I avoid talking to most people about autism. It’s not because I don’t want to talk about it. As my very patient husband knows, few things make me happy-flap more than extensively discussing a new thing I’ve learnt about my condition.
This is partly because I’ve had autism for 29 years, but only known about it for one. It’s like finding out there’s extra footage of your all-time-favourite TV show... I have a lot to catch up on and re-interpret.
It’s also because I want you to understand me better, for the benefit of us both. I’ll get to relax and act like myself, and you’ll get to enjoy my company (seriously, I’m a ball to hang out with) without being perplexed by my behaviour.
So then, why do I avoid talking about autism? It’s because when I reveal my diagnosis or explain how the condition affects me, most people get a strange look on their face and go quiet.
I’m not 100% sure why this is, but I’ve come up with two theories. Here’s what they are, along with some advice that will hopefully get us talking again.
1. You don’t believe I’m autistic or that I’m struggling
After all, I seem ‘normal’, right? How can I be claiming difficulties with social interaction and sensory processing, when here I am, walking and talking like anyone else! And sure, maybe I’m a little eccentric sometimes, but is that really a problem?
I get it. Really, I do. But the fact is I’ve spent over 20 years forcing myself to act like I’m not autistic, because I knew I’ll be mocked and excluded otherwise. I’ve been to hell and back to get to the point when I can function like this, and it still takes a lot of energy to do.
Imagine if someone who speaks perfect English told you it’s not their first language. Would you doubt them? No, you’d probably admire them for their learning skills. And if they said they find it harder to communicate in English when they’re tired, I’m sure you’d be understanding.
That analogy is like a super simplified version of what I’m dealing with. So please remember that I’ve made a ton of effort just so I can interact with you on your terms.
Please be patient when I’m finding it harder than usual. And please, be open-minded enough to believe that a disability can be hidden.
2. You don’t know what to say
Don’t know how to respond appropriately? Story of my life! But seriously, I sympathise. Autism is an incredibly complex condition, and public knowledge tends to begin with Rain Man and end with The Curious Incident of the Dog in the Night Time.
So, are commiserations in order? Should you act surprised or unsurprised? Is it rude to ask questions?
The first one’s simple: no. Many of us see autism as an intrinsic part of ourselves, so saying “I’m sorry you have autism” basically means “I’m sorry you are who you are”. Yikes.
As for acting surprised or unsurprised, I reckon a happy medium is best. A big show of disbelief may make it seem like you don’t believe me, but saying “well that explains it” could make me doubt my ability to fit in.
Finally, should you ask questions? That’s a tricky one.
Questions lead to better understanding, which is good for everyone. But the autistic community can be very particular about what you should and shouldn’t say.
It’s almost ironic, considering our propensity for social inappropriateness, yet it’s also entirely understandable - we’ve been misunderstood for most of our lives and we’re tired of it.
Personally, I really want you to ask me questions. And I’ll forgive a well-meaning faux pas for the chance to help you understand me better. To me, that’s far more preferable than leaving you to flounder in polite, ignorant silence.
But everyone’s difference, so for others I’d settle on asking some broad, open-ended questions, like “can I ask how autism affects you?”, “is there anything I can do to support you?”, or “what do you want people to know about your autism?”.
Just remember to be patient, open-minded and respectful when they respond.
I hope this article helps you communicate better with the autistic people in your life. And if you’re autistic and want to have constructive conversations about it, I hope showing this article to non-autistics will help.