Introduction
There is a significant body of literature examining the experience of Autistic children in educational settings, including in libraries. The LIS journals are replete with analyses of programming and service provision to Autistic children and their caregivers, discussing strategies to work around their disorders and deficits. Despite the certainty that Autistic children grow into Autistic adults, far less examination has occurred of the needs and information seeking behaviors of Autistic adult patrons within libraries. Less still focuses on the experiences of Autistics within the library itself, from volunteer to credentialed librarian, in MLIS education, job seeking, and the many different roles within the library including management.
Rather than focus broadly on all Autistic experiences within libraries, I chose to focus on the literature centering Autistics within librarianship as a profession, touching on the educational pathways and job seeking experience along the way, as well as the experience of Autistic information professionals participating in and conducting research about themselves. My search began with several LIS-specific databases for articles on Autistic librarianship, expanded to invisible disabilities working within libraries, then to all disabled experiences working in libraries. I also examined disability literature written by librarians but not focused on working in libraries. Finally, I looked for first-hand accounts and autoethnographies of Autistics working in libraries, describing their own experiences. I did my best to select works that were highly influential in the discourse and provided important contributions and insights. Despite Autism being added to the Diagnostic and Statistical Manual of Mental Disorders in 1980, research into Autistic library work experiences remains largely unexamined, as we shall see.
Main Themes
Three major themes emerged during my review of the literature. First, a general condemnation of early research by later researchers for the pathologizing of the Autistic experience and centering the medical model of disability. Second, a common lament on the scarcity of research on the topic of Autistic work experience within libraries. Third, a consensus that ableism with the institution of librarianship is systemic and deeply embedded, and that research efforts have so far been inadequate to effect meaningful change in the field as a whole.
Initial Research and the Medical Model of Disability
In 1999, one of Autism advoacy’s loudest voices published a list of jobs particularly well-suited to Autistic individuals. Within the library, there was one suggestion: “Reshelving library books — Can memorize the entire numbering system and shelf locations,” (Grandin, 1999). This perception of seeing Autistics as worthy only of repetitive, busywork tasks is common within literature older than 2013. A decade later, Strub and Stewart published a case study in 2010 describing an Autistic individual working within a library doing exactly that. “Even though his CSC teachers told us that he does not know how to waste time, we have found that Mark is much more productive when the workload is greater. Further, we attributed Mark’s decline in productivity of shelving 100%-full carts to his perception of the amount of work to be done, which affected his shelving rate. The additional effort to push a full cart, and the longer walking distance needed to complete the total cart, could also contribute to the decline in his shelving rate with 100%-full carts.” The researchers talked to this person’s teachers, made assumptions about his perspective, and theorized about possible influences on his behavior. Notably absent from this study was any inclusion of this individual’s own perspective on the experience.
Later researchers, especially Autistic researchers, have routinely condemned this perspective of Autistics as being incapable of creative and intellectual work or participating with their own voices within research (Haas et al., 2016; Lawrence, 2013; Tumlin, 2019; White, 2021). Lawrence’s article in particular is widely cited as a turning point in the discussion of Autism within library research, with its influence attributed to the identification and condemnation of the medical model of disability that describes Autistics using words such as deficient, afflicted, and epidemic. Her description of this perspective within the LIS research on Autism at the time could easily apply to the case study above: “Disabled people are seen as mere objects of study, to be acted on, shaped, and turned out as best as can be done to fit into the existing social structure.” Later research has focused more on the neurodiversity movement and the social model of disability, centering the lived experiences of Autistic people and the ableism of social systems that disable them.
Lack of Research on Autistic LIS Professionals
Among both Autistic self-reports and Autistic-lead research, there is a common refrain that there is a substantial body of work related to the needs of Autistic children as library patrons, but very little about the information seeking needs of Autistic adults, and virtually nothing about the experiences of Autistics working in the library. Searching Library & Information Science Source, Library, Information Science & Technology Abstracts, and Library Literature & Information Science Retrospective for the terms “Autistic librarian,” “librarian with Autism,” and “librarian on the spectrum” yields 7 results combined. In contrast, a search for “student with Autism” returns 91 unique results, and “Autism and children” returns 540. There are several reasons identified in the literature why this area may be so underrepresented in research.
As the statistics above outline, there is a significant focus on research about the needs of Autistic children and students, and their caregivers. “Library literature, being services orientated, also focuses primarily on assisting autistic users and not the lived experience of autistic workers,” (Giles-Smith & Popowich, 2023). There is a finite resource pool to fund Autism research, and much of it is dedicated to the needs of Autistic children, disregarding that those same children grow up and often find jobs in information fields (Eng & Remy, 2017).
Autistics also face barriers to participating in such research. Maxwell (2022) notes many Autistics working in libraries choose not to disclose their disability in the workplace due to fear of discrimination and job precarity, and participation in research efforts around the experiences of Autistic library professionals may result in unintended disclosure. In a study specifically on Autistic participation in LIS research, Anderson noted that Autistics often find the process inaccessible due to format, such as face-to-face interviews in rooms with flickering fluorescent lights (Anderson, 2021). Another barrier Anderson identified was lack of trust in researchers after previous mistreatment and lack of agency, noting “those participants were interested in helping to make research decisions, finding their views were ‘…commonly misrepresented, misinterpreted and misused by the wider community, especially neurotypical researchers,’” (Anderson, 2021; Haas et al., 2016, as cited in Anderson, 2021). Multiple articles report a desire among Autistic information professionals to participate in research that is led by Autistic researchers and to exert more agency over the research process in order to increase trust and improve the representativeness of the results.
