Why is it hard for people with autism to communicate?
So imagine you are in Japan… people speak differently in Japan and you can’t understand what they’re saying. People in Japan do things differently to you – you’re not sure why they’re doing it, but you can tell it’s obviously important. And the culture is so different that you are like, ‘what the heck?!’
For a lot of people with autism that’s what communication is like – it just seems all foreign and unfamiliar. People expect you to automatically pick stuff up, but when you have autism you just can’t.
Does this mean you don’t get irony or sarcasm?
I can understand irony and sarcasm, and I actually do use it myself. But do I always use it appropriately? No!
Is it hard for you to make eye-contact? Why?
For me it depends on the situation – I have actually had enough practice that I can now make eye contact quite easily. But it took a long time – it was probably not until I was in my early 20s that I felt comfortable.
But even these days…when I’m processing something or when I’m thinking really hard and trying to learn something, I don’t look people in the eye. Also, the more panicked and anxious I am – the more important something is to me – the harder it is to make eye contact.
It’s because when I’m using all my brain to understand what someone’s telling me, I don’t have the brain power left-over to look someone in the eye.
Can you read facial expressions?
Reading facial expressions is something I’ve learnt to do better, but can I do it as well as what is considered ‘the norm’? No.
My brain just literally doesn’t pick up all the nonverbal cues. I don’t see them. It’s like running into an invisible lamp pole – my brain doesn’t process that something’s there, but it still hurts when you run into it! And then I’m like, where the heck did this thing come from?
So do you ever offend anyone?
I’ve definitely learnt how to do social talk, like the surface talk, I can do that.
But I’m very strong willed, and I’ve always said I’m like a steamroller made of flowers – I look pretty, I smell great, but people can still get squished!
These days I can generally go to a social event, chat, and make no social tsunamis anymore. That’s where I have totally misread something and insulted someone accidentally.
What about relationships? Are they hard for you?
I am choosey about my friends because making friends and having friends is hard – it takes an awful lot of brain energy for me and it’s easy for me to get burnt out.
Same thing for romantic relationships – I haven’t had one because I am really choosey. I want to make the right choice because it’s going to take a lot of effort. I want to make sure this guy, whoever he is, is going to be worth all the effort it’s going to take.
I’d love to be married, I’d love to have kids. But I’m happy to wait for that right guy to come into my life. I’m not good with the communication or emotional side of stuff, so I’m going to need a guy who can help me with that. But they’re hard to find!
Do you get sensory overload?
Yes I definitely do! Smoke always gets me, and so do strong fumes – I call myself the canary in the coalmine. If there is smoke around, I’m going to know before anybody else.
I’ve also got to be careful about what products I use around the house – sometimes I’ve given myself overload by putting on underarm deodorant.
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What does sensory overload feel like?
Imagine being in a room that is filled with people. And all these people are pressed up against you so you can’t move – you’re feeling their arms and their legs all over you.
And then, imagine it’s also really hot so you’re sweating. You want to get out and you’re starting to shake. All of a sudden super loud music starts playing and the lights start flashing all at the same time. Wouldn’t that make you panic?
When it happens to me, my autistic wall comes up. It takes all my concentration to breathe. I can see and understand everything going on around me, I cannot communicate that though. I have learnt to wait it out until I am no longer a prisoner in my own body and my autistic wall comes down.
Also, if I am standing still with a blank look on my face, please don’t touch me. I can’t handle it and it will take longer for the wall to come down!
Do you need to stick to a routine?
I do personally like to follow a routine. I have supports on a Tuesday and a Thursday and I have those supports at the same time. Having appointments at the same time each week is how I learn. It’s how I know how to predict life. It’s how I can handle life.
If that changes, I am like AAAGGGHHH…. It throws me, it makes me uncomfortable, and it has made me panic in the past.
If my routine does change, I need to prepare – I am quite famous for not turning up to stuff if it’s a change in routine. I have to keep reminding myself for the whole week beforehand. If I have to get up at 6 am one day this week, I need to keep reminding myself that it Is 6 am on Thursday, to both keep the anxiety at bay, and make sure that I don’t just sleep in and not go!
The young child equivalent of this would be asking the same question over and over and over and OVER again! Not because the child does not know the answer but because they need the same one to battle their anxiety, and feel safe and secure.
What annoying questions do people ask you about autism?
‘Were you born with it?’
‘Can you grow out of it?’
‘Can you just get better?’
Yes I was born with it… No I am not going to grow out of it… And yes while I can learn, I am not going to ‘get better’ as it’s not an illness, it’s just my brain works differently.
Do you like having autism?
Autism comes with its challenges, I will admit that. But it’s also something that’s really cool because it means you can do stuff that most other people can’t.
It allows you to see the world both differently but it also allows you to come up with ideas and solutions that nobody else will.
So for me it means I’m a really good teacher because I need to learn in a structured way. So once I’ve learned something, it’s really easy for me to teach it to others.
What’s one thing you want to tell the world about people with autism?
We can do a lot more than you think we can. Don’t put limits on us. We can develop more ways to “get” or understand the world, more ways to make a difference in the world and do more to make it a better place than people think we can.
I love my life, and I really love showing the parents who are going through the trenches that there is hope on the other end. And showing kids with autism that they can do more than they think they can – more than the panic and anxiety will tell them they can.
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