On Aug. 2, 2016, I completed a four-module course and was awarded a certificate in “Serving Library Users on the Autism Spectrum (Project PALS).”
As a woman on the autism spectrum pursuing a library career, I wholeheartedly advocate library services that support this patron demographic. My role as stakeholder made it doubly meaningful to earn this professional certificate.
In four modules, the course addresses “About Autism in the Library,” “Arranging the Library Environment,” “Communicating with Individuals with Autism” and “Interacting with Technology.”
I found much of practical benefit when taking the four-module course. Among course positives, libraries support autistic people at all ages and stages of development, and I appreciate this course placing an emphasis upon lifespan service to people on the autism spectrum.
Especially beneficial is a promotion of ASD as compatible with work in libraries. It recommends that staff consider positions at their libraries “that might be conducive for an individual with ASD,” and offers examples at entry-level, mid-range and professional levels in a potential library career.
A highlight of Module Two was the first-hand perspective of Emily Lawrence, a librarian on the autism spectrum. Lawrence described the effect of a library environment as it aggravated her difficulties with sensory integration, spatial confusion and social anxiety.
As beneficial as I found the course, it had one very troubling aspect. The first module, especially, over-relied on on Autism Speaks for information and resources.
(Far from being an “advocacy organization” as the first module and course publicity suggested, Autism Speaks is a main contributor to controversy and divisiveness in the autism community. In the words of John Elder Robison when he resigned from its Science and Treatment Boards, “Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.”)
This warning is reflected by an online resource recommended in the course’s fourth module. The Autism Wiki features a disclaimer about its curated social networks:
“Not all of these sites have been screened for ableist attitudes. Be leery of any website that supports Autism Speaks or Quiet Hands, speaks against vaccination, discusses curing autism, or demonizes autism. These attitudes can be extremely damaging to autistic people, and have resulted in deaths.”(What are “Quiet Hands?” The phrase refers to forcibly stopping a person’s repetitive movements. This repetitive behavior, commonly called “stimming,” is most prevalent among people who are on the autism spectrum.)
Project PALS went beyond simply drawing attention to resources produced by Autism Speaks. In its first module, it recommended that libraries participate in Autism Speaks promotions and display its “Light it Up Blue” campaign logo on library websites.
I don’t want my library or anywhere else to “Light it Up Blue” for “awareness” as the module recommended. A single blue puzzle piece is not the universal symbol for autism, it’s promotional imagery used by Autism Speaks.
Displaying Autism Speaks imagery and dressing your staff in blue sends me the message that autism is not welcome here. It tells me you accept — or at least, fail to question — the dehumanizing and degrading stereotypes with which Autism Speaks frames our condition.
Autism Speaks made lesser appearances in successive modules, mainly highlighted as a curator of further resources about autism.
When recommending this course to other library workers, I simply ask that they review for themselves, any resource listed in this course. One ideal lens is to consider the extent of autistic people’s involvement. Do they serve in leadership roles and and shape the organization’s policy? And do the sites display the types of ableist attitudes that Autism Wiki warns against?
“Serving Library Users on the Autism Spectrum (Project PALS)” was offered through OCLC WebJunction. Produced in collaboration with the Florida Center for Interactive Media, the course was developed through the School of Information and the College of Communication and Information at Florida State University. It was funded by a Laura Bush Professional Development grant from the Institute of Museum and Library Services. (PALS stands for Panhandle Autism Library Services.)