‘I’m Autistic and Many Don’t Know How to Approach the Topic With Me — Here’s My Advice’
I have been my entire life — even though I only officially found out late last year. But I always suspected something was different about me. I’d heard about autism, but it was almost always when referring to boys. It wasn’t until a few years ago that I started hearing stories about autistic women that I began to see myself in their stories — especially when I learned that boys are way more likely to get a diagnosis than girls: our neurodivergence is often missed because we behave differently to them.
But women — and non-binary and gender-diverse people — are often excellent at masking. We need to be to survive not only a world that wasn’t built for autistic and disabled people, but a world that wasn’t really built for women (or LBGTQIA+ people). Like the fact that a lot of studies on autism were never conducted on girls or women, and they certainly haven’t been conducted on gender-diverse people. But when I started hurtling down the rabbit hole of research, I resonated with pretty much every autistic trait. The more I learned, the more I felt seen.
And when I got a diagnosis last year that officially confirmed my neurodivergence, it kind of felt like everything fell into place. Everything made sense. It explained so much, like my sensory issues, my communication issues, my special interests, my strong sense of social justice, and the way I socialised, thought, and behaved.
It gave me so much joy to understand myself in this way — and how I could better take care of myself.
But coming out with any new disability is a bit like coming out as someone in the LGBTIQA+ community: there is a lot of stigma, and a lot of bias, not to mention a lot of ableism.
When I told some people, they didn’t believe me. And it wasn’t until I had a diagnosis that they actually stopped and re-considered their view of what autism is and looks like. Because I don’t “look” autistic. No one does, really. You might be able to tell by the way we communicate or react, but when you’re a master masker, it can be almost impossible for anyone to tell. So please don’t diminish anyone’s neurodivergence, just because they don’t look how you think they should look (or behave). And remember that getting a diagnosis is actually really difficult for a lot of reasons. It can cost thousands. I sure as hell wouldn’t have been able to get one if I hadn’t gotten funding for it.
While I’ve had a lot of support, I’ve also gotten some pretty awful comments from people, particularly when I started expressing autistic pride and joy. I had one person tell me my autism was caused by the devil. I had another tell me it was a mental illness. I’ve had others who see it as something I should be ashamed of.
Despite this, I feel like a lot of people want to be allies. They want to support the autistic and disabled community. They want to learn, and do better, and know how they can best support us. And if you’re one of these people: thank you. It means more than you know.
Like with any disability, a lot of people aren’t sure how to approach the topic of autism with a friend or loved one. They don’t want to say something “offensive” or “not right”. But the thing is: most autistic people spend their lives analysing what the correct thing to say or a way to behave is. So, if you’re not sure, the best advice I can give you is to just say what you mean. I can’t emphasise this enough — because it’s something a lot of neurotypicals don’t do. Speaking directly is not rude. Please don’t make us read between the lines or guess what you’re saying. It’s very confusing: especially when you get mad at us for not knowing what you’re saying, when you haven’t actually told us.
I can’t speak for everyone, but in my experience, having someone just acknowledge my autism — and ask about my access needs is a huge thing. We often spend a lot of time hiding our differences, so bringing them to the surface in a way that is filled with love, understanding and compassion is so powerful. If you’re not sure about something, it’s okay to ask!
It’s also important to remember that something that may seem minor for you — like, say, the scratchy tag on the back and sides of your clothes, the seams in your socks, bright lights, or background noise — may not be minor for us. Every autistic person is different, and all of us have different sensory needs — and they’re often dynamic. Sometimes, I can handle a little bit of background noise and follow a conversation. Sometimes, I can’t hear anything, and I feel my ability to cope plummet.
Even if you don’t understand the way something impacts us, do not diminish us. Do not tell us to push through, because this can often lead to meltdowns and burnout that can take a long time for us to recover from.
Instead, actually, listen to us — and help us. Make the effort to find out what makes our brains feel like nails on a chalkboard — and the ways we can soothe ourselves, like leaving an overwhelming environment, limiting sensory input (like reducing noise, light, sound and scents), soft fabrics, sensory toys, comfort items, and stimming.
Because autism isn’t a bad thing. It’s not something we need to be ashamed about, hide, or be “cured” from. Autism is beautiful. And wouldn’t it be boring if we were all exactly the same?
Let us be our authentic autistic selves. Encourage us to unmask and behave and communicate however feels right for us — even if it’s using non-verbal methods. Encourage us to stim, and rest. Follow #ActuallyAutistic advocates online, and read stories we’ve written. Don’t speak for us. Let us speak.