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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.
