A Commentary
Lori Hogenkamp
Center for Adaptive Stress
There is a story we tell about autism research. In this story, there are two kinds of people: those who study autism and those who live it. The researchers observe, measure, and theorize. The autistic people report, disclose, and narrate. These are understood as fundamentally different activities—one scientific, one experiential—and the boundary between them is rarely questioned.
I want to describe what happens when that boundary dissolves.
I am an autistic independent scholar. I have spent the past two decades developing what I now call the Evolutionary Stress Framework, a theoretical architecture that applies complexity science to stress physiology and neurodevelopmental variation. But I did not begin with complexity science. I began with my own body.
The Inward Path
Before I had language for any of it, I had the experience. I knew that my stress responses were not what other people described. I knew that sensory environments did not merely annoy me—they reorganized my capacity to function. I knew that the standard advice for managing stress—breathe, reframe, push through—did not land on the same physiology it was designed for. These were not opinions. They were observations, as concrete and reproducible as anything measured in a laboratory. I simply had no way to say them in language that anyone with institutional authority would recognize.
So I started asking questions. Not the questions researchers typically ask—not “what is wrong with this population?” but “why does my nervous system do this, and what would it mean if this were functional rather than broken?” I went into the literature looking for words, and I found something stranger and more powerful than words. I found that researchers working from entirely different starting points—allostatic load theory, complexity science, constructed emotion, the free energy principle—were building models that converged on the architecture I was living inside.
This is worth pausing on. I did not learn their frameworks and then apply them to my experience. I recognized my experience in their frameworks. The distinction matters enormously.
The Outward Path
Researchers, by professional necessity, work in the other direction. They build models from data, then reach outward toward the lived reality those models are meant to describe. This is not a flaw—it is the structure of empirical science. But it creates a characteristic gap. The model is always an approximation of the thing. The map is not the territory. And in autism research specifically, the gap between model and territory has been vast, because the models have historically been built by people who do not inhabit the territory they are mapping.
The double empathy problem, as Milton (2012) articulated it, is usually discussed in the context of clinical interaction. But it operates just as powerfully in the research context. When a non-autistic researcher designs a study of autistic sensory processing, they are constructing a measurement apparatus from within one cognitive architecture to detect signals generated by a different one. The resulting data is real, but the interpretive frame—the story told about what the data means—is shaped by the architecture doing the interpreting.
This is not a criticism. It is a structural observation. And it is precisely why the convergence I am describing matters.
Meeting in the Middle
When I say I used the words of other researchers to describe my experience, I am not describing the familiar process of an autistic person finding validation in a journal article. I am describing something with epistemological weight. If a person working inward from lived experience and a researcher working outward from formal models arrive independently at the same structural description—not the same metaphor, not the same sentiment, but the same functional architecture—that is convergent evidence of a kind that neither path can produce alone.
Consider what each path provides that the other cannot. The researcher offers formal precision, falsifiable predictions, and integration with existing bodies of knowledge. The lived-experience theorist offers something equally essential: ground truth. They know whether the model’s predictions actually obtain in the system the model claims to describe. They can identify where the map diverges from the territory—not because they have read a different map, but because they are the territory.
This is not the same as saying “autistic people should be consulted in research.” That claim, while important, still preserves the researcher/subject boundary. It positions the autistic person as an informant—a better informant, perhaps, but still someone whose role is to supply data for someone else’s theoretical apparatus. What I am describing is the autistic person as theorist, arriving at structural claims through a different epistemological path that is no less rigorous for being experiential.
Independent Triangulation
In the philosophy of science, convergence from independent methods is considered among the strongest forms of evidence. When multiple instruments, each with different biases and limitations, point to the same phenomenon, our confidence in the reality of that phenomenon increases dramatically. This is the logic of triangulation.
What I am proposing is that lived-experience scholarship and formal empirical research constitute independent methods in precisely this sense. They have different biases, different blind spots, different access to evidence. When they converge, the convergence is not redundancy—it is mutual validation. And when they diverge, the divergence is not a hierarchy to be resolved by deferring to the method with more institutional prestige. It is a signal that something interesting is happening at the boundary between the map and the territory.
