Serving Autistic Library Users: Fostering Inclusion While Meeting Individual Needs
February 1, 2018
Eric Edwards, Illinois State Library
Despite individual librarians’ differences in perspectives and experiences, librarianship, as a whole, can be considered a progressive profession, dedicated to improving not just services for the core group of patrons, but access to information for all members of society. One group that has the potential to benefit the most from these efforts are differently abled individuals and their families. Autism (formally referred to as Autism Spectrum Disorder, or ASD) is one of those conditions that presents libraries with unique challenges in ensuring their services are as equitable as possible.
As well-meaning as many librarians are, especially in their public-service mindset, preconceived notions about certain user groups can cloud judgment and hinder delivery of the best possible level of service to that group. This can be especially true in the case of autism, since some librarians may not have much, if any, first-hand experience interacting with autistic individuals. One common misperception, stemming from popular culture (including the movie Rain Man), is that all autistic individuals are “savants,” or possess unusual or extraordinary intellectual abilities. Conversely, some people may view autism as always including intellectual challenges, while in reality, people who experience behavioral difficulties function across a wide range of intellectual ability. Another common misperception regarding autistic individuals and their abilities is that all autistic individuals are pretty much alike in the challenges they face, and so there is a “one-size-fits-all” approach that libraries can take in meeting their needs. The reality is quite different, however. For instance, the range of language and communication skills among autistic individuals can vary widely. Some autistic individuals have excellent language and verbal skills, while others are more non-verbal and need assistance in communicating. Even among non-verbal autistic individuals, the means by which they express themselves vary significantly. Some use an assistive augmentative communication device, such as a picture exchange communication system (utilizing cards with images on them to convey multiple ideas, including full sentences) or a digital software program that is on their phone or tablet. Other autistic individuals employ sign language to communicate.
With a very broad (and often vague) notion of what autism is, and what challenges autistic individuals face, it can be difficult to take concrete steps to make the library environment as welcoming as possible. For example, making it clear what services the library offers, including providing adequate signage, is something that libraries might overlook. It is easy to fall into that “one-size-fits-all” trap, especially when serving a large and diverse patron group in which it may seem daunting to try meeting the individual needs of all library users, autistic and non-autistic. More significantly, library staff who do not know what to expect from autistic users can often misinterpret behavior, such as having a meltdown, as “dangerous” and requiring some sort of disciplinary action. In addition to prompting overreaction on the part of library staff, such a situation can make using the library even more frustrating and frightening for autistic individuals and their families, potentially discouraging them from using the library in the future. D | Eric Edwards, Illinois State Library | Another widespread misperception is that the information needs of autistic individuals are different from those of other patrons. This can hinder the entire interaction between librarian and patron, to the point that the autistic individual does not achieve his or her goal in using the library. Even though communicating with an autistic patron may present more of a challenge, and it may take longer to ascertain the person’s specific information needs, the librarian’s mission remains the same: providing the best service possible and giving the patron a reason to return to the library.
GETTING IN THE DOOR
For many patrons, challenges with accessing the library include transportation, conflict with work hours or childcare commitments, and other obstacles. Once they reach the library itself, however, navigating the collection and other services is relatively straightforward, particularly when a library staff member has pointed them in the right direction. For autistic individuals and their families, however, making it into the library and knowing their way around is not enough to ensure a positive and productive experience. Much of the fear can stem from feeling socially marginalized, and even ostracized, on a broader level, because of being “different.” Furthermore, autistic users also need to feel as if they are part of the library community and its services, and are not merely present in the building. Thus, creating a welcoming physical environment is a critical first step. Although there is a perception that libraries are “quiet spaces,” anyone who has visited one knows that noise levels can vary drastically, depending on the area of the library and the time of day. Having a space in which a patron can calm down, if necessary, and refocus is important. At the same time, library staff members need to be aware that some parents of autistic individuals may fear they will be asked to leave if their children make too much noise or are disruptive in some other way. Thus, overcoming the notion that the library is solely a “quiet space” is crucial.
