Autism isn’t a trend, a tragedy or an “epidemic”; it’s one expression of human neurodiversity. So why do so many autistic people spend years masking, misread as “too much” or “not enough”, and only discover the truth in adulthood? In this article, we follow real Australian stories, from late diagnosis to unmasking, while exploring what the latest research is revealing and what the neurodiversity movement is asking of all of us: more understanding, more flexibility and far fewer assumptions.

As a young child, Anna, 46, would see kids laughing and chasing each other in the playground. “I’d think to myself, why are they
doing that? I’d really study them; I just didn’t get it,” she says. “I was part of the world, but didn’t really see my place in it, and that hurt.” During her school years, she tried desperately to blend in. “I knew I had to be invisible — don’t be too much of anything, don’t be too good at your work, don’t be too bad or your parents get called in, don’t stand out, don’t raise your hand,” she says. Anna is autistic.

Perfectly imperfect humans

We are all in it together, muddling through as best we can, in this big crazy world we live in. For autistic people, there is another layer of complexity they have to navigate, in a world that is arguably skewed to favour the neurotypical.

No-one really knows what causes autism. It isn’t something you can grow out of. And unlike a popular myth that still perpetuates, it can’t be cured. We do know that those with autism have a brain that is wired differently in some respects to the neurotypical brain. Through PET scans, 2024 cutting edge research by Yale University has shown the brains of autistic adults have fewer synapses (the junctions where nerve cells send signals to and from each other) than those of most neurotypical people.

Autistic people are neurodivergent, which also includes those with dyspraxia, ADHD and other conditions.

The path to diagnosis

Until fairly recently, it was considered that autism mostly applied to white cisgender males. But as Abigaile Balfe, the 20-something autistic author of A Different Kind of Normal, eloquently points out, all bets are now off. “It’s a bit like an overwhelming (yet delicious) breakfast buffet; autism is open to everyone,” she writes.

Some people are diagnosed with autism in early childhood. Professor Robyn Young from Flinders University says that when diagnosing children, it can come with a sense of clarity and understanding. “Parents think, OK, it’s not my parenting, but that also comes with a sense of grief for the family. They fear what life is going to be like for their child,” she explains.

For others with autism, it can take almost half a lifetime before they learn the truth. Anna was diagnosed after her daughter was. At age four, her daughter Alice showed incredible insight, looking her mother in the eye and saying, “Mum, I know I am different, you have to help me.” Anna got it. “People used to say to me, you are a bit left of centre. Others would say, you are a bit too much,” Anna recalls. A psychologist diagnosed Alice right away. But it wasn’t until years later that Anna sought an official diagnosis. “I was facing burnout and feeling broken. I didn’t know
what to do,” she says.

Autistic people can share some common traits

They can struggle with communication, so have social difficulties. Many dislike change, and they have a reliance on rules and routines. There can also be ritual and repetitive behaviours such as rocking, pacing and stimming (which is self-soothing behaviour like tapping or blinking), and sensory sensitivity. Those with autism also have a knack for attention to detail, and a strong drive to detect patterns.

But it’s also important to remember that each and every person who is autistic is unique. According to Dr Steven Shore, author and autistic professor of special education, “If you’ve met one person with autism, you’ve met one person with autism.” They all have their strengths and challenges, hopes, fears and things they love, and things that irk them, just as every neurotypical person does. Some autistic people are outgoing, loud and boisterous. Others are quiet and introspective.

Anna’s two daughters, who both have autism, are ery different. Alice is very social, while Lucy is an introvert who loves animals. “I have said to Lucy, you really need to make an effort to go out or you’ll be sitting at home with your art and 42 dogs,” says Anna. “Now that sounds amazing,” replied Lucy with a cheeky smile.

A rising tide

According to the Australian Bureau of Statistics, there were 290,900 autistic Australians in 2022. This is 1.1 per cent of the population, up from 0.8 per cent in 2018. One of the reasons for this could be that more people are seeking a diagnosis, according to Niki Welz, research, projects and resource creative from Autism SA. “An evolution has occurred. A social movement has seen greater awareness and access to diagnostic services; however, there are still financial barriers for some,” notes Welz.

The increasing numbers have seen popular media touting the term ‘autism epidemic’. It’s inherently unhelpful. Autistic people don’t want to be feared or pitied; they just want to be understood.

Welz says historically, for those that are autistic, the focus was on intervention. “In the past the question was, how can we make a person fit into
society? However, thanks to the neurodiversity movement, the focus is now on how society as a whole needs to be more flexible and inclusive, to be supportive for all types of diversity,” she says.

Some people who may be autistic also choose not to have a formal assessment. Others are like Anna. Welz says they might have been aware of strengths and also challenges throughout their childhood.

“They’ll often see that replicated in their own children, and that can lead to an aha moment,” she explains. It wasn’t until 1994 that it was recognised that autism didn’t just apply to those with significant language impairment or intellectual disability. It could apply to the kid in the playground who sits on the fringe, or the teen who has a quirky sense of humour, or the adult who sees the world through a different lens.

Autistic people can have a different world view, and at times it is wonderfully, refreshingly honest. Teenage friends Taylor and Emily, who are both autistic, were trying on different outfits, getting ready to go to the movies. “Does this dress look OK?” Taylor asked Emily. “Nope, it’s horrible, it makes you look really fat,” said Emily. “Try this one.” “Oh OK, thank you,” shrieked Taylor as she spun around in front of the mirror.

