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.
Pause. Reflect. Grieve. Celebrate. Repair. Rinse. Repeat.