Gillian Hayward

Abstract

More than 3.5 million Americans live with an autism spectrum disorder (ASD). Many of

those people could benefit from services and resources offered by public libraries. How well are

public libraries serving patrons with ASD and their families? How well are librarians trained to

recognize patrons with ASD and fill their needs? An electronic survey will explore these

questions with librarians in the 67 county public library systems across Pennsylvania as a

representative sample. The research will show if there is room for improvement in services and

resources offered, and if librarians are sufficiently trained to meet the needs of patrons with ASD

and their families.

Introduction and Problem Statement

Autism spectrum disorder is becoming more prevalent in the United States. More than

3.5 million Americans live with an autism spectrum disorder (ASD), and an estimated 1 in 68

children born has an ASD (Autism Society, 2016). Almost half (about 44%) of children

identified with ASD have average to above average intellectual ability (Centers for Disease

Control and Prevention, 2017). According to the CDC, people with ASD often appear the same

as other people, but they may communicate, interact, behave, and learn in ways that are different

from most other people (2017). People with ASD can range from gifted to severely challenged,

and some people with ASD need a lot of assistance in their daily lives, while others need less

(CDC, 2017). Many people with ASD can complete an education, be a contributing part of a

community, and have meaningful employment (Autism Society, 2016).

 People with autism spectrum disorder, their families and caregivers are all members of

the community, and should be provided with appropriate and thoughtful materials, programs and

services at public libraries. The American Library Association policy manual states that

“Libraries play a catalytic role in the lives of people with disabilities by facilitating their full

participation in society…Libraries must not discriminate against individuals with disabilities and

shall ensure that individuals with disabilities have equal access to library resources” (American

Library Association, 2017). Libraries must make every effort to ensure their collections and

services are inclusive of people with disabilities, and that assistive technologies should be

available (ALA, 2017). In addition to recommending that all graduate programs in library and

information studies provide instruction on the needs of people with disabilities, ALA also says

that:

“Libraries should provide training opportunities for all library employees and volunteers

in order to sensitize them to issues affecting people with disabilities and to teach effective

techniques for providing services for users with disabilities and for working with

colleagues with disabilities” (2017).

There are programs available across the United States that do target the issue of providing

services for patrons with ASD and their families and caregivers. The project Libraries and

Autism: We’re Connected was created by two New Jersey public libraries in 2008 to help train

libraries nationwide to serve people affected by ASD more effectively (Libraries and Autism &

Fanwood (NJ) Memorial Library, 2017). They provide free resources for libraries on their

website, and will provide in-depth training workshops in person (Libraries and Autism, 2017).

The Illinois State Library received two Institute of Museum and Library Services grants to help

libraries better serve patrons and family members impacted by ASD (Office of the Illinois
Secretary of State, n.d.). They hosted two stakeholder forums to discuss the issues, and are

currently implementing comprehensive training programs for librarians in Illinois and

nationwide, which include face-to-face workshops as well as webinars (Office of the Illinois

Secretary of State, n.d.).

Research Questions

This study will attempt to gauge the availability of programming, materials and resources

for patrons on the Autism spectrum and their families at public libraries, and determine if library

staff are adequately trained to recognize the need for, and provide those services.

 How are public libraries serving their users on the autism spectrum through

programming, materials and resources?

 How equipped are librarians to recognize patrons with autism and meet their information

needs, as well as those of their families and caregivers?

Literature Review

There have been very few research studies on services for people with autism in libraries.

Ghuloum and Alyacoub asked what the role of public libraries is for people with ASD in the

developing country of Kuwait, and how they could benefit if those services were improved

(2017). This study included a questionnaire to the families of people with ASD, as well as

surveys to librarians (Ghuloum & Alyacoub, 2017). They found that people with ASD, while

considered an important part of the population, are not well provided for at libraries due to lack

of training, insufficient budget, and lack of awareness and vision by library managers (Ghuloum

& Alyacoub, 2017). Mears presented a paper at the 2017 International Federation of Library

Associations and Institutions (IFLA) World Library and Information Congress which describes
case studies of libraries in the United Kingdom that have developed successful programs for

patrons, especially children, with ASD (2017). These include special autism-friendly times

during scheduled events (e.g. Harry Potter Book Night) and providing pop-up tents in the

children’s area so children with ASD can be in a quieter, less stimulating space to read.