Another issue related to the physical environment is sensory processing difficulties. The amount of sensory input that certain autistic individuals can manage varies. For some, “over-stimulation” is an issue. In library environments, fluorescent lights can be particularly problematic, due to buzzing and flickering that may go unnoticed by non-autistic patrons. Background noise can be another distraction, especially if there is a loud activity occurring in a particular part of the library; an autistic patron may feel the need to move to an area of the library where there are fewer distractions. In the case of children’s activities, or even group activities for adults, too much tactile stimulation, such as in crafts or other hands-on projects, can create difficulties. For other autistic individuals, however, lack of stimulation is the problem, as they need more sensory input than the average person does. For instance, they may need to touch objects, walk back and forth, or perform other physical actions.
Beyond the physical environment, the social one is another area in which autistic individuals may not feel comfortable. For younger children and their parents, participating in a group activity may be awkward because of concerns that the child will act oddly or have a meltdown, due to stress from social stimulation. Older children, who are more aware of how their autism makes them “different,” may voluntarily choose not to participate. Adults may be hesitant to ask for help, due to uncertainty over how to express their needs clearly. Even if an autistic patron is comfortable in expressing her or his needs, frustration will mount if staff members are unfamiliar with non-verbal communication, including sign language, that an autistic individual might use.
Executive function and self-regulation are two other challenges that can affect autistic individuals’ social interactions. Essentially, executive function and self-regulation help people plan, prioritize, and complete tasks, while controlling their impulses and emotions. Autistic patrons who struggle with this may arrive late to an activity, not be well prepared or remember specific instructions, and not prioritize tasks well enough to complete an assignment or activity in a timely manner. In an academic setting, with students facing a number of time-consuming tasks in studying for tests and writing papers, interpreting instructions correctly and following directions can be especially frustrating.
Colleges and universities, especially large public ones, can face additional challenges in making their libraries welcoming, as the campus itself can be a confusing place, and new students are often away from home for the first time. If a campus has multiple library locations, for instance, and the administrative structure gives each library independence (especially for departmental libraries, such as history or biology), a change that is implemented in one library may not be enforced at a different one, even though the same autistic patron or patrons may use both libraries. Also, particularly on older campuses with many libraries that were built before the Americans with Disabilities Act (ADA) went into effect, the physical space may vary depending on the location, and a strategy that might work in one setting may not be as effective in another one.
Regardless of how welcoming a library’s physical and social environment might seem, an autistic individual will still face significant frustration if he or she cannot read the library’s materials. Also, for those autistic patrons who are visiting a library for the first time, it can be an especially unnerving experience, even if the library has already taken steps to create an “autism-friendly” environment. This is especially true if a library is large or difficult to find one’s way around in, and there is not clear signage. A child who is visiting the library for the first time may feel particularly unnerved, as any new experience can seem overwhelming.
MAKING THE ENVIRONMENT MORE WELCOMING
Even though each library may have its own specific resources and challenges in addressing the needs of autistic patrons, there are a few steps that all libraries can take as a starting point to meet their mission to make their spaces and services as inclusive as possible. These include addressing any issues relating to noise and lighting, which, as noted above, affect many autistic patrons. Once a library has identified the specific needs of its autistic users and determined what resources are available to build a truly autism-friendly environment, it can then proceed further.
A map of the library, or signage that is color-coded, is a good first step. To prepare children to visit the library for the first time, staff might want to create a “social story,” which can explain basic information about the library in a clear format while using pictures to help convey meaning, and make it available on the website for viewing ahead of the visit. The presentation should also include photos of the different areas or rooms in the library, along with pictures of the staff so that children can become familiar with the people who will be assisting them.
Noise-cancelling headphones are an easy and cheap way for libraries to give autistic individuals a method of avoiding distractions. In the case of hands-on activities, providing latex-free gloves or other hand coverings can help patrons feel more comfortable and, at the same time, ensure that they can be part of the group and feel as if they belong socially. For patrons who need stimulation, small fidgets can help calm them and enable them to concentrate. Other sensory items, such as special seating, weighted lap pads, or small blankets with different types of fabrics, can aid in providing a more positive and productive library experience. For patrons who struggle with executive functioning, reminders such as calendars, timers, and checklists can help them stay on task and reach an objective.
