Today is Autism Awareness Day, and I’ve spent the last fortnight wondering what that even means. What is it that we are all being ‘made aware’ of?
Today you will see fundraisers for Autism, researchers sharing studies, parents writing heartfelt stories about their difficult but inspiring children, and hundreds of organisations posting flashy displays of ‘support’.
Though well-meaning, with all the noise made by people who ‘support Autism awareness’, actually-autistic voices are being drowned out.
So today, instead of reading about what others have to say about those of us on the spectrum… Why don’t you hear what we have to say?
And, if you feel like sharing something to show support for Autistic people like myself… Please consider sharing this. Or something else created by an Autistic person.
Today is a day to listen.
Here are some things I want you to know:
1. I don’t ‘have’ Autism. I am Autistic.
First up. I see lots of debate about the proper way to refer to those of us on the spectrum. Most professionals - medical, psychological and social - are taught that ‘person-first language’ is the best way to go; i.e. “Maddy has Autism”. They think that by separating us from our diagnoses they are empowering us to not be defined by our ‘condition’.
But that’s the problem. We can’t be separated from our Autism. I could not tell you which parts of my personality are ‘me’ and which parts are ‘autistic’, because they’re one and the same. We’re born autistic, we don’t ‘catch it’ or ‘develop it’ like an illness.
If you listen to Autistic communities, you’ll know that most of us prefer ‘identity-first language’, which is where we say “I am autistic”. And if you’re not sure? Just ask us.
2. The Autism ‘Spectrum’ isn’t linear.
I’ll be honest. Before I was diagnosed, I too pictured the “Autism Spectrum” as a linear measurement from “not autistic” to “very autistic”.
But I've learned that the “spectrum” is actually more like a circle –picture a colour wheel divided into segments– with each pie-shaped sliver representing a different autistic trait that some have and others don’t.
I, for example, don’t struggle with verbal communication or physical mobility, but I do struggle with processing emotions and sensory input. This is why there’s so much diversity within the Autism community, because we are diverse; we don’t each share the exact same autistic traits.
“But everyone’s on the spectrum in some way, right?”
Saying “we’re all on the spectrum” or “we’re all a little bit autistic” to an autistic person is like saying “don't worry, we all have mobility issues” to someone using crutches. It’s absurd.
Although you might think it’s kind to try and relate yourself to our experiences, what you’re actually doing is cheapening them.
You’re telling us that a huge part of our identity, the source of so much of our joy and so many of our struggles, isn’t really there. And you’re making it harder for us to get help when we need it, because why would we ask for support if everyone has the same struggle we do?
3. ‘High functioning’ and ‘low functioning’ labels aren’t helpful.
“Oh, but you’re high-functioning,” I’ve had lots of people say to me, as though it’s a compliment.
You might have heard of Autistic people being labelled as ‘high’ or ‘low’ functioning. These labels actually do more damage than good. By calling a person ‘low functioning’, you dismiss their gifts and limit what they’re capable of. And by calling a person ‘high functioning’, you’re telling them that all the struggles they have don’t matter because they’re able to hide them and pretend really well.
It furthers the idea that people can be sorted and ranked by their usefulness and ‘palatability’ to society, which isn’t okay.
Please don’t label us by how well we do or don’t ‘function’.
4. We don’t ‘lack empathy’.
One of the most common misconceptions I hear about Autistic people is that we “lack empathy”. I think a more correct way of saying this would be that lots of us don’t always show our empathy in the same way as others.
When I was 18, I fractured my foot playing sport. I felt it crack during a game and knew straight away that something was wrong. The doctor at the hospital prodded my foot and asked me to rate my pain. When I did, they assured me it couldn’t be broken.
I walked on that foot for three weeks before going back to the hospital and complaining that it still didn’t feel right. This time, I pretended to wince when they prodded it. I was sent for scans, where we learned that my foot was, in fact, broken. In two places.
I use this story to explain how just because I didn’t react in a typical way, doesn’t mean it didn’t hurt. Walking on a broken foot did hurt. I just didn’t know how to express that outwardly.
It’s the same with my emotions. Sometimes I’ll feel something so deep and raw; empathy, hurt, joy, shame; that I’ll struggle to know how to express it, and I’ll appear emotionless on the outside. Other times, I’ll cry in the middle of a TV ad because I’ll feel so deeply for the story they’re telling.
So yes. Autistic people feel empathy too. Often, more deeply and complexly than we can understand or express to you.
5. Not everyone has access to a diagnosis.
I probably shouldn’t tell you this, but I will: My formal diagnosis cost me $895. Not including the monthly psychologist appointments leading up to that point, or the prior assessments I did with an Occupational Therapist and an Audiologist just to be taken seriously.
I didn’t realise how privileged I am to have received that formal diagnosis; the piece of paper that tells me I’m not crazy, that tells other medical professionals to take me seriously, and that gives me access to supports I wouldn’t have without it.
I didn’t realise, until I heard dozens of stories of other Autistics who don’t have access to a diagnosis. Maybe they can’t afford it. Maybe they don’t have parents around who can attend the first stage of assessment (a requirement for diagnosis, even as an adult). Maybe the only psychologists practising near them hold outdated beliefs that Autism is a ‘boys-only’ condition.
I’ve come to learn that there are so many reasons why a person might not be formally diagnosed. So if someone tells you they’re Autistic, please don’t question it, or doubt them because they don’t have a signed piece of paper.
Trust that they know themselves, and they’re not making it up.
6. Just because we can hide our Autism from you doesn’t mean that we should.
When I was a teenager, I began to notice that there were lots of situations I didn’t understand. I took people very literally, and I struggled to read tone; so things like sarcasm, jokes and cultural nuance went way over my head. I constantly found myself drawing blanks in conversations where I couldn’t keep up with what was being said and what everyone meant.
And so I studied. Diligently. I read how-to articles about socialising and asked my parents hundreds of questions. I learned how to survive in conversations by nodding and smiling and feigning interest. I pretended to make eye contact by focussing on the tip of someone’s nose. I kept a notebook of conversation scripts by the phone, and I made a list of good questions to ask people.
I started hiding my coping mechanisms. I locked myself in bathroom stalls just to flap my hands and rock back and forth, and I scrunched my toes so tightly in shoes that I’d come home from an outing with blisters. I pretended I didn’t care that the shadows were uneven on the footpath or that an ambulance siren terrified me to the bones.
And the result?
I was unhappy. Exhausted. Ashamed.
Although I’d bought myself a ticket to fly under the radar, I wasn’t myself. My truest self was the one locked away in a cubicle, flapping her hands in a display of excitement that wasn’t appropriate to show the world.
You know what? I don’t have the answer. I can’t tell you things would have been better had I not hidden my autistic traits away.
But I can tell you that now, when I choose to flap my hands in public or skip weirdly or rock in my chair – it takes bravery.
So please: when an Autistic person decides to stop masking and let their autistic traits run freely…
Friends, if you’re reading this, thank you.
If you’re reading this as an autistic person, I want you to know that you’re not alone, and that there is a place for you here.
And if you’re reading this as someone wanting to understand more about the autistic experience, thank you. We need more people like you who are ready to listen and support us.
And finally, if anything I’ve said has struck a cord with you or you have questions, please feel free to ask them! I still have so much to learn, and I’d love to do that together.
Much love, and happy Autism day,