Asking the Right Questions: Reflections on Autism and Anthropology

(Over the next couple of months, I will be hosting a series of guest posts on the social study of autism. I’m proud to begin the series with this great post from Elena Sobrino. Elena is a student in her senior year at the University of Michigan-Flint, where she will soon be graduating with degrees in Music and Anthropology. Currently, her main research interest is in medical anthropology, and she plans to continue looking at autism and social theory in graduate school)

For an anthropologist, autism is a terrain of research that’s as overwhelming as it is exciting; it’s clear that undertaking a study of autism is relevant to a whole host of themes, including identity, self, personhood, disability, difference…the list goes on and on! If we accept the model of autism as a spectrum, there is potentially no area of human experience that takes place completely outside this spectrum. The difficulty here is choosing which line of inquiry to pursue! The directions research could take are endless, but it’s quite possible that the answers we imagine lying in wait for us are not necessarily more important than the questions we can start asking about autism in the meantime—and the way we ask them.

In my own journey into autism research, I find myself less concerned with moving towards a predefined goal or discovery, and more interested in excavating the unacknowledged ways autism impacts culturally shaped conduct and relationships. While all this sounds rather vague and broad in scope, this perspective encompasses a range of more specific questions, which I’ll discuss shortly. In maintaining that conclusions shouldn’t be fixed from the outset, I don’t mean to imply that research should be purposeless or devoid of any direction whatsoever. Rather, by emphasizing process over outcomes, I am in a way critiquing the notion that “advances” in research flow in simple, linear progressions of false to true within any form of knowledge production. Anthropologically speaking, it often makes more sense to consider multiple points of view simultaneously, allowing a wide margin for the flexibility and unpredictability of human behavior!

To craft an anthropology of autism that is meaningful and worthwhile, I would argue, depends on a thoughtful integration of theory and practice. Achieving this requires us to consciously put a tentative question mark next to the assumptions that are often overlooked in everyday experience or even in other academic disciplines. At a basic (though important) level, the first step in overturning the assumption that autism = pathology is to acknowledge the ways in which disability is constructed as an interaction of the biological and cultural. In this sense, disablement can be located in the social, not just within the individual. I also find it helpful to view the binary separation between order and disorder, as it relates to so-called autism spectrum disorders, as a dialectical rather than oppositional relationship. In other words, autism involves the coexistence of both challenges and competencies, not an either/or situation.

It’s sometimes tempting, on the one hand, to construct autistic individuals as helpless objects of pity, or at the other extreme, to romanticize them as mystics or savants. Neither approach, in my view, contributes to a useful understanding of autistic ways of being. Instead, invoking such extremes only propagates the constitutive othering of autistic individuals, putting more distance between them and us “neurotypicals.” Indeed, it seems to me sometimes that reducing autism to simply a neurological difference involves playing into a tendency to see the brain as synecdoche for the person as a whole—a powerful notion, no doubt, but one that could be challenged! My intent here is not to question the “realness” of autism, or to claim that brain differences do not exist or have no real effects, but rather to suggest that some autistic traits that are considered problematic (like stimming, or avoiding eye contact) may not originate from an inherent, cognitive inability to relate, but rather from the imposition of socially constructed norms upon the conditions of these relations.

Theorizing autism is ultimately, however, an incomplete project without recognizing the significance of autism as a lived experience. The conceptual existence of autism, as a biomedical category, as a diagnosis, as a product of interdisciplinary research, is of course much easier to grasp than the spectrum of autism we find beyond the ivory towers and clinical handbooks. The concept of autism has a traceable history, has boundaries we can perceive and describe across disciplines with shared terminologies we alternately accept or problematize. Yet the way bodies inhabit autism is a much more complicated story to tell—yet surely, it is the person, after all, not the concept, that should be at the center of our intellectual pursuits as anthropologists!

One obvious way we could maintain a person-centered approach is to make space for autistic people to voice their experiences themselves. As anthropologists, we have the tools to argue that this space is both possible and valuable. Part of doing this could involve pointing out ways we could collectively expand our definitions and standards of communication. For example, art, music, and literature are all areas where there is powerful potential for profound expression. In fact, it is precisely in the most idiosyncratic forms of expression, whatever they may be, that we see a glimpse of a reality that eludes the data of biomedicine, that perhaps articulates far more than even our own carefully constructed words we put together as anthropologists.
My own attempt at reconciling theory with real life lies in locating autism across different domains of human experience—specifically, kinship, religion, and biomedicine. As a sibling of an autistic individual, I’m especially aware of the ways in which autism can transform family relationships in a way that subtly restructures assumptions about (in)dividuality. Within the context of my own family, the everyday routines we perform to accommodate my brother’s autism have become so habitual as to be mundane, but they are nevertheless essential to sustaining our family life as an environment that enables rather than disables. Without implying that my own (limited) experiences can speak for the experiences of others, I nevertheless think it would be intriguing to speculate on how strong relationships with autistic individuals (whether kin-based or not, really) compel an increasingly dividual perception of personhood. In addition, it is important to point out that in general, crucial issues such as the negotiation of care and dependence are very often not simply abstract questions but very concrete, pressing realities for families of autistic children or adults; for families, these issues have political and economic contours, and their resolution is dependent on access to medical, legal, educational, and other resources.

