Thought autism was a male condition? New research shuts down the stereotype.
HELEN HOANG WAS 33 when her daughter’s preschool teacher suggested the little girl might be on the autism spectrum. “When she started talking about the symptoms, I thought, ‘Oh wow, that’s me.’” Hoang, the daughter of workaholic parents, says her family was “too tired to notice or care when I listened to the first 17 seconds of Madonna’s ‘Papa Don’t Preach’ on repeat for hours, or avoided the neighbourhood children because I didn’t know how to play with them.” But that conversation with her daughter’s teacher was something of an “aha” moment – it sent Hoang on a “journey of exploration” that resulted in her own diagnosis on the autism spectrum at the age of 34.
“It was such a relief,” she says. “When I was told I was autistic, I felt highly validated. It was a relief to know I wasn’t alone.” While she was unsure how her family would take the news – “I worried they’d be disappointed or ashamed, or worse, that they’d start to treat me differently” – her fears turned out to be unfounded.
Hoang has just released her debut novel, The Kiss Quotient, a love story between an autistic woman, Stella, and her male sex worker (yes, it’s reverse Pretty Woman, and yes, it’s very good). “In many ways, Stella’s journey to self-acceptance paralleled mine,” she says. “Prior to my diagnosis, I put a great deal of effort into changing myself to fit in, and getting to the point where I could be open about my differences and embrace them was a struggle.”
Hoang is part of a growing group of women diagnosed later in life – that is, after childhood and adolescence – with autism spectrum disorder (ASD). Autism has traditionally been thought of as a boy’s condition but it’s now estimated that 30 per cent of diagnoses are for girls. A historic wholesale dismissal of female autism, lack of research, and the fact that diagnostic and screening tests are biased towards boys, means girls have been chronically underdiagnosed with ASD. It’s only now that women like Hoang are discovering that they’ve lived on the autism spectrum their entire lives. Comedian Hannah Gadsby, for instance, received her autism diagnosis in 2016, when she was 38. Previously told she had attention defecit hyperactivity disorder, Gadsby was relieved to discover she was autistic. “I’d always existed as if something was fundamentally wrong with me,” she told The
Weekend Australian. “Autism gave me a sense of calm and a framework to understand that I’m not broken, the world is.” And while Hoang and Gadsby’s diagnosis stories end quite neatly – with an internationally successful debut novel and worldwide fame respectively – not every woman with ASD is so lucky.
It’s thought that autism affects around one in 150 Australians and, for the most part, our understanding of autism is through a very male lens. ASD is a developmental condition that affects the way people relate to their environment. When we think of autism, