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When I started working in early intervention over 30 years ago, none of my training focused on Autistic culture. The Autistic Self Advocacy Network defines Autistic culture as, “The culture built around the ways of speaking, thinking, and acting that come naturally to Autistic people, or which have been created by Autistic communities.” I’m thrilled to see that the definition and understanding of autism is expanding to include and celebrate Autistic culture. At the same time though, we need to acknowledge that Autistic individuals have been carrying the burden of making themselves understood for decades. I hope that neurotypicals can lighten that load by increasing their understanding of Autistic culture and how to truly create spaces where Autistic folks can belong and thrive.
Neurotypical Norms and Autistic Culture
I just finished reading Dr. Devon Price’s latest book, Unmasking Autism. As a parent of an Autistic adult, the book gave me new insights and deepened my understanding about Autistic life in a neurotypical world. When I told my daughter about how the book helped me, she gave me permission to share her experience of being Autistic in a neurotypical world.
So often in my daughter’s childhood, neurotypical people without much experience with Autistic individuals believed she should assimilate to their expectations and follow established social norms. She was encouraged to make eye contact, lower her voice, or stick with activities even when they made her extremely anxious. But when she couldn’t follow those rules, like always jumping in if she knew the answer to a question, she was labeled as rude. When she didn’t have the energy to participate in group work at school, she was labeled as lazy. But she wasn’t rude or lazy. She was experiencing the world around her differently than a neurotypical person.
What always concerned me was that others didn’t seem to believe what a toll trying to appear neurotypical took on her. They would see how capable she seemed through a neurotypical lens. She excelled in school due to her deep interest in academic subjects, she could discuss complex topics, and she had a deep and strong sense of social justice that led to spirited political debates. But when the neurotypical behavior demands were layered on top of these traits, I would see her energy falter. The extraordinary effort she’d expend constantly trying to understand if she was doing what was expected and monitoring her every word and action — even though these things felt like they were eradicating her very being — would push her to exhaustion and require significant time to recover.
Now, as an adult, she determines when and where she will show her authentic self. She actively seeks out people who are Autistic affirming and places that don’t expect her to mask her autism to be liked. It’s wonderful to see her excited to go meet new people at board game nights, where being Autistic and transgender are not only accepted, but embraced. She feels like she is finding her people. The shift from seeing autism as something to be changed or modified to a cultural identity to be celebrated means she doesn’t have to hide who she is or pretend to be someone she isn’t (most of the time).
Becoming Culturally Competent
In order for my daughter and other Autistic people to be able to be their authentic selves in more and more places, we need to continue to expand people’s understanding of autism as not only a difference, diagnosis, or disability, but as a culture too. In my professional life working in the disability, social work, and public health fields, one of the core values is providing culturally competent services. That means taking the client’s culture into account in the design, delivery, and evaluation of any program or service.
Being Autistically culturally competent means that we seek to learn and understand how being Autistic impacts life experience and influences thinking, communication, and actions. And then we need to go beyond learning and understanding and put this knowledge into practice by valuing and including an individual’s Autistic experience at home, school, work and in the broader community.
Challenges and Culture Can Coexist
Celebrating Autistic culture and recognizing the support needs of Autistic individuals can coexist. At AANE, we hear about the challenges Autistic folks are experiencing everyday: bullying at school, social isolation, intense anxiety, major depression, or sensory sensitivities. And we also hear of the undue burden many Autistic folks experience when they are seen as needing to educate others who may hold outdated perspectives about autism. Understanding Autistic culture means that we acknowledge the whole of Autistic experience – celebrating Autistic joy and interests and recognizing and responding to challenges that impact daily life.