As for the religious dimension, I am particularly interested in how Catholic, charismatic spirituality construes wholeness and healing in comparison to the clinical narratives of biomedicine. From this particular faith-based perspective, physical and spiritual health are intertwined, with the implication resulting that autism is not only a neutral difference, but a condition with ambiguous moral valence as well. I say ambiguous, because paradoxically this kind of spirituality employs a cure-oriented, corrective approach based on prayer, but simultaneously endows those with autism and other disabilities with a distinctly sacred quality of purity and innocence. In a somewhat similar vein, I’m also currently working on a comparison of Traditional Chinese Medicine and biomedicine and their respective approaches to autism for a class project. Unlike biomedicine, TCM does not operate through a mind/body dichotomy, and health is conceived of as a balancing of energy, in contrast to the notion of a standardized, normal body that is the point of reference for health in biomedical terms.

To sum up my thoughts, I feel that ultimately any project that seeks to critically reflect on autism must have, at its heart, the kinds of questions that destabilize even the firmest claims society and biomedicine make about autism. Such questions are not easy to formulate, and are even less easy to answer with the reliability and certainty discourses of scientific knowledge carry. Perhaps, in the end, the only answer our questions need is the possibility of social change: for respect, awareness, and justice to replace precarity and stigma. To my mind, the ultimate achievement for an anthropologist would be to finally stumble into asking the right questions, after years, perhaps, of dogged pursuit—and maybe, if we’re very very very lucky, someone will actually read the thousands of words we spent asking them! 😉

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5 thoughts on “Asking the Right Questions: Reflections on Autism and Anthropology

  1. Pingback: On Theory of Mind | The Autism Anthropologist

  2. hopefulandfree

    Suddenly we are interested in finding the person “inside” autism?
    Really. What was the Spanish Inquisition? I forget.
    How did they test to determine if someone was a witch?
    if the alleged witch managed to float…ooh, that meant one thing.
    if the alleged witch sank and drowned? Something else.
    yet in either case, those dudes deciding the meaning of the socially constructed tests..?
    how do we know for sure that some of THEM were not, secretly, “witches”?
    Remind me, again, what is a witch?
    Why was it so self evident that witches existed and non witches could somehow determine—after constructing them— which ones were actual witches, hidden under their social appearances, and which were regular folks, like everybody else?

    Then, the Church had the power to name the Other.
    Now, we have science? Science and technology, which are of course free of ideology, free of discourse distortions, free of coercive practices…

    How do we know that the traits being detected by the Inquisition…were physiological differences beneath social appearances, were evidence of the devil INSIDE the corporeal witch bodies? Long, highly detailed “witch” confessions were certainly convicing evidence…witches knew they were witches, right?, without being first detected and identified and tested…the witches knew they were different from their Inquisitors, long before they heard such a word as “witch” — they never really fit in, socially, they were usually loners and preferred to avoid the dominant social conventions which demanded their compliance. They would have been better off organizing, blogging, er, letter writing, asserting witch rights? Think that would have saved them from the fires, the drowning pools, the chopping blocks, the corrective tortures… Who knows…but once you convince people they are THAT different INSIDE, and that their ticket to freedom from oppression comes in confessing to that INSIDE difference, that inside demon, what is the point of noticing the Spanish Inquisition, the priests, the holy men holding the Word of God in their hands, and hearts. What would be the point in noticing that these holy men who seemed so Good and wise and just were…hmm..what? Were individual priests THAT evil, that arrogant, that power crazed—and that deadly—by themselves, one by one —without the church’s authority, privilege, political power, and physical means of domination…over human minds?

    I dunno. But they didn’t seem too bothered by the nature of the work, going by, say, The Malleus…I doubt they paused to ask themselves if maybe, inside, deep under their robes, they too were witches…I’m sure that thought never entered their individual, solitary, holy minds.

    That thought probably never occurred to the poor witches either.

  3. hopefulandfree

    So. If you wanna “destabilize…even the firmest claims”…what the hell are you waiting for? Permission? Permission to not comply, just this once?
    The dialectic is not theory, not “critical reflection”…and philosophy is not just thinking, for ACTION arises from all this…reflection, if indeed it is critical. In any case, action will arise from your words, and others’, but the actions carried out in the name of autism won’t be determined by autistics or by anthropologists getting their reflective groove on, or by playing around with a pseudo dialectic that doesn’t actually change the status little bit…

    So. Maybe I’m autistic and a witch, or whatever, but take it as a compliment if I am over here on your blog in this imaginary place existing outside the reach of forces of domination, LOL, taking the time to call you on your bullshit.

    You moderate. You hold the power. For all anyone knows, Nobody said any of this “bullshit” which, by the way, is not about you, not about me, and not even– in the end— about autism or Autism. So. What, more precisely, is going on here.?

    I forget. It seemed important once.

  4. Pingback: Revisiting ‘Refrigerator Mothers’ and the Consequences of Blame | The Autism Anthropologist

  5. Pingback: The Friendship Factor | The Autism Anthropologist

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