World Autism Day: UOW graduate Zoe Simmons on the power of advocacy

At the age of 27, the University of Wollongong (UOW) alumni, award-winning journalist, speaker and disability advocate received a diagnosis that changed her outlook and helped her better understand her experiences: she was autistic.  

“It was really affirming because it made a lot of sense,” Zoe reflects. 

“I felt like it would have really helped to know I was autistic when I was younger. It would have explained why I experienced certain things in a certain way, or why other things were so difficult for me. But it was also really sad because I'd struggled for so long not knowing—and because I know so many other people also struggle, whether they know they’re autistic or not.” 

It took Zoe a long time to realise she was autistic—largely because autism isn’t something that’s accurately represented in our society, especially for those assigned female at birth. 

“I really diminished my experiences and how much they’d impacted me. Like with disability, I worried I “wasn’t autistic enough”, or that I was taking up space that wasn’t mine—despite it impacting me significantly. But that was normal to me.” 

“It wasn’t until I started hearing stories from other autistic people, like author and advocate Kory Sherland, who didn't realise she was autistic until her 30s. I ended up reaching out to her, and we had a conversation about autistic experiences, and I thought, ‘wow, I really resonate with a lot of your story.’” 

Unfortunately, Zoe’s experience of a late diagnosis is not unique. Women and girls are consistently diagnosed late, if at all, with historic research and diagnostic tools focused on boys. The current male to female ratio of autism prevalence is 4:1 according to Autism Awareness Australia, but it is estimated this margin could be smaller due to women and girls falling through the cracks.  

“Girls and women tend to be much better at masking, which is something I was exceptionally good at without knowing I was even doing it,” Zoe says. 

Masking refers to an autistic person’s tendency to imitate neurotypical social cues such as forcing eye contact or scripting responses to conversations. It’s often done for safety, Zoe explains, but isn’t something everyone can do, and can be extremely harmful. 

“Learning about the differences between neurotypical and neurodivergent communication was a big learning curve for me, especially for things that just don’t make sense to me—like the idea that asking someone a question is rude and ‘questioning their authority’, or this constant demand to ‘read between the lines’ instead of just using clear communication.” 

“It makes me incredibly sad that so many people are forced to mask their differences. We deserve to be accepted and accommodated: and it’s also important to note that not everyone can mask, and nor should we be expected to.” 

Marginalised communities such as people of colour, gender and sexuality diverse people, and people from low socioeconomic backgrounds are also often underdiagnosed.  

“It’s also important to note that diagnosis is expensive. So many people don’t have one—but you often can’t access support services, like the NDIS or DSP without one, so people who can’t afford a diagnosis or access suitable services may not get the support they need,” Zoe says.

The power of visibility

“We’re not all Sheldon Coopers or little boys with train obsessions,” Zoe laughs. 

At the same time Zoe was going through her diagnosis, autism was seeing a new wave of representation in mainstream media. Namely, actress and autism advocate Chloe Hayden who starred as autistic high school student Quinnie in Netflix’s Heartbreak High, shining a light on the often-overlooked experience of teenage autistic girls. 

“I was actually watching Heartbreak High when I was getting my diagnosis, and reading Chloe Hayden’s book and that really helped me for my own diagnosis,” says Zoe.  

As a journalist and advocate herself, Zoe is all too familiar with making sure marginalised voices are heard. As well as being autistic, Zoe lives with multiple mental and physical disabilities and uses a wheelchair. She uses her lived experience to shine a light on chronic pain and invisible disability as a regular expert speaker in media and advisor to a range of organisations including the Royal Children’s Hospital, Women With Disabilities Australia, Endometriosis Australia, the Youth Disability Advocacy Service and the ABC’s Youth Advisory Committee.  

^{Zoe has been awarded for journalism and advocacy over the years. Picture: supplied}

“Disability already has a lot of stigma—but there is even more stigma for certain types of disabilities, or certain marginalised groups. For example, it’s harder for people assigned female at birth to be believed about their chronic pain, illness or disabilities, even though we experience these conditions at a higher rate. And it becomes even more challenging when you add in more intersectionality, like being LGBTQIA+, being a person of colour, or coming from a low-socioeconomic background.” 

“When it comes to disability and autism, we really need to make sure there's diverse representation and it's not just all the most privileged and palatable in our community,” she says.

The next stage of representation

While Zoe is excited about the growing acceptance and understanding of autism and disability, she says there is much more to be done to make meaningful change.  

Her lived experience and passion for progression led to be an active voice in creating transformation, most recently as an ambassador for the Australian Human Rights Commission’s Includeability Project.  

“Small changes can make a huge difference, like flexible workplace policies, allowing part-time work, work-from-home, considering sensory environments, ensuring clear communication that works for all parties involved, reducing disability stigma in the community, and promoting neurodiversity,” Zoe says.  

Zoe was also a member of the Social Inclusion Working Group, informing the federal government’s National Autism Strategy. She says the strategy is a step in the right direction, but we have a lot of practical work to do—in the workplace, healthcare, education, and in the wider community. 

“Many autistic people were involved in creating the strategy, and I’m really proud of being involved. But we need to make sure this strategy isn’t just words on paper. While praising the strategy, people in power are simultaneously denying autistic and disabled people opportunities in their workplaces, and hundreds of neurodivergent kids are being kicked off the NDIS, without foundational supports ready for them,” she says. 

While research into this area is new, recent studies show that autistic people are more likely to face discrimination in the workplace, healthcare and education settings.  

“We don't talk enough about how autistic people are more likely to experience abuse and self-harm and mental health challenges.  Autistic people are six times more likely to be unemployed, not because of any genuine reason, but just because workplaces aren't inclusive and flexible,” says Zoe. 

“For example, despite the fact that I am a degree-qualified, award-winning journalist that has been published hundreds of times around the globe, I still cannot get a work-from-home, part-time, flexible job, including in organisations that claim to care about diversity and inclusion.” 
 
“I would love autism and disability just to be accepted as a natural part of the human experience. Because I’m proud to be autistic and I’m proud to be disabled. We have existed forever, and we're not going anywhere.”