Neuroqueer and Proud: Claiming Identity and Community Despite and Through Theories of Theory of Mind

Neuroqueer and Proud:

Claiming Identity and Community Despite and Through Theories of Theory of Mind 

In the mid 1980’s, researchers first endeavored to define the impairment supposedly characteristic of autism: those with autism lacked “theory of mind,” and were thus, by definition, unable to recognize that others had feelings, desires, and beliefs. This broad-sweeping diagnosis effectively separated those with autism from the rest of humanity, who until this point had been distinguished from animals only through this very awareness of their fellow man. The distinction thus rendered people with autism entirely inhuman. As a definition of Theory of Mind has expanded to include a wider variety of cognitive phenomena, the implications around what this means for who is lacking it has grown. As Melanie Yergeau, a professor of English Language & Literature and the University of Michigan, writes: “In other words, to lack a theory of mind is not simply to lack a theory of other’s minds—it is also to lack an awareness of one’s own mind” (Yergeau 2013). Already denied the human ability of recognizing other’s humanity, people with autism are now denied the fundamental ability to know themselves—even when the complex personal accounts of living with autism quite directly and effectively refuse this erasure. The implications of these claims on the human experience of identity seem grave; if one cannot know oneself well enough to name, claim, and express one’s truths, it seems to follow that one cannot claim an identity (a process which involves recognizing an internal truth, and very often expressing it to others as a means of finding community or at least solidarity).

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Existing literature contains a variety of recommendations about the clinical implications of a potential co-occurrence of ASD and gender-related concerns. Some authors draw attention to the importance of considering the influence of the underlying neurodevelopmental disorder when assessing a patient with gender related concerns. De Vries et al. suggest that there is a need to determine whether gender dysphoria represents a “general feeling of being ‘different’ or a ‘core’ cross-gender identity” (Schalkwyk, Klingensmith, Volkmar, 82).

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In a 2015 literature review published in the Yale Journal of Biology and Medicine, researchers collect and summarize existing writings on the intersections of gender identity (particularly gender dysphoria and transgender identities) and autism spectrum disorders. Calling attention to the related work done by a number of researchers, the authors highlight the notion that the desire of a person with autism to deviate from a normative gender identity and expression may be no more than a “symptom” of already feeling “othered”—in other words, they already “just don’t fit in.” Such a claim undermines the individual’s sense of true self, insisting that they cannot speak to their own truth and experience because of their existing status as a social outcast. Resultantly, people with autism are robbed not only of identity, but of the sense of community and solidarity that can so often result from it.

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Suddenly, the experts claimed, I wasn’t talking. God, no. “That’s your depression talking,” they explained. “That’s your autism talking. That’s your anxiety talking. Really, it’s anything but you talking” (Yergeau 2013).

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The fact that gender identity is in question seems of particular note here, as gender identity is one of a few identities that must be rendered “proven” in the eyes of society—unlike the supposedly biological truths of race and economic realities of class, those who claim a deviant gender identity or sexual orientation must play these identities out through a series of deviant acts and/or transitional steps to assert their presence—or face their invisibility and denial by mainstream culture. If autistic people are “not to be trusted” in their self expression, and if their attempts at identification can be undermined by the assumption that “it’s their autism talking,” then identity claiming is halted before it can even begin to be explored. This is damaging.

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“Perhaps because autistic people are less aware of their social environment, they come to have more fluid notions of gender identity. Aron Janssen, a child psychiatrist who specializes in gender identity counseling, told me, “In many ways, our gender roles are influenced by societal norms and expectations. For some people on the autism spectrum, they are less aware of these norms and expectations. As such, it is possible that some folks have less awareness of the expectations of what it ‘means’ to be a boy or a girl and can be somewhat more authentic in their expression of interests’ Because gender is a social construction, and people on the autism spectrum have difficulty processing social cues, they are less influenced by the rigidity of gender binaries” (Agustsson).

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“It seems reasonable that individuals with ASD, who are known to display differing patterns of social development when compared with neurotypical individuals, may similarly come to progress through gender development along differing timelines or frameworks, complicating the issue of how best to categorize gender concerns in children and adolescents with ASD” (Schalkwyk, Klingensmith, Volkmar).

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On a surface level, Agustsson raises an interesting point that may appear to be liberating. From one perspective, he appears to validate the gender experiences of individuals with autism. However, he goes on to argue a connection between ToM and gender deviance; the inability to perceive the experience of others is precisely what causes the lack of social norm understandings which, in turn, produce the most organic and “true” gender expression possible. In other words, if people with autism are expressing non-normative gender identities freely and truthfully, it is simply because they lack control over themselves and have no understanding of how they “should be.” Their expression stems not from a deep self knowledge, but from ignorance. This disempowering notion inextricably ties gender identity and autism, insisting that even if it is authentic, gender identities must always be informed by the presence of an intellectual or developmental disability.

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And then, there is neuroqueerness. Combatting through their very existence the notion that individuals with intellectual and developmental disabilities cannot conceptualize their gender or organize community around it, people who identify as neuroqueer claim sexual and gender identities that are inextricably tied to their neurodivergence. Rather than attempting to fight the implication by researchers that gender deviance/fluidity and autism may be tied or may even have a causational relationship, those who identify as neuroqueer embrace this unique form of intersectionality, insisting that the relationship between the two identities does not undermine the legitimacy of either one.

It should also be noted that the existence of writings surrounding neuroqueerness directly questions Theory of Mind arguments—if people with autism can not only claim an identity and organize a community around it, but also produce writings and wiki pages on these communities (with these texts serving as theory themselves), assumptions of lack of ToM in people with autism should perhaps be reexamined.