In an academic library, particularly on a large campus, coordination among the different library locations, and between librarians and other departments that play a role in administering the libraries, is crucial. Bringing in parties from outside the library introduces knowledge and perspectives to the discussion that librarians might lack. Conducting walk-throughs of the different libraries on campus can help librarians and outsiders become more familiar with the specific challenges each location faces in making its space and services as welcoming as possible to autistic students.
Through all of these initiatives and steps, it might be helpful for a library to consider how improving services for autistic patrons fits into the broader goal of making libraries more accessible and friendly for differently abled users in general. Serving the needs of all users, including differently abled ones, is a major underlying principle of the American Library Association, articulated in its Library Bill of Rights. Regardless of library type, size, or location, it is likely that multiple users will visit who are differently abled and may face significantly varying challenges in navigating the library space. The ADA has led to substantial improvements in public accommodations for differently abled individuals, including making library buildings more physically accessible. One challenge in recognizing the needs of autistic patrons is that it can often be a “hidden” condition, and the steps a library needs to take may not be as obvious as those for accommodating patrons in wheelchairs, for instance. Studying ADA guidelines and considering universal design (a method of making public spaces, including libraries, as accessible to as many people as possible) are strategies that any library can use to fulfill its mission of serving the full community.
Libraries should also keep in mind that improving services for autistic individuals, and differently abled individuals more broadly, is part of the overall customer-service ethos. Many changes, such as clearer directions and maps in the library, will create a more welcoming environment and positive user experience for all patrons, regardless of any specific challenges an individual patron might face. One issue libraries that are part of schools, universities, or other larger organizations face is that they are not always included in disability training for the institution as a whole. Similarly, MLIS degree programs and other pre-professional training, do not always include courses or other resources focused on serving differently abled users.
Even though there is still much work to be done in raising awareness of autism and ensuring that libraries meet the needs of autistic individuals and their families, progress is noticeable. As recently as 2008, there were no significant regional programs or models for making libraries “autism-friendly,” and there was very little professional literature on the subject. At the 2011 ALA Annual Conference in New Orleans, however, there were seven individual sessions covering programs for autistic patrons, and a preconference program at the 2012 Public Library Association Conference focused specifically on meeting the needs of autistic individuals. Even with the growth of the programs mentioned above, however, ensuring that libraries provide the best service possible to autistic individuals in the long-term will rest on the education, experimentation, and feedback that libraries and their autistic patrons share. As the groups work together, they can help libraries continue to meet, as fully as possible, their goal of providing excellent service to every user who walks in the door.
KEEPING UP WITH THE LATEST APPROACHES
With the many misperceptions concerning autistic individuals, the challenges they face, and what services libraries should provide to create a welcoming environment, how can libraries ensure they are as autism-friendly as possible? Regardless of the library type, the broader community it serves, or the number of differently abled individuals who come in the door, educating staff members by making them aware of the latest techniques and strategies is critical. Raising awareness of what autism is (and is not), what challenges autistic individuals and their families face in using libraries, and how libraries can adapt to meet the specific needs of their autistic users, are key first steps. Beyond increasing staff’s knowledge of the available resources, however, what concrete initiatives can libraries undertake to make their environments more welcoming to autistic individuals and their families?
- At the Illinois State Library, Suzanne Schriar and Mary Pelich are spearheading the Targeting Autism Forum. The program grew out of several grants that the State Library received from the Institute of Museum and Library Services. Phase I of the project focused on helping libraries understand the needs of autistic patrons and identify resources they can use to make their environments more “autism-friendly.” Phase II, which is ongoing, covers training, including in-person and virtual events, that give librarians the knowledge to begin actually implementing some of the changes. The program has included two in-person forums, both held at the State Library, at which speakers from Illinois and around the country have shared their experience and advice. More information about the Targeting Autism Forum is available at http://www.cyberdriveillinois.com/ departments/library/libraries/targeting-autism.html.
