arrives with its rainbow banners and its infinity symbols, its acknowledgements of Autistic people, its nods to ADHD and dyslexia. And every year, I find myself returning to the same question: who, exactly, are we celebrating?
I ask this not to diminish what Neurodiversity Celebration Week does well – which is a great deal. Raising awareness of Autistic experience, of attention differences, of dyslexia and dyspraxia and dyscalculia, matters. It reduces stigma. It helps people understand themselves. I have spent a significant portion of my professional and personal life working toward exactly these ends. But I argue that when we celebrate “neurodiversity” and mean only innate, developmental neurodivergence – and when even that is narrowed to autism, ADHD, and dyslexia – we are not celebrating neurodiversity at all. We are celebrating a curated, convenient subset of it.
And the people we are leaving out are, often, the people who need celebration most.
What neurodiversity actually means
Let me be precise about language, because precision here is not pedantry – it is the difference between inclusion and exclusion.
Neurodiversity is a property of groups. It refers to the natural variation in human brains and minds across all of humanity – a population-level phenomenon, not a personal characteristic. It is, as Harvey Blume (1998) elegantly put it, every bit as crucial for the human race as biodiversity is for life in general. The neurodiversity of humanity is simply biological fact. All of us – every human being – are part of it.
Neurodivergence is a property of individuals. A neurodivergent person is someone whose body-mind works in ways that differ significantly from what society currently considers neurotypical or neuronormative. This is, critically, a socially defined category: it reflects society’s norms, not fixed biological categories. What is considered neurotypical changes. Who is considered neurodivergent changes.
Simply put: neurodiversity is not something a person “has”. And neurodivergence is not a fixed list of approved conditions.
This matters because the moment we fix a list – autism, ADHD, dyslexia, dyspraxia, dyscalculia – we have already begun to exclude. We have begun to decide whose brain counts as “acceptably different”, and whose remains simply ill, disordered, broken.
The two kinds of neurodivergence – and the one we ignore
There is a useful distinction between innate and acquired neurodivergence. Innate neurodivergence is present from birth. Autistic people, Polyennic (ADHD) people, people who experience dyslexia, dyspraxia, Tourette’s, synaesthesia – these are forms of innate neurodivergence. They are what we spend most of Neurodiversity Celebration Week discussing.
Acquired neurodivergence refers to brain differences that emerge after birth – through injury, illness, chronic pain, stroke, neurodegenerative processes, or significant life experience. These too are forms of neurodivergence. A person who acquires a traumatic brain injury has a brain that works differently. A person with acquired deafness or vision loss has a brain that has reorganised around that sensory change. A person who has intensively practised meditation for decades has measurably different brain wave patterns and altered sensory processing. A meditating monk is, in a meaningful sense, neurodivergent.
And then there is the group that Neurodiversity Celebration Week most consistently ignores: people whose psychological responses to the world – to trauma, to adversity, to a disordered society – look different from what society considers “normal”. People who hear voices. People who experience what psychiatry labels schizophrenia, psychosis, bipolar, borderline personality disorder, depression, anxiety. People who are, in my framework and the framework I first developed in my chapter in The Neurodiversity Reader (Farahar, 2020), psychologically-divergent, who are under the neurodivergent umbrella.
The case for psychological divergence as neurodivergence
I want to be direct here, because this is where the argument becomes uncomfortable for some – including some within the neurodiversity community itself.
The dominant pathology paradigm – the framework that underpins mainstream psychiatry – holds that psychological and emotional distress equates to illness. That there is one right, normal, healthy brain, and any significant variation from it is disorder. That the person, therefore, is the thing to be treated, changed, altered, managed.
This paradigm does not stand up to scrutiny. As the Chair of the DSM-V task force acknowledged in 2013, definitive biogenetic causes of mental illnesses simply have not been found – not for any mental illness (Kupfer, 2013). The DSM-IV itself stated plainly that its categories were fuzzy, descriptive constructs, not diseases with clear biological boundaries or causes (American Psychiatric Association, 1994). And critically – and this is the finding that transformed my own thinking during my psychology degree – insisting that “mental illness is an illness like any other” paradoxically increases the need for social distance from those so labelled (Corrigan, 2016; Haslam & Kvaale, 2015). The neurobiological “othering” of people in psychological distress has proliferated stigma, not reduced it.
