Autistic Students and Academic Library Research: Recommendations for a Neurodiversity-Informed Approach

In Brief: Despite a growing pool of research in library and information science (LIS) authored by autistic librarians (see Lawrence, 2013; Tumlin, 2019),  the vast majority of LIS research about autistic students in academic libraries continues to portray autism as a tragedy that students must overcome, a common trope that the autistic community has long rallied against (Sinclair, 1993). In this article, I recommend that those writing about autistic students and academic libraries do so through a neurodiversity lens; those who ascribe to the neurodiversity paradigm generally conceive of variation in neurocognitive functioning as a valuable and natural aspect of human diversity (Walker, 2021). Making this paradigm shift in name alone, however, will not be enough. Effecting true change in LIS research will involve deep reflection on the values and norms of academia as well as those of librarianship. As a profession concerned chiefly with information, and as academic librarians tasked with supporting college students of all neurotypes during their formative years, we must begin to interrogate the ways in which our research and professional practices may themselves create barriers to the inclusion and full participation of autistic students in our libraries. 

By Jessica Hinson-Williams

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Due to increased transition supports, greater access to diagnostic services, and increased knowledge about how autism presents in women, people of color, and other marginalized groups, a greater number of autistic students are attending higher education institutions (Bakker et al., 2019). Though autism was once inaccurately conceived of as a childhood phenomenon that a person could outgrow, it is now more accurately understood as a distinct neurotype associated with a diverse range of support needs and strengths that may vary for individuals across contexts and time. Autism-focused research in library and information science (LIS) has become increasingly common in recent years, and academic librarians have begun to address the needs of this growing population of autistic students in higher education through both research and practice (Anderson, 2018; Anderson, 2021; Robinson & Anderson, 2020; Pionke et al., 2019; Remy et al., 2014). 

Yet despite increased postsecondary enrollment, autistic students still experience myriad barriers to academic success and graduation, many of which stem from systemic ableism within higher education and society more broadly. Academic libraries have long been recognized as a key resource for college student success, and autistic students in particular may value the library as a place of escape and refuge within the unstructured and overstimulating college environment (Anderson, 2018). With the understanding that academic libraries may be of particular help in supporting autistic students’ success, an increasing number of autism-focused articles have appeared in LIS journals within recent years. Despite the good intentions undoubtedly underlying this line of research, much of what has been written about autistic students in academic libraries serves to perpetuate the same inaccurate and harmful stereotypes that appear in autism research across other disciplines (Botha & Cage, 2022). One potential solution to this ongoing problem is the adoption of the neurodiversity paradigm within library and information science research.

What is the Neurodiversity Paradigm?

Autistic scholar Nick Walker defines the neurodiversity paradigm as a perspective that  appreciates neurodiversity as a “natural and valuable form of human diversity,” rejects the socially constructed notion that there is a “normal” and correct kind of “neurocognitive functioning,” and recognizes that “social dynamics” and structural inequities related to neurodiversity are similar to those experienced by other marginalized groups (2021, p. 36). E.E. Lawrence, an autistic LIS scholar, called for the adoption of the neurodiversity paradigm in LIS research and practice in his 2013 essay “Loud Hands in the Library: Neurodiversity in LIS Theory & Practice.” To my knowledge, Lawrence is the first LIS scholar to problematize the way in which research by and for library professionals has failed to adopt the neurodiversity paradigm, resulting in LIS research that dehumanizes and pathologizes autistic people. In his essay, Lawrence argues that librarians have “a special obligation to generate theory, policy, and practice that is consistent with neurodiversity” (2013, p. 99). While Lawrence notes that library professionals may view this call for adopting the neurodiversity paradigm as a violation of librarians’ supposed professional neutrality, he adamantly disagrees, arguing that embracing and affirming neurodiversity is essential to our ability to provide equitable and effective library services to all patrons.

