Saying that autistic people who question the current paradigm of neurodivergence are seeking proof of a superpower does real harm. Diagnostic criteria are a snapshot. To refer to the snapshot as reality, without considering the hand that crafted the lens it was taken with, and for whose benefit, or what it distorts, cannot be seen as anything other than harmful to an understanding of complex systems.
Downstream of that, to then force people to identify with a disability designation that hints at accommodation, while the already meager care infrastructure is being actively dismantled by a government that wants to put autistic people on a list and ‘cure’ us, while at the same time removing funding from research that doesn’t agree with their agenda… to watch this all unfold is beyond heartbreaking. It’s criminal and cruel, and to enter neurodiversity justice spaces and hear the rhetoric from people who are claiming to advocate for the best interests of autistic people is just another example of the gaslighting being replicated by the gaslit.
It’s also understandable. We work from the models we’ve been given to work with. We recognize that there are privileged people and marginalized people. It seems to make sense to keep the structure intact and simply reset the algorithm to bring marginalized people in. But the system depends on there being marginalized people, and changing the algorithm simply shifts the suffering onto a different group of people. If we want equity to work, for real and for everyone, we need to learn how to work together differently.
Western science is good at some things, but it is also a paradigm that is easily gamed. What question we choose as a thesis determines the field of inquiry, the variables we can see (and the ones we can’t from our viewpoint), and the output is a snapshot. If we limit our questions to support a funding requirement, a political climate, a class preserving mechanism, or a corporate agenda, the snapshot is distorted, and this has real consequences.
I live in Berkeley California. Do you know how many people I have crossed paths with who are engaged in a research project that is losing funding due to the political climate? Let’s just say that we are not living in a time when good information is on the ascendancy, even at the academic level. I know people whose whole departments are fundraising to keep the lights on, and funders are not neutral.
In hostile times, it’s time to circle the wagons and protect the children within. The wagons here are perhaps a poor metaphor, being a symbol of colonial expansion. But what works is the idea of a circle protecting the future health of our community. The civic infrastructure that was supposed to protect us is being dismantled and defunded, along with the research institutions that were ostensibly designed to help us describe ourselves in ways that align with our nature.
But there is so much we can do if we train ourselves to abandon those decaying structures and find support through cooperation. Tōjisha Kenkyū is a self-study paradigm developed by people in the mental health community in Japan, who recognized that the stories being told to them by clinicians did not match their experiences nor provide support in the ways they needed. Through deep inquiry and information sharing, people working in this modality are learning bottom-up strategies and new language that allows them to access mutual support and offer more effective advocacy.
Every healthy community has access to its own story, that changes and unfolds within its very ecosystem. The questions that arise might not fit a funding landscape, but mutual support makes things possible that top-down institutions won’t.
The understanding of neurodiversity is in its infancy relative to Western scientific paradigms. As far as I can tell, the word neuronormativity only emerged within this century. Paradigms this new are bound to experience shifts that change the landscape of our understanding. When I hear people in the neurodiversity community loudly advocating for top-down paradigms that view neuronormativity as a standard of human growth and ability, and neurodivergence as a collection of abberant deviations from the norm, I can’t help but wonder who they are representing, and why they feel so confident in articulating the boundaries of an emerging paradigm.
Nature has amazing ways of achieving balance in a changing ecosystem. The whole reason we look like we do, and not like our ancestors Australopithecus, is that we diverged. Does that make us disabled versions of our ancestors? No. Evolution is a series of mistakes, that sometimes end up being helpful to the community, even as they are divergent from what came before.
Sometimes, what’s helpful to the community is someone tall enough to reach a food source inaccessible to most, and perhaps communities who had a few statistical outliers in height were more successful. In the context of industrial productivity, maybe the tall ones are just a liability, but is that the driver of change we want to follow? Look what doing so has done to biodiversity on the planet.
Sometimes what’s helpful might be someone with sensitive hearing, who can hear the approach of a predator or track game hidden in the canopy. Again, in an office, they are just seen as annoying, asking for accommodation again. Sometimes what’s helpful might be someone who thinks differently. When I think of the process of getting nutrition out of cassava, I wonder who on earth would have the patience and determination to figure that out. I’m sure it wasn’t one person, and parts of the process probably unfolded over centuries. But it’s not hard to imagine that at some point in the process, someone with cognitive differences might have thought to try something new. That’s not evidence of a superpower. It’s a person working the way they work, in the context of a team that values them. That’s the person we all know who we find frustrating, because their thinking seems so contrary.
In a society that’s not conforming to an origin story that pathologizes differences and that recognizes that through drought and famine and herd depletion and times of bounty, differences in the community are an asset, not a liability. They might develop ways of doing things that build respect for these differences. If we look at the practices of various cultures we can actually see that this is true.
Are autism advocates who advocate for the model of neurodivergence as a deviation from neuronormativity simply trying to practice realpolitik in social terms, accepting that industrial agriculture, production, and the administrative mechanisms that support them are the way it will always be, and we should engineer ourselves to align with that reality? If so, count me out. That’s the project I thought we were trying to abandon at all costs. If not, where does your confidence come from, and why does it feel so much like a story we’ve heard before, that got us into this mess?