If not illness, then what?
The evidence points clearly toward one answer: trauma. The variables that correlate most strongly with what we call “mental illness” are not genetic or biological factors, but traumatic experiences – poverty, racism, neglect, assault, bereavement, structural violence (Johnstone & Boyle, 2018; Read et al., 2009). Our brains respond to trauma. They respond in any number of ways – voice-hearing, extreme states of mood, altered perception, withdrawal. These are psychologically-divergent responses to a disordered society. They are not symptoms of illness. They are the brain’s attempts to protect us.
Simply: when we pathologise these responses, we remove responsibility from the traumatising society and place it on the individual whose brain has tried its best. And we exclude that person from the neurodiversity that, by definition, should already include them.
What happens when we exclude psychological divergence from our celebrations
The consequences of this exclusion are not abstract. They are the people who sit in the margins of Neurodiversity Celebration Week and wonder if their kind of different counts. The person who hears voices and sees the Autistic community celebrated but is told their experience is not neurodivergence – it is illness. The person whose depression has left them unable to work, whose anxiety has reshaped every relationship they have, who does not feature in a single infographic about “brain differences”.
The neurodiversity paradigm – as a social model, not a biological claim – can do this because it does not require a biogenetic cause to grant personhood. It requires only the recognition that human brains and minds vary, that variation is not disorder, and that a person’s divergence from the “norm” is as much a reflection of the norm as it is of the person. Today’s neurodivergent is tomorrow’s neurotypical, as the norms of society shift. That is not a weakness of the framework. That is its extraordinary, liberatory potential.
Who does Neurodiversity Celebration Week need to include?
The full picture of neurodivergent experience – the one this week should celebrate – includes:
Acquired neurodivergences (emerging across the lifespan): traumatic brain injury; stroke; post-traumatic stress; acquired deafness or vision loss; brain changes from chronic pain; neurodegenerative conditions including Parkinson’s and multiple sclerosis; changes from intensive practice.
Psychological divergences (responses to a disordered society): voice-hearing; extreme states of mood; anxiety; depression; post-traumatic responding; experiences currently labelled as psychosis, bipolar, borderline personality disorder, and so on.
This is not a case for abandoning support for Autistic people, or for ADHD, or for dyslexia. That support is hard-won and still insufficient. It is a case for expanding the circle of who this week – and this movement – considers worthy of understanding, acceptance, and celebration.
What you can do
Quite simply: this week, look at who you are sharing content about, who you are amplifying, and who you are leaving out. Ask whether your workplace’s neurodiversity event would welcome a person who hears voices. Ask whether your school’s celebration includes the young person in crisis. Ask who benefits from the neurodiversity framework you are promoting – and who it still excludes.
Then expand your circle.
The neurodiversity of humanity is not a curated list. It is all of us.
Farahar, C. (2020). Stigmaphrenia: Reducing mental health stigma with a script about neurodiversity. In D. Milton (Ed.), The Neurodiversity Reader. Pavilion Publishing.
Blume, H. (1998). Neurodiversity. The Atlantic.
Johnstone, L., & Boyle, M. (2018). The Power Threat Meaning Framework. British Psychological Society.
Walker, N. (2014). Neurodiversity: Some basic terms and definitions. Neurocosmopolitanism.
Neurodiversity Celebration Week is one of those things I have complicated feelings about. On one hand, I am deeply glad it exists. On the other, I watch it narrow, year on year, into a celebration of a few neurodivergences most people have heard of – whilst the rest watch from the edges.
Simply put: neurodiversity is not a synonym for autism. It is not even a synonym for neurodivergence. Neurodiversity is the natural variation of human brains and minds across all of humanity – a population-level concept, not a personal characteristic. Neurodivergence is about individuals who currently don’t (and might not ever) meet neuronormative expectations: Autistic people, Polyennic people (often called ADHD), Dyslexic and Dyspraxic people, people who experience Dyscalculia, Tourette’s, Synaesthesia, and those whose brains have been reshaped by stroke, trauma, chronic pain, or other acquired differences. All of them deserve this week.
