I’m Autistic. I enjoy reading, producing, and especially participating in research. It’s something that I specifically set aside time to do because I find it rewarding, but also because I want the output of research to include the experiences of people like me. It’s one of the ways I advocate for improvements in the world for other neurodivergent people. But whether I’m doing the writing, or adding my voice to someone else’s research, there are a lot of barriers to having my voice heard as a neurodivergent person communicating about my own experiences.
There are a lot of barriers involved in the process of being a research participant. The vast majority of studies on humans don’t include neurotype in their selection criteria. That means that our experiences get lumped in with neurotypical experiences, and since they outnumber us so significantly, we are often drowned out. We know from research that specifically selected neurodivergent participants that pain often feels different to us, is expressed differently by us, and is managed differently when we’re patients in a medical context. Before this extra research was done, information on pain management was based on the broader population including neurotypicals, and we ended up with things like the Wong-Baker pain rating scale that works so poorly for Autistics. And because this broader research was done first, the neurotypical experience becomes the “normal” experience, a process called neuronormativity.
That neuronormativity creates another barrier: pathological or deficit mindset. The way attention works for me is different than it works for a neurotypical person, and when researchers got around to studying us, the “normal” type of attention was so firmly ingrained that any deviation from it wasn’t just seen as unusual or different, but as a problem. This means that people with differences in attention have attention deficit hyperactivity disorder. People who experience auditory sensations differently have auditory processing disorder. And of course, Autistics have Autism spectrum disorder. Criteria for these conditions include phrases like “deficits in social-emotional reciprocity” and “deficits in nonverbal communicative behaviors.” Autism criteria in particular include the concept of severity levels to indicate how severe the deficits of the disorder are for a particular person. That mindset lead to the widespread institutionalization, seclusion, and restraint of Autistics along with stigma for ADHD children in school. It also results in abusive interventions ranging from Applied Behavioral Analysis “therapy” where Autistic children are denied access to restrooms until they maintain eye contact for a certain amount of time, to aversive electric shock “therapy” that electrocutes children when they engage in behavior that the neuronormative interventionists deem undesirable such as hand flapping despite it being classified as torture by the United Nations. The more that neuronormativity is accepted by society, the more that society will see neurodivergent people as being incapable of understanding their needs or advocating on their own behalf.
While the electrocution of neurodivergent children is unlikely in most libraries, they still face challenges in receiving services at libraries. For example, a child with Tourette’s might encounter conflict with a library policy requiring quiet in reading areas. And we know that Autistic employment in libraries faces barriers in hiring, performance evaluation, unfair standards like the RUSA behavioral guidelines, compensation, and promotion. Since the founding of the Library Company of Philadelphia in 1731, we’ve had nearly 300 years of libraries in the United States, but the subject of service to neurodivergent patrons has only received attention in the last 40 years, and Autistic librarianship only in the last 10.
This leaves us with a situation where the neuronormative expectations in libraries were established and reinforced for around 250 years before research started being conducted to disrupt that status quo. Society has gotten very used to the idea that neurodivergent people are incapable of understanding their own experiences or advocating for their own needs, deciding instead that they know what’s best for us and speaking over us. Dismantling the inherent ableism in so much of librarianship and library services is an enormous uphill battle, and while a lot of progress is being made, there are still many areas that continue to treat Autistics and other neurodivergents as outsiders, broken people in need of the fixing by the neurotypical majority. A research project undertaken on the topic by researchers who are themselves neurodivergent is rare, and even the neurotypical researcher with the best of intentions analyzes an experience they have never shared. It is crucial that neurodivergent voices be centered in research and discussion around service and employment of neurodivergent people.
As many researchers do, I have many alerts set up in tools like Google Scholar, looking for those neurodivergent voices. I receive notifications about newly published research on a variety of topics of interest to me, including the intersection of neurodivergence and disability and libraries. Sometimes I’m delighted by what I encounter, like Nikki Andersen’s Chronically Honest article. Other times, I encounter an article like the one I read this morning. Claiming to offer an insider’s perspective on Autism’s intersection with libraries, the author identifies themself as neurotypical, and proceeds to spend 11 pages talking about the experience of Autistics while allocating a mere 7.5 sentences of quotation from actually Autistic people. Of the 19 sources cited in the paper, only 3 were from the actually Autistic people quoted. Throughout, it included person-first language (identity-first language is preferred by 91% of Autistics), used outdated terminology, and centered the voices of neurotypicals talking about the progress they’re making helping Autistics within the library deal with their disability.
Articles like this drive me crazy. Nihil de nobis, sine nobis. Nothing about us without us. Every article like the poor one I discussed will need ten written by actually Autistic people to counter its narrative and language choice and pathologizing viewpoint. Producing that work is an extra burden on neurodivergent people who are already having to work extra hard to deal with a world that isn’t designed with us in mind. It’s so much harder for us to advocate for ourselves and tell our stories when the neurotypical people are sucking up all the oxygen.
So if you’re neurotypical and thinking about using only a few sentences from actually Autistic people in an article titled Autism Spectrum Disorder: An Insider’s Perspective, please heed this advice from an actually Autistic person: don’t. Instead, find the voices of neurodivergent researchers and librarians, and share their articles. We’ll appreciate the help.