Actually Autistic: Reclaiming Autism Awareness Month

Happy Autism Awareness / Acceptance month! It's actually been fascinating because there's quite a few reactions to that statement:

1. "My child's autism is a disability, not something to celebrate."

2. "People are overdiagnosing themselves and it takes away awareness from real autism"

3. "I am autistic all of the time, why do we need a month? This is superficial""

4. "Autism comes with so many negatives - this is not anything to celebrate."

Honestly.. none of those reactions are wrong. They're all coming from real places and experiences. From exhaustion, from erasure, from years of being spoken about instead of spoken to. 

There are a few fantastic articles about the problem with this month here and here.

There's quite a lot of intensity surrounding this month. Realistically, was this designed by neurotypical people with neurotypical people spewing out information about Autism? Sure. And that's important to name. Because historically, this month has not amplified Autistic voices. It has been a performance to many.

I am a late diagnosed Autistic woman and mother to two Autistic daughters. For me, Autism was diagnosed in my sibling in the 90's when it wasn't "accepted" -- no superficial awareness in sight. I remember the first time I saw "Autism awareness" bumper stickers, ribbons and puzzle pieces popping up in the mainstream around the early 2000's. It was interesting. It was particularly interesting because I spent my childhood with a deep understanding engrained in me that this is something that should not be spoken about. We don't mention it. We tuck it away. The message that implicitly came with this was "this is something to be ashamed of."

I continue to work through a lot of internalized stigma I have toward Autistic folks — including myself. Getting a diagnosis didn't erase decades of absorbing that shame. It just gave me something to finally push back against. And honestly, for me, this month — imperfect as it is — is a point of opening conversations up. A crack in the wall. A place where we can begin to normalize the "otherness" that has always separated us from a world that wasn't built with us in mind.

I continue to work through a lot of internalized stigma I have toward Autistic folks, including myself. Getting a diagnosis didn't erase decades of absorbing that shame. It just gave me something to finally use to understand myself. I had answers to the "why's" of my entire life. Why did I feel so different from everyone else? Because I was. That is healing, and that is the type of peace that many people are seeking with self diagnosis. But there continues to be resistance in the psychiatric community (see our podcast on gatekeeping autism diagnoses here).

Having Autistic daughters has changed everything for me. It has cracked me open in ways I wasn't expecting. It has forced me to look at my own experience with a clarity I spent most of my life avoiding.

I deeply understand parents who say "Autism isn't something to be celebrated" because there are definitely days I grieve the parenthood I had planned for them. I had a picture in my head. A blueprint. And that is my own rigidness, and the set of internalized expectations and rules that I built. We are allowed to grieve. But I am grieving my own expectations -- I am not grieving them.

I worry about my kids carrying the same anxieties I had in childhood. I worry about them being bullied, pushed away, misread by people who should have known better. I worry about them spending years feeling like they're doing life wrong.. too much, too loud, too sensitive, too weird.. I know what it's like to move through the world without that. To mask so hard and for so long that you lose track of who you actually are underneath it.

The world is not set up for neurodivergent people. We went to an "autism-friendly" dental practice and the Dentist looked at them both and said "well, they don't really look or act Autistic." That is the lens that professionals who should know better still see through.

I want them to grow up knowing themselves. Not performing normalcy for everyone else's comfort. Not apologizing for how their brains work. Not making themselves small. That's what I want to change for them. Not who they are but how the world receives them.

Ultimately, for me, this month is a point of opening conversations up. This is a time where we can begin to work to normalize the "otherness" that continues to separate us from society. This is a time to look at what resources exist, and be honest about which ones still need to be built. To shine a light on the parts of the world that still don't make space for us. Schools, workplaces, medical offices, social spaces. To hold both the limits and the strengths.

It is something that can be reclaimed for us instead of about us. 

This April, as a continued push against disinformation, we have teamed up with Tres Leches Cafe to amplify Autistic voices. To offer free fidgets alongside information. To raise money to support neurodivergent folks accessing care through Paperflower Foundation. This is creating space within the community to have actual conversations that go beyond a ribbon on your Facebook photo.

Sure, it's an imperfect month. But I'll take the bumper stickers, the campaigns and the corporate awareness posts if it means one more conversation gets started somewhere. One more kid gets identified before they've spent a decade thinking something is fundamentally broken about them. One more late-diagnosed adult reads something and thinks "oh. that's me. that's always been me" and they can heal a lifetime of the pains from growing up undiagnosed.

This month isn't perfect. We don't have to leave it the way we found it.

This can be reclaimed.