In what follows, I argue that despite multiple calls from autistic LIS professionals like Lawrence (2013), the vast majority of researchers in the field have failed to truly adopt the neurodiversity paradigm. With a focus on literature published since 2013, I explore the ways in which academic librarians have written about autistic people, highlighting examples that are in tension with the neurodiversity paradigm and those that suggest progress toward affirming neurodiversity in our research and practice. In particular, I problematize the paradoxical nature of research that purports to better support a patron population while simultaneously dehumanizing those same people. Finally, I contend that this paradigm shift within our profession would necessitate a reckoning with our espoused values and our behavior as researchers and practitioners, especially in relation to evidence, authority, and credibility. 

Reviewing the Literature

The majority of publications regarding autistic students in academic libraries within the last ten years have addressed the need for increased staff training, the adoption of universal design, and the creation of specific programs to support autistic students (Anderson, 2018; Anderson, 2021; Boyer & El Chidiac, 2023; Layden et al., 2021; Pionke et al., 2019; Remy et al., 2014; Robinson & Anderson, 2022; Walton & McMullin, 2021). Many conceptual pieces describe the support needs of autistic students, typically drawing upon autism research from medicine, psychology, and education, and applying findings from this body of research to recommend approaches to academic library services (Carey, 2020; Cho, 2018; Everhart & Anderson, 2020; Shea & Derry, 2019). Despite the fact that this research is undoubtedly rooted in the goal of helping library staff to better support autistic students, much of the recent LIS scholarship about autistic college students continues to reinforce deficit-based views about autism, in part due to the (sometimes unacknowledged) use of the medical model of disability as a lens.

Models of Disability

At present, there is no clear consensus within the neurodiversity community, or the disability community at large, regarding a universally preferred model of disability. The various models of disability each conceptualize disability and its origins differently, with the medical and social models often conceived of as being particularly at odds. While the medical model defines disability as an individual phenomenon, where disabled people are inherently abnormal, deficient, and in need of remediation (Botha & Cage, 2022), the social model identifies societal barriers and a lack of accommodations as the factors that render people disabled (Shakespeare, 2013). Critics of the medical model cite its focus on fixing the individual as problematic, while critics of the social model argue that a primary focus on societal barriers overshadows the reality of impairments and the challenges that may arise from them. When it comes to embracing the neurodiversity paradigm, however, Walker (2021) claims that the medical model of disability is incompatible, and she argues for the use of the social model by those who adopt a neurodiversity lens for their research and practice. Though I recognize the potential shortcomings of the social model for some disability experiences, I find Walker’s argument convincing in the context of neurodiversity and autism, which I believe to be natural and neutral examples of human diversity. 

The description of autistic college students through a medical model lens in LIS research is a common and problematic practice, but what is especially troubling about this practice is that many authors whose work aligns with the medical model claim to be proponents of the social model. Several authors of recent LIS publications about autistic college students describe different models of disability (Remy et al., 2014; Robinson & Anderson, 2022), or even recommend the adoption of the social model in future studies (Shea & Derry, 2019). Still, the majority of researchers continue to describe the challenge autistic students face as arising from their autistic traits, rather than from the ways in which institutions of higher education are designed for neurotypical students, who are also frequently inadequately supported by our systems.

One of the often-cited barriers to academic success for autistic students is the fact that many disabled students, including autistic students, choose not to disclose their disability to their college or university (Cho, 2018; Everhart & Escobar, 2018; Remy et al., 2014). While lack of disclosure and a corresponding lack of support services are noted in these works, few, if any, acknowledge the systemic issues that would lead a disabled person to avoid disclosing their diagnoses and support needs. There is a wealth of research regarding the discrimination disabled students face when attempting to navigate the academic accommodations process, including social stigma, disbelieving faculty, and stringent documentation requirements (Lindsay et al., 2018) that these LIS publications do not acknowledge. Instead, some researchers have attributed an avoidance of disclosure as a hesitance to be “classified by their disability and labeled ‘disabled’” (Everhart & Escobar, 2018, p. 270) or “receive undue attention” (Remy et al., 2014) without any discussion of the social contexts, systems, and individual behaviors that create an environment in which the disability label becomes problematic. 