In my own work, this convergence has been striking. The concept I call regulatory bandwidth—the idea that neurodevelopmental variation produces not different levels of capacity but different architectures of capacity, with characteristic robustness-fragility trade-offs—emerged from years of tracking my own functional patterns. I did not derive it from Csete and Doyle’s work on robustness-fragility trade-offs in complex systems, or from Kitano’s analysis of biological robustness. I arrived at the same structural insight and then found their formalisms waiting, ready-made, to give it mathematical precision. The felt knowledge and the formal knowledge were not the same thing. But they were about the same thing.
Who Gets to Theorize?
The neurodiversity paradigm, at its best, does more than advocate for acceptance. It makes an epistemological claim: that the people who inhabit neurodevelopmental variation have access to knowledge about that variation that is not available from the outside. This claim is sometimes treated as a political position. It is, in fact, a straightforward implication of how complex systems work. The observer and the system are not separable. The vantage point from inside the system reveals dynamics that external measurement, however sophisticated, will always underspecify.
But this epistemological claim has practical consequences that the field has been slow to absorb. If lived experience constitutes a legitimate path to theoretical insight—not merely to narrative or testimony—then the community of autism researchers is larger than the set of people with university appointments and grant funding. It includes the autistic people who have been doing the work of theory-building in kitchens and blog posts and late-night pattern recognition, often without knowing that what they were doing had a name.
I do not say this to romanticize the autodidact or to suggest that formal training is unnecessary. The literature I drew on—Friston, Barrett, Prigogine, Thelen and Smith—required sustained, disciplined engagement. The crevice between felt knowledge and formal language is real, and crossing it took me twenty years. What I am saying is that the crossing is possible, that it produces knowledge the field needs, and that the field’s institutional structures are not yet designed to recognize it when it arrives.
From this perspective, lived-experience scholarship is not ancillary to autism science but an independent epistemic instrument with access to classes of evidence that external observation alone cannot fully resolve.
An Invitation
This commentary is not a methodological proposal. It is an observation about what has already happened, and what it might mean. The lived-experience scholar and the empirical researcher are not opposing camps. They are two people walking toward the same place from opposite directions. When they meet—when the observer becomes the researcher and the researcher becomes the observer—they do not need to resolve which path was more legitimate. They need only compare notes and notice that they are describing the same landscape.
The fact that this convergence is possible should change how we think about who contributes to autism science, what counts as evidence, and where theoretical insight comes from. It has already changed my life. I started with questions I could not articulate, and I ended up—through years of reading and pattern recognition and stubborn refusal to accept that my experience was merely anecdotal—in the same place the researchers were trying to reach. They were trying to touch the lived reality. I was trying to name it. We arrived together.
That is not a coincidence. That is how you know you are close to something real.
References
Barrett, L. F. (2017). How emotions are made: The secret life of the brain. Houghton Mifflin Harcourt.
Csete, M. E., & Doyle, J. C. (2002). Reverse engineering of biological complexity. Science, 295(5560), 1664–1669. https://doi.org/10.1126/science.1069981
Friston, K. J. (2010). The free-energy principle: A unified brain theory? Nature Reviews Neuroscience, 11(2), 127–138. https://doi.org/10.1038/nrn2787
Harding, S. (1991). Whose science? Whose knowledge? Thinking from women’s lives. Cornell University Press.
Hogenkamp, L., Sanghavi, D., & Natri, H. (2026). Toward an emergent paradigm for neurodiversity and health. Autism in Adulthood. Advance online publication. https://doi.org/10.1177/25739581261433443
Kitano, H. (2004). Biological robustness. Nature Reviews Genetics, 5(11), 826–837. https://doi.org/10.1038/nrg1471
Longino, H. E. (1990). Science as social knowledge: Values and objectivity in scientific inquiry. Princeton University Press.
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
Nicolis, G., & Prigogine, I. (1977). Self-organization in nonequilibrium systems: From dissipative structures to order through fluctuations. Wiley.
Thelen, E., & Smith, L. B. (1994). A dynamic systems approach to the development of cognition and action. MIT Press.
Walker, N. (2021). Neuroqueer heresies: Notes on the neurodiversity paradigm, autistic empowerment, and postnormal possibilities. Autonomous Press.
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