all of the reasons to hate ai and to love ai are valid, to a point. it does things for us that are helpful to have done for us. it does things to us that are harmful to have done to us.
the main thing we should focus on is what it requires of us. it requires that power be centralized in such a way that concerns about water and land use are deprioritized. it requires that people who don’t have our best interests in mind influence elections. it requires that we relinquish our rights to our own ideas in the tos agreement required to use it.
ai is not local: it requires centralized control of a vast network of resources from around the globe. it doesn’t fit in a backpack.
ai is not democratic: the algorithms that deliver it’s results are designed by a small team that does not answer to us. it doesn’t respond to community review.
ai is not neutral: it’s knowledge base is a collection of writings that represents centuries of colonizers writing about encounters with beings deemed lesser. it doesn’t weight indigenous voices higher.
ai is not embodied: nothing in its database includes information that can only be experienced through the senses. it didn’t smell what you smelled.
ai has not experienced loss: it can tell you what grieving people have said, but it cannot experience their pain, and console you in the ways that only someone who has experienced loss can console you. it can’t adjust the way you’ve adjusted.
ai has never attended a birth, nor tasted the final breath of a loved one. it doesn’t know the poem your mother needed to hear for comfort.
ai is a performance by someone who was never there, but who requires you to hand over all rights to land, water, minerals, species diversity, diplomatic nonpartisanship, labor justice, bioregional congruity, indigenous stewardship, ecosystem integrity, economic equity, cultural heritage, family legacy, intellectual architecture, emotional elaboration, and environmental renewal.
There’s a mindset I keep seeing—in Buddhist sanghas, autism advocacy, establishment political discourse. I call it ‘cognitive centrism’—inhabiting a kind of middle ground, not because one felt their way there, but because they computed it. Like cognitive empathy: decode, then perform the answer. Here’s what it looks like:
Someone defending an argument gets confronted with some element of it that is clearly biased or harmful in some way: and instead of recognizing the bias, they average it away. “It’s just a tool, depends how it’s used.” “Complicated legacy.” “Incremental change.” Not malice—more like a reflex. It gets you to the neighborhood of fair, but it never actually results in justice.
Why it won’t move under pressure: it’s not holding an opinion, it’s holding a posture: suspension of judgment. “Don’t judge the tool—it’s just doing its job.” It’s a kind of adaptive compartmentalization, aka spiritual bypass. You can hand it more evidence of the tool’s bias forever, but evidence isn’t the input it’s built to take. “You don’t want to know how the sausage gets made” is the operative logic here.
The principle of charity—give the tool the benefit of the doubt in all cases—gets redeployed to make assessment of the tool unreachable. “It’s just a tool” doesn’t just interpret the DSM charitably. It moves the DSM one level up, to a place evidence can’t reach. Likewise, the teacher is not judged for their methods; the party is just gathering consensus. It’s the sincerity that makes its effectiveness as a thought-stopper durable. And dangerous.
Does this mean every accusation destabilizes the institution—that we accommodate every harm as if it delegitimizes the frame? No. It means the accusation gets the same weight the tool got by default. Currently, the tool is presumed innocent past evidence, and the accusation deemed exaggerated before it’s heard. That’s not two neutral positions—it’s asymmetry, running both ways. The fix isn’t reversing it. It’s judging each on its own merits, and refusing to punch down.
The corrective: redirect the benefit of the doubt—not to the tool, but to whoever the tool lands on.
In sangha: stop protecting the teacher’s legacy. Protect the student who was in the room. The lineage doesn’t need your benefit of the doubt—she does.
In diagnosis: stop defending the DSM’s neutrality. Defend the person it mislabeled. The manual isn’t hurt by scrutiny. The misdiagnosed patient is hurt by the denial of scrutiny.
In party politics: stop calling it consensus-building. Ask who consented, and who just got averaged in. The party isn’t harmed by the question. The constituent is telling you where harm landed.
Benefit of the doubt isn’t wrong—it’s just often aimed one level too high. Aim it down, and the people who need it are served.
We just accidentally corrected the mistake of trickle-down economics. Sit with that.
How Making Sense of My Child’s Cannabis Use Helped Me Understand The Beauty of Human Adaptation
Does Domestication of the Human Species Really Represent Our Shared Future on the Planet?
My almost-adult child is a gifted and challenged person, navigating the transition to adulthood in post-industrial American society. They’re a systems thinker, who aces every test, and who also can’t sit still or conform to the demands of a quiet workplace or a grid-based schedule. They often miss appointments due to oversleeping, and sometimes sleep for periods that don’t align with respectable industrial grid time.
They are highly engaged in any task at hand, but have difficulty playing the long game of connecting with a regular schedule. They pick up new skills very quickly, but express little interest in developing any of those skills into something that, in a modern context, looks like a career.