This same framing is often used to describe the higher rates of attrition among autistic students in higher education as compared to neurotypical peers. For example, Robinson and Anderson (2022) cite a “number of factors that contribute to this attrition, including difficulty transitioning to higher education, mental health difficulties, and low socioeconomic status” (p. 164). The authors go on to discuss common challenges autistic students face, including struggles with time management and self-advocacy, noting that these students “consequently…have a graduation rate that is significantly lower than neurotypical students” (Robinson & Anderson, 2022, p. 161). While these statements are not objectively false, and autistic students do often struggle with executive functioning, self-advocacy, and mental health, the manner in which these challenges are framed does not contextualize autistic students’ struggles as occurring within a larger social and academic context that is designed with nondisabled students in mind. 

These rhetorical choices exist in direct tension with the authors’ description of the social and medical models of disability, as well as their recommendation that the neurodiversity framework could be useful in explaining challenges neurodivergent students face in higher education. This tension is present in a number of publications, many of which advocate for greater staff training about the needs of disabled patrons (Anderson, 2018; Remy et al., 2014) while still framing the challenges autistic students face as existing primarily due to their autism, rather than arising from a mismatch between expectations and supports, or an interaction between impairment and context. 

In adopting a neurodiversity lens, I recommend that LIS scholars thoughtfully examine the theoretical underpinnings of the ways in which they explain the challenges autistic students face in higher education. While the social model may not be appropriate framing for the experiences of every disabled person, I agree with Walker (2021) that the social model is the most appropriate option for neurodiversity-informed research. The social model does not deny the existence of impairment or the need for supports, as some critics suggest, but it does distinguish between an impairment, such as low vision, and the disablement that comes from not being able to participate fully in society due to systemic barriers (Shakespeare, 2013). Adopting the neurodiversity paradigm, which engages with the constructed nature of disability alongside the reality of individual impairment, will mean finding ways to describe needed supports without dehumanizing those who would benefit from them. This shift will require making less harmful and more accurate choices regarding the language used to describe autistic people in LIS research.

The Impact of Language

An unfortunate consequence of the medical model lens used in much of autism research in LIS is that much of the language used to describe autistic people and their traits is dehumanizing and pathologizing in nature. Among the most jarring inconsistencies is the use of the term “deficit” in articles that claim to be aligned with the social model of disability, which primarily understands disability is a socially constructed phenomenon arising from barriers to full participation by disabled people (Lawrence, 2013). By claiming that autistic people are deficient in certain skills or traits, a comparison is made to an unspoken, undefined norm, casting autistic people as inherently inferior and abnormal. Some authors even go so far as to claim that autistic students face challenges in higher education and academic libraries “because of these deficits” (Shea & Derry, 2019, p. 326, emphasis added), which is in alignment with a medical model understanding of autistic students’ experiences. 

The choice to use such pathologizing language is often defended as the expectation for scientific research. Cho (2018), for example, notes that their work is grounded in “the scientific understanding of ASD as a disorder” (p. 329). In their recommendations for avoiding ableist language in autism research, Bottema-Beutel and colleagues (2021; 2023) note that researchers often justify deficit-based language choices as scientific, citing concerns that less ableist terminology could be construed as inaccurate and unscientific. Despite this reasoning, many authors utilize deficit-based phrasing that in itself is vague and often inaccurate, including functioning labels. Functioning labels are a hotly debated issue in autism research, though “few autistic adults, family members/friends, or health care professionals endorse the use of functioning-level descriptors” (Bottema-Beutel et al., 2021, p. 23). While many of the articles cited here use the term “high-functioning” to describe autistic college students (Anderson, 2018; Cho, 2018; Everhart & Anderson, 2022; Everhart & Escobar, 2018; Remy et al., 2014), few actually articulate what this means within the context of their research or for the autistic students their readers will support in their own libraries. This is not a LIS research-specific phenomenon; functioning labels tend to be extremely vague across autism research in a variety of disciplines, and often serve only to “assign expectations,” reducing autistic “people to ‘human doings’ instead of human beings” (Tumlin, 2019, p. 13). Despite the dehumanizing nature of these language choices, authors of these same publications often insist on using person-first language to describe autistic people. 

