Disordering the DSM

by Rebecca-Eli M. Long (Purdue University)

 As a multimodal ethnographer, I create work that challenges the epistemic erasure of autistic adulthood. Autism is frequently thought of as a childhood “disorder” in need of intervention and prevention. Autistic adulthood is seen as undesirable, impossible, or even “not life at all” (McGuire 2016, 192). Narratives that autism is something to be combatted uphold a view that a good future is one without autism—that is, a future without autistic people. This vision “simultaneously obscures and nearly obliviates our capacity to conceive of autistic life in other ways” (Broderick 2022, 275, emphasis in original).

Thus, I want to make material evidence of autistic life—evidence that shows that “autistic life” is not an oxymoron but a creative way of being in the world. My starting point for this project is knitting, which I understand through the term “special interests.” My interlocutors, autistic activists living in the United States, variously defined this term as: “something that you're very passionate about and fixate a lot on and spend a lot of time with;” “An interest from an autistic person that gives them autistic joy that can't otherwise be explained to a neurotypical human or a non-autistic person;” and “the lens through which [autistic people] view the world and communicate.” Special interests were generally positioned as distinct, both from other interests the autistic person had, which might be termed “hobbies” or “pastimes,” as well as being different from the interests of non-autistic people. Though there’s not necessarily a single way of describing what a special interest is, my interlocutors expressed a common belief that these interests were important parts of their lives (Long 2024).

Through ethnographic research-creation with autistic interlocutors about their own special interests (see www.craftingautism.com), I noted how this term, which comes from early medical descriptions of autism had been imbued with new meaning. As one interlocutor noted, “I know a lot of times in the medical literature about autism, special interests are sort of painted as their own little thing that they [autistic people] sink into as an escape from all the other people, whereas in reality, it isn’t always like that.” Instead, my interlocutors shared stories of how their special interests could be an integral part of their lives and something they used to connect with other people. I also heard explanations for how special interests help autistic people feel calm, motivated, and joyful, as they navigate a world that is often harsh and unwelcoming. “Let autistic people engage,” said one of my interlocutors when asked what she would like people to know about special interests. “You have no idea how meaningful and impactful this is.”

While anthropologists studying autism have sought to unsettle deficit-based models by arguing that autistic people “meaningfully engage in a range of ordinary everyday activities with other people” (Ochs and Solomon 2010, 2), what counts as meaningful is often determined by neurotypical norms. This project instead shows how autistic people create meaning through concepts from within autistic self-advocacy. Special interests are indicative of how autistic people craft their own knowledges of what it means to be autistic. I wanted to materialize this process by turning special interests back on the primary clinical text for knowing autism and other forms of neurodivergence, the Diagnostic and Statistical Manual of Mental Disorders (DSM). The iterative editions of the DSM, sometimes presented as a story of scientific progress and more accurate diagnostic categories, show that “mental disorder” is a shifting social construct, a construct that can be deconstructed and reconstructed.

Video credit: Cinematography and editing by Saish Solankar

To make this piece, titled “Disordering the DSM,” I spun and knit the entirety of the DSM over the course of a semester. Though the DSM’s multilevel lists and diagnostic codes were precise, the process of making it was not, as I cycled through the process of ripping out pages, cutting them into strips, and carefully spinning them. What was once an imposing tome was reduced to an uneven and largely illegible yarn. The simultaneous stiffness and fragility of paper made this yarn difficult to knit with. It had to be pulled and worked into place but would rip under too much pressure. Sometimes the DSM could be reshaped and sometimes the new format broke it.

Image 1: Bits of the making process.

Image 2: Bits of the making process.

The DSM is both the background and foreground of this piece. It is a text whose authoritative weight brings it to the front of discussions, while also being the part of the background material from which neurodivergent people fashion their own understandings. I wanted to speak to some of the ways that neurodivergent people create their own forms of knowledge of their experiences that might draw on diagnostic terms but do not necessarily leave neuronormative categories or descriptions intact. This piece was designed to open up the DSM and bring in the experience and expertise of autistic people. Autistic knowledge is not simply included in this project within the structure and style of the DSM. Instead, it asks the viewer to encounter knowledge about “mental disorder” in new forms that question the appropriateness of this category. Clinical ways of knowing autism remain present but are not the most legible sources of information.