The environments they express the most affection for are highly cooperative: soccer is a big one; skateboarding in community, where peers are moving together, both in synchronous and asynchronous formations; making public art in strategically complex spaces, that require collaboration to envision, coordination to plan, and cooperation to execute. They are the epitome of the team player, as long as the team has a clear plan that serves the collective need for transparent and direct expression of experience in a creative and innovative way.
Making Sense of the Early Adult Drive for Autonomy and Relevance
My child’s challenges have moved them toward strategies to mitigate those challenges, and cannabis has been a recurring strategy that serves some need.
As an engaged parent, who is trying to nurture their adult child’s independence, while managing my alarm when witnessing behaviors that appear problematic, or as leading toward future failure to integrate into the workplace, I’ve been trying to make sense of what I’m seeing: a young person who is fiercely dedicated to their friends; who takes pride in a complex task well-executed; who resists being pigeonholed into existing categories of social, ideological, economic, or aesthetic legibility; and who sincerely wants to play a meaningful role in their community, despite repeated experiences of mismatch with established academic and occupational cultures.
Considering all of this, I’ve been unsatisfied with the ‘just say no’ or ‘avoid this substance because of the potential dangers involved’ frameworks of personal discipline, relative to what I see as cannabis use as substance-scaffolding.
I ask instead, “How is this scaffold serving their needs,” and “what is this person seeking to satisfy, according to the tendencies of their nervous system?”
Asking these questions, and exploring the range of possible resolutions, has caused me to rethink everything I know about individual competence, self-medication, and utility-within-community.
Here’s the story that unfolds in my brain, starting with trying to understand my child’s use of cannabis.
Understanding Cannabis as a Regulation Support
Question: A subset of neurodivergent people find cannabis to be highly regulating. Using current diagnostic frameworks, would we be able to reverse engineer this mechanism and suggest alternative supports for regulation?
Answer (from multiple channels): Diagnostic frameworks don’t code this directly—no DSM category for “cannabinoid-responsive regulation phenotype”—but the mechanistic literature gives us enough to reverse-engineer some plausible pathways, and each one maps to a non-cannabis lever.
The candidate mechanisms, each with its alt-support:
Excitation/inhibition imbalance (the leading cortical model in autism/ADHD research)—the nervous system runs with too much glutamatergic drive relative to GABAergic brake. CB1 agonism works presynaptically to turn down excess signal. Alt-support: deep pressure/proprioceptive input, rhythmic bilateral movement, anything that mechanically dampens throughput rather than trying to out-think it.
Low endocannabinoid tone—some autism research finds blunted anandamide signaling tied to social ease and anxiety regulation. If the system’s baseline ECS is running lean, exogenous cannabinoids are topping up a deficit rather than adding a foreign effect. Alt-support: sustained aerobic movement (the “runner’s high” is partly endocannabinoid-mediated), omega-3s as ECS precursors, consistent touch/massage.
Thalamic sensory gating failure—the filter that should mute irrelevant input doesn’t, so everything arrives undifferentiated and loud. Cannabinoids affect thalamic gating directly. Alt-support: environmental engineering, without pharmacological substitution: reduce raw input volume rather than trying to improve the filter (single-channel environments, structured monotropic focus, noise reduction).
Vagal/parasympathetic underactivation—anxiety compounding the sensory load, cannabis’s anxiolytic effect partly vagally mediated. Alt-support: direct vagal stimulation—humming, slow exhale-longer-than-inhale breathing, cold water on the face.
Dopaminergic under-stimulation(more ADHD-coded)—restlessness eased by mild dopaminergic modulation. Alt-support: novelty-structured tasks, high-engagement movement, body doubling.
Considering this data, relative to the questions that framed my inquiry, here’s how I connect the dots when I choose to view my child as perfectly-abled, rather than disabled, and here’s how I attempt to contextualize this for my community.
Greetings, esteemed community:
I compiled this explanation of how cannabis helps regulate the neurodivergent nervous system. This all maps very cleanly onto our child’s character, and shows why they miss soccer so much (missing as ‘longing for,’ and not ‘fails to show up for.’ I think you get my meaning, but it’s good be precise where language suggests multiple meanings).
This all points to running (‘rhythmic bilateral movement,’ ‘sustained aerobic movement’), with intense interest-based focus (‘structured monotropic focus,’ ‘high-engagement movement’) and cooperative participation (‘high-engagement movement,’ ‘body doubling’) as being the the regulation supports they are reaching for, or the activities that they are predisposed to seek in making their character meaningful in a human community engaged in dialogue with a natural environment.
Basically, our child shows the collection of ecological adaptations that would enable ice-age hunter-gatherers to hunt and bring down a wooly mammoth, as a source of food and raw materials for clothing, shelter, and tools. Mammoths were herd animals, much larger than humans, with thick skins and wooly coats that were very difficult to pierce with the projectiles of the time—wood or bone projectiles that were either sharpened or had separate affixed bone or stone tips specialized for cutting/piercing.