So, I made something. The presentation below is free to use, share, and adapt (with credit). It covers what neurodiversity actually means, the full breadth of neurodivergent experience, key frameworks for understanding Autistic and Polyennic minds, your legal rights under the Equality Act 2010, what reasonable adjustments look like in practice, how to know your own neurological profile, and how to build genuinely neuroaffirming environments. It is grounded in the research and the lived experience of neurodivergent communities – not in deficit narratives or outdated stereotypes.
Use it in your school. Use it in your workplace. Use it at home. Pass it on.
[Download the presentation below – it is free, just remember to credit Dr Chloe Farahar, Aucademy.co.uk . There is a PDF version and then a PPT download version]
By Dr Chloe Farahar | Autistic Researcher, Project Manager for Learning Disability and Autism at Kent and Medway Mental Health NHS Trust, and Founder of Aucademy CIC
The Spectrum Was Never Fit For Purpose – And Uta Frith Still Doesn’t Understand Why…
Frith, in her recent TES interview, claims the spectrum has “collapsed” because it includes too many people. She is “frightened” by rising diagnoses. She questions masking is even a thing preventing many from being recognised as Autistic. She wants autism restricted to a smaller, more easily observable group. She proposes “contraindicators” – including the ability to converse smoothly – that would rule out the majority of Autistic women, people of colour, and late-diagnosed adults.
Simply put: this interview is not just scientifically outdated. It is actively harmful. And I can’t decide if Frith was being lazy, ignorant, or purposely incendiary in her interview, claiming as she did that there is no evidence or science for many of our experiences.
First, I need to say: I actually agree with Frith! She is right that the “autism spectrum” is not a useful concept. I have thought this for years, and I have published on why. But I argue this from a fundamentally different position to Dame Uta Frith, and that difference matters enormously for the lives of Autistic people.
Let’s pick apart her opinions one-by-one, shall we?
The Wrong Reasons to Reject the Spectrum
Frith is right that Wing’s “spectrum” has failed. But she is wrong about why. The spectrum failed not because it became too inclusive, but because it was never a remotely adequate framework to begin with. It was always perceived (and I have tried to find an image in the literature to work out why!) as a flattened, linear continuum – running from “severe” to “mild”, from “low-functioning” to “high-functioning”, even latterly from “male autism” to “female autism” – that told us nothing about how any individual Autistic person actually lived and experienced their life.
My work, published in the Oxford University Press Collection Beyond Autistic Stereotypes (Farahar, in print 2026), proposes an entirely different framework: the Three-Dimensional Autistic Space. Rather than placing Autistic people on a linear line, this framework recognises that Autistic experience exists across three dimensions – internal (what is not visible to outsiders), external (what observers can see), and temporal (how our experience changes across time, context, and environment). This is precisely why a single diagnosis in early childhood cannot – and should not – be treated as the definitive account of a person’s Autisticness across their lifetime.
The spectrum’s failure was never that it included too many of us. It was that it was designed by non-Autistic observers, looking into the Autistic space from the outside, and only seeing what was immediately visible to their bias. This “outsiders-looking-in” phenomenon explains the historical “invisibility” of Autistic women, Autistic people of colour, and those of us whose internality – the richness of our inner Autistic lives – was simply not in the biased telescopes of researchers like Frith.
Frith simply doesn’t seem to like to read the work by Autistic researchers:
“…people still hang on to the idea that there is something that unites all the people who are diagnosed as [A]utistic. I don’t believe that any more.”
Well, Uta, I do. We are Autistic because, as Trauma Geek explains:
“Innate Autistic traits are neural hyper-connection, monotropism, and bottom-up processing.”
More on Trauma Geek’s definition:
Innate Autistic traits are natural characteristics that Autistic people are born with:
Neural hyper-connection: Autistic brains often have more connections between different brain regions, which can create deep thinking and notice patterns others might miss.
Monotropism: This means focusing intensely on one thing at a time, like shining a powerful spotlight rather than a dimmer light over many areas. This can create deep expertise and passionate interests.
