When you think of autism, who or what springs to mind?

Given the way it’s typically presented in the media and society, for many of us, it’s the picture of a young man or boy who’s meticulous, socially awkward and good at STEM subjects (think Sheldon from the Big Bang Theory or perhaps Dustin Hoffman as The Rain Man).

But what about autistic women and girls? If they didn’t even cross your mind, you’re not alone. Not only is cultural representation of them almost non-existent, they’re also far less likely to receive an early diagnosis, if one at all. 

The reasons for this are complex. Since the concept of autism was coined over a hundred years ago, the general understanding has been that it’s more common in boys than girls, with the current ratio of diagnosed autistic males to females standing at 4:1. Why? Because women tend to be better than men at spotting and masking autistic traits from a young age and the ones they do present are generally different to those considered the norm, which were created from studies done on men and boys.

It’s only due to more recent research that this understanding has begun to change. For Melbourne based writer, researcher and screenwriting lecturer Clem Bastow, the diagnosis didn’t come until she was 36. Now a passionate autism advocate and author of the memoir Late Bloomer: How an autism diagnosis changed my life, she sat down with AllBright to discuss challenging society’s misconceptions and the ways in which being diagnosed have newly empowered her.

You were assessed for Autism Spectrum Disorder (ASD) shortly before your 36th birthday. What led to this assessment?

I was working on a screenplay and my script editor, who I’d worked with for many years, couldn't quite work out what was going on with the lead character. She gave me this book- The Emotional Wound Thesaurus – [which details] the things that can happen to a person and how they might manifest [in later life]. It's designed for writers to be able to flesh out their characters. I started reading a chapter about emotional problems and how autism might manifest in a character. It felt like a semi autobiographical script, so I suddenly thought, "Oh my God. Hang on… am I autistic?" So I jumped online and I started Googling and it was the first time that I had realized that it can present really differently in women and girls. I went to be assessed and after a couple of months, I got the diagnosis – “congratulations – it’s autism.”

How did that feel?

It was a real relief, because there was a part of me during the interim that thought "if it isn't this, I feel like I've kind of eliminated every other possibility. I must just be a lost cause." So to have that recognition and understanding and a new framework through which I could view everything that had happened to me -  good and bad – was really reassuring.

Do you ever wish that you had known earlier?

Absolutely. Having spoken to friends of mine who received their diagnosis earlier, [I can see that] they were able to have a much more positive sense of their identity from an earlier age. When people say you're weird, wacky or crazy, or you're mean or angry (I've had them all), if you don't know what's going on, eventually you start to think, "Hey, maybe they're right. I think I am just a jerk or a weirdo." Eventually you start to believe them. So I think that it would've been really helpful.

I think a lot of parents worry that if they are pursuing a diagnosis, their child will be labelled, which I totally get, but when you don't have that understanding, you can't foster a positive sense of identity.

Can you talk to us about the importance of identity-first language?

It’s about labelling someone as an “autistic person” rather than “person with autism” and the reason that I and other autism advocates are moving towards this is because it focuses on the idea that autism is an important part of a person’s identity. It plays a part in their strengths, challenges and support needs and it can’t be separated from the person. This definitely isn’t a universal thing, though. There are plenty of people in the community who prefer to say they have autism or they live with autism, but in the past there was more emphasis on the idea that autism was a disorder but [advocates] now think that a person has worth because of that autistic identity, not in spite of it - it’s something we can be proud of and support rather than something we have to suffer from or live with. 

In your memoir, you say functioning labels such as 'high functioning' and 'low functioning' are “unhelpful at best, slurs at worst.” Can you explain this?

Traditionally this was something we were really comfortable using in an autistic context, but nowadays we like to focus more on what the community can do for the person [instead of] what the person offers to the community. 'Functioning' suggests the question, 'what can you do for us?' whereas calling them 'support needs' creates more of a sense of community engagement and encompasses more of the needs – complex, high, low or communication – that people might have. It's about asking how we can support these people rather than just assessing their worth to society.

What are some of the biggest lessons you’ve learned about autism in the workplace?

Firstly, that most of us aren't genius levels savants who can do card counting in Vegas, or conquer the stock market. Many of us still have really incredible skills but those skills are not necessarily things that are monetisable.

[Secondly] that a lot of modern work environments are very hostile to autistic people. Offices these days are often open plan, so they’re very noisy and necessitate a level of social interaction that can be very draining. I think that there is a growing sense of accessibility and inclusion in offices, but there are still some buildings that have only just been able to get wheelchairs in the door, so the idea that other types of accessibility need to be considered might be quite a slow process.

What do you hope the lasting message of your memoir will be?

I hope it opens people's eyes to the possibility that autistic people have more to give. [The reason I chose the cover]  was because so many books about autism just have a sad picture of a person looking at a window or a puzzle piece, or something like that and I just wanted a cover that would make me happy. It’s something that would’ve made three-year-old me very excited.

Hear our full interview with Clem on The Grace Tales podcast here, and to find out more about Clem’s memoir, Late Bloomer, visit her website here.