Autism spectrum disorder: a librarian’s personal primer

At the American Library Association’s 2014 Midwinter conference, a particularly lively session took place on libraries, technology and gender. It spawned a terrific Twitter hashtag, #libtechgender, and some very interesting discussions, both online and off. I wasn’t able to attend Midwinter, but I think this is an engaging, important subject, especially since the session took on the issue of intersectionality. Intersectionality is the conflation of race, gender, sexuality and ability issues, as well as an exploration of how they affect each other. With that in mind, I thought I’d write an essay about autism spectrum disorder, which I have, and which affects my job and political activism every day.

I’ve often wondered if librarianship attracts autistic people, or if there is a higher rate of this common disability among librarians. I don’t think anyone’s done a study on the subject, but I keenly remember how important school and public libraries were to me when I was a child. As quiet places, physically insulated by books, libraries were refuges from the social and sensory world, not to mention some very persistent bullies. As someone who was not as strong or fast as other students, I frequently ditched gym class and went to the library. Reading fiction helped me understand other people and develop a sophisticated theory of mind.

For me, libraries are strongly associated with safety, predictability, privacy, respect and civility, conditions I am constantly seeking. The role of text in the library, and in academia in general, is similar to the central role of text in my personal life. As someone with a disability that impacts cognition, or the way the brain processes information, I find information science and data analysis compelling subjects. I don’t think it’s a coincidence that I chose a career in libraries. I also know that autistic children still frequently find their way to the library. I think a good understanding of autism spectrum disorders is valuable for anyone who works in libraries.

Before I begin, a note: there is a lot of controversy about autism, both inside and outside the autistic community, along with a lot of deep disagreements and even rivalries. This is important to keep in mind when reading anything about autism, or any other cultural, social or political issue. While I identify as an autistic person, and might use some shorthand here and there, I don’t claim speak for all autistic people. I also haven’t done enough digging into the intersectionality of autism and culture, race, sexuality, economics, and gender. I encourage other librarians with autism spectrum disorders to share their thoughts and stories about how it affects their jobs and lives. There is very little information available about how autism affects people in adulthood, so anything you could say would be valuable. Where I generalize, I’m going to try to keep it to what is scientifically accepted, seasoned by what I have personally witnessed and experienced.

As usual, if you have questions or comments, you can talk with me on Twitter or reach me privately through my contact page.

What autism is

Autism, or autism spectrum disorder (ASD), is a cognitive disability that affects social interaction, communication and behavior. To be diagnosed with ASD, you need to have marked social impairment; some specific communication challenges; and repetitive behavior and thinking (often described as “intense or restricted interests”). These symptoms have to be present from early childhood, but you can be diagnosed at any time in your life. Autistic people often pursue diagnosis when their symptoms exceed their coping skills. That may happen in childhood, but also happens during adult life transitions, like leaving home for college, leaving college for the working world, or starting a family. Here is a good resource on the symptoms of autism. Here is the official diagnostic criteria from the CDC. Very common, but not included in diagnostic criteria, are sensory difficulties, memory problems, and a bit of physical weakness and clumsiness.

Like other marginalized groups, autistic people have higher than average rates of joblessness, poverty and emotional distress. These are often compounded by extreme social isolation. Sadly, much of that distress and isolation is caused by the way society views and treats autistic people, not by the disorder itself. For that reason, autistic people may want to keep their diagnoses private, or may never get formally diagnosed at all. When trying to include autistic students, patrons, job applicants or co-workers, it’s important to protect their privacy and affirm their own decisions about disclosure. There are lots of easy, low-cost ways to accommodate people without asking about their medical or disability status.

There is no medication for autism and nobody knows exactly what causes it. It’s probably a complex combination of environmental and genetic influences. There may be many different “autisms” with different causes, but they all manifest in similar enough ways that it makes sense to have a single diagnosis.