Future librarians in library and information studies graduate programs are not always

taught about serving patrons with disabilities. In 2004, Walling surveyed schools with graduate

programs in library and information studies about their educational offerings related to serving

patrons with disabilities, and found that only 66% of schools require courses that teach about the

Americans with Disabilities act, and fewer require learning about assistive technologies and

other services. Once employed, professional librarians have a similar lack of on-the-job training

geared toward assisting people with disabilities, including ASD. A 1988 study showed that only

50% of Illinois academic librarians surveyed had “slightly positive attitudes” toward disabled

persons, often because they didn’t understand their needs (Dequin, Schilling, & Huang). Dequin

et al. state that “positive attitudes of academic librarians toward disabled students are therefore

essential for the provision of adequate library services to meet their needs” (1988, p. 28). Almost

thirty years later, Pionke studied patrons of a university library with a variety of disabilities,

including autism, and found that they have “a deep frustration with the [staff’s] clear lack of

training and sensitivity regarding interacting and assisting people with disabilities” (2017, p. 52).

Pionke summarized that there is a clear need for training programs and literature for library staff

to help them understand the needs of this user group (2017).

Assistive technologies can aid people with autism learn and locate information in

libraries, and studies about these technologies are helpful in understanding what services and

resources might be important to people with ASD. Assistive technologies are “any device,
auxiliary aid, or low to high technology tool that allows a user with a disability …to perform

tasks that would be extremely difficult or impossible without the apparatus” (Ennis-Cole &

Smith, 2011). Ennis-Cole & Smith found that school librarians are on the front lines of

implementing assistive technologies to help students with ASD, and that when they’ve done so,

those students have “flourished” (2011). Hayes et al. created prototype visual supports to help

children with ASD, and studied their effectiveness (Hayes, Hirano, Marcu, Monibi, Nguyen &

Yeganyan, 2010). They contribute to the guidelines for design and implementation of such

supports in learning environments. High school students with ASD were found to benefit from

the use of personal digital assistant computers to aid in their organizational skills in a 2010 study

(Gentry, Wallace, Kvarfordt, & Lynch). High school students with ASD were also the focus of a

study by Markey & Miller, which focused on developing and testing a strategy for school

librarians to employ to deliver information literacy instruction to these students (2015). This

strategy used video modeling, a technique in which students are shown a video of the desired

behavior and then are asked to imitate the model, to teach students how to access the online

library catalog (Markey & Miller, 2015).

Studies of people on the autism spectrum can help to answer the question of how they

might be given special consideration when visiting public places like museums and libraries.

Langa et al. conducted a study of the needs and motivations of families with children with ASD

visiting museums (2013). Their findings of some of the challenges that families with children

with ASD face when visiting public places (not feeling welcome, unpredictable behavior,

reactions of others) can certainly be applied to libraries (Langa, Monaco, Subramaniam, Jaeger,

Shanahan & Ziebarth, 2013). Pionke’s study of university students with disabilities found that

autistic students value a feeling of safety in the library, but can find the stacks intimidating
(2017). By understanding these needs and motivations, libraries and museums can provide

thoughtful services.

There are similar studies of different patron groups that inform the design and

methodology of this study. A study by Ross & Akin (2002) about services, programs, research &

training in public libraries for children with learning disabilities uses a similar survey structure

and questionnaire. A 2009 survey with similar methodology, of librarians serving patrons with

physical and mental disabilities, addresses related topics and finds that library budgets must be

structured to include services for patrons of all abilities (Bonnici, Maatta & Wells, 2009).

This study hopes to shine a light on the current state of public library programming,

materials and resources for patrons on the Autism spectrum and their families, and show how

well-trained librarians are to recognize the needs of patrons with ASD, and understand how to

fill those needs.

Research Method

The literature clearly shows that there is a gap in knowledge about the current state of

library services and librarian training for the population with ASD, and that this user group can

benefit from these services and training. The 2014 Pennsylvania Autism Census states that there

are over 55,000 children and adults with autism receiving services from the state (PA Bureau of

Autism Services, 2017). This study will use public libraries and librarians in Pennsylvania as a

representative population.

Librarians in all of the public libraries in the 67 counties in Pennsylvania will be

surveyed through an emailed questionnaire, which will include both quantitative and qualitative

questions. The survey questionnaire will collect data about the programs, materials and resources
offered by the libraries to their patrons with ASD and their families, as well as librarian training

to serve people with ASD (see Appendix for specific questions).

After gathering contact information for all of the branch libraries in Pennsylvania (from

the library system websites), an advance email will be sent explaining the study, and informing

potential respondents of the time period in which they will receive the survey questionnaire link

via email. The survey will be conducted using an online survey service. Because survey

questionnaires are often difficult to get replies to, an email reminder will be sent to non-

respondents after one week, with a deadline another week out.

The sample will be chosen from all valid responses by the systematic sample method, in

which every nth response will be selected until the total list has been sampled (Connaway &

Radford, 2017). N will be determined based on the total number of responses.

Data will be prepared by downloading it from the survey website to spreadsheets and

coding the responses. Yes/no and rating scale questions will be analyzed by charting the data

from each question. Free text responses will be coded by identifying in vivo codes, not from a

pre-selected code vocabulary. Analysis of results will determine categories and themes.

