Lori Hogenkamp | Center for Adaptive Stress | evostress.blog
I drafted this piece in March, in the days after Dame Uta Frith’s TES Magazine interview declaring that the autism spectrum had “widened to the point of collapse.” I never published it. I am publishing it now because two events this past week — Damian Milton’s plenary at INSAR in Prague, and the Interagency Autism Coordinating Committee’s first meeting in Bethesda — have moved the stakes from philosophical to federal. The argument has not changed. The need to make it has only sharpened.
Two Events, Four Days Apart
On Friday, April 24, in Prague, Damian Milton gave the Slifka-Ritvo plenary at INSAR’s 25th annual meeting on the current empirical evidence for the double empathy problem — the framework, originating in his 2012 paper, that locates communication breakdown between autistic and non-autistic people as a bidirectional phenomenon rather than a deficit residing inside the autistic person. The framework has been gathering replication for over a decade. Elevating it to the field’s most prominent platform was significant. It is also, in its quiet way, an argument against the cognitive-deficit foundation that every proposal to split the spectrum ultimately rests on.
On Tuesday, April 28, in Bethesda, the newly reconstituted Interagency Autism Coordinating Committee held its first public meeting under HHS Secretary Robert F. Kennedy Jr. and voted to urge HHS to formally adopt a federal research and policy designation for “profound autism.” The proposal was drafted in secret. The agenda was not released until the Friday evening before. Public comment had closed two weeks earlier, before the topic was known. Several federal members said on the record that they had not had time to review the materials with their agencies before being asked to vote. The Autistic Self Advocacy Network, which has consistently opposed the term, was not on the committee. The new IACC has three autistic members, down from seven on the previous panel, and no representation from the autistic-led advocacy organizations that had a seat at the table for over a decade.
Four days apart. One event elevated the empirical case against locating autism’s communicative dimensions inside a presumed deficit. The other formalized that very deficit framing in federal policy.
The piece that follows was written in March, when the splitting debate was still philosophical — a conversation among researchers, advocates, and journalists about how to organize a diagnostic category. It is no longer philosophical. The IACC did not invent this move. Frith did not invent it either. Both are working downstream of a model that has been straining for years against what it cannot hold. Drawing better fences will not help. The model itself is what is collapsing.
The pressure has been building for years. In 2021, the Lancet Commission on the Future of Care and Clinical Research in Autism introduced the term “profound autism” — intended to carve out autistic people who require 24-hour care, have significant intellectual disability, and are nonspeaking or minimally verbal. The Autism Science Foundation and the Profound Autism Alliance subsequently funded a formal consensus process to define the term rigorously. The CDC has estimated that roughly a quarter of autistic people may meet those criteria. Researchers who had long felt that the most profoundly disabled autistic people were disappearing inside a category that also included verbally fluent professionals welcomed the move toward specificity.
In October 2025, the New York Times ran a major feature — “Should the Autism Spectrum Be Split Apart?” — bringing the debate to a mainstream audience and crystallizing a tension that has been fracturing the autism community for some time: the tension between those advocating for people who need lifelong intensive support, and those advocating for recognition, autonomy, and accommodation across a much wider range of autistic experience. Both groups have legitimate needs. Both are exhausted. And the diagnostic framework they are fighting over is increasingly serving neither of them well.
Then in March, Dame Uta Frith — one of the founding architects of autism cognitive science, who helped establish theory of mind as central to autism, who translated Hans Asperger’s 1944 paper into English, who helped extend the spectrum concept in the first place — said publicly in TES Magazine that she no longer believes autism is a spectrum. The interview argues that the spectrum has “widened to the point of collapse,” that a fast-growing cohort of verbally fluent adolescents with social anxiety and hypersensitivity belongs in a different diagnostic category, and that masking has no scientific basis at all.
The IACC vote last week was the policy consequence.
The Crisis Is Real. And So Is the Brilliance.