Image 3: Disordering the DSM installed at Pratt Institute.

Specifically, this piece features quotes from autistic people about their experiences of their special interests. I chose these particular quotes because of how diagnostic knowledge about autism calls into question autistic people’s ability to narrate their experiences. These quotes demonstrate that not only do autistic people “author autism” (Yergeau 2018), but they do so in ways that demonstrate emotions and sociality that are in stark contrast with how the DSM describes autism. Of data I’ve gathered during research, these quotes are among my favorites because of the variety of ways that autistic people describe their connection with their interests. The different turns of phrase used by my interlocutors reveal a wealth of different ways of describing how and why autistic interests matter beyond simply being a diagnostic indicator.

Image 4: Detail of quotes pinned to knitted piece.

Although the DSM describes autistic people as having “deficits in social-emotional reciprocity [such as in sharing] interests, emotions, or affect,” I included some of the following quotes in this piece:

It [my special interest] is an access point. It's been a way to connect and engage with a wider group of people. And at the same time, it lets people come and connect with me where I'm at.

Engaging with special interests is just something that brings me usually joy, sometimes consternation, but usually joy, or excitement or just motivation.

I'm able to get into that sort of state when I'm engaging with the special interest, where I just feel like challenged but also motivated and just very engaged for like the sake of engagement. And it just sort of feels like I’m at ease and like I'm just doing something that feels right.

Image 5: Detail of artwork. Image courtesy of Risa Cromer.

By sharing these experiences through my own creative practice, I am interested in how different ways of representing knowledge can come together in unexpected ways. Both knitting and autistic people’s knowledge are often seen as less authoritative or meaningful, particularly in comparison to the DSM. In fact, the DSM contributes to the dismissal of these knowledges, claiming that autistic people have “deficits in nonverbal communicative behaviors used for social interaction.” Yet, knitting this piece hardly seems to be a deficit in communication. Instead, it is communication about the DSM’s own deficit to accurately describe autistic and other neurodivergent people. Simultaneously, it shows how autistic people can and do create their own forms of understanding.  

Though autism is only one small piece of the DSM’s broad scope of what constitutes a “mental disorder,” it is a starting point to consider what neurodivergent life looks like outside of the realm of diagnosis, which often implies the need for treatment or intervention. Instead, this piece shows that autistic people form individual and collective understandings of what this category means, understandings that might suggest other responses than the erasure of autistic life. Crafting offers a conceptual, methodological, and theoretical approach that suggests alternative, neurodiverse futures.

Acknowledgements: This piece was made as part of the HASTAC Creative Futures mentorship program, led by Molly Morin and Nikki Stevens. Risa Cromer and the students in her Anthropology of Medicine, Science, and Technology class at Purdue University also provided feedback and support. Funding for materials was provided through a Wenner-Gren Dissertation Fieldwork Grant.

Works Cited

Broderick, Alicia A. 2022. The Autism Industrial Complex: How Branding, Marketing, and Capital Investment Turned Autism into Big Business. Gorham, ME: Myers Education Press.

Long, Rebecca-Eli M. 2024. “’Access Points:’ Understanding Special Interests Through Autistic Narratives.” Autism in Adulthood. Ahead of print. https://doi.org/10.1089/aut.2023.0157

McGuire, Anne. 2016. War on Autism: On the Cultural Logic of Normative Violence. Ann Arbor: University of Michigan Press.

Ochs, Elinor, and Olga Solomon. 2010. “Autistic Sociality.” Ethos 38 (1): 69–92. https://doi.org/10.1111/j.1548-1352.2009.01082.x.

Yergeau, M. Remi. 2018. Authoring Autism: On Rhetoric and Neurological Queerness. Durham: Duke University Press Books.