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 the 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.

Advertisements

You’re invited to #libchat

I started #libchat in March 2011 while I was in library school. Years later, this vibrant and active chat group is still going strong! If you’re interested in libraries or educational technology, I encourage you to join in and make contact with some fantastic librarians on Twitter. This post is from the original #libchat announcement and serves as #libchat’s organizational guideline.

If you’re a librarian or bookseller, library paraprofessional or student, you’ve probably experienced the rush of energy & productivity that accompanies a trip to a conference or trade show.  Networking! Blog posts! New projects!  How do you find and maintain that energy at home? You join a Twitter chat, of course! Starting Wednesday, March 16, from 8-9:30 EST, and continuing every Wednesday, #libchat will host a meeting of the minds on books, libraries and technology. Think of it as a library conference at your desk.

How #libchat works

Libchat is modeled on other great Twitter chats like #journchat and #pr20chat.  If you’ve never participated in a Twitter chat before, here’s how it works:

Before and during the chat, tweet questions (without the hashtag) to me @nataliebinder. I’ll tweet them on the #libchat hashtag, something like this:

nataliebinder: Q1  Does your library lend ebooks?  Why or why not? #libchat

To participate, just reply with the question number, your response, and the tag “#libchat.”  For example:

you:  Q1. We love ebooks! #libchat

Services like TwitterfallTweetGrid, or TweetChat can make it easier to follow a chat.  Try some different models to see what works best for you.

Who should come to #libchat

Librarians, library and information students, booksellers, vendors, book critics and everyone who loves libraries and books. Twitter chats are a great way to meet new people and score some new followers & friends. 

Potential #libchat topics

  • Digital rights management.
  • Libraries and the digital divide.
  • Advocacy and budget negotiations.
  • Library school.
  • Employment and the MLIS job market.

These are just some of the issues we could explore in our first #libchat.  If there’s anything you want to ask your friends and colleagues, comment on this blog post or tweet them to @nataliebinder, and I will add them to the list of #libchat questions. At the end of the session, you can also tweet your library-related resources, products and blog posts on the hashtags #libchat and #libpitch. Hope to see you there!

The entreprenurial library

I’ve been doing some catching-up on how people around the world use and view public libraries in 2013. There is good news–people love and use (and build and renovate) libraries!–but there is also sobering news. While public support of libraries is strong, public funding of libraries is in decline, and I don’t think the trend is likely to slow down soon. The problem: a generation of government workers is retiring, calling in their pensions and starting to use their healthcare plans. Governments, already bruised by the recession, and faced with a strong anti-tax sentiment, have to cut something. And the benefits of libraries, while absolutely tangible and even lifesaving in some cases, are hard to see in one election cycle.

This is why I had some empathy (though not a lot of sympathy) for Mayor Gimenez of Miami, when he claimed, after planning to shutter 22 libraries in poor communities, that “the age of the library is probably ending.” I thought this was another case of a politician needing to be educated about how libraries serve his community and empower his citizens. After chewing on it for a while, I think he means that he simply can’t see a way to afford them. He doesn’t determine the budget, or the tax rate–he’s an executive, not a legislator–and the ambulances still need to run and the roads still need to be paved. There are several serious problems with this way of thinking (see the poem “The Ambulance Down in the Valley”), the most important of which is that the rising costs of pensions and healthcare are going to squeeze all public services and infrastructure*. If the age of the library is ending, so is the age of firefighting, unless we can find some way to do it all.

Still, I can’t really see a way out of this one that maintains the financial status quo. You can’t just wish for bigger budgets. Look at what’s going on in the UK. Britons love their libraries as much as we do, and they use their libraries just about as much, but that hasn’t stopped 200 libraries a year from closing and many more suffering from the death of a thousand paper cuts. Where political resistance is too strong to cut the libraries outright, they cut the budgets for materials and staff to the point where the library is no longer liked, then close it. Once again, I don’t think this is out of maliciousness. I think there are plenty of British politicians who take their kids to the library, or would like to do so. While I don’t doubt there’s a lot of ignorance and pessimism, I think there are plenty of them that know–really know, that a Kindle is not a substitute for a printed book, Internet access is more than an Internet connection, and an Internet connection is more than an iPhone. I think, like Mayor Gimenez, they just can’t see a way to make it work. The smiles of children don’t pay retirees’ pensions any better than they pay librarians’ meager wages.

If our library system is going to survive the next twenty years, we need a surge in public commitment to our public libraries–and by this I mean money, not answering “yes” on a survey–but we also need predictability and diversity in library funding.  As a librarian, I can’t plan for the future if I’m always pulling my budget out from under the guillotine at the last minute. That is not responsible financial management. That’s just treading water until I’m too tired to do it anymore.

Librarians need to be paid fair wages as educators with master’s degrees. Libraries need to be adequately staffed and funded. We need up-to-date computers, broadband Internet, educational technology, broad-and-deep book collections, buildings in good repair, money for interlibrary loan, and money left over to try new things–not Bermuda money, but enough money. Otherwise, all we’re doing is staving off the inevitable. It would be one thing if the libraries closed because people didn’t want them anymore. But that’s not the case. People want them as much as ever, we just don’t know where the money is going to come from.

Our leaders’ ignorance and inaction on this issue–their misunderstanding of the stakes, their reluctance to confront this fiscal shortfall–suggests to me that librarians must take the lead in figuring out how we are going to fund our libraries. I don’t expect libraries to give up on public funding (and I don’t expect governments to give up on libraries), but in terms of thinking of clever new ways to pay the bills, we are on our own.