Some might say a neurotypical person would be upset, or angry, at such bluntness, but for these two autistic teens, honesty is part of their innate verbal vernacular. They ‘get’ each other.

Growing up is hard to do

It’s tough to be autistic in a world that for the most part craves perceived ‘normalcy’. But what is normal anyway? We all think differently. Each and every one is unique.

Zoran Bekric, 62, the son of Yugoslavian migrants, is autistic. “Most of my childhood I was an outsider, on the edge of social groups,” he says. “I put it down to growing up as an ethnic kid in an Anglo Saxon culture.”

It wasn’t until his 30s that Bekric’s social isolation hit hard after the death of his father. “I realised I was mourning, and I was all by myself. I didn’t have any real human connections,” he says. “Looking back, it felt like there was a trick to making friends that I never learned.”

Bekric found his tribe with others who played Dungeons and Dragons. “I suspect that many of them, if not autistic, might have been on the fringes of the spectrum, and that’s why we clicked,” he says.

Same same but different

Even with a wider awareness and understanding about autism, there are still stigmas, abundant myths and certain stereotypes that surround autism.

Early diagnosis can be a gamechanger for some. Professor Young says diagnosis for many older people can feel uplifting; it validates what they’ve known all along. “There can be a sense of clarity, but also one of loss and regret. Older patients have said they wished they’d known earlier; they wouldn’t have made the same mistakes, and people would have understood them better,” she says.

A two-way street

Autistic people are often criticised for not understanding the emotions of others. It’s a condemnation that Professor Young says is unfair. “The blame for miscommunication falls solely on their shoulders, but we need to accept communication is a two-way street, so we need to be more mindful of the difficulties a person with autism might experience,” she explains.

For those with autism, overstimulation can be frightening; it can lead to shutdown or meltdown. But despite a perpetuating myth, a large body of research validates that autism in children and adults doesn’t predispose them to violent behaviour or actions. In fact, they’re more likely to be the victim of bullying. Clem Bastow, author of Late Bloomer, was diagnosed on their 36th birthday, in 2018. Bastow listened to Queen’s “Now I’m Here” 23 times while waiting for the results.

“I’d already picked out the image that would articulate, on social media, my feelings if I was diagnosed as autistic: a monster truck slamming over a giant mud pile, its livery daubed with the slogan ‘Autism: It’s not for Wimps’,” says Bastow.

“I was bullied and ostracised through school and beyond; even during my PhD research,” adds Bastow. “There is a lot about autistic people that seems to make us easy targets for bullies and abusers; it’s unfortunately a fairly common experience for autists.”

Living with autism is hard. Research by Dr Damian Santomauro from the University of Queensland shows people with autism are almost three times more likely to die by suicide compared to non-autistic people.

Not all superheroes wear capes

When Judy Sharp took her three-year-old son Tim to a specialist, she was told he was autistic and that he’d never speak or be capable of affection. A few decades later, Tim’s artwork and drawings with his superhero Laser Beak Man have been exhibited around the world. His mother penned a book, A Double Shot of Happiness, about her son’s journey.

Autistic people can be found in many walks of life. Around 10 per cent have advanced levels of specific skills; they have exceptional aptitude in a field they are interested in. Those with autism can also be hyper-focused on specific interests, so they become extremely knowledgeable about certain subjects. Bekric is intelligent, quick-witted and funny. He’s also detail-oriented with a laser-sharp focus and can retain huge amounts of knowledge.

Bekric says being autistic is easier once you understand your strengths and weaknesses. “I’m sensitive to sounds, so big parties and concerts are my definition of hell on earth,” he says. “Once you know why that’s happening, you can decline these things with a legitimate explanation.”

Taking off the mask

Some autistic people hide their traits; they copy what neurotypical people say and do, so they feel more comfortable. When Bastow was diagnosed, it was the confirmation of a long-held suspicion. “It became clear I was no longer able to mask my autism, and felt I was falling apart at the seams,” says Bastow. “Six years into my process of unmasking, I’m more autistic than ever before, and loving every second of it.”

It’s important that those with autism are heard, and that they don’t have to pretend to be someone else. Balfe says: “If someone had told me that it was OK to not be like everybody else, that it wasn’t my job to be normal and fit in, and that my way of seeing the world was just as valid and important as everybody else’s, I think I would have found growing up a lot easier.”

Balfe has some tips for those who are autistic to help them navigate the neurotypical world. “Find your voice, ask for what you need, set your own boundaries, find your tribe, and give yourself a break,” she writes.

Celebrating autism doesn’t dismiss its challenges; it honours the strengths and distinctive insights that each of us have to offer.

The tide is turning, but we still have a long way to go. The trials of autism are many. There’s no denying it is a disability that impacts on the lives
of everyday humans. But autism is part of a wider human neurodiversity that serves to enrich and enhance society.

Post-diagnosis, Anna is grabbing hold of life with both hands and loving it. “Our family life is chaotic, we love each other fiercely, it’s crazy and it’s fun,” she says. “My life has changed, I have a lot of support, and I am embracing that part of my identity now. I’m really leaning into it.”

Carrol Baker is a freelance journalist who writes for lifestyle and health magazines across Australia and New Zealand.

This article is featured in WellBeing Magazine 224