Bringing down a mammoth would require a high degree of coordination and sustained movement by a group of humans—to first isolate an animal from the herd; bombard it with a number of projectiles, none of which would be able to kill the animal on its own, but only weaken it when applied in numbers; and then chase the animal until it was weak enough to be able to approach directly, to apply severing cuts with stone knives at strategic points, to bring on death. Then, the animal had to be processed fairly quickly, before bacteria, insects, and scavengers moved in to take their share.
The Mental Health Day
This coordinated activity would involve great risk-taking, and sublimation of fear-response. In other words, badass individuals engaged in a life-or-death struggle to meet the needs of their community.
Engaging in this way would have resulted in a huge output of energy in a specific time period, that would likely extend beyond one cycle of dawn-to-dusk; which could not be segmented into work hours that resemble modern industrial time cycles of work and rest; by an individual who could literally measure their life by their proximity to such a resource as a mammoth herd. The individuals involved in this project would have needed extended periods of rest to recover from the endeavor, perhaps spanning multiple day-night cycles; and the community would have been happy to oblige, considering the benefit of their energy expenditure to the community.
Where Do We Go From Here?
in the context of domesticated society, none of our child’s particular traits make sense. but our period of domestication has been a tiny blip in the overall arc of the human project. human evolution, and adaptation to changing environments, is a very long and slow process, relative to our understanding of adapting to environmental changes within our lifetimes.
Considering those changes, i hope we can find ways to recognize our child’s unique gifts as adaptations that are valuable to the community; to recognize the range of skills required to make the human project work; and to rediscover how a person with these natural predispositions is a valuable contributor to their community — because of, and not in spite of, their characteristic rhythms and sensibilities.
Thanks for coming to my TED talk, and thank you for your cooperation in this project of nurturing a unique person to be their best self in the rapidly-shifting priorities of life in modern industrial society.
In part one, I explored my mother’s life and work, relative to the social conditions she experienced as a low-income, self-directed woman navigating the public health and housing systems, and asked whether, viewing her life through the arc of 76 years of continuous productivity in the fiber arts, different decisions could have been made resulting in better accommodations and better integration into her community. I asked whether it was worthwhile to reassess our standards of fitness, disability, and disorder.
What are the conditions of disorder in an individual, and at what moment does disorder become a permanent designation, rather than a temporary condition?
Let’s use a slightly less emotionally fraught frame than a human life. Let’s observe some monkey behavior, not because of the monkey’s proximity to humans, as a primate, or because they have been fascinating to science for that reason, but because the monkey is my mother’s Chinese astrological sign, and she would like that association.
We are studying capuchin monkey behavior, for the purpose of developing a standard of fitness. We enter the habitat where they have evolved and adapted over countless millennia—let’s say a forested area in Honduras. We observe a troop and look for a specimen that appears healthy and generally representative of the species. We settle on an individual that does not appear to be a dominant male or a highly fertile female, but a female of no special rank relative to the troop, who is socially mobile, non-aggressive, non-avoidant. Our selection appears to represent a fairly neutral specimen from which we can extrapolate our findings onto the rest of the species. She appears fit, at the median presentation for the species—not the most successful, not the most disadvantaged. Just an average capuchin monkey. This is our focal individual, our point of departure for understanding monkeys.
We have chosen as our focal individual, our case study, an individual who exists within a social order that has many categories, and who exhibits a variety of behaviors and characteristics, monkeys being a highly social species. She is healthy—fit, we might say—within her environment and her social order. Looked at with more context, we can see that we are selecting an individual who has some characteristics that can be said to be representative of the species—bilateral symmetry, similar arrangements of limbs, tail, organs, fur. But this individual will differ from other individuals according to their social role—sex characteristics, size and weight relative to a dominant male or fertile female, specific social behaviors relative to their place in the troop, and so on. Because we haven’t studied the whole troop over generations, we don’t really know how this individual ranks, in percentile terms, for any given characteristic. But for our purposes, we call her good enough to represent the species for our study.
We capture the individual and bring her into our laboratory.
Stop. Reflect. Project. Pause.
This is the most important moment of the whole examination. Everything that follows is exposition.
In bringing an example of a fit individual into the laboratory, we are now examining a disordered individual. Disorder is a function of environment, not identity.
The condition of her disorder is the environment of the laboratory—an environment to which she is not adapted. The fit individual is fit within a set of conditions—in this case, forest canopy; a containing species with a social order that sorts its members into roles; a milieu of related species; and environmental resources and conditions. In changing the monkey’s environmental and social conditions, we introduce her into a natural and social environment that diverges from the one for which she is adapted.