Though person-first language (i.e. person with autism) was once touted as the gold standard in special education, it has now come to be understood as less universally preferred among the highly heterogeneous disability community (Bottema-Beutel et al., 2021). Many autistic people, in particular, have come to prefer identity-first language (i.e. autistic person), recognizing autism as a key part of their identity, inseparable from their selfhood (Sinclair, 2013). Proponents of person-first language insist that acknowledging autistic people’s personhood is paramount, but autistic scholars have noted that the need to be reminded that autistic people are human beings, as if it is not automatically apparent, is dehumanizing in itself (Sinclair, 2013). Despite a critical mass of the autistic community advocating for a shift in language to affirm and validate autistic identities, research has lagged behind, overwhelmingly tending to favor person-first language, often in combination with the word “disorder” (Bottema-Beutel et al., 2021; Lawrence, 2013; Sinclair, 2013). 

Interestingly, multiple LIS scholars have acknowledged a preference in the autistic community for identity-first language, but explicitly choose to align their own language use with mainstream autism research (e.g. Anderson, 2018; Shea & Derry, 2019). Even more troubling, some authors who use person-first language throughout their text also refer to autistic people as “ASDs,” an odd term based on the initialism for Autism Spectrum Disorder that feels uniquely dehumanizing among the many possible language choices at hand (e.g. Braumberger, 2021; Remy et al., 2014; Robinson & Anderson, 2022). 

The language used in these publications reflect the ongoing lack of engagement with the neurodiversity paradigm in our field, despite the occasional references to neurodiversity-inspired terminology in this same research. Terms developed by neurodiversity scholars appear occasionally in LIS research focused on autistic students in academic libraries, but few of these publications use the language consistently, accurately, and in a way that reflects the values of neurodiversity advocates. Autistic scholar Nick Walker (2021) describes a common pitfall regarding neurodiversity and language: using “neurodiverse” and “neurodivergent” interchangeably. While neurodiversity refers to the diversity of human minds and cognition, neurodivergence refers to those who diverge from the socially constructed neurotypical norm, including autistic people and those with ADHD, dyslexia, etc. (Walker, 2021).  Others misuse the term neurotypical, generally understood to be those who are able to align with the socially constructed cognitive norm (Walker, 2021), claiming it to refer to allistic, or non-autistic, people (Everhart & Escobar, 2018) or failing to describe the ways in which ‘typical’ is a non-objective social construct (Walton & McMullin, 2021). 

These misrepresentations, whether intentional or not, suggest that many LIS scholars have not engaged thoughtfully with the work of neurodiversity scholars. This is especially troubling when library researchers cite the work of the few known autistic LIS scholars, whose work calling for neurodiversity-informed LIS research is quite clear in its language and recommendations (Lawrence, 2013; Tumlin, 2019). Though some LIS scholars have indicated that they are aligning their language with professional and scientific standards, the language these authors often use is often vague and inaccurate (Bottema-Beutel et al., 2021) and “good science does not require derogatory language or dehumanization of autistic people” (Bernard et al., 2023, p. 683). 

The neurodiversity framework conceives of the diversity of human cognition as natural, and even valuable, rather than as a deviation from a more desirable, “normal” brain. The adoption of such a mindset would require more precise language choices, particularly when the terminology we employ is linked to issues of power and positioning. For example, LIS researchers must acknowledge that “neurodiverse” is not a euphemism for “neurodivergent,” a term that does not mean abnormal, but a deviation from the socially constructed norm for human cognition (Walker, 2021). Explicit recognition of the ways in which unspoken, undefined (and often undefinable) norms are used to Other marginalized groups, including neurodivergent people, is a key feature of neurodiversity-informed research. Language choices that pathologize certain ways of perceiving, thinking, and being in the world are incompatible with this framework. 

It is imperative that the LIS field recognize the powerful nature of the language choices we make, both for the understanding of colleagues we hope to share our research with, and for the well-being autistic people (both patrons and colleagues) who come into contact with our work. Deficit framings of autistic people contribute to the ongoing marginalization of a group whose voices are already woefully underrepresented in research, and contribute to power dynamics in the field that prevent meaningful engagement with autistic collaborators and participants (Bernard et al., 2023), an essential feature of neurodiversity-informed LIS research. 