This is a fundamentally different problem from advocacy, which has been a going concern in the library community over the last few years. But while I write letters to my representatives with the best of ’em, I don’t think we need to do advocacy that way anymore. I’m not sure we ever did. People support libraries to the tune of 91%. That’s as close to a sure thing as there is in politics. We might need to work on better educating people about how libraries are funded, but it’s time to move away from the whole “how will we survive in the digital age” myth. It mis-characterizes the problem and, in some ways, minimizes it.

Instead, I think we need to direct a majority our attention and our passion for innovation and outreach toward the funding side. For some of our libraries that means ensuring a better financial future by passing a dedicated library tax, establishing a legal requirement for a base level of library service (especially access to public computers), or making it more difficult to close libraries without a vote. That’s where something like EveryLibrary comes in. But in places where that is politically challenging, or where public funding is particularly challenged, we need to bring more of an entrepreneurial spirit to our libraries. That doesn’t mean privatization (a word that every librarian and every citizen should recoil from), but it does mean some libraries should be prepared to support themselves if public funding falters.

Libraries that are needed, but facing closure, can lead the way. The story of UK library funding is mostly a tragedy and an embarrassment (and maybe even illegal), but creative librarians and communities have found innovative and inspiring ways to keep providing library services. These include:

  • Working to establish the library as a publisher or a provider of “publishing support services”
  • Reducing energy costs through renewable power
  • Working more closely with businesses (for example, by co-locating a library and a shopping center, or a library and a cafe)
  • Collecting used phones and computers and either refurbishing them or selling them outright
  • Building more multi-use and multi-audience libraries that can be supported by 2 or more strong institutions (e.g. a local government, a community college, and a university, like Forum Southend-on-Sea).

We should also keep a close eye on what is going on in Miami, where smart librarians are offering alternative plans to fully fund the 42-branch system, including having libraries take over 311 service.

These solutions create multiple income/cost-cutting streams for the library without compromising our essential mission to offer information, books and access to computers for anyone who wants them.

In order to ensure equal access, government needs to be a central pillar of our library funding system. But the rise of an entrepreneurial and problem-solving spirit could invigorate our public libraries after seven bleak years. Libraries may be the only government services flexible enough to pursue alternatives like these. A demonstration of vision and innovation on the funding side would be welcomed by officials and viewed with pride by our communities, especially in areas where hours and locations could be restored. Financial stability will allow us the breathing room we need to take the next step in delivering library services.

This generation’s Carnegies are already working in our libraries. If we can find ways to anticipate budget problems and solve them before they reach a crisis, city and state officials may be more willing to meet us in the middle–hopefully with a check in hand.

* Incidentally, I am not trying to pit libraries against retirees, or say we should take from one to “save” the other. That’s not a realistic or ethical solution. If the pie is too small, the answer is to make the pie bigger.

Return your overdue books on August 31st

Clear your library account–and your conscience–on International Return Your Library Books Day.

They’re out there. Under your bed. On a child’s bookshelf. In a pile beside the door. Overdue books that need to be returned to the library. Now, it’s OK to turn them in.

It’s easy to forget to return library books. But library books belong to the city or county that you live in. When you keep a book for a long time, other people who want to read it don’t get the opportunity. Library books also represent an investment of millions of taxpayer dollars. And thousands of books go missing from library shelves, never to be returned again. Librarians miss their books–and your patronage!

Your pile of overdue books may even have prevented you from visiting the library recently. But it’s OK. Most of the time, library fines don’t accumulate over years. Each book will probably have a maximum fine of around $5.00. Even if you have a large fine, you may be able to negotiate it, receive partial forgiveness or pay it in increments. And while you may face a fine, you will not get in legal trouble for returning your library books, no matter how long they’re overdue. In fact, most librarians will be happy to see their long overdue books return to the library. So this August 31, show your support for libraries by returning every overdue library book you can find.

Here’s how it works:

  1. Return your overdue books. Gather them together and drop them in the appropriate book drop. Or mail them in.
  2. Pay your fines. You’ll feel better.
  3. Face the music. If you’ve lost or damaged a library book, pay for a replacement.

Thank you so much for returning your books. And keep in mind that you can celebrate Return Your Library Books Day every day of the year.

Summer Science Camp: Mars Challenge

In rural Florida where I work as a librarian, many kids have trouble accessing science education. Schools are struggling. A weaker school system also means we have a large group of students who are homeschooled or who attend the Florida Virtual School, decreasing opportunities for hands-on science education in a more academic setting. In 2012, I offered Summer Science Camp for the first time. Held at the public library the week before the start of the school year, this 4 day camp offered kids age 6-12 the chance to participate in group science, technology, engineering and math (STEM) activities. Parents were encouraged to join in and many enthusiastically participated.

On offer were activities in computer programming, microscopes, and structural engineering, but I think the kids’ favorite was our Mars Challenge. While we were lucky to be able to hold this camp at the same time as the launch of the Curiosity rover in August 2012, it’s a great free activity for libraries, schools and parents any time of year. Since my library is in a fiscally constrained rural county, I needed to focus on activities that included publicly available teaching materials and little to no budget.

Lesson

Each of my Summer Science Camp lessons started with a brief presentation that helped prepare kids to think about the challenge ahead. As you’ll see from the embedded PowerPoint, the lectures have a strong teaching/speaking component, supported by pictures and short videos. This is a good way to help younger kids engage with a PowerPoint presentation. After the jump, see a brief slide-by-slide description of the kinds of things that I talked about. For this lesson to hold the kids’ attention, the speaker should move quickly, use his or her own words, and spend less than a minute on each slide. Battledecks veterans should be familiar with this speaker-centered presentation style.

Continue reading