In changing this individual’s relational status from emplaced to portable—meaning that her original environment was unique, and that uniqueness is due to a relationship with land—the environmental conditions are emplaced—while our laboratory conditions have been carefully designed to be invisible and replicable—and therefore portable—we change the way any data we collect can be interpreted.
We can no longer make predictions about her behavior relative to her embedded environment. We are now examining monkey disability. Monkey environmental disorder. Monkey social disorder. Monkey with special needs.
Disability is defined by an environment, not an individual. Saying otherwise makes the conditions that shaped that environment invisible, and therefore assumed as immutable. Shout it loud. Steal the idea and run with it.
From now forward, every. single. metric. is measuring a disordered individual, relative to the social and environmental conditions she has evolved over millennia to be fit within. From now forward, the only standard of fitness is her ability to thrive in a hostile environment.
In defining her characteristics as representative of her species, using the snapshot of any data we collect the moment we arrive in the laboratory, there are a lot of things that we don’t know:
we don’t know if she was ascendant or descendant relative to the median for an individual of her social class;
we don’t know what she would have become, given another five years in the troop she was taken from;
we don’t know what knowledge she carried that only existed in her—which relationships, which routes through the canopy, which individuals trusted her and why;
we don’t know what role she was growing into, and little about the role she occupied on the day we captured her;
we don’t know who she would have mentored, or been mentored by, had we not removed her from her environment;
we don’t know what her position cost her to hold, or what it would have paid her, over a longer arc;
we don’t know what conditions produced her “neutrality” – whether it was constitutional, or whether it was what her troop’s social order permitted her to be;
we don’t know what she would look like measured against a troop with more resources, less predation pressure, a different history;
we don’t know what our presence, before capture, had already changed;
we don’t know what her stress response tells us about her species, and what it only tells us about this laboratory or this individual;
we don’t know what parts of her behavior we are about to record can be considered a baseline, and which are trauma responses to a hostile environment.
We don’t know that our definition of fitness is sound, relative to her environment, since fitness was never a property she carried alone—it was always a relationship between her, her community, and a forest we have just removed her from.
Sit with that.
rigor: mortis
Science demands rigor. Yet ‘rigor,’ as a term of art, defines stiffness, rigidity, resistance to change. And it’s this scientific rigor that my thesis is presented to indict. We have, as scientists, observers of phenomena, been entraining to limited premises, to confined metrics that don’t scale, to questions defined by a culture that has changed faster than our environment has changed us. The method is sound: question, test, record, reflect, question, repeat. But in our pursuit of specificity of quantifiable data, we’ve lost the frame. We rarely ask the systems level questions, because they often involve cooperation to answer, and cooperation is hard.
Einstein’s theory of relativity established this formally: there is no privileged, view-from-nowhere position from which to measure anything. Every observation is frame-dependent—inseparable from the position, motion, and condition of the observer making it. There is no neutral laboratory. There is no absolute vantage from which the monkey can be measured without the measurement itself already being shaped by the frame we’ve placed her in.
We need to start observing ourselves, and the conditions we assume before observing our subject.
a study of a study
Let’s move forward. Considering that our study is now the study of a disordered individual, let’s make the best of it, and reflect on our data.
We recognize that we want this to be a longitudinal study. We are rigorous—we want to play the long game. So we bring in another individual—a male—to make a breeding pair. We can now study our subject over generations.
We observe as many aspects of biology and behavior as we can think of, in our laboratory:
growth rate, weight gain, caloric intake relative to species norms established elsewhere;
reproductive cycle, gestation length, litter size, interval between pregnancies;
maternal behavior—grooming frequency, nursing duration, proximity-seeking in offspring;
social hierarchy between our two adults, now that a hierarchy of two is all that’s available to form;
vocalization patterns, and how they change in an enclosure with no canopy to carry them;
activity level across a 24-hour cycle, measured against a light schedule we control;
stress hormone levels, sampled at intervals convenient to our staffing;
response to novel objects, introduced on our schedule, to test cognition and adaptability;
aggression and appeasement behaviors, now performed for an audience of one instead of a troop;
longevity, and cause of death, when it comes, recorded as data rather than as loss;
And, across generations, we record whether any of these measurements drift.
And recognize that all of these findings represent behaviors and adaptations within a hostile environment that our subjects were not adapted to inhabit. We are recording disorder as baseline data for the species being observed.
Sit with that. Metabolize the conflicts presented here. Chew on the difficult truths.
Pause. Reflect. If you understand, grieve.
Then let’s move on.
We publish our findings. We present our data as representative of the normal range for the species. We get funding and extend our study to 20 generations of monkeys. This appears to be a longitudinal study.
But it’s a longitudinal study of disordered individuals, now sorted according to their fitness within a hostile environment they were not adapted to. Our study has shifted from “observing monkey fitness” to “monkey fitness relative to a specific, hostile environment.” Or better yet, “how do monkeys sort when we force them through this tube?”