- Project ENABLE, which was launched in 2010 and has received substantial funding from the Institute of Museum and Library Services, produced the first general training for librarians that focused specifically on services for differently-abled patrons. Dr. Ruth Small, of Syracuse University’s School of Information Studies, has played a major role in the program’s growth. Project ENABLE began with in-person workshops for school librarians in New York State, but it has since expanded to include public and academic libraries nationwide and features online training for individuals unable to attend the face-to-face meetings. The project’s site, accessible at https://projectenable.syr.edu, has seen two million visitors worldwide and has almost 2,000 registered trainees. Training modules cover such topics as disability awareness, law and policies, and facility design, and each module has various interactive components, including quizzes and games. Thanks to being part of the Targeting Autism initiative, Dr. Small has been able create a Project ENABLE module that focuses specifically on autism and will launch next spring.
- What about those libraries that would like to improve their services for autistic users but lack the funding to do so? The Autism Welcome Here grant program, which is part of the Libraries and Autism: We’re Connected initiative and just completed its third annual round of grants, provides libraries with the necessary tools. The application period for the fourth year starts September 1, 2018. More information on the program, including the projects that the grant recipients have undertaken, is available at http://www.librariesandautism.org/index.htm. Also, Dan Weiss, Director of the Fanwood (New Jersey) Public Library, has created a music video on the grant program; viewing it, at https://www.youtube.com/watch?v=k2E91_PIfcg, is a good starting point for libraries that are seeking ideas for making their services more “autism-friendly.”
- At Eastern Illinois University, Steve Brantley and Stacey Knight-Davis work with STEP (Students with Autism Transitional Education Program) to help make Booth Library as accommodating as possible to autistic students. Library staff provide specialized instructional sessions for STEP students. Staff also familiarize STEP graduate assistants with the library’s services and resources, as they also work with autistic students through the program. By interacting with autistic students and learning of their needs, Booth Library staff have determined that placing tables set aside for study close to the reference desk makes it easier for autistic students to overcome communications barriers and feel comfortable seeking assistance. More information about STEP is available at http://www.eiu.edu/step/.
- Holly Jin, of the Skokie Public Library, has been heavily involved with the SNAILS (Special Needs and Inclusive Library Services) networking group. The group consists of librarians working in youth services who meet regularly to exchange best practices and programming ideas. Members of the group have regular interaction not just with autistic patrons, but with young people who are differently-abled in other ways. Staff from SNAILS member libraries are regular participants in the State Library’s Targeting Autism Initiative, which gives them an opportunity to build on the group’s discussions by exchanging ideas with an even broader range of library practitioners and autism experts, including some from outside Illinois. To see the latest programs and initiatives that SNAILS has undertaken, go to https://snailsgroup.blogspot.com/.
Holly Jin, of the Skokie Public Library, has been heavily involved with the SNAILS (Special Needs and Inclusive Library Services) networking group. The group consists of librarians working in youth services who meet regularly to exchange best practices and programming ideas. Members of the group have regular interaction not just with autistic patrons, but with young people who are differently-abled in other ways. Staff from SNAILS member libraries are regular participants in the State Library’s Targeting Autism Initiative, which gives them an opportunity to build on the group’s discussions by exchanging ideas with an even broader range of library practitioners and autism experts, including some from outside Illinois. To see the latest programs and initiatives that SNAILS has undertaken, go to https://snailsgroup.blogspot.com/.
- JJ Pionke, of the University of Illinois at Urbana-Champaign, has created a series of library guides that cover autism and other conditions. The guides include background on the challenges that individuals with the conditions face, along with recommendations for assistive technologies and other techniques and tools. These guides can be viewed at http://guides.library.illinois.edu/prf.php?account_id=57164. Pionke notes that one advantage of library guides, and online resources more generally, is that they allow autistic individuals to use the library from home or another environment that may be more conducive to their academic success. This can be especially true during finals or other busy times, when the library environment may be more stressful.
- As part of a project that has just started, Dr. Amelia Anderson, of Florida State University, is putting together a website that focuses specifically on meeting the needs of autistic individuals in academic libraries. The website is part of a grant from the Institute of Museum and Library Services. One of the end results of the initiative, titled Project A+, will be the publication of an online training manual for academic librarians that will be available for free. To track the progress of Project A+, go to its website, http://aplus.cci.fsu.edu.