LIS researchers and practitioners have a long history of working to understand and serve the needs of their communities. The prevalence of autism spectrum disorder (ASD), a neurodevelopmental disorder marked by social and communicative impairments, now measured at approximately 1 in 68 children (Baio, 2014), makes this is a growing segment of every community, whose specific needs are yet to be adequately addressed.
Recognizing the need for research in this area, the Institute of Museum and Library Services (IMLS) recently awarded grants to two iSchools to study the intersection of information services and autism spectrum disorder (ASD). This interactive panel will describe what researchers are doing to address information needs and improve services for those with and impacted by autism. Additionally, this panel seeks to increase awareness among LIS educators of the complexities of serving this growing population, as well as the importance of including it in library school curricula.
Florida State University. At FSU, a multidisciplinary team is working to develop evidence based strategies for academic librarians and library staff to better serve college students with ASD – Project A+.
Building on the work accomplished within a previous IMLS funded grant, Project PALS, a series of online training modules to educate librarians about ASD, and addressing the need for strategies specifically for the higher education environment as initially explored in Dr. Anderson’s dissertation (Anderson, 2016), Project A+ is working with three academic libraries to determine best practices in educating academic librarians about college students on the autism spectrum.
The results will be incorporated into an online implementation guide for librarians that will include step-by-step instructions for making the library more conducive for students with ASD, allowing for broad impact and the potential to influence and enhance practice in all types of libraries. Voices of students with ASD will figure prominently as they are surveyed and interviewed as part of Project A+, as will voices of librarians who identify as having ASD, currently serving on the A+ advisory board and vetting all content prior to dissemination.
This project has relevance for current practice in the enhancement of library programs, facilities, and services to students with ASD. The identified audiences for the resulting research findings and implementation guide include professional librarians, LIS students and educators, and researchers – but, the ultimate beneficiaries will be students with ASD themselves.
The University of North Carolina at Chapel Hill. Dr. Gibson’s current IMLS funded Career project: Deconstructing Information Poverty: Identifying, Supporting, and Leveraging Local Expertise in Marginalized Communities focuses on integrating critical disability, race and gender theory into an updated model of information poverty, and using this model to inform library approaches to integration of people with ASD into library planning and programming. The project is being done in partnership with the Durham Public Library, the Charlotte-Mecklenburg Public Library, and the Autism Society of North Carolina (ASNC).
The project builds on a previous study on the information needs and information source choices of parents of individuals with Autism in North Carolina (Gibson, 2017), which showed that very few of these parents use libraries to help them meet what they considered important information needs related to their children with ASD. Despite parents’ fears about their own information literacy (and their fear of searching for information about ASD on the internet), few parents considered libraries a trustworthy source for information or health information literacy training.
The current project engages individuals with ASD, their families, and library staff in interviews and focus groups about information needs, seeking and sharing. It also facilitates and records the process of planning a series of local public events addressing information needs identified among local library staff and ASD community. The study will yield practical information about information needs of people with ASD and their families, important information sources, a description of conditions that support information access or poverty in the study communities, and a guide for community assessment and local parent engagement. Interview and evaluation data will also be used to extend the scope of the study impact, and support development of a rich, intersectional theoretical model of information poverty that explicitly acknowledges place, community, and the needs of local, marginalized groups.
PANELISTS
Amelia Anderson. Dr. Amelia Anderson, project coordinator for Project A+, is a postdoctoral researcher at FSU’s iSchool. Dr. Anderson’s research focuses on young adults with ASD, including their experiences in the academic library as well as their communication in the online environment. Dr. Anderson served as the research assistant for Project PALS, A Laura Bush Professional Development IMLS grant that developed four online training modules for librarians and library staff to learn how to better serve their users on the autism spectrum.
Amelia Gibson. Dr. Amelia Gibson is an Assistant Professor at the School of Information and Library Science at the University of North Carolina at Chapel Hill. Her primary research interests center on health information behavior, local communities as information systems, and information poverty among marginalized groups. Dr. Gibson also served as PI for the Healthy Girls Know project, which explores health information seeking among Black and Latina teen girls, and the Disability Lines project, which explored information access and poverty among parents of individuals with Down syndrome and Autism.
Paul Wyss. Dr. Paul Wyss is the Distance Learning Librarian at Minnesota State University Mankato. He earned his M.L.S. at Indiana University and his Ed.D at the University of South Dakota. He received an Asperger's Syndrome diagnosis in 2007 and now devotes many of his energies toward informing those in academia of what it takes to be successful in higher education with an ASD. He serves on the Project A+ Advisory Board.
Charlie Remy. Charlie Remy is the Electronic Resources & Serials Librarian/Assistant Professor at the University of Tennessee at Chattanooga. Being on the autism spectrum himself, he is interested in how libraries can better serve the autistic population (both patrons and employees). He holds an MSLIS from Simmons College and a BA from Elon University. He serves on the Project A+ Advisory Board.