This is not a fringe moment. These are serious researchers, serious organizations, and serious advocates responding to a genuine crisis in the field. The frustration is legitimate. The stakes are real. People with profound support needs are being lost in a category that has stretched beyond clinical usefulness. Late-identified autistic people are being dismissed. Clinicians are overwhelmed. Families are exhausted. Researchers cannot replicate findings across populations too heterogeneous to be treated as a single group.
All of that is true.
And the researchers who built this field are brilliant. Uta Frith, the Lancet Commission authors, the clinicians and scientists who have devoted careers to understanding autism — they have done extraordinary work inside the frameworks available to them. The limitations they are hitting are not limitations of their intelligence or their dedication. These are limitations of the model. And that distinction matters enormously, because blaming the people is not only unfair — it misses the point entirely.
Brilliant people working inside a limited framework will always eventually hit a wall. That is not failure. That is the natural boundary of a paradigm approaching the end of what it can explain.
What these researchers need — what the whole field needs — is not more refined categories. It is more room. A framework with enough dimensionality to hold what they are actually seeing.
The Problem Was Never the Size of the Category
Every solution currently being proposed — “profound autism,” tighter criteria, reserved labels, behavioral thresholds, splitting the spectrum — is working inside the same underlying framework: find the right fence line, draw it more carefully, and the incoherence will resolve.
It won’t.
Because the incoherence isn’t a product of poor boundary management. It is a signal. A signal that we are using a categorical, linear instrument to describe something that is fundamentally nonlinear.
What we call autism isn’t two groups. It isn’t even a spectrum — a single dimension running from more to less. It is a landscape.
A Landscape, Not a Line
A multidimensional regulatory terrain with many valleys, many peaks, many basins of attraction that a developing nervous system can settle into depending on genetics, epigenetics, early environment, sensory history, relational context, trauma, culture, and the energy demands of navigating a world that wasn’t calibrated for that system.
In complexity science, we call these attractor states. A developing nervous system doesn’t land in one fixed place determined by a single cause. It moves through a landscape, settling into stable configurations based on what the environment demands and what the system has available to spend.
Some of those basins are deep and narrow. The system settles early, the regulatory signature is visible almost from birth, and the support needs are profound and lifelong. These people are real. Their needs are urgent. The frustration of their families and caregivers is completely legitimate.
Some basins are shallower, or reached later, or become visible only under particular environmental loads — the energy cost of adolescence, chronic stress, sustained masking in a mismatched world. These people are also real. Their experiences are also valid. The exhaustion of performing neurotypicality across decades is not a personality quirk. It has a physiological signature.
Some people occupy basins that look similar from the outside but have completely different regulatory architectures underneath. Some occupy basins that feel vastly different on the inside but appear similar to external observers.
This is not diagnostic sloppiness. This is what a genuinely nonlinear, developmentally sensitive, energy-constrained biological system actually looks like.
The spectrum didn’t collapse because we were too generous with who we let in. It collapsed because a line — even a very carefully drawn line — will never be sufficient to describe a landscape.
And the answer to a line that isn’t working is not two lines.
It’s a map.
Not a fence that keeps some people in and some people out — but a topographic map of regulatory variation that can tell us where someone is in the landscape, what kind of support their position requires, and what environmental and physiological changes might shift the costs they’re carrying.
The tools to build that map already exist. Complexity theory, developmental systems theory, allostatic load research, stress physiology, epigenetics — these fields have been developing the scaffolding for decades. The science is not waiting for us. We are waiting to apply it.
The Framework Underneath
I have been working on this for a long time. The Evolutionary Stress Framework began as a graduate thesis in 2004 — an early and clumsy attempt to argue that autism was a systems phenomenon rather than a deficit. The vocabulary did not yet exist for what I was trying to say. The vocabulary exists now. Complexity science has matured. Developmental psychobiology, allostatic load research, the free energy principle, biological robustness theory, interoceptive-allostatic models — these have converged, over the past two decades, into something that can hold the variation the categorical model keeps fracturing on.