Our 20-generation study is now sorting for survivability of hostile conditions, rather than fitness within the environment for which they are adapted.
Make note of that, and flag this for further study.
Hey, but we’ve got a lot of data. Our boss is impressed.
20 generations on, we’ve got a lot to work with in understanding monkey fitness and behavior. We’re able to establish norms, and medians, and divergences, and anomalies. We have a serious body of work, that’s the result of deep investments of time, attention, and capital.
This is the moment of truth, regarding the economy of scale, and its effect on the future success of our control group: the lab-raised monkeys relative to the land-embedded monkeys.
We come to this moment, recognizing that we have two populations to consider. We can name the conditions of their isolation. We can also consider the conditions of their reintegration. Let’s explore this.
Given that the monkeys evolved within a unique environment that they were then separated from;
and given that a subset of those monkeys were allowed to thrive within a different environment;
what is the degree of shift, relative to the original environment?
What did the laboratory monkeys miss out on, in their adaptation to the laboratory environment, and how might those variables provide challenges for reintegrating into their ancestral environment?
Our new control group of lab-embedded monkeys missed out on a lot of sensory and cognitive experiences that inform their new fitness criteria:
the full sensory and spatial complexity of forest canopy—three-dimensional movement, depth judgment across branches, distance calibrated to a body moving through open space rather than a cage;
exposure to the full range of native food sources, and the searching, testing, and problem-solving that foraging for them requires;
a troop large enough to generate the full range of social roles—elders, rivals, allies, mentors, mentees—rather than the truncated hierarchy of a mated pair;
exposure to predation risk, and the vigilance, alarm-calling, and group-coordination behaviors that risk selects for;
seasonal variation—rainfall, food scarcity and abundance, temperature shifts—and the adaptive behaviors those cycles require;
inter-species contact—the milieu of other animals sharing the forest, and the behaviors calibrated to that wider ecology;
the chance to leave a troop, or be displaced from one, and everything that migration and renegotiation of status would have taught;
unstructured time with no observer present—behavior that isn’t shaped, even unconsciously, by being watched;
the possibility of failure with real consequence—a wrong choice that costs a life, rather than one recorded as data and intervened upon;
continuity of relationship with individuals who remembered them across years, not just across a study’s observation window.
Along with this, our new control group is sorting along new criteria for fitness, that didn’t apply to our original population:
tolerance for confinement—stillness, restricted range of movement, proximity to walls and boundaries with no option to leave;
tolerance for chronic proximity to a small, fixed set of individuals with no ability to disperse, avoid, or seek distance;
tolerance for human observation—habituation to being watched, handled, and measured as a condition of daily life;
tolerance for a fixed, human-controlled feeding schedule, rather than self-directed foraging;
tolerance for a fixed light/dark cycle imposed by researchers, rather than natural seasonal variation;
reduced vigilance behavior, in the absence of any predation pressure to maintain it;
reduced range of alarm and coordination calls, in an environment with nothing left to coordinate against;
compliance with novel-object and cognitive-testing protocols introduced on a schedule convenient to staff, not to the control group;
recovery speed from repeated, unavoidable stress exposure—since the same procedures recur across a generation’s whole life, and across every generation after it;
whatever traits made an individual “easy to study”—docility, low reactivity, predictability—now quietly functioning as fitness criteria in their own right, selected for without ever being named as such.
Let’s pause again. That’s a lot to take in.
Two populations of monkeys. They’re all the same species, but observed in contrast, they are functionally different in important ways.
Having observed a group of monkeys in the laboratory with deep granularity, we have learned a lot about monkey behavior, variation, and fitness.
Having said that, let’s consider a different project. Let’s say we want to abandon our study, and allow our laboratory subjects to reintegrate into their ancestral environment. Will this be a clean and easy transition? Considering the metrics for fitness our data supports, and considering that we are choosing candidates for reintroduction based on our laboratory model of fitness, let’s see what the net gain/loss looks like.
Compared to our lab-based control group, here’s who would be sorted out of the original community:
Individuals that exhibit:
heightened vigilance and frequent alarm-calling would read as hypervigilance or excessive anxiety, since the new baseline has no predation pressure to calibrate against;
complex three-dimensional spatial navigation and constant movement across variable terrain would read as hyperactivity or an inability to remain still;
a wide vocal repertoire, calibrated to coordinate a large troop across dense canopy, would read as excessive or disordered vocalization relative to a population that only ever had to communicate across a cage;
strong reactivity to novel stimuli, appropriate to an environment where the unfamiliar is often dangerous, would read as poor stress regulation or low stimulus tolerance;
selective, discriminating avoidance of certain individuals or situations would read as social dysfunction, since the lab baseline was shaped by populations with no ability to avoid anyone;
assertive competition for troop rank and resources would read as aggression, absent the larger social structure that gives competition its context and its limits;
deep, long-term bonds formed and re-formed across a large, shifting troop would read as inconsistent or unstable attachment, next to a baseline of fixed, forced proximity to the same few individuals for life;
foraging behavior—wide-ranging, exploratory, tolerant of extended uncertainty about where the next meal is—would read as restlessness or food-seeking dysregulation, next to a population fed on a fixed schedule;
resistance to human handling and observation would read as poor compliance or temperament problems, rather than as an intact, appropriate wariness of an unfamiliar species;
variability itself—the sheer range of individual difference the original troop could sustain—would read as noise, or as a lack of the consistency the new baseline has come to expect, simply because the new population was never permitted to generate that range in the first place.