Terminology

Right now you can get diagnosed with several different disorders on the autism spectrum: autism, Asperger’s syndrome, pervasive developmental disorder–not otherwise specified (PDD-NOS), Rett syndrome, and childhood disintegrative disorder. This will be changing soon. When the DSM-5 goes into effect in October 2014, these diagnoses will become one diagnosis: autism spectrum disorder. As far as the medical field is concerned, everyone who faces these challenges will be in the same boat.

The difference between Asperger’s and autism has to do with when and how autistic children develop verbal and coping skills. In my opinion, it’s all tied in to an archaic diagnostic system that classifies autistic people based on their apparent “functionality.” I don’t think that’s very helpful, so I don’t mind shedding the Asperger’s label. But this is a very controversial and sensitive issue. It subsumes many years of independent Asperger’s research and advocacy into a larger, broader topic. It leaves a lot of people feeling concerned about whether the new diagnosis marks them as more or less disabled than they really are.

The broader diagnosis means it’s important to take theĀ spectrum part of ASD seriously, and remember that it includes the full range of abilities and challenges associated with autism. Even that leaves aside major questions about the overall value of labeling and the influence of the DSM. Many people with “mild” or “high-functioning” autism will likely continue to identify as “Aspergians” or “aspies” after the publication of the DSM-5, and there will continue to be independent Asperger’s groups and organizations. And that’s OK.

Common misconceptions

There are a lot of misconceptions and stereotypes surrounding autism and autistic people. One way to be “a good ally” is to help correct those misconceptions when you see and hear them. Here are a few that I’ve dealt with frequently.

Autism is not…

  • Nerdiness, geekiness, introversion or shyness. Autism is not a quirky personality trait. For that matter, being a geek is not a disability. I think autistic people have the same range of “nerdiness” and operate on the same spectrum of introversion/extroversion as any other group of people.
  • Other mental illnesses or cognitive disabilities. By itself, an autism diagnosis doesn’t say anything about one’s intellect, level of independence, leadership skills, mental health or emotional stability. In fact, being autistic has probably helped me learn to cope with stress, overcome anxiety, face adversity and roll with the punches.
  • A disease that needs a cure. Some people who have autism are severely disabled. I don’t want to minimize that, or reject any of the therapeutic approaches people take to improve their lives and health. But when I hear people or organizations talk about a cure for autism, it creeps me out. Autism affects the whole person. Because it has a particular impact on speech and communication, there is also a cultural element. When you talk about “curing autism” you’re talking about doing something to people’s brains or their genes, because of the way they communicate and behave and engage with the world. I think that has more to do with our culture’s fear of difference and struggle than it does with helping anyone.
  • An inability to feel empathy or love. This unfortunate, common, and rather cruel stereotype was one of the reasons I didn’t get diagnosed until I was in my 20s.
  • An excuse for harassment or abuse. I hear it all the time, when someone is accused of harassment: “He (or she) just doesn’t understand social cues.” I wish more people would publicly object when they hear this line. Autism doesn’t cause, justify or “explain” harassment. In fact, for a number of reasons, autistic people are much more likely to be targets of bullying.
  • Something that’s easy to identify or diagnose (without disclosure). You can’t tell if someone is autistic by interacting with them–except, of course, if they share their diagnosis with you. Lots of stresses and challenges affect socialization. Furthermore, by the time they reach adulthood, most autistic people have developed strategies that help them overcome their social deficits. Because these strategies involve a lot of practice and formal study, they may even help someone excel in business, entertainment or politics. Autistic challenges are both more pervasive (affecting overall quality of life) and less obvious than that.

Next steps

This is a very preliminary overview. There are a lot of other ways to explore this issue, including engaging in conversation and debate, reading more about autism and Asperger’s syndrome, and adding books about this issue to your library’s collection (if you don’t already have a collection of Asperger’s and autism resources). Your community might want to engage in a discussion about the DSM-5. It might be good to explore invisible disabilities and the idea of universal accommodation. I have some more thoughts on the positive aspects of autism; the importance of text; and how to make the selection process more equitable and the workplace more welcoming, but I’ll leave that for another post. Until then.

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