< Back Blog / The ENABLEd Librarian: The Story Behind Targeting Autism
The ENABLED Librarian: April/May 2018
1 May 2018
The ENABLEd Librarian: Becoming an Inclusive Librarian in an Accessible Library
1 March 2018
The ENABLED Librarian: Reunion Turns Into Collaboration
1 February 2018
The ENABLED Librarian: Where There is No Library or Librarian
1 January 2018
The ENABLEd Librarian: The Story Behind Targeting Autism
1 December 2017
The ENABLEd Librarian: The Story Behind Targeting Autism
Since 2014, Targeting Autism, an IMLS grant project based at the Illinois State Library in Springfield, Illinois, has grappled with the challenges of providing excellent library services, including needed accommodations and programming relevant for residents impacted by autism. To understand why autism should be an important focus of libraries, we need only to acknowledge its prevalence (affecting more than two million Americans) and the role of libraries.
Simply put, libraries exist to reach all residents in their community and to do so they must be welcoming. Libraries should embrace diversity, fostering acceptance and understanding. They should exist as models of inclusive environments.
As the mother of a 23 year old son with Asperger's Syndrome, a form of autism, I have been well aware of the difficulties in raising a child with special needs in a neurotypical world. The challenges faced in dealing with deficits in executive function, social competency and life skills can be enormous and often impede the possibility of achieving an independent and purposeful life. The parental advocacy required to provide needed academic accommodations can be a full-time job in itself. Plus, parental support is not enough to effect positive results. Teachers often lack the time, skills and resources needed to ensure the academic success of these students. Necessary therapeutic supports are often unavailable or too costly for most parents to provide. Furthermore, no one outgrows autism. Too often, the child with autism becomes the unemployed and dependent adult with autism. While the individual with autism needs to learn compensatory skills to adapt to a neurotypically biased society, social institutions and potential employers also need to learn how to be welcoming and inclusive of people with neurological differences.
I discovered that much of what my own son needed in his life to foster a sense of security was the welcoming support and understanding of people he interacted with in his daily life. The fact that many people with autism lack a sense of belonging reveals the failure of our society to be actively inclusive. As a starting point, a new definition of diversity, which includes neurodiversity among racial, ethnic, gender and cultural differences, needs to be promulgated.
As both a librarian employed at the Illinois State Library and an autism mom, I became interested in researching what libraries were doing to address the needs of the large population of individuals and family members impacted by autism. I felt that libraries could and should play a role in supporting residents with autism; and because I was employed at a state library, I felt uniquely positioned to network with libraries in Illinois and across the nation.
In 2013, I conducted a survey that went out to librarians throughout Illinois to assess their knowledge and experience of patrons with autism. I wanted to see if respondents perceived this as an important issue in libraries, and to what extent efforts were made to engage individuals on the spectrum.
I received responses to the survey from librarians, representing 202 multitype libraries across Illinois. Of the responses, 150 indicated that they offered no special services, accommodations or programming designed to serve their patrons with autism. Conversely, 170 respondents indicated that it would be extremely valuable to attend a summit connecting libraries and autism that would include autism experts and various community stakeholders in addition to librarians. As part of my inquiry, I also collected numerous stories from parents who reported negative experiences at their public libraries. These included stories about being thrown out of the library after their child had a meltdown. Others told of avoiding library visits because they had a stereotypical view of libraries as quiet places that would not be welcoming to their kids. One mother wrote, "… It takes a village to raise a child with disability. Unfortunately for us, the library was not part of our village…."
The need to inform and engage librarians and public services staff with autism experts and other community stakeholders was evident in the survey results and anecdotal stories. Responding to this need, I decided to write an IMLS National Leadership Forum grant proposal addressing the need for a venue to begin an educational dialogue/forum aimed at improving library services and programming for patrons with autism and their families.
At the direction of IMLS Grant Program staff, I contacted Dr. Ruth Small of Syracuse University to discuss Project ENABLE's contribution to disability training for librarians. Project ENABLE included a depth of subject matter and excellent training tools freely available to librarians nationwide. Having researched other library initiatives that focused on serving their patrons with autism, it became clear that these efforts were few and geographically disparate. I felt strongly that there needed to be a way to extend the reach of autism training for librarians, nationwide. Project ENABLE was and remains uniquely positioned to increase the proliferation of skills and resources fundamental to the creation of accessible and inclusive libraries.
In 2017, IMLS funded a Laura Bush 21st Century Training grant which expanded Targeting Autism to provide a combination of in-person and online librarian training, as well as, consultations. Project ENABLE has assumed a major role in educating librarians and library staff as part of this initiative. Currently, they are expanding their disability education to include more in-depth autism-related content and resources. Project ENABLE has greatly enhanced the Targeting Autism project and we look forward to continuing our successful collaboration in achieving ubiquitous, inclusive library services.