Every trait that would now be called divergent is a trait that was, in the original environment, either neutral or actively adaptive. Nothing in this list describes a defect. It describes a population still calibrated to an environment they have been separated from, and that moment of separation has ceased to be factored in to any assessment metric. This is the legacy of our original group of scientists failing to pass on their knowledge to a new generation. This is not an indictment, just an acknowledgment that there is cultural information that was simply forgotten.
None of this should be controversial, from my perspective. Nothing I’m presenting is new. It’s just considering a broader and more reasonable set of variables for organizing data. Why this doesn’t reflect current diagnostic paradigms is difficult to not interpret as nefarious intent, but I know better than to assume that.
monkey see, monkey do
From here, i’d like to actually step into the frame, or rather ask that together, we merge with it. We are the monkeys, the monkeys we were observing are now us. and we are observing the traits we have described as divergent, with the understanding that we are a colony of highly social primates, observing behavior, scanning for range, and sorting for adaptation to a highly restricted environment. How did we get here? What assumptions do we bring with us to our observations? Are our calculations neutral, or are they calibrated to ensure that the environment, the conditions of the laboratory, are maintained?
And by environment, i don’t just mean the physical environment, i mean the web of social relationships that exist inside of cultural expectations. We are a population that has been living in a constrained environment for generations, and our scientists have forgotten to relate their current data back to this population’s original emplaced environment.
I’m not sure we should even be studying autism in the United States.
My mother just turned 82 today. She has faced challenges in every measurable area of her life, that I won’t go into—that’s a different story. Her diagnosis has changed with the trends of the healthcare industry, and she has only recently been recognized as autistic. It’s hard to imagine that someone who has experienced the challenges that have been placed on her would have such a sweet and sunny disposition and enthusiastic and optimistic outlook during times when her accommodations meet her needs. During times when her challenges are centered, she can be deeply dysregulated and difficult to comfort.
I’m going to take this in a surprising direction, at least considering the thrust of my advocacy, which is that love is the missing accommodation that’s never measured in any diagnostic framework. I never want to look at a person in a way that frames them according to their worth as a producer of economic output. Yet a remarkable characteristic of my mom is that throughout every stage of her life, from the time she was 6 years old until now—76 years and counting—she has been continuously engaged in making.
Her discipline is the fiber arts, and within that her skills and output are varied and broad—sewing, knitting, crochet, natural dyes are the main ones, and she’s dabbled in all other areas of the work. She has worked for brief periods in her industry, but there are so few compensated roles in the US that she has mostly done work in highly unaccommodating environments and lived on public assistance.
She’ll spend her last $20 on a skein of yarn to make a garment for a friend she met yesterday. No amount of reminding or cajoling can convince her to practice practical economy.
Making is literally self-regulation for her. When she is focused on a project, all of the other challenges stop being centered. As long as her needs are provided for, making work is her happy place. She also loves to share information, and she delights in the opportunity to pass on her skills and knowledge. I wish more of those opportunities existed, because they provide the context for the type of social interaction that both feeds her heart and nurtures her community.
76 years and counting of continuous making. What metric in the paradigm of industrial capitalist culture and disability accommodation factors in that part of her profile? None that I’ve ever come across. And this with a history of social isolation that can be viewed as a life-limiting condition on its own.
The condition of her disability makes sense in the context of the socioeconomic realities that her culture presents to her as the standard environment against which fitness is measured—where the type of handwork she produces is only valuable in a privileged family who can afford to accommodate the person making it, or in a country designated, within the global economy, as a labor-extraction zone—where high-skill, low-output handwork like hers becomes an input in production channels serving that economic system. Using that lens, it’s difficult to recognize her as a person of great economic value to any community. Her challenges add up to a net liability, when public housing, mental health care, and economic assistance are factored in.
When we recognize this person, nearing the end of their life expectancy, which is an important stage to factor into any metric of fitness—where will this person be expected to be in their later years? Will they still be enjoying life and engaged with their community? Any metric of fitness should take in the full arc of a person’s life, and not just ability to function at the level required to be measured as functional relative to potential economic output at the age of eligibility for the workforce.