Calls to Dismantle Systemic Ableism
Libraries exhibit an institutional resistance to the disruption of the status quo. Lawrence and Remy both note that the library as an institution places significant focus on the service provided to patrons, and is invested in the identity of library as a force for equality and diversity in the community, but the institution fails to examine the systemic ableism within itself (Eng & Remy, 2017; Lawrence, 2013). Since the founding of the Library Company of Philadelphia in 1731, we’ve had nearly 300 years of libraries in the United States, but the subject of Autistic librarianship has only seen research attention only in the last decade, and the accumulated inertia of the unexamined ableist perspective has proven difficult to overcome. The shift over the last decade towards research through the lens of the social model of disability has begun to change that, but McCulloch (2021) notes that this ableism is still reflected at all levels of librarianship, from meetings of the NSLA to the RUSA Behavioral Guidelines to MLIS classrooms. “I knew innately that I didn’t have any of the attributes she listed. And I almost quit my degree on the spot,” she wrote. “These public library directors may as well have been waving a sign saying ‘Neurodiverse applicants are not welcome here.’”
Lawrence (2013) called for the abandonment of the medical model of disability and the pathological criteria associated with Autism in favor of centering the voices of Autistic librarians as they communicate their needs and desires. Anderson (2021) contrasts how the pathologizing diagnostic criteria for Autism would prompt researchers to pursue less interactive involvement with Autistics, but when presented with a variety of interaction formats, most Autistic participants chose the most interaction option available. Attar (2021) discusses the way Autistic strengths map well to library work, intentionally undermining the deficit viewpoint while still acknowledging that Autistics often need different kinds of support in the workplace. Lubin wrote in 2023 about the stigma and discrimination she has faced, and calls for understanding and training about neurodiversity to address the social structures that disable Autistics.
Conclusion
The limited amount of research on the work experience of Autistics in libraries makes it difficult to draw conclusions applicable to the institution as a whole. The above themes were echoed in nearly every document I reviewed, but they represent only a tiny fraction of the reality of our lived experience. As Everhart and Anderson (2020) put it, “The number of formal studies that have been conducted on the subject of autistic persons and their information needs and abilities are infinitesimal.” The research above also focuses almost exclusively on Autistics who are speaking, do not have a co-occurring intellectual disability, have access to higher education, and are affluent, which is itself a reflection of the lack of diversity in the field. Including more Autistic voices, including those who cannot speak, is crucial to understanding the true breadth of experience. Creating safety for neurodiversity within libraries will also allow those who now fear discrimination if they disclose their Autism to more freely speak out about their experiences.
Lawrence’s article in 2013 seems to be a landmark within the research. Articles from that point on tended to more readily embrace a social model of disability, though certainly not exclusively. It also marked the beginning of a trend of autoethnographical and first-hand accounts of lived experiences of Autistics within librarianship, and a similar trend of including the experiences of Autistics directly in research participation as well as study design. While the body of research since that time remains dominated by articles utilizing the medical model of disability and centers the voices of allistic parents and researchers, the articles that center Autistic experiences are overwhelmingly in support of a social model of disability, the neurodiversity paradigm, and Critical Disability Theory. Just like the Autistic community has a clear preference against person-first language, Autistics in LIS research to date have clear preference against the medical model of disability, and future researchers should take note of how Autistics choose to conceptualize their experiences.
It has been 43 years since Autism was introduced as a diagnosis in the U.S. Unfortunately, the experiences of Autistic LIS professionals as a research topic has only seen real attention in the last decade. And despite the publication of the literature described above during that time, ableism still presents barriers to accessing LIS education, employment, and advancement to leadership for many Autistics working in libraries today. The stigma around disclosing one’s diagnosis further limits the voices we can hear. While more research is clearly needed, research by itself is not enough. Improvements in awareness and training, policy, education, and many other areas are needed in order to create a more equitable and welcoming environment for all library professionals.
References
Anderson, A. M. (2021). Exploring the workforce experiences of Autistic librarians through accessible and participatory approaches. Library & Information Science Research, 43(2), 101088. https://doi.org/10.1016/j.lisr.2021.101088
Attar, K. (2021). Autism, librarianship and their fit. Good Autism Practice, 22(2), 34–39.
Eng, A., & Remy, C. (2017, July 17). Neurodiversity in the library. https://www.inthelibrarywiththeleadpipe.org/2017/neurodiversity-in-the-library/
Everhart, N., & Anderson, A. M. (2020). Research participation and employment for Autistic individuals in library and information science: A review of the literature. Library Leadership & Management, 34(3), 1–6. https://doi.org/10.5860/llm.v34i3.7376
Giles-Smith, L., & Popowich, E. (2023). Autistic employees in Canadian academic libraries: Barriers, opportunities, and ways forward. Canadian Journal of Academic Librarianship / Revue Canadienne de Bibliothéconomie Universitaire, 9, 1–22. https://doi.org/10.33137/cjal-rcbu.v9.39994
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White, A. (2021). Hope and a future: Perspectives on the impact that librarians and libraries have on our world: Vol. First edition (Renee F. Hill, Ed.; Issue v. 48). Emerald Publishing Limited.