The first peer-reviewed piece of that framework appeared in Autism in Adulthood this year. “Toward an Emergent Paradigm for Neurodiversity and Health,” co-authored with Dhwani Sanghavi and Heini Natri, makes the foundational claim explicitly. Autism, on this account, is an emergent neurotype: a developmental profile produced by the interaction of underlying bio-neurotype, stress-energy regulation, developmental timing, and environmental fit. Not a category. Not a single dimension. A manifold — a space of possible trajectories within which a developing system settles into a coherent configuration given what it has and what the environment asks of it.
This is not a softer rephrasing of the spectrum. It is a structurally different claim. The spectrum places people on a line. The manifold recognizes that the regulatory architectures producing autistic experience are not variations along one dimension but genuinely different control architectures — differing in which signals are prioritized, which feedback loops dominate, what counts as overload, what coherence looks like under load. Two nervous systems can process the same input through different regulatory logics and produce different but equally coherent outputs. This is architectural heterogeneity. It is the deeper claim under cooperative neurodiversity: that the species sustains its adaptive capacity by maintaining distributed robustness across genuinely heterogeneous regulatory architectures, not just different calibrations of one.
The same diagnostic move — that the categorical model is collapsing because it cannot hold genuine architectural heterogeneity — is showing up at other scales. Robert Lustig, the metabolic researcher whose work on insulin resistance and chronic disease has shaped the last two decades of nutrition science, has begun arguing that autism and Alzheimer’s are the same disease because they share metabolic signatures. He has the chemistry right. The shared mitochondrial dysfunction, oxidative stress, and disrupted autophagy are real. But collapsing developmental emergence and degenerative collapse into a single pathology — because they share substrate — is the inverse of Frith’s move and structurally identical to it. Frith reaches for splitting. Lustig reaches for unifying. Both are working from a framework that cannot hold what is actually two different kinds of event running on the same biological infrastructure. I wrote about that case last week.
The pattern repeats because the assumption underneath repeats. Wherever a single baseline architecture is quietly treated as the standard, variation reads as deviation, and deviation slides toward pathology — or toward a categorical fence drawn somewhere along the deviation. This is the hidden average problem. It is not a flaw in any one framework. It is a feature of how science organizes itself when the object of study is an emergent property of heterogeneous components and the tools have been calibrated for the components alone.
What complexity evolution offers, and what the ESF tries to make usable in clinical and policy work, is a different starting point. Variation is not noise to be eliminated or sorted. It is response capacity, held by the species across changing conditions because no single architecture solves every regulatory problem the future will pose. The high-gain regulatory profiles associated with autism, ADHD, and related configurations carry real metabolic costs and narrower margins for overload. They also carry forms of pattern recognition, integration, and perceptual fidelity the rest of the architectural portfolio cannot produce. The cost and the contribution share a mechanism. They are not separable, but neither is guaranteed. Which one a given person lives depends on environmental fit, regulatory support, and whether the architecture has the resources to operate within its bandwidth.
This is the framework that holds both the child who needs 24-hour care and the adult who spent decades not knowing why the world felt so costly. Not because they are the same. Because the landscape is large enough to hold both — and large enough to explain why the same regulatory substrate produces such different lives depending on the conditions it has had to navigate.
The splitting debate is the model failing to do work it was never built for. The framework underneath is finally arriving — peer-reviewed, citable, and large enough to do the work the categorical model cannot.
The Shift Is Coming
I say this with deep respect for every researcher, clinician, advocate, and parent who has poured their life into understanding autism within the frameworks available to them. The people calling for splits and tighter categories are not wrong about the problem. They are working as hard as they possibly can inside a model that was never built for what they are actually looking at.
That is not their failure. That is a paradigm doing what paradigms do under pressure: doubling down before shifting.
And when the shift comes — both the child who needs 24-hour care and the adult who spent decades not knowing why the world felt so costly — they will both make sense on the same map.
Not because they are the same. But because the landscape is large enough to hold both.
You were never just a category. You were always a system.
And finally, in systems, we are learning to read.
Lori Hogenkamp is the Director and Founder of the Center for Adaptive Stress (CAS), a nonprofit conceptual systems research organization developing the Evolutionary Stress Framework — a complexity science approach to stress physiology, neurodiversity, and health.
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