When we recognize this person independently of their cultural frame, we can notice some things that are both remarkable and unremarkable, depending on how they are viewed.
Relative to an 82-year-old person who is engaged in a 76-year-and-counting period of productivity, who is warm, congenial, and who shares information and mentors freely when she is in her element (that seems like a good standard of fitness), let’s reframe the history of accommodations she’s received.
My mom’s primary relationship has been with the healthcare system and the public assistance apparatus that negotiates access on her behalf. Looked at honestly, her mental health accommodations have been based around her ability to interact in working environments that don’t meet her needs, and in intimate relationships with people who are similarly undervalued in our society, who also have communication differences, social challenges, unaddressed trauma, and self-regulation strategies that involve substances and power-balancing behaviors that are responses to perceived loss of autonomy.
In retrospect, all of that could be accommodated quite simply in another cultural context: recognize her as valuable; provide her with food and housing, for which her needs are quite modest relative to the median; interact with her socially in ways that suit her needs—let her interact with people in all stages of life, engage her on topics in which she has deep and exceptional knowledge, allow her to mentor people who share her interests, and accompany her in gentle restorative exercise like a walk through the neighborhood; and make sure she has a project and the resources to complete it.
The culture that frames the conditions of industrial capitalism as the standard environment within which fitness is judged is in fact a statistical anomaly, a tiny blip in the arc of human evolution relative to a variety of environments—5 centuries of organization and 2 centuries of implementation—in a journey of hundreds of millennia. Changing that frame, how could her life, and her value to a community, look different?
As this is not a dissertation, but meant to inspire dissertations based on different paradigms and cultural assumptions, I’m going to share information without proof. I’ll leave it to the inspired and informed reader to explore the connections I’m pointing to. Let’s continue having these conversations.
Consider that a cross-cultural examination of precolonial land-embedded societies around the world reveals a consistent pattern—deities and portions of cultural mythology that represent the role of the maker—the smith, the weaver—as the one who provides the necessary bridge from the natural world to a world of order that human habitation demands. The mythology directly legitimizes a person like my mother as the person who makes human existence possible—the skills they possess to transform raw materials into the tools, roads, clothing, and artifacts of material culture are seen as literally connecting humans to their environment in the exact ways necessary to support a community sustainably. Not as decoration—as vital infrastructure.
A culture with these embedded myths would have recognized my mother early, and, knowing her value to the community, would have nurtured her unique qualities.
Keep in mind: my mother acquired her skills at her own expense, in pursuit of her personal interests. The type of obsessive attention to detail that is required to turn raw fiber into garment, implement, or tool does not come easily to many people. To take the average person and force them into a program of training would be an energy-demanding exercise that would place possibly debilitating demands on most people. The demands of industrial capitalist economies force people through training programs like this as a matter of course. She pursued her program with joy, determination and pride, not to meet the demands of a credential, but to satisfy her precise curiosity, to regulate her life, and make it meaningful.
How would my mother’s brain, her nervous system, her psycho-emotional development, her ability to connect socially, have grown differently, had she been recognized within a community that valued her unique qualities? I’ll leave it to the reader to do the emotional and cognitive work of making those connections.
For me, understanding is inseparable from grief. If you understand, let’s pause, and reflect, and grieve. But also celebrate, and repair.
Back to my opening statement: I’m not sure we should even be studying autism in the United States, at least without radically reframing our metrics for how autistic people are judged relative to the societies they are embedded within.
Many will dismiss my argument as lacking data, as naive projection onto indigenous cultures of inclusiveness that wasn’t present, as mythologizing an idealized past I wasn’t present for. My hope is that the smiths and weavers of paradigms will sew together the threads of our precolonial collective past and show where specific human cultures crossed the boundaries of acceptable behavior by making portable mythologies that didn’t keep the connection legible of the natural world to humanity’s space within it. I hope they might show how specific cultures subjugated the role of the highly interested woman that weaves the community together to that of the warrior bent on destroying anything that doesn’t resemble it.
I realize that I’ve forced the ending here. I’m rushing an idea that deserves more space, for the comfort of the reader. How is this functionally different from rushing my mother into a diagnosis and cultural ghetto for the comfort of a diagnostic committee that is suffering cognitive overwhelm, too tired to assess the arc of a person’s life? And, if we’re kind, this is not an indictment. It’s the gentle reminder to the researcher with low interoception that it’s time to go to bed. Because you are an important asset to the community and we recognize your value.
I have such mixed feelings here. I feel terrible, having reduced my mother’s life to a case study. But having rendered her as valuable, and worthy of the recognition of a community that values her specific qualities, I rest, hoping that in making her legible, a community might find a better way to organize itself.