Bottom-up processing: Autistic people often process information by starting with details first, then building up to the bigger picture. Most non-Autistic people do the opposite.
We are Autistic, based on community definitions of our experiences.
We are Autistic because our monotropic, interest-based model of mind (Murray, et al., 2005), impacts our sensory processing, and we have an Autistic pragmatic language, highlighting that we Autistic people have pragmatic language abilities, we just process meaning differently to non-Autistic people (Cullen, 2018), which explains the double empathy problem, demonstrating there is a translation breakdown between Autistic and non-Autistic communication and exchanges (Milton, 2012), and the variation within our community outside of these innate connections are because we exist in the Three-Dimensional Autistic Space, with our Autistic experiences – internal and external – fluctuating across time, the Autistic space placing, as it does, all Autistic people (discovered and undiscovered) in a humanising space away from the binary and obsolete spectrum.
“Frightened” by Our Numbers
Frith says the rate of later diagnoses is “just frightening”. I propose a different interpretation. When more people are discovering they are Autistic, particularly those who were historically excluded from diagnosis – women, people of colour, those of us who mask, those who were written off as “anxious” or “difficult” – this is not a crisis of overdiagnosis. This is a correction of decades of systematic underdiagnosis rooted in racial, gender, and class bias.
My chapter in the Routledge International Handbook of Critical Autism Studies (Farahar, 2022) argues how Autistic identity, culture, community and space are protective factors for wellbeing. The evidence is clear: discovering one’s Autistic identity – particularly through community rather than purely clinical process – is associated with reduced internalised ableism, improved self-worth, and better mental health outcomes (Botha, 2020; Botha & Frost, 2020). Every late-discovered person who finds out who they are is not a problem to be solved. They are a person finally finding the language for their experience, and potentially finding their community.
Frith is frightened by our numbers. I would ask: why? What is the cost to non-Autistic society of more of us knowing ourselves?
As I commented on LinkedIn:
“She claims to be frightened by the number of us. Good. This means people who benefit from the neuronormative society are worried that with so many of us working out we’re Autistic things will have to change.
Things will and are changing.
We will keep fighting for better lives for those of us less likely to be employed, and more likely to die by suicide.
We will keep fighting for those in our community who do not currently (maybe ever) share a reciprocal communication, with or without a learning disability, to be humanised and get services and support they deserve.
People like Frith don’t want us Autistic people making the changes.
I refuse to ever view Autistic people the way obsolete “autism” researchers do. We all deserve better.”
Masking: Where Is your Evidence, Exactly, Uta?
Perhaps the most egregious claim in the entire interview is that masking has “no scientific basis”. I would invite Frith to read the House of Lords Autism Act 2009 and New Strategy report (2025), which explicitly references masking and camouflaging as well-evidenced phenomena that contribute to later diagnosis, particularly in women. I would invite her to read NHS England’s own guidance on autism-informed inpatient care, which discusses masking directly. I would invite her to engage with the substantial body of published research on masking (Hull et al., 2017; Pearson & Rose, 2021) – none of which is referenced in her TES interview.
There is more than adequate scientific basis for masking. The evidence is there. To claim otherwise is not rigour – it is a failure to engage with a large body of work simply because much of it was produced by, or in partnership with, Autistic researchers.
And this raises the deepest problem with Frith’s interview. She presents her personal impressions – “I expect we could say we are all masking, all the time” – as though they carry scientific weight, whilst dismissing the lived accounts of thousands of Autistic people as scientifically unfounded. This is, quite simply, a double standard. It also demonstrates she hasn’t picked up our research in the last 10 years – masking is nothing like she seems to think: it’s an unconscious, learnt, trauma response we develop early in Autistic life.
The Dangerous Logic of “Contraindicators”
Frith proposes that smooth conversation is a “contraindicator” for autism diagnosis. If a person converses easily with you, she suggests, they are probably not Autistic. This is one of the most dangerous things in the entire interview.