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And yet, at the same time as conversations around autism and Theory of Mind are problematized by questions of identity, the reverse is the case as well. What could perhaps be gained from an understanding of self that is not defined by an ability to “claim” anything? Would we all be just a little bit more comfortable in our own skin, just a little bit more liberated, if we could experience our identities purely through emotion and fluid expression?

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Typical Western narratives of queerness and transgender identities often center around a “coming out”—the moment when an individual outwardly claims an identity, and in doing so, associates with a community or political movement. Already attached to this narrative is the privilege associated with whiteness and upper-class identities; it assumes that a given individual can come out and remain safe, with access to at least food and shelter if not love and acceptance, and also assumes that identity claiming is a value of the community, something which is simply not the case in many cultures and rural communities that focus more on biological kin. Another problematic assumption of the “coming out” narrative is an acceptance of linear time (as the story goes, an individual grows up dysphoric, realizes he must be trans, comes out to his family, and lives a liberated life as he proceeds to transition on a number of levels). But this way of being privileges a logic that is not a fundamental part of all minds, or of all ways of life. Theories of “Crip Time” disrupt this linear flow of life, and in this case demand one more accessible to the workings of neurodivergent minds.

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We sat around the table, two of us students from Bryn Mawr, one a visiting artist and professor from Chicago, a few villagers with various intellectual disabilities, and a few members of the family who owned the house and lived at the village as well. Getting to know one another, the father of the family asked our majors; I explained that I studied Gender & Sexuality Studies—and that my classmate and I both focused on identity.

“What’s identity?” One of the villagers questioned.

I paused, unsure of what to say next. There was so much to say—so much that not even four years of rigorous academia could fully answer that question. I stumbled over some words, throwing in a line or two about “who you feel you are” and “what kinds of things feel right about yourself.”

“Oh—“ she interrupted, “so it’s what’s in your heart!”

And suddenly all the academic “logic” fell away. Emotions, people, are illogical. So isn’t identity—when it is such an intangible, emotionally-based experience—illogical too?

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And yet, this argument for a more organic, less overtly theorized experience of identity does come into conflict with the institutional practices we have in place in society—including such practices as diagnosis, which are essential for all transgender people who hope to receive medical treatment in the form of hormone therapy or gender affirmation surgery. Such formalized practices demand a logical explanation of and framework around identity, one that can break identity down into a number of symptoms.

Many times, “breaking identity down” means that one must be able to distinguish certain elements of identity from others, in order to validate their legitimacy. In assessing possible courses of treatment that may be more “permanent,” like surgery, it is the job of mental health professionals to ensure that the symptoms a patient expresses are the result of the gender dysphoria itself—and not another “mental illness” that might warrant a different suggested treatment.

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As my first appointment approached with a counselor at the health center, I prepared myself by reading up on what my impending diagnosis meant. Gender Dysphoria, I discovered, had shifted meaning from the outdated diagnosis of Gender Identity Disorder. While GID pathologized the very experience of being transgender, Gender Dysphoria calls to attention the extreme distress experienced by those whose internal gender identity does not align with their physical and biological sex “reality.”

Distress. The word stuck out on the page and reminded me all too vividly of my former therapist’s analysis of my depression. In a moment of panic, I felt myself inclined to lie. When the counselor asked me about my history with mental health, what should I reveal? Could my admittance to recent (and perhaps even current) experience with depression delegitimize the fact of which I was so certain—that my gender dysphoria was a kind of distress much deeper than  the depression I had so seamlessly medicated with Prozac and Wellbrutin?

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“David Williams (2010) likewise maintains that autie-biography should be held suspect. Arguing that autistic people have both impaired ToM and impaired episodic memory, he offers the following warning: ‘self-reports offered by individuals with autism only challenge the notion that this disorder involves a diminished theory of own mind if those reports are accurate’” (Yergeau)

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“Those on the autism spectrum who want to get gender reassignment surgery must go through a rigorous psychiatric assessment and be persistently diagnosed with GID. Though the process for someone who has autism isn’t any different from someone who doesn’t, there is often an assumption that people on the autism spectrum lack the capacity ot make these decisions for themselves. But gender identity disorders are complex and variegated for anyone, regardless of whether or not they have developmental disabilities” (Agustsson).

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Ultimately, there are both evident benefits and dangers of associating gender identity and autism in a “causative” manner. People’s identities should perhaps never be “explained” by another element of themselves, and yet for some, this connection is empowering. Perhaps these connections would be better and more respectfully understood as “intersections”—spaces where identities match up, and potentially by coincidence. As intersectionality studies teaches us, whether elements of identity are experienced as causative of each other or not, they are experienced simultaneously due to interlocking systems of oppression and marginalization. At the very least, we should recognize the unique experiences of those who live with both autism and transgender identities, for the sake of recognizing our responsibility as a society (as both intersectionality studies and disability studies teach us) to improve conditions, work to eliminate our prejudice, and increase accessibility.

Works Cited 

Agustsson, Sola. “What My Female-Born Transgender Autistic Brother Can Teach You About How We Construct Our Identities.” Alternet Health. Alternet, 24 Apr. 2015. Web. 3 Mar. 2016.

“Neurogender.” Nonbinary.org. 8 Jan. 2016. Web. 3 Mar. 2016.

Van Schalkwyk, Gerritt I., Katherine Klingensmith, and Fred R. Volkmar. “Gender Identity and Autism Spectrum Disorders.” Yale Journal of Biology and Medicine 88.1 (2015): 81-83. Print.

Yergeau, Melanie. “Clinically Significant Disturbance: On Theorists Who Theorize Theory of Mind.” Disability Studies Quarterly 33.4 (2013). Print.