Representation of Autistic Voices 

Though some authors have cited the work of autistic LIS scholars Lawrence (2013) and Tumlin (2019) in their own work pertaining to autistic patrons in libraries, few have adopted the neurodiversity framework that both authors call for, and even fewer engage with autistic participants as part of their research.  In one of the few LIS publications to report on findings from autistic participants, Pionke and colleagues (2019) note that much of the library literature published about autism does not actually draw upon the autistic experience. Other authors note that if the neurodiversity movement is to make headway in the field of library and information science, LIS scholars will need to interact with neurodivergent patrons to conduct their research, “as it is important not to speak for a population without gathering their input” (Everhart & Anderson, 2020, p. 4). 

Several LIS studies within the past ten years, including the work of Pionke and colleagues (2019), have drawn upon autistic participants’ perspectives and offer examples of how neurodiversity-informed research might amplify autistic voices. In their 2019 study, Pionke and colleagues engaged directly with autistic students in their analysis of library support for Project STEP, a program for autistic college students. Anderson’s (2018) study of online communication among autistic students regarding their use of academic libraries, a publication from her dissertation data, is one of the first to acknowledge the importance of autistic people’s lived experiences and articulated preferences regarding library resources, spaces, and services. Were more LIS researchers to engage with the autistic students on their own campuses, there would likely be a greater number of studies that challenge outdated and harmful assumptions about autistic people, leading to more relevant and useful findings that will allow us to better serve our patrons.

A 2020 study of disabled students’ perceptions of academic library accessibility webpages (Brunskill, 2020), though not focused solely on autistic participants, is a prime example of the ways in which a researcher might not only engage with disabled participants, but also intentionally design a neurodiversity-informed study. Brunskill collaborated with disability studies faculty, including disabled faculty members, to design their interview protocol in a way that would avoid causing harm to their participants. Following a pilot of the interview protocol, Brunskill offered students control over the interview modality, a choice that not only aids in transferring some power to participants, but also reflects a neurodiversity- and disability-affirming approach, as different modalities may meet different participants’ needs and preferences. 

Epistemic Injustice

While the issue of little engagement with autistic participants and colleagues in scholarship is not unique to our field, it is still troubling, and reflects a larger trend of failing to prioritize the voices of the marginalized groups we aim to support. Autistic scholar Remy Yergeau (2018) describes the way in which the narrative about autism and autistic people is one of non-agency and non-rhetoricity; autistic people are constructed as non-actors in their own lives, and non-speakers about their own experiences. Those who attempt to speak about the expertise derived from their lived experience are silenced on the basis of being either too autistic or not autistic enough to speak for the autistic community (Botha, 2021), a strategic and effective dismissal experienced by members of many marginalized groups. By prioritizing the preferences and voices of so-called autism ‘experts’ in LIS scholarship, we not only perpetuate harmful stereotypes about the people we seek to serve, but also discount the experts who could make our research and practice significantly more effective. 

Autistic scholar Monique Botha (2021) describes the ways in which autism research routinely causes harm through such characterizations, which reinforce the dehumanizing portrayals of autistic people while ignoring very real evidence from autistic participants and scholars. Botha calls this “epistemic injustice,” a phenomenon in which autistic voices are continuously silenced and marginalized in favor of supposedly neutral and scientific research (p. 6). In short, “we do not trust, nor want autistic people to talk about autism” (Botha, 2021, p. 6). Until we, as a profession, begin to meaningfully collaborate with autistic students in our research, we will continue to perpetuate and affirm this harmful message.

This epistemic injustice also helps to explain why LIS scholars are not engaging with the work of autistic scholars to the degree that they engage with mainstream autism research. Several LIS studies mention, for example, that autistic students may struggle in social situations due to deficits in social communication skills (Anderson, 2018; Everhart & Escobar, 2018; Shea & Derry, 2019). These characterizations of communication challenges arising from autism alone disregard the well-known work of autistic scholar Damian Milton (2012), who coined the term the “double empathy problem” to describe the interactional communication challenges between autistic and non-autistic interlocutors, arising from a communication mismatch rather than from autistic deficits. Crompton and colleagues (2020) confirmed through experimental research that autistic individuals communicate effectively with one another, lending further credence to Milton’s theory of the double empathy problem. 

