Resource Update: 10 Books with Positive Autistic Representation

Image Description: Text saying "April is Autism Acceptance Month" is superimposed over a yellow and pink gradient. At the center is a rainbow colored infinity symbol resembling a sideways figure eight. This symbol is commonly used by the autism community in place of the puzzle piece.

Credit: Made using Canva

It is quite common for the voices of medical professionals, family members, and other allies to be given greater trust, respect, and acknowledgement than the people who live with the disabilities themselves. Autism advocacy is no exception. In the case of autism, this has historically led to medical abuse, filicide, social isolation and exclusion, limited access to education, employment, adaptive tools, individually tailored therapies, and much more. Don't get me wrong. Allies are a really important part of any fight for equality, including this one, but it's also important for allies and advocates to touch base with autistic folks to make sure that the things they are advocating for truly reflect the interests of their loved ones. To help support constructive conversations about autism and advocacy, I've created a brief Q&A sheet below.

• Q: If "autistic" is the adjective we use for someone who has autism, what word do we use for someone who doesn't?
  • A: We use the word "allistic." Allistic isn't a pejorative word. It is simply a way to indicate that the person does not have autism. Similarly, neurotypical is a word for someone who does not have a developmental disorder like autism or ADHD.
• Q: What is the difference between "autistic," "neurodivergent," and "neurodiverse?" Do they all mean the same thing?
  • A: Not exactly. "Neurodivergent" indicates that the person has a developmental disorder that makes their neurology different from that of other people.  For example, people with autism, ADHD, and Down Syndrome can all be considered neurodivergent. "Neurodiverse" refers to a type of diversity within a group of people. If a group of people has members who have Down Syndrome, ADHD, and autism as well as people who are neurotypical, we can consider that group to be neurodiverse. If everyone in a group of people has ADHD, that group of people is neurodivergent because they are different from the social majority, but that group is not neurodiverse.
• Q: Should I use person first language or identity first language?
  • A: This is a tough one. Quite a lot of people in the autistic community prefer to use identity first language because the way their brain works in intrinsic to who they are, and everything they experience is filtered through the lens of their autistic brain. Others prefer to use person first language because they want to emphasize that they are a person first and foremost and their personhood should not be forgotten, even when talking about their diagnosis.
• Q: What is the difference between the "autistic community" and the "autism community?"
  • A: The "autistic community" refers to people who have autism and only people who have autism. The "autism community" refers to people with autism and other people who are impacted, like family members, caregivers, therapists, and medical professionals.
• Q: What is the difference between "autism" and "Asperger's Syndrome?"
  • A: Asperger's Syndrome is an older way of referring to some people with autism who have lower support needs. It stems from a time when we did not fully recognize the spectrum of ways that autism can look and feel. Some people who were diagnosed with Asperger's Syndrome prefer to use this term because it is familiar to them. However, many people are move away from using this diagnosis for two main reasons. Firstly, Autism Spectrum Disorder does a better job of recognizing that there is a huge diversity of ways that autism can impact an individual, not only on the day of their diagnosis, but also day to day, month to month, and year to year. Secondly, Asperger's Syndrome is named after a Nazi scientist who abused neurodivergent people during the Holocaust. Renaming this diagnosis is one small step toward reframing the way we think about autism.
• Q: Is autism a disability?
  • A: This is an interesting question with more facets than we can cover during a short Q&A, but here's a rough overview. There are two main models of disability. The medical model of disability indicates deficits within an individual with a diagnosis and focuses on curing the individual. The social model of disability points to lack of social acceptance and inaccessibility as the most disabling parts of a person's life. People in the disability community can point to either model at different times depending on their needs and experiences. 
• Q: I'm used to hearing people refer to autistic people as "high functioning" or "low functioning". Why are people now starting to use phrases like "higher" or "lower support needs?"
  • A: Many autistic people are advocating for a change in terminology for a few reasons. Over the years, indicators like "high" and "low functioning" have led to different forms of discrimination. People identified as "high functioning" often struggle to access the resources they need because they are assumed not to need any assistance, support, or accommodations. People identified as "low functioning" tend to be assumed not to have intelligence or social value and are often excluded from employment and educational opportunities or from society in general. By using phrases like "higher" or "lower support needs," we can recognize that the support needs a person has can change. We can also recognize the person first, rather than assigning value based on ability. By fulfilling someone's needs for accommodations, accessibility, or adaptive tools, we empower that person to live as their full self and to pursue things that are important to that person.
• Q: Does autism need a cure?
  • A: No. neurodiversity is diversity. Autistic people are just another type of person. People with autism and their families need support, acceptance, and accommodations so that they can live empowered lives. Everyone has value and can contribute to the good of the family, the community, and beyond. Autistic people don't have to be cured in order to do this.
• Q: I'm used to seeing the puzzle piece as the symbol of autism, but some people are telling me to use the infinity symbol instead. Which one should I use?
  • A: Most of the autistic community in the US will encourage you to use the infinity symbol. The puzzle piece was coined by the organization Autism Speaks which has a history of failing to listen to the voices of autistic people and lobbying for forms of therapy that have proven to be harmful to autistic people. They have also branded autism as a scourge which destroys lives and families. Most people who use the puzzle piece don't know this history and are trying to do good by supporting autistic awareness. In the future, the autistic community hopes people will use the infinity symbol instead. This symbol has been chosen to show that there is no right way of thinking and that everyone is different but equally valuable.
• Q: Is there a problem with "lighting it up blue?"
  • A: Like the puzzle piece, "lighting it up blue" is part of Autism Speaks' branding and awareness strategy. The autistic community prefers to use the color red to represent autism or rainbow colors to represent neurodiversity. To support Autism Acceptance Month, we should use the infinity symbol colored red or rainbow and we should "light it up red."

Want to join the conversation? Follow Underground Bookshelf on social media:

Like what you read? Share Underground Bookshelf with people in your network: