By Lei Wiley-Mydske
In this issue, Lei writes about creating the first autism lending library that is focused on the ideals of neurodiversity and autism acceptance. Now she is helping others do the same in their communities. This article is part of our cover series on four autistic trailblazers who are building, bolder, better lives for themselves and others.
It is fairly easy to find information about autism if you look. What is harder to do is to find information that is accurate, respectful, helpful and that centers the voices and experiences of autistic people. It is rarer still to find information that considers the ideas of neurodiversity, autistic pride and autistic culture. As an autistic adult and parent of an autistic person, and someone who is a really huge fan of autistic people in general, it’s important to me that our voices are not just tolerated but prioritized and celebrated.
In 2013, my son and I were at our local library and on a whim I decided to see what books they had available on autism to the people in my community. Of the three books that were on the shelves, all were in the parenting section. One was written by a non-autistic parent. One was written by a non-autistic professional and just one was written by an autistic person. All of the books were written for parents specifically and contained information about helping them to cope with an autism diagnosis that in my opinion, was both toxic and ableist. There was nothing about how to support and accommodate their children that considered their rights or dignity. None of them promoted a loving relationship between parent and child, but instead gave tips on managing and manipulating their children into compliance with neurotypical social norms. There was nothing that spoke to the invaluable expertise that autistic people themselves offered. The idea of celebrating autistic people as a valuable part of human diversity was unheard of. None of the information in these books reflected our reality or addressed our needs.
All of the books were written for parents specifically and contained information about helping them to cope with an autism diagnosis that in my opinion, was both toxic and ableist.
There are books and resources out there that do get it right, but they are often overlooked and ignored in the mainstream discourse surrounding autism. I knew that the right resources were there, but just not as widely available to people who might not know how to find them. There were so many better ways to educate people about autism, disability and neurodivergence. I knew that autistic people, adults and children alike needed access to resources that told them that who they are is not broken or a burden. I wanted autistic people to be empowered to be strong self-advocates and to know that having a disability was not negative or shameful. I wanted everyone to know that autism and disability are a natural and inevitable part of human diversity. That it is good to be proud of your neurology and to know that we all deserve to be respected and included no matter how much help or support we need, no matter how we communicate, how we move or experience the world.
Later as I thought of how disappointing the resources available in my community were, I mentioned to a friend who is also an autistic adult that I should just start our own library with materials that could actually help people. He told me that I should. Together with my son and the support of my non-autistic spouse, I created the Ed Wiley Autism Acceptance Library. It is the first autism lending library that is focused on the ideals of neurodiversity and autism acceptance.
The first thing we did was to gather books, films and resources from donations and crowdfunding. We found a space in our local community center to meet people and set up our collection a few times a month. We also decided that in order to be more flexible and accommodating, we would do appointments as well. During our first year we also held a special community event that has become an annual Autism Acceptance Month tradition where we collaborate with Autistic Women & Nonbinary Network (AWN) in April for a free film screening about acceptance in our community.
Most the books and films that we offer for lending are written by autistic or otherwise disabled people. We try to showcase books and materials that are most reflective of the neurodiversity paradigm and that advance the cause of autism acceptance and the rights and dignity of disabled people. Many people are surprised that we also offer poetry, fiction and art by autistic authors and creators as well as information on autism. We also have a big focus on inclusive education and inclusive communities, so we have lots of resources to help people know their rights and to understand what real inclusion actually means.
I wanted autistic people to be empowered to be strong self-advocates and to know that having a disability was not negative or shameful. I wanted everyone to know that autism and disability are a natural and inevitable part of human diversity.
We have also developed our own resources on autism acceptance with the neurodivergent narwhals. These are short infographics and posters that seek to break down more complex ideas so that they are accessible and easier to understand. As a hyperlexic, I often have trouble processing information as fast as I can read it. This makes reading an entire book somewhat difficult for me. I read things multiple times in order to fully understand and I wanted to find a way to help people who may have similar issues with reading or who may just not have the time or patience to read an academic essay or book on the neurodiversity paradigm. Accessibility is more than just being able to easily navigate a space, so it is very important to me that the library is not just about books but about sharing ideas and creating access to information.
We have also developed our own resources on autism acceptance with the neurodivergent narwhals.
Several months after we started the library, I was contacted by Lana Thomas, who wanted to start a similar library in her community. She founded Unbound Books Autism Acceptance Library. Soon, others from across the United States and around the world contacted us as well about starting a library and challenging the negative messages about autism in their communities with acceptance and by embracing neurodiversity. We now have numerous grassroots community lending libraries that are working together to exchange ideas, resources and information to create a better world for autistic people. Some are mail order, some are set up as Little Free Libraries, some collect books to then donate to their local public library, local schools and disability organizations. There are so many ways to run a neurodiversity library. It really depends on what is most accessible to you, the time you can devote to it, the needs of your community and the money/donations that you are able to raise.
My son and I started our library partly due to frustration with mainstream messages about autism. We wanted to build a resource for our community that was an alternative to fear and stigma. It is also our hope that by fostering understanding and educating people about autism from a place of respect and acceptance that we can help to create a better, more accessible and more inclusive world for everyone. As the network of neurodiversity libraries grows, that hope becomes closer to a reality every day.
Currently Active Neurodiversity Libraries
Unbound Books Autism Acceptance Library
MacDonald Autistic Pride & Neurodiversity Lending Library
Little Free Neurodiversity Library
The Good Sunflower Autism Acceptance Library & Resource Center
Neurodiversity & Parenting Library of Long Island
Long Island, NY
Neurodefiant Autistic Pride Lending Library of NOVA
NeuroDefiant Autistic Pride Lending Library of NOVA
Los Angeles Neurodiversity
Los Angeles, CA
Ed Wiley Autism Acceptance Lending Library
Lei Wiley-Mydske and Lana Thomas of Unbound Books and also facilitate a Facebook group for people who want to bring neurodiversity libraries to their own communities. They welcome anyone interested in learning more, even if you are not sure how or when you want to start your own library.
Read more from our “Off the Beaten Path” trailblazers in Zoom Autism Magazine, Issue 14:
- A Journey with Fire by Brigid Rankowski
- The Ideal, the Real, and Disability Advocacy by Finn Gardiner
- Building Pride and Feeling the Weight of Marginalization by Kris Guin
Don’t miss these other great articles in Issue 14:
- Cummings and Goings: Creating Your Own Footsteps to Follow by Conner Cummings
- Live Your Dreams Autistically by Becca Lory
- Will There Be a Future Beyond Acceptance? by Megan Amodeo
- The View from Here: My Road to Motherhood by Carly Fulgham
- What have you accomplished that you or others thought you would never be able to do?