If you can fight your way past the ableism of a Google search, the massive online presence of Autism Speaks and a sea of neurotypical narratives, you can find the #ActuallyAutistic community. We live on the back pages of search results and within designated hashtags, marginally safe from our most vocal critics. It is in these spaces that we share our lives with each other. It is in these spaces that we seek and give support. It is in these spaces that we rest; weary from a world that isn’t made for us.
At all times, but especially during Autism Acceptance Month, we spread out online into discussions being held about us, without us, in an effort to educate and change the narrative—an ongoing campaign with varying rates of success. On good days, we share our conversations and observations, hopeful that our voices are being heard. On the hardest days, we trudge back to the only people who can truly understand our experiences and share the weight of our collective responsibility.
Like many autistics, I’ve long felt a sense of otherness. The way I view the world, my body language and speaking patterns, the challenges of sensory processing, these things are not represented in any other community I belong to. Isolation from non-autistic spaces, oppression and trauma—this is our shared history and it cultivates a deep sense of acceptance and respect for one another. Autistic is not our only identity; we are wildly diverse and an acknowledgement of that is essential to understanding the community.
Unlike other communities, I take mine with me wherever I go. On the bus, in a store, on my lunch break at work—I’m joining #Autchat or reading a new blog post from one of the many incredibly talented autistic bloggers. There is no central community space or official numbers; we overlap across platforms and websites.
Much like communities that people experience solely offline, I run into people I know in unexpected places. A friend from Twitter may pop up in a Facebook group or in an Instagram hashtag and I assume my feelings of surprise and happiness are akin to running into a friend at the grocery store. (This doesn’t happen to me because I generally don’t go to grocery stores—they’re sensory hell.)
Our community may be shaped by advocacy, but by no means does that define us. We have humor and levity, religion and discourse, book clubs and support groups. We share hopes and dreams and accomplishments. We are vibrant, active and deeply affirming.
The autistic community isn’t perfect. Humans are too complex and different for any such thing to exist. We experience ableism, conflicting goals, and differences of opinion, on matters large and small. What we do have is an open source culture, dependent on it’s members’ ability to alter, collaborate and better our community experience. I love all of these strengths and flaws. No one can take this away from us, not even Autism Speaks and the rest of our false allies. Our acts of community are defiant in a society that devalues our existence but it doesn’t deter us. It doesn’t even slow us down.
When I first accepted my identity as autistic (which is not the same as diagnosis), and acknowledged the otherness that has defined my life, I turned to the Internet, where I had always communicated best. What I found was disheartening, the validation of my worst fears. I was inherently wrong somehow, and there could be no gratification in acceptance of self.
It was only after I kept digging, certain that someone somewhere knew what it was like to be me and not just what it was like to be around me, that I found the fringes of my community. Each new experience started to heal a wound deep inside of myself. The acceptance I found, a salve for hurt I had internalized for so long. This community saved me and it will continue to save others.
This is not a plea of understanding, this is not a persuasive argument for the value of our community and this is not a defense of autistic culture. This is a celebration, an acknowledgement and a moment of reflection. This is a love letter to the autistic community and all of the amazing people that belong to it. ♥