What is Autistic Culture? Understanding the World Through a Different Lens (Part 1)
Introduction
For most of my life, I only thought of Autism as a neurodevelopmental disorder. Despite having an Autistic sibling and professional experience working with Autistic children, my understanding of Autism was limited to a neurotypical-centric, deficit-based perspective. I saw Autism as a medical condition to be treated, and not much else.
That all changed in 2023, when I was diagnosed with Autism at the age of 30. Being late-diagnosed myself, I was very interested in how Autism presents differently in women and minorities, leading many of them to be diagnosed later in life. In searching for explanations for my own experiences, I began exploring Autism from the perspective of the Autistic community. What I discovered profoundly changed my understanding of what it means to be Autistic, and improved my life more than I ever could have imagined. In addition to gaining a deeper understanding of myself, engaging with the Autistic community has given me a sense of connection and belonging. After a lifetime of never quite fitting in, I was shocked to discover a group of people where socializing felt natural and comfortable. I cannot overstate the positive impact of the neurodiversity-affirming movement on my life.
Whether you’re Autistic or neurotypical, I hope this post will serve as a helpful overview of Autistic culture. Autism may be a medical diagnosis, but it’s also so much more than that. It’s a way of being that shapes how a person thinks, interacts with the world, and relates to other people. Similar to other marginalized groups, the Autistic community has a rich and diverse culture. This post is the first of a two-part series providing an introduction to Autistic culture, including what it is, where it came from, and key aspects of the culture.
Defining Autistic Culture
You might be wondering how a medical diagnosis such as Autism can also be considered a culture. To understand this, let’s start by examining what a culture is. According to Cambridge dictionary, culture can be defined as “the way of life, especially the general customs and beliefs, of a particular group of people at a particular time.” In other words, culture is how a group of people experience the world, including what those people value and how they act. If you’re familiar with queer or Deaf culture, Autistic culture can be thought of in a similar way. Essentially, when individuals who share a particular characteristic come together, they form a community with a shared social identity and culture.
Although Autistic people share a diagnosis, Autistic culture isn’t about the clinical definition of Autism. Instead, it is about the shared lived experience of Autistic individuals. Autistic culture encompasses the shared values, social norms, language, and identity that connect Autistic individuals. Neurodiversity-affirming spaces allow Autistic people to express themselves freely, without having to mask as neurotypical. Although not all Autistic people feel connected to Autistic culture and spaces, many find it healing to engage with the culture and spend time with others who share their neurotype. After a lifetime of feeling like the odd one out, Autistic communities can provide a much-needed sense of belonging.
A Brief History of Autistic Culture
You might be wondering where Autistic culture comes from, given that it originated from a medical diagnosis. While it may seem odd at first, this shift from medical diagnosis to cultural identity has occurred in a number of marginalized identities. For example, being queer was once believed to be a mental health condition. As queer people formed communities and advocated for acceptance, public opinion largely shifted to viewing queerness as a part of natural human diversity. Now, queer culture is widely accepted and embraced, both by queer individuals and their allies. Similar to being queer, being Autistic is gradually transitioning from a disorder to cultural identity.
Although Autistic people have existed throughout history, Autism as a diagnosis was not formally recognized and added to the DSM until 1980. Even then, diagnosis was mostly limited to young white boys. It wasn’t until 2013 that Autism was redefined more broadly, and the medical community began to recognize Autism in women and racial minorities. So, until recently many Autistic people had no way of knowing they were Autistic, and thus wouldn’t have even thought to connect with other Autistic individuals.
That all changed with the rise of the internet, which created a way for Autistic people to share firsthand information directly with large numbers of people. As a result, Autistic awareness began to rise in the general public, leading more people to self-identify as Autistic. Because anyone can post about their experience online, information about Autism was no longer limited to medical descriptions, which can be technical and difficult to relate to. Instead, people started posting personal stories and experiences, describing Autism from an Autistic perspective. Having access to more human descriptions of Autism expanded the Autistic community, because more people could see themselves in these stories.
In addition, the internet allowed Autistic people to create safe spaces for their culture to develop. Online forums, blogs, and social media allowed Autistic people to connect and share their experiences, even if they weren’t physically close to each other. In these online spaces, Autistic people created communities that prioritize their own values and communication style. These communities allowed Autistic people to interact and express themselves freely. The authentic connections formed in these safe spaces contributed to the rise of Autistic culture and community.
Core Values and Norms in Autistic Culture
Direct Communication and Honesty
Autistic people often prefer direct communication, both as the speaker and as the listener. For many Autistic people, using literal, direct speech comes naturally, and attempting to override this natural inclination is difficult and exhausting. Thus, Autistic people tend to speak directly, without mincing words. In neurotypical spaces, this direct communication may come across as blunt or rude. However, most Autistic listeners appreciate straightforward communication and understand that the speaker is simply being clear, not unkind.
Along with direct communication, many Autistic people deeply value honesty. Neurotypicals often convey criticism in tone, facial expressions, and body language rather than being upfront about negative feedback. Many Autistic people are unable to read these cues, and thus miss negative feedback because the words themselves were positive. Over time, many Autistic people have accumulated a plethora of traumatic experiences around the resulting misunderstandings, feeling like others turn on them without warning or reason. As such, many Autistic people consider honest communication to be a kindness to others. Although direct and indirect speech may seem like opposites, Autistic people use direct language for the same reason neurotypicals use indirect language: to avoid hurting the other person.