Examples of answers from the free text responses will be selected to illustrate the questions. It is

expected that preparation, coding and analysis of the data will take two to three months.

Potential Limitations

This survey is intended to provide a snapshot of autism services at public libraries in

Pennsylvania, which will likely be representative of services at public libraries nationwide. It is

not intended to be a comprehensive study providing detailed evidence of complete services

offered to patrons with ASD in Pennsylvania. The findings, however, will be more effective if

results are received from a large number of libraries.

Because multiple librarians at the same institution could respond to the questionnaire,

trends might seem to exist that have been magnified by this occurrence. A large responding

sample will help to minimize the appearance of spurious trends, as will the systematic sample

method used to select the final sample.

Research Quality

The questions for the survey have been written to avoid bias and multiple interpretations.

After informal testing, a pilot study will be conducted to identify questionnaire items that might

be misunderstood, or don’t prompt desired results (Connaway & Radford, 2017). Interviews will

be conducted with respondents in the pilot study to get their opinions of the survey process and

the questionnaire. For the actual survey, unique URLs will be assigned for each individual to

access the questionnaire, which will help to avoid duplication.

Anticipated Results

This study hopes to help fill a gap in the literature of studies about current availability of

library services for patrons with ASD and their families, as well as provide evidence of need for

librarians to understand the motivations and needs of patrons with ASD. It also hopes to

encourage libraries to consider patrons with ASD and their families in their training, resources,

and service design.

 References

American Library Association. (2017). ALA policy manual. Retrieved from

http://www.ala.org/aboutala/governance/policymanual

Autism Society. (2016). Facts and statistics. Retrieved from http://www.autism-

society.org/what-is/facts-and-statistics/

Bonnici, L.J., Maatta, S.L., & Wells, M.K. (2009). US national accessibility survey: librarians

serving patrons with disabilities. New Library World, 110 (11/12), 512-528. doi:

10.1108/03074800911007532

Centers for Disease Control and Prevention. (2017). Autism spectrum disorder (ASD). Retrieved

from https://www.cdc.gov/ncbddd/autism/data.html

Connaway, L.S., and Radford, M.L. (2017). Research methods in library and information

science (6th ed.). Santa Barbara, CA: ABC-CLIO, LLC.

Dequin, H.C., Schilling, I., & Huang, S. (1988). The attitudes of academic librarians toward

disabled persons. The Journal of Academic Librarianship, 14(1), 28-31. Retrieved from

https://www.journals.elsevier.com/the-journal-of-academic-librarianship/

Ennis-Cole, D. & Smith, D. (2011). Assistive technology and autism: expanding the technology

leadership role of the school librarian. School Libraries Worldwide, 17 (2), 86-98.

Retrieved from https://www.iasl-online.org/publications/slw/index.html

Gentry, T., Wallace, J., Kvarfordt, C., & Lynch, K. (2010). Personal digital assistants as

cognitive aids for high school students with autism: results of a community-based trial.

Journal of Vocational Rehabilitation, 32, 101-107. doi: 10.3233/JVR-2010-0499

Ghuloum, H.F. & Alyacoub, W.M. (2017). Activating the role of the public library towards
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doi: 10.1177/0266666916665436

Hayes, G.R., Hirano, S., Marcu, G., Monibi, M., Nguyen, D., & Yeganyan, M. (2010).

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doi: 10.1007/s00779-010-0294-8

Langa, L. A., Monaco, P., Subramaniam, M., Jaeger, P. T., Shanahan, K. and Ziebarth, B.

(2013). Improving the museum experiences of children with autism spectrum disorders

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web-based resources to meet them. Curator, 56, 323–335. doi:10.1111/cura.12031

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students with autism spectrum disorder: using video modeling and least-to-most prompts.

School Library Research, 18, 1-31. Retrieved from

http://www.ala.org/aasl/slr/volume18/markey-miller

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 Appendix

Potential Survey Questions

 Are you aware of any patrons of your library with Autism Spectrum Disorder? [yes/no]

 Does your library provide any programs specifically for patrons with ASD or their

families? [yes/no]

Please describe them. [free text]

 Does your library provide any materials or resources specifically for patrons with ASD or

their families? [yes/no]

Please describe them. [free text]

 Has your library system offered any training for staff about recognizing and interacting

with patrons with ASD? [yes/no]

Please describe the training. [free text]

 Has your library system offered any training for staff about designing programs for

patrons with ASD? [yes/no]

Please describe the training. [free text]

 Has your library system offered any training for staff about selecting materials or

resources for patrons with ASD? [yes/no]

Please describe the training. [free text]

 Your library could improve programs, materials and resources offered to patrons with

ASD. [rating scale from Strongly Agree to Strongly Disagree]

 Does your library plan to improve services offered to patrons with ASD? [yes/no]

If known, please describe the planned improvements. [free text]