In my last reflection, I mentioned the intersection of race, gender expression, and neurodiversity in my family story—qualities that all have spectra embedded in them. I didn’t touch on culture and class, which are also observable as existing on spectra.
I was shaped by aspects of Black domestic and expressive culture, but completely isolated from Black community. Likewise German immigrant culture, separated from an immigrant community that nurtured those specific traditional values. From this perspective, I’m able to observe in myself the interplay between race and ethnicity only from the margins of those spaces and states, not from the center. Blackness and whiteness are not fixed values; nor are Germanness and culturally displaced Africanness.
The family story, just in the 20th century—the people I shared a home with—starts on both sides with humble beginnings, and moves through privilege gained through luck and ingenuity. That privilege was not culturally embedded in our family—like our connection to ethnic culture and racial position relative to the dominant culture, it was only adjacent to the culture of American royalty—families who had known privilege for generations. My family was less like the Rockefellers and more like the Beverly Hillbillies with a multi-ethnic cast.
The arc of my family’s material wealth is remarkably graceful—a slow, upward curve, starting in the early part of the century, that reaches well above the median, into 10% territory, flattens in the 50s and 60s, and then draws slowly down to the bottom again in the present day. Through various circumstances and choices, the anchors that make generational transfer possible simply did not survive.
This is just a thumbnail sketch of the part of the family I was embedded within. It doesn’t take into account the Swedish immigrants and consistently lower-middle-class whites descended from earlier waves of European immigration who never accumulated anything like transferable access to the American dream. Generations of people on both sides living in the moment, poverty and privilege passing through them, neither pole of the spectrum inhabited for long.
i grew up in a biracial household where Blackness, white passing, and whiteness were all intertwined, as a neuroqueer, bigender, autistic child with high justice sensitivity, but low hierarchy awareness. being late-diagnosed, i didn’t have names for a lot of my experiences, but looking back, it all makes perfect sense. none of the labels i’ve used are choices i’ve made. they are simply acknowledgements of what always was.
Framing gender, sexual, and relational preferences as choices does real harm. These choices are the result of a culture built around a specific origin story, that by now is clearly a failed metaphor. When the beauty of human variation has been forced through binary tunnels for centuries, who we are has to make a choice as to whether or not to question imposed binaries and let oneself become observably nonconforming, without role models or a shared language.
It’s the conformist power structure that forces the human being to prune themselves or be pruned, or risk the consequences of noncompliance. The choice is whether or not to allow oneself to be who they know themselves to be—and no one should be forced to make that choice. Calling the decision to do so a choice is a cruel trivialization of a life-or-death ultimatum.
You have to understand that growth requires belonging, and belonging requires recognition. A child who is loved is recognized, every day. A child who is recognized accurately, every day, by their community, grows to understand themselves in community. Belonging to the whole community, a child learns what their strengths and frailties are; and the community learns how to reciprocate with that specific child.
On the other hand, a child who is viewed with mistrust because some characteristic does not conform to imposed role options is neglected. Even if they get their material needs met, a child that is not recognized misses out on growing up belonging. If the whole community fails to recognize them, without knowing it they have imposed a completely different growth arc, shaping that child indelibly. A community that knows no differently ascribes this different arc to the common deviation metric of the day—which never includes the complicity of the community, or the imperfection in the lens being used to observe it.
The community that recognizes the value of human variation to the well-being of the collective will be delighted with a child’s specific qualities, and growing up with a community that is delighted by your presence has consequences, for the better.
The community that has a narrow tolerance for human variation that deviates from a small set of imposed categories that don’t map well onto the human organism will have difficulty experiencing delight in their children’s growth. They may go so far as outsourcing child rearing en masse, raising children in environments with few real role models, and without the belonging that comes from recognition.
Delight is like a vitamin, depriving a child of real-time reciprocal delight has real consequences, not for the better.
In the wake of centuries of binary training that twists our nature into prescribed shapes, given a window of opportunity, what looks like a decision to choose a nonbinary gender, a sexual preference that’s not prescribed in the dominant origin story, or a relational orientation that deviates from the cultural median, is more like an acknowledgement than a choice.
Acknowledgement is a moment of recognition. It is the delight that we reflect back to our child through our eyes, that allows one’s inner light to grow alongside one’s outer presentation. It’s an acknowledgment that should never have been framed as a choice. That moment of acknowledgment should always be celebrated, and never trivialized as a choice from a menu made on a whim.
i passed 3 tween girls doing a coordinated dance for tiktok on a walk
recognition: that’s me.
memory: when i was a kid, i wanted to play jump rope and hand-clapping games with the girls, instead of kickball and four-square. the boys were always trying to win, and would spike the ball; girls were smiling at each other, clapping hands and hugging.
i tried a couple of times to fit into these girl groups, but it was awkward, and i just gave up. i went to a different school every year, but that aspect of social life was always the same, as was my inner sense of association.
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?