Deep Focus and Passion (Special Interests)
You may be familiar with the stereotype of an Autistic person who is obsessed with trains. This would be an example of a special interest, often affectionately abbreviated as “spin” (SPecial INterest) within the Autistic community. A special interest is more than just a hobby; it’s a passion that brings a person deep joy. An Autistic person may hyperfocus on their special interest for hours at a time. Hyperfocus refers to a state where one becomes fully immersed in the task at hand, often losing track of time. In addition to creating massive bursts of productivity, many neurodivergent individuals find hyperfocusing on their special interest both relaxing and energizing, boosting their overall wellbeing.
Many Autistic people love to talk about their special interests, and will “info dump” about them if given the opportunity. Within the Autistic community, individuals often bond by exchanging info dumps about their special interests. Neurotypicals may misinterpret info dumps as being self-centered. “They only want to talk about trains! Don’t they care about my day?” However, this is a misunderstanding. Instead, think of info dumping as a bid for connection. Many neurodivergent individuals have experienced social rejection as a result of their communication style, including info dumping. Thus, sharing a special interest requires vulnerability and trust, showing a desire for deeper connection despite the risk of rejection.
Western medicine has traditionally viewed special interests as pathological, a “fixation” that should be corrected. However, preventing a person from engaging with the things that bring them joy can have severe mental health consequences such as low self-esteem, depression, anxiety, and suicidal ideation. Forcing neurodivergent people to hide who they are is convenient for the neurotypical majority, but it’s deeply unethical. Instead, Autistic joy and expression should be celebrated, including special interests.
Respect for Autonomy and Consent
Many Autistic people deeply value autonomy and informed consent, probably because so many Autistic people have experienced forced compliance. Those who were diagnosed in childhood may have undergone behavioral therapy, which teaches Autistic children to act neurotypical, often using coercive techniques. Even those who avoided behavioral therapy likely still experienced forced compliance, simply by virtue of living in a world designed by and for neurotypicals. Deviation from expected (i.e. neurotypical) behavior is heavily punished socially, especially for women and racial minorities. As such, many Autistic people learned to hide their Autistic traits from a young age, as everyone around them showed through words and actions that their natural way of being was unacceptable. Forced compliance is especially difficult for Autistic people with the PDA subtype (Pathological Demand Avoidance, or Persistent Drive for Autonomy), whose psychological safety depends on feeling like they have autonomy. Given all this, it’s no wonder so many Autistic individuals value autonomy and consent: because it was taken away from them from a young age. As a result, autonomy, consent, and respecting boundaries are deeply valued and prioritized within the Autistic community.
Stimming and Self-Regulation as Normal
Stimming, or self-stimulatory behavior, refers to repetitive actions that Autistic people use to regulate and express themselves. When I first heard of stimming, hand flapping and rocking came to mind. While these are common stims, they are certainly not the only ones. In fact, the ways that Autistic people stim are as diverse and varied as the individuals themselves. Stims can be large and obvious, or they can be subtle, such as with hair twirling, fidgeting with a piece of jewelry, or biting the inside of one’s cheek. Stims can involve any of the senses. Staring at a lava lamp, listening to a favorite song on repeat, counting steps, singing, humming, repeating phrases, chewing gum, and eating sour or crunchy candy are all examples of stims. Some stims involve movement or body position, such as rocking, spinning, or hanging upside down.
Autistic people stim for many reasons: to self-soothe, to express positive or negative emotions, or simply because it’s fun! Although some neurotypicals may consider stimming undesirable or weird, repressing stims is unhealthy and potentially psychologically damaging. Unless a stim is directly harmful (e.g. excessive skin picking), stimming should be accepted and normalized. The Autistic community embraces stimming as a form of personal expression and self-regulation, and encourages people to stim freely and without shame.
Acceptance Over Assimilation
Just like everyone else, Autistic people want to engage in authentic self-expression and be accepted for who they are. While convenient for the majority, forcing Autistic people to “pass” as neurotypical is unethical, ableist, and psychologically damaging. Unfortunately, most traditional therapies focus on teaching Autistic people to act neurotypical. Although Autistic people do want and need support, it must be done in a way that validates their authentic selves. Recently, more providers are understanding this necessity, and offering neurodivergent-affirming programs. These programs help Autistic people cope with living in a neurotypical world, while simultaneously embracing Autistic authenticity and self-expression. Social spaces within the Autistic community also strive to be neurodiversity-affirming, encouraging individuals to lean into their natural way of being and communicating with others.
You may be familiar with the Autism awareness movement. While awareness is a good start, it’s really only the first step. Many people are aware of Autism, but still think of it as a neurodevelopmental disorder requiring treatment, rather than a human difference requiring understanding and acceptance. For this reason, many people within the Autistic community now advocate for Autism acceptance, not awareness. Autistic people deserve to be accepted for who they are, not forced to repress their true selves for the convenience of others. Thus, the neurodiversity-affirming movement emphasizes acceptance over assimilation.
Conclusion
This first post is the first in a two-part series about Autistic culture. This post introduced what Autistic culture is, where it came from, and described the core values and norms of Autistic culture (direct communication and honesty, special interests, respect for autonomy and consent, stimming as normal, and acceptance over assimilation). To learn more about Autistic culture, head over to part 2 of this series, which discusses the language and symbols of Autistic culture, as well as individual differences and why Autistic culture matters.