When most people think of autism spectrum disorder, also known as ASD or simply autism, a very specific picture comes to mind.
Think little boys with fixations on computers or trains, who grow into socially awkward and oftentimes brilliant men much like Dr Sheldon Cooper from The Big Bang Theory or Raymond “Ray” Babbitt from Rain Man.
But author and speaker Katherine Divine’s gender that held her back from a proper diagnosis for decades and she spent 35 years of her life battling crippling sensory issues that left her anxious and fatigued.
“I have problems with artificial lights and noise, and I had chronic fatigue, but nobody knew why I was tired,” she tells Now To Love over the phone.
From a young age it was clear that Katherine struggled in different ways to her peers, but teachers failed to communicate certain issues to her parents, who wouldn’t have known what to do with the information even if they had it.
“In kindergarten, the teacher told me I would fail because I wasn’t good at colouring in and they didn’t tell my parents, they just to threatened me with failing kindergarten,” Katherine recalls.
She remembers “freaking out as a five-year-old” over that and other experiences which made it clear she was experiencing the world in a different way, but it wasn’t until she was 35 that she found out why.
Finally referred to a specialist with a background in diagnosing women with autism, Katherine was told she had ASD and “should have been told this years ago”.
But with such a limited understanding of how autism presents in young girls and women, thousands of Australians can go decades or even lifetimes without a diagnosis.
It’s a sad reality that left Katherine, now 43, in the dark for most of her life.
“When I think about it, it’s quite upsetting, but it is great when you actually get that [diagnosis] and you start to process it and look back,” she says.
So why wasn’t she diagnosed as a child, the way most autistic boys are? And why are women and girls with ASD still being missed today?
The biggest hurdle is that autism doesn’t present the same way in women as it does in men, meaning may of the tell-tale signs of ASD in boys don’t apply to girls on the spectrum.
Stereotypes perpetuated by TV and movie characters with ASD – who are overwhelmingly male –present an image of autism that doesn’t align with the way the disorder manifests in women; “the traditional IT guys or engineers, the ones that love trains”.
“All these stereotypes have just been weaved into our social understanding and people pick up on that, whether they’re aware of it or not,” Katherine adds.
When girls and women with autism present differently to the stereotypes, it can be easy to ignore the signs or misinterpret them as unrelated to ASD.
Girls and women with ASD are also more likely to be adept at “masking”, a process by which they consciously or subconsciously learn to mimic non-autistic behaviours to appear more like their peers.
WATCH: Waleed Aly opens up about his son’s autism diagnosis. Story continues after video.
In trying to blend into a neurotypical society, women with ASD often end up missing out on a diagnosis that could drastically change their lives for the better.
“I’ve heard of women in their sixties and seventies getting diagnosed,” Katherine reveals, “And they look back on their life and how it could have been so much easier and so much better… [there are] lots of missed opportunities and regrets.”
But she maintains that “a late diagnosis is better than not having diagnosis at all”, as it’s often the first step to accessing support that can help a person thrive.
When not diagnosed or managed, ASD can begin to affect a person’s physical health, with sensory issues and other symptoms going on to cause fatigue, body pains and more.
It can also seriously impact a woman’s personal and professional life, with a shocking 31.6 per cent of autistic people in Australia currently unemployed – and that figure is based only on individuals who already have a diagnosis.
Not only do some workplaces actively discriminate against people with ASD, many companies that claim to be inclusive use recruitment processes that make it difficult for autistic people to get a foot in the door.
“They’re requiring them to do eye contact and be practicing body language. All that stuff is really hard can be hard for autistic people,” Katherine says, specifically referencing a NDIA job ad.
“Autistic people in the job can thrive, but sometimes not in the recruitment process, they don’t get the opportunity to show what they’ve got.”
She urges employers to work harder to understand autism and become more inclusive from the moment the recruitment process starts, and encourages women with autism to seek support when and where they need it.
Almost 10 years on from her diagnosis, Katherine uses Mable to employ support workers and to provide her support as a peer mentor to other Australians living with ASD on the disability platform.
“They’ve [support workers] been instrumental in helping me with business and social events, and also have a cleaner and a garden from them. [It’s] all of the support I need to thrive,” she explains.
“They’re definitely something that the autism community accesses and needs on an ongoing basis … because autism doesn’t end at 18.”
WATCH: Why autistic girls so often miss out on getting diagnosed. Story continues after video.
For so many women, autism, or at least their journey with it, doesn’t begin until they’re in their 20s, 30s, 40s or beyond, when they finally get a diagnosis. It’s something Katherine wants to change.
While some women go undiagnosed due to accessibility and affordability barriers, many more simply don’t know what signs to look for in themselves or their daughters when it comes to ASD.
Research into the way autism presents in girls and women is ongoing, but key signs can include exhaustion after social activities, avoiding or not participating in social settings and struggling with sensory issues.
“When I got home from school, I used to just sleep basically or want to be alone and need some downtime,” Katherine recalls of her childhood.
As for sensory issues, which can cause meltdowns and other behavioural reactions, she says it’s vital that parents don’t assume their daughter is “throwing a tantrum” or “being difficult”.
“They may actually be struggling and they’re not being precious and that sort of thing. There’s a big difference between the two,” she explains.
Though girls tend not to hyperfixate on trains or computers the way some boys on the spectrum do, they may exhibit other signs like lining up their toys or being fixated on certain routines, toys or concepts of play.
April marks Autism Awareness Month and Katherine is hopeful that it will be another step forward for the autism community in Australia, especially the growing number of women in the community.
“The more that we can be open and honest about who we are, it’s just going to invite other people to also be open and help so many other people be their true selves,” she says.
“Each autistic person is different. The key is to go from awareness to acceptance. To accept each person as they are, and to allow them to fully be themselves without having to cover up their true nature.”
She also urges any women or girls who think they may be on the autism spectrum to seek out a specialist who has worked with women and girls with ASD for a diagnosis.
You can follow Katherine’s journey and reach out to her on Instagram at @autietalk.
For more information and to find out how you can support Autism Awareness Month, go to the Autism Awareness Australia website.
Mable is a two-sided community where people with disability can discover and connect with support workers.