Project PALS library service and autism : Please consider autistic perspectives concerning ‘Autism Speaks’

This evening, I completed “About Autism in the Library,” the first of four modules in the Project PALS online course, “Serving Library Users on the Autism Spectrum” (offered through OCLC WebJunction).

Among course positives: Libraries support people with autism at all ages and stages of development, and I appreciate this course placing an emphasis upon lifespan service to people on the spectrum. As I indicated in “Check Your Knowledge” responses upon completing the first module,

• Story read-alouds that feature characters with autism can “mirror” or validate this population’s experiences, and promote understanding of people on the spectrum among the wider public.
• With its emphasis on quiet and a clearly-defined and organized structure for information, the library offers an environment that is comforting to people on the spectrum.
• The library can provide interest-based activities and groups that offer the chance at social development.
• The library can help individuals and families new to an autism diagnosis by connecting them with information.
• Libraries provide access to job-hunting resources and autism-spectrum characteristics themselves can be an asset on-the-job in libraries.

I especially appreciate the promotion of autism spectrum disorder as compatible with work in libraries. It recommends that staff consider positions at their libraries “that might be conducive for an individual with ASD.” It offers specific examples at entry-level, mid-range and professional levels in a potential library career.

“While there is no list of ideal jobs, an individual with ASD might explore his or her special interests, depending upon his or her strengths and weaknesses. The following are some areas to consider: Entry level - shelving; mid range — computer technician, data entry, clerical assistant; professional — website/graphic design, system librarian, archivist, and virtual reference.”

Other positives include lists of credible sources for medical information about autism and professional associations and additional resources for library service to this unique population.

One big negative was the over-reliance on Autism Speaks for information and resources.

If libraries genuinely want to serve an autistic population, they need to know about the controversy and divisiveness that is generated by Autism Speaks — most recently addressed in an op/ed by Steve Silberman that has been published in the Miami Herald and the Los Angeles Times.

“Imagine a world in which the leadership of the NAACP was all-white; now consider that not a single autistic person serves on the board of Autism Speaks. This absence makes itself felt.

“As people on the spectrum have struggled to overcome years of stigma and negative stereotyping, the group has framed their condition in terrifying and dehumanizing terms. ...

“But there’s more at stake here than political correctness. As one of the largest private sponsors of autism research in the world, Autism Speaks helps set the global scientific agenda.

“Founded in 2005 at the height of parental anxiety about vaccines, the organization has lavished most of its funding on research uncovering prenatal risk factors for autism. It has not truly committed to serving the needs of autistic people and their families.”

Project PALS went beyond simply drawing attention to resources produced by Autism Speaks. 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 recommends. 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.

The constant references to Autism Speaks were grating and offensive, as was the unquestioning acceptance of it as an “advocacy organization.” I feel that this course module should have offered greater balance, especially considering that it listed several organizations for resources and information. (I suggest one addition to listed organizations, and that’s the Autistic Self-Advocacy Network.)

I ask the developers of Project PALS to heed their own precautions, that “information on the Internet is unregulated.” Among questions that you recommend to evaluate organizations, please consider the extent that people with autism play leadership roles and shape policy in any “advocacy group.”