The entire premise rests on an understanding of communication that was challenged – with rigorous evidence – by Dr Damian Milton in his foundational 2012 paper on the Double Empathy Problem. Milton, an Autistic academic, demonstrated that communication breakdown between Autistic and non-Autistic people is mutual. It is not a deficit located in the Autistic person. A non-Autistic clinician interviewing an Autistic person may find the conversation flows perfectly well – because the Autistic person has spent their life learning to communicate across a neurological divide, because masking is precisely the adaptation to neurotypical social norms that Frith simultaneously dismisses and uses as evidence.
Frith’s “contraindicators” framework would systematically exclude from diagnosis the very people who have historically been most harmed by missing recognition: masked Autistic adults, particularly women, but also many men and non-binary people, who have spent decades unconsciously suppressing their Autistic ways of being at enormous cost to their mental health, their energy, and their sense of self as a means of coping with the trauma of being Autistic in a non-Autistic world. These are the people most likely to present as conversationally fluent in a clinical interview. These are also the people most likely to die by suicide (Cassidy et al., 2014).
I note, too, that Frith’s framework of “contraindicators” reproduces exactly the gendered and racialised assumptions that have driven decades of missed and dismissed diagnoses. When she questions whether there is really a “cultural bias against identifying girls and women as Autistic”, comparing this, bizarrely, to psychopathy rates in men, she reveals a fundamental misunderstanding of the structural and cultural mechanisms through which diagnostic bias operates.
There is extensive evidence – not just anecdote – that the diagnostic tools, the behavioural checklists, the presentation criteria, were developed almost exclusively from research on white boys (Loomes et al., 2017; Russell et al., 2022), and this narrow telescopic view is perpetuated ad infinitum. That is not a coincidence. That is the “culture of autism” – the pathological paradigm – in operation. Frith is far behind us Autistic natural and professional researchers: we’ve already read the Swedish study that shows the binary (agreed, problematic framing, as it does not include non-binary or trans people) male-female ratio of Autistic people is equal – Frith is still quoting old ratios of 4:1 and 3:1!
Where Are the Autistic Theorists?
Read the entire TES interview. Notice what is absent. There is not a single mention of an Autistic researcher. Not Damian Milton and the Double Empathy Problem. Not Dinah Murray and Fergus Murray’s Monotropism theory – developed by Autistic people, for Autistic people, to explain Autistic cognition from the inside. Not Rachel Cullen’s Autistic Language Hypothesis. Not the growing body of Participatory Autism Research. Not the work of the Autistic Self Advocacy Network. Not my own work, or the work of any of the other Autistic academics currently reshaping how we understand Autistic experience.
This absence is not incidental. It reflects a research paradigm – the one Frith helped build – that has consistently treated Autistic people as objects of study rather than producers of knowledge. In my presentation Theories of “Autism” and Autistic Theories of Autistic Experience (Farahar, 2022), I set out the contrast directly: on one side, neurotypical deficit theories – behavioural, biological, cognitive – that look at Autistic people from the outside; on the other, Autistic theories developed by Autistic people from lived expertise, which offer entirely richer and more accurate accounts of how we actually experience the world.
The field has moved. Frith has not.
The Culture of “Autism” and the Harm It Causes
In my 2022 chapter in the Routledge International Handbook of Critical Autism Studies, I argue that there are two fundamentally different “cultures” of autism. The first – what I call the “culture of autism” – is the pathological paradigm: Autistic people as disordered, deficient, requiring intervention and cure. This is the culture Frith’s career has perpetuated, contributed to, and embedded themselves in. The second is Autistic culture: a neurodiversity paradigm, a cultural minority framework, in which Autistic identity, community, language, and space are recognised as the foundations of wellbeing.
The harm of the first culture is well-documented. It produces internalised self-stigma and negative self-worth (Botha & Frost, 2020). It leaves people in what I have described as “purgatory” – unable to belong to non-Autistic spaces (even when they mask), and simultaneously unable to find belonging in Autistic community, because they have been taught that being Autistic means being deficient. This is not a minor academic distinction. This is the difference between life and death for a significant number of Autistic people. Autistic people are disproportionately likely to experience suicidal ideation and to die by suicide (Hirvikoski et al., 2016; Cassidy et al., 2014). The pathological narrative – the one Frith continues to promote – contributes to this.
