“I am different, not less” – Temple Grandin
For Pia Bradshaw, society and its rules has always proved a mysterious place. As a child she struggled to make friends. Frustrated by conformity and convention, she was labelled a problem child and relentlessly bullied.
“I remember people always questioning why I wasn’t like all the other little girls.”
She certainly followed her own beat; at lunchtime, she would run 12km for the school cross-country club while singing Aladdin songs; her own company made far more sense than the confusing social rules of the world around her.
“Honestly, I thought I was pretty normal and that it was everyone else that was weird, illogical or irrational.”
Julianne Higgins knows this feeling of being profoundly out of step with the world. From the age of three, she felt different, she says. Raised in suburban Melbourne, she always felt like a misfit - unable, like Bradshaw, to decipher the social rules and conventions. She was made to feel stupid, blank. Like Bradshaw, she turned inwards to her own passions: nature, history, psychology, painting, philosophy, dance; physical expression provided freedom that words couldn’t, as she captures in a 1996 poem: “feel that gap between/Footfall and the ground/and remain quivering/In the dance.”
The world continued to prove profoundly difficult to navigate as an adult. She would experience bullying, isolation and abuse, including domestic violence as a young married woman.
Despite their challenges, both Higgins and Bradshaw would go on to lead rich, fruitful lives. Bradshaw has forged a stellar academic career and is currently completing a PhD. Higgins, now 71, has taught for over 25 years, including in Singapore, and has notched up several lifetimes of travel.
For both, an answer to why they saw the world the way they did came relatively late in life.
On the cusp of 31, Bradshaw was diagnosed with autism spectrum disorder, or ASD – defined by Autism Awareness Australia as “a developmental condition that affects how people communicate and interact with others [and] affects how they make sense of the world.” Difficulties with communication, social interaction and restricted/repetitive interests and behaviours are common.
In 2009, age 63, Higgins received a similar diagnosis.
According to the Australian Institute of Health and Welfare, in 2015, an estimated 164,000 people had autism, representing about 1 in 150 Australians.
ASD typically lasts throughout a person’s lifetime, but the focus tends to be on children and young people. There is a perception that people tend to 'grow out' of autism in adulthood, but this is a myth. Autistic children become autistic adults. And Bradshaw and Higgins are part of a growing group of people receiving a diagnosis of ASD in adulthood, with others including Australian comedian Hannah Gadsby.
But those seeking answers face many barriers, including a paucity of research and data about the prevalence of autism in adults.
The Autism Cooperative Research Centre for Living with Autism (Autism CRC), based at the University of Queensland, says that while “autism is among the most complex, prevalent and heritable of all neurodevelopmental conditions,” under-diagnosis in the adult population is an issue.
A spokesperson says “the most recent ABS figures, from a 2015 survey, indicate that the rates of young people with an autism diagnosis are higher than is the case for adults. Several factors have likely influenced this, including increasing public and clinician awareness of autism in recent years as well as changes to the diagnostic criteria over time.
“It is likely that the number of adult Australians with an autism diagnosis is significantly less than the number who would meet the diagnostic criteria for autism.”
“The most hurtful of the negative descriptors is the myth that we lack empathy as this questions our humanity.”
The AIHW study says 83 per cent of Australians with autism were aged under 25. Data for older groups is sketchy.
This is compounded for people like Bradshaw and Higgins by the gender factor - girls and women are often less likely to be diagnosed.
According to the AIHW, males were four times as likely as females to be autistic.
But this doesn’t mean that that the problem is less severe. In a sense, autistic girls are hiding in plain sight, according to a report in the Scientific American. A growing body of research points to a male-centric bias in current diagnostic methods. Behavioural and preliminary neuroimaging findings also suggest autism manifests differently in girls.
Bradshaw is well aware of the complexities. “Trying to get a better sense of how my ASD presents in females has been confronting due to the perpetual stereotyping of the ‘autistic female’ as quiet and shy as I don’t identify with these traits.”
For both, getting a diagnosis has proved a relief – though there have been some hard truths learnt about how society perceives those who are different. For Higgins, now 71, it proved liberating. “It gave me answers and also a context and perspective through which to understand myself and my life.”
But it was also uncomfortably eye-opening in some respects – including realising that many regard people like her as difficult, rude and aggressive, among other things. “The most hurtful of the negative descriptors is the myth that we lack empathy as this questions our humanity.”
It has led her to feel more inclined to shelter herself from society. But she is still glad she sought – and found - an answer.
For Bradshaw, a diagnosis has allowed her to “move down the road of self-acceptance, confidence and love.”
“I think it’s important to recognise that our value lies not within the expectation that we must possess some exceptional savant or genius like ability, but rather that we are able experience and see the world through a different lens, and that in itself is a beautiful gift.”
“However, although I feel like I finally have permission to be my authentic self, I constantly find myself at odds with society’s lack of education, understanding and acceptance towards ASD that interrupts this process.”
Higgins has a couple of key messages to spread. Firstly, autistic children grow into autistic adults, who then grow into elderly autistic people who are often perilously vulnerable due to lack of social support. More outreach programs and resources need to be allocated to this highly vulnerable and often invisible group.
Higgins also wants to address the social stigma around autism: she points to media reporting around recent prominent cases such as the murder of comedian Eurydice Dixon in Victoria which contain, she says, dangerously inaccurate and misguided stereotypes about autism. According to several studies, violence is rare in autism.
Finally, she wants to stress that there is so much richness and wealth in the autistic mind, if only society could put aside its prejudices and misconceptions. She cites her own ability to remember details – including helping Greek police by drawing a perfect portrait of a suspect in a murder case.
Bradshaw agrees; it is important for autism to not be seen as just a cluster of deficits.
While cautioning against sensationalised ‘savant’ type stereotypes about people with autism - the term “spectrum” is used to emphasise that autism presents differently in every single person – some display certain talents and abilities. Many of the technological advancements that we enjoy today were created by autistic minds, she points out.
Her own autism has given her, among other things, a flair for understanding “intricate concepts and systems, a good eye for detail and identifying errors; and an almost innate understanding of foreign languages.”
There is much to be done – adults diagnosed with ASD will continue to struggle with high rates of mental health issues exacerbated by stigma, prejudice and discrimination.
Bradshaw hopes her PhD - funded by the Autism CRC – will help in better educating GPs and healthcare professionals about ASD so that autistic adults can receive better quality healthcare.
Ultimately, she says, “I think it’s important to recognise that our value lies not within the expectation that we must possess some exceptional savant- or genius-like ability, but rather that we are able experience and see the world through a different lens, and that in itself is a beautiful gift.”