Milton’s work, alongside the work of other autistic autism researchers, is often uncited in LIS publications, which tend to favor more traditional and conservative notions of expertise and authority. While these choices may seem neutral and aligned with science, as many claim them to be, I argue that no choice is apolitical, especially when scholars hold the power to contribute to the problematic positioning of a marginalized group they believe their research supports. To begin the journey toward adopting a more humanizing, neurodiversity-informed approach to LIS research, we must first ask ourselves why this change has not already been made.

A Professional Reckoning 

Ten years after Lawrence’s (2013) “Loud Hands,” a key question remains: why have academic librarians failed to heed our colleagues’ calls to adopt the neurodiversity paradigm as a framework for our research about autistic students? I contend that this ignorance, and in some cases, outright refusal, to engage with neurodiversity is in direct tension with our espoused professional values and the information literacy dispositions we aim to cultivate in our students. This issue also reflects a larger tension within our profession regarding who we deem to be an authority, and whether we are willing to critically engage with the ways in which power and systemic oppression impact who is perceived as authoritative.

As academic librarians, we regularly teach students that “authority is constructed and contextual” (Association of College and Research Libraries (ACRL), 2015), and that credibility, evidence, and authorship are not always to be taken at face value. Though we employ the ACRL Framework (2015) to foster a critical stance toward authority in our students, thus far, our field has failed to take this same stance in our own research about autistic students in academic libraries. Instead, the majority of this research perpetuates the notion that autistic people are, at best, abnormal and in need of remediation, and at worst, inhuman and non-rhetorical (Yergeau, 2018), unable to serve as experts on our own experience. 

Andrea Baer (2023) recently problematized the ways in which the LIS field has uncritically accepted the “dominant narrative” of a post-COVID world, a narrative that is contradicted by reputable data about disease transmission. She notes how the rhetoric surrounding the ongoing death toll of COVID has been described as occurring predominantly in the elderly and people with pre-existing conditions, and those who continue to take precautions to protect themselves and others are viewed as illogically, even pathologically, anxious (Baer, 2023). The lack of critical information literacy demonstrated by many in our own profession regarding COVID-related information is also apparent in the way that we engage with information about autistic people, and I second Baer’s call for information professionals to consider the impact of power and privilege in relation to information literacy. 

Fully adopting the neurodiversity paradigm would require that we examine our implicit biases about who is permitted to be an authority on a subject, and how structural inequities have positioned non-autistic experts and their often deficit-based scholarship as the ultimate authority on autistic people. As educators, we have helped students develop an understanding of how issues of power and privilege impact supposedly authoritative information sources in other fields, such as when we note that the majority of medical textbooks have long pictured dermatological conditions on only white skin, significantly impacting physician knowledge and health outcomes for people of color. Just as systemic racism has led to white bodies historically being constructed as the default in medical information, systemic ableism has portrayed non-autistic ways of being as normal, therefore casting autistic and other neurodivergent people in the role of the deviant Other. 

It is particularly concerning, and not in alignment with our professional values, that LIS research about autistic college students fails to critically examine the way autistic people have been positioned and continue to be positioned in scholarship, including our own. Embracing the neurodiversity framework would mean addressing our implicit biases about who is a reliable information source about autism, and acknowledging that the mainstream storying of autistic lives has been constructed by professionals with deficit views, marginalizing the voices of autistic participants and scholars (Yergeau, 2018). Though engaging in such reflection and challenging these systems will be uncomfortable, such a shift will make our field safer for autistic participants and colleagues, resulting in more valuable and humanizing research. 

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Acknowledgements

My sincere thanks to Jessica Schomberg, Kieren Fox, and Ryan Randall for their insightful comments and guidance throughout the publication process –  your time and thoughtfulness are much appreciated. Many thanks also to Dr. Kristen Bottema-Beutel, whose feedback and mentorship were invaluable as I drafted this piece. 

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