What We Actually Need
We do not need a narrowed, dehumanising diagnostic category. We do not need a scientist “frightened” by how many of us there are. We do not need the spectrum replaced with two crude groups and a set of “contraindicators” designed by a non-Autistic researcher based on her personal, unscientific impressions.
What we need is precisely what my work in the NHS Learning Disability and Autism Programme, and through Aucademy, is working towards: systems, services, and clinical frameworks that are built with Autistic people as decision-makers, not consultees. Frameworks that recognise the fluidity, dimensionality, and lived richness of Autistic experience. Discovery processes that account for masking, for late identification, for the systemic biases that have meant that for decades certain Autistic people – women, people of colour, those without accompanying learning disability – were not counted.
Uta Frith does not speak for this Autistic researcher, or for the Autistic community and their loved ones. Things are changing. We will keep fighting for better lives for those of us who are most marginalised – those of us less likely to be employed, more likely to die by suicide, more likely to be missed, dismissed, or misdiagnosed. We will keep fighting for those in our community who do not currently share reciprocal spoken communication, with or without a learning disability, to be humanised and to access the services and support they – we – deserve.
People like Frith don’t want Autistic people making the changes. But we are. And we will continue to do so.
References
Botha, M. (2020). Autistic community connectedness as a buffer against the minority stress of stigma. University of Surrey doctoral thesis.
Botha, M. & Frost, D. M. (2020). Extending the Minority Stress Model to understand mental health problems experienced by the Autistic population. Society and Mental Health, 10(1), 20–34.
Cassidy, S., Bradley, P., Robinson, J., Allison, C., McHugh, M. & Baron-Cohen, S. (2014). Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic. Lancet Psychiatry, 1(2), 142–147.
Farahar, C. (2022). Autistic identity, culture, community, and space for wellbeing. In D. Milton & S. Ryan (Eds.), The Routledge International Handbook of Critical Autism Studies (1st ed.). Routledge.
Farahar, C. (2026, in print). The Farahar and Foster Three-Dimensional Autistic Space: Dismantling the ‘autism spectrum’ and centring observer bias in the missing, dismissing, and misdiagnosis of Autistic people. In Herbert, R., Shaughnessy, N. & Williams, E. (Eds.), Beyond Autistic Stereotypes: New Perspectives on Identities, Gender, and Experience. Oxford University Press.
Fyfe, C., Winell, H., Dougherty, J., Gutmann, D. H., Kolevzon, A., Marrus, N., … & Sandin, S. (2026). Time trends in the male to female ratio for autism incidence: Population based, prospectively collected, birth cohort study. BMJ, 392. https://doi.org/10.1136/bmj-2025-084164
Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P. & Bolte, S. (2016). Premature mortality in autism spectrum disorder. British Journal of Psychiatry, 208(3), 232–238.
House of Lords (2025). Time to Deliver: The Autism Act 2009 and the New Autism Strategy.
Milton, D. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & Society, 27(6), 883–887.
Murray, D., Lesser, M. & Lawson, W. (2005). Attention, monotropism and the diagnostic criteria for autism. Autism, 9(2), 139–156.
NHS England (2025). Autism-Informed Inpatient Care.
[Please note: there is a blog version, a downloadable essay version, and a downloadable easy-read version, dependent on your reading preferences. Click the heading for easy read and/or essay versions in the content list above]
February 2026 and The Guardian publishes another “autism” article, the hot topic for many news outlets in recent years. This time, informing the public that:
A new diagnosis of ‘profound autism’ is under consideration. Here’s what parents need to know. Category describes people who have little or no language, an IQ of less than 50 and require 24-hour supervision…
The Guardian picked up on the “profound autism” narrative from a Commission piece from 2022, when The Lancet published what it presented as a landmark Commission on the future of care and clinical research in autism. Led by Catherine Lord and Tony Charman, this 64-page document promised to answer a question that matters deeply to Autistic people and their families worldwide: what can be done, right now, to address our needs?
I read it with hope. I finished it with frustration.
