Individuals with Autism Spectrum Disorder and their families make up a large and growing portion of the U.S. populace. Autism Spectrum Disorder (ASD) is a developmental disability and serves as an umbrella term to describe a profile of neurodevelopmental differences found in approximately 2.41% of individuals (Xu G et al. 2018). Individuals with ASD are highly heterogeneous. and exhibit characteristics that vary in expression and fall along a wide continuum of intensity and life impact. Research on parenting children with Autism Spectrum Disorders (ASD) suggests that parents often have a wide range of unmet information needs across their children’s lifespans, and that helping families meet these needs can improve social, emotional, and health outcomes. Community-based institutions (including libraries) hold enormous potential for supporting families of people with disabilities and a range of neurodiversities, but often lack awareness of their unique needs and effective provisions of support. As a result parents commonly experience difficulty understanding and navigating systems of care, struggle to find and secure appropriate services, experience fragmented and inadequate support, encounter under-funded, under-equipped, and under-informed education and healthcare systems, and report difficulty finding trustworthy information (Carbone, Behl, Azor, & Murphy 2010; Gibson, Kaplan, & Vardell 2017; Jacobson & Mulick 2000). Combined, these challenges contribute to family fragility, decreased well-being, and poorer quality of life for people with ASD and their families. Information seeking as a mechanism for increased agency and coping has been well recognized in the LIS literature (Chatman 1996; Harris et al. 2001; Savolainen 1995; Wilson 2000); and, though less prevalent, particularly observed in information behavior studies of parents who have children with significant health concerns and disabilities (Al‐Daihani and Al‐Ateeqi 2015; Gibson 2014; Jackson et al. 2008; Mackintosh, Myers, and Goin-Kochel 2005; Özyazıcıoğlu and Buran 2014). Still, like many marginalized groups of people, individuals with disabilities and their families commonly experience chronic information poverty (Chatman, 1996) Information poverty has been described as a complex social phenomena characterized by conditions of information scarcity or overload that inhibit, misdirect, or prevent access to life relevant information. Chatman (1996) found these conditions to be deeply rooted in systemic inequities, conflicting beliefs and value systems, fear, and self-protective behaviors.
In 2013, the American Library Association presented the Declaration for the Right to Libraries, a public document asserting the role and influence of libraries in communities and individual lives. The declaration states, “Libraries are the great equalizer. Libraries serve people of every age, education level, income level, ethnicity and physical ability. For many people, libraries provide resources that they could not otherwise afford – resources they need to live, learn, work and govern.” Despite this proclamation, research on the information needs and experiences of individuals with disabilities and their families is scarce. A review of the available literature, as a whole, offers several revealing explanations. First, despite a strong and vocal history of advocacy and action within the LIS field, the efforts and lessons learned by those on-the-ground are not abundantly reflected in the LIS literature. Second, strategies and interventions outlined in the literature far too often lack empirical grounding and are detached from the disability research on quality of life experiences of this community. Third, much of the available literature presents only a narrow view, focused on individuals with physical, visual, and auditory disabilities. Consideration of individuals with intellectual disabilities and profound sensory sensitivities is largely absent. Finally, few studies actively solicit and incorporate the voices, perspectives, and priorities of individuals and their families they strive to understand and support.