I argue that this Commission – for all its scale, for all its data, for all its institutional weight – fundamentally misunderstands what Autistic people need, misrepresents the evidence it claims to champion, and contradicts itself on some of the most critical points it raises. Worse still, it does all of this without meaningful input from the very people it claims to serve.
Nothing About Us, Without Us – Except This, Apparently
Let me start with what should be the most basic requirement for any document that presumes to shape the future of Autistic lives: Autistic involvement.
This Commission lists researchers, clinicians, and a small number of advocates among its contributors. But there is no evidence of meaningful Autistic co-production in its design, methodology, or conclusions. There is no evidence of family involvement in shaping its recommendations. The case studies in Panel 1 – Adir, Franco, Sofia, Samir – are written about Autistic people, not by them. Their stories are told through the lens of parents, carers, and professionals.
This is not a minor oversight. It is a structural failure. The House of Lords’ Time to Deliver report (2025) makes the principle clear: co-production means Autistic people and those who support them have an equal role in designing and delivering policy and services. As Stephen Kinnock MP put it, any strategy developed in the “ivory tower of Whitehall or Westminster” – or, one might add, the ivory tower of academia – without genuine co-production is “doomed to fail.”
The Commission talks about Autistic people. It does not talk with them. And that distinction matters enormously when you are proposing new categories, new labels, and new frameworks that will shape how Autistic people are understood, treated, and resourced for decades to come.
The “Profound Autism” Problem
The Commission’s most controversial proposal is the introduction of a new administrative term: “profound autism.” This would apply to Autistic people who require 24-hour access to a carer, cannot be left alone, and cannot manage basic daily needs independently. The Commission defines this not by Autistic characteristics, but by co-occurring learning disability (an IQ below 50) and/or being non-speaking or minimally speaking.
I want to be direct about what is happening here. This term does not describe a type of autism. It describes the intersection of autism with other experiences and conditions that have their own research bases, their own communities, and their own needs. By collapsing everything into a single label attached to autism, the Commission obscures rather than illuminates the support needs involved. It reinstates functioning labels by another name – precisely the binary that the Autistic community has spent years explaining is harmful – and then wraps it in the language of advocacy, as though pathologising people more thoroughly is somehow doing them a favour.
A Commission That Contradicts Itself
Here is what strikes me most forcefully about this document: it contradicts itself on one of the most fundamental points it raises.
On page 274, the Commission states clearly that “the presentation of autism changes over time, requiring different interventions across the life span.” It discusses heterogeneity at length. It acknowledges that clinical presentations vary, that needs fluctuate, and that early childhood profiles do not reliably predict adult outcomes. It even notes that some children initially meeting “profound autism” criteria moved out of that category between the ages of 9 and 18, as a result of changes in language and cognitive development.
And then, in the very same document, the Commission proposes a fixed diagnostic sub-category – “profound autism” – defined by static criteria applied from early school age onwards. It acknowledges, almost in passing, that this term is “not appropriate for young children” because presentations change. But it still proposes it as a stable, lifelong administrative designation.
Quite simply, you cannot simultaneously argue that autism presentations are fluid and then propose a fixed label based on a snapshot of ability at one point in time. These two positions are logically incompatible. The Commission appears not to notice this contradiction, or if it does, it does not resolve it.
Women Don’t Have “Different Autism” – They Experience Different Prejudice
The Commission’s treatment of gender is another area where the framing goes wrong. Throughout the document, there is an implicit suggestion that autism may present differently in women and girls – that there is something about “female autism” that warrants separate investigation.
I want to be clear: there is no “female autism.” There is autism. What differs is not the neurology, but the response to it. Women and girls (and non-binary and trans people) are subject to different societal expectations, different diagnostic biases, and different forms of prejudice. They are more likely to mask. They are more likely to be misdiagnosed with borderline personality disorder, eating disorders, or anxiety conditions before anyone considers autism. They are more likely to have their needs dismissed.
This is not a neurological difference. It is a prejudice difference. It is neurosexism playing out in diagnostic systems that were built around a narrow, male-centric prototype of autism. And when a Commission of this stature frames the issue as though women have a different “presentation” of autism, rather than naming the systemic bias that causes them to be missed, it reinforces the very problem it claims to want to solve. As the Time to Deliver report heard, better understanding of autism in women and girls is key – but the barrier is not that their autism is different: it is that the systems designed to identify it are inadequate.
The Evidence Problem: Championing Interventions the Evidence Doesn’t Support
Perhaps the most frustrating aspect of this Commission is its insistence on “evidence-based intervention” whilst simultaneously championing approaches for which the evidence is, to put it charitably, weak.
The Commission places considerable emphasis on early intensive behavioural intervention (EIBI) – approaches rooted in applied behaviour analysis (ABA) delivered at high intensity (20 to 40 hours per week) over multiple years. These are presented as among the more “well-established” treatments for autism.
But what does the actual evidence say? The Cochrane Collaboration – the gold standard for systematic reviews of healthcare interventions – reviewed EIBI in 2018 and found precisely this: “there is weak evidence that early intensive behavioral intervention (EIBI) is an effective treatment for children diagnosed with autism spectrum disorders.” The review found no evidence that EIBI reduces the severity of autism or changes so-called “problem behaviour.” The evidence quality was rated as low to very low, based on just five studies, only one of which used a randomised controlled design.
Let me say that again. The Commission positions itself as a champion of evidence-based practice – and then promotes interventions that Cochrane reviews describe as weakly evidenced. This is not merely inconsistent. It is the kind of inconsistency that has real consequences for Autistic children and their families, who may be directed towards intensive, expensive, and potentially harmful programmes on the basis of a prestigious Commission’s endorsement.
And the Commission does not engage meaningfully with the growing body of evidence – including from Autistic researchers and the Autistic community – suggesting that ABA-based approaches may cause psychological harm. The Commission does not address this. It does not wrestle with the ethical implications of subjecting young Autistic children to 40 hours a week of compliance-based training. It simply assumes that more intervention, delivered earlier and more intensively, is better. This assumption is not supported by the evidence it claims to value.
What Should Have Been Written Instead
This Commission had the resources and the platform to do something transformative. What it should have done is centre the question that the neurodiversity paradigm asks: not “how do we change Autistic people?” but “how do we change the environments that disable them?”
It should have started from the principle that Autistic people – all Autistic people, including those with learning disabilities, those who are non-speaking, and those who need lifelong support – are whole human beings whose quality of life depends far more on the environments they inhabit and the support they receive than on any category we attach to them.
It should have engaged with the evidence on what actually improves Autistic wellbeing: community, belonging, Autistic identity, accessible environments, and relationships built on understanding rather than compliance. It should have asked Autistic people – genuinely, meaningfully, as co-producers and decision-makers – what they need. And it should have held itself to the same evidence standards it demands of others, rather than endorsing behavioural interventions that its own cited evidence base does not convincingly support.
Ultimately, the word “profound” in this Commission should describe the change we commit to making – not the label we attach to the people who need it most.
Dr Chloe Farahar is an Autistic researcher, educator, and Programme Manager for the Learning Disability and Autism Programme at Kent and Medway Mental Health NHS Trust.
References
Bottema-Beutel, K., Kapp, S.K., Lester, J.N., Sasson, N.J. and Hand, B.N. (2021) ‘Avoiding ableist language: Suggestions for autism researchers’, Autism in Adulthood, 3(1), pp. 18–29.
House of Lords Autism Act 2009 Committee (2025) Time to Deliver: The Autism Act 2009 and the New Autism Strategy. London: House of Lords.
Lord, C., Charman, T., Havdahl, A. et al. (2022) ‘The Lancet Commission on the future of care and clinical research in autism’, The Lancet, 399(10321), pp. 271–334.
NHS England (2025) Autism-Informed Inpatient Care. London: NHS England.
Reichow, B., Hume, K., Barton, E.E. and Boyd, B.A. (2018) ‘Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD)’, Cochrane Database of Systematic Reviews, Issue 5, Art. No.: CD009260.
Walker, N. (2021) Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment and Postnormal Possibilities. Fort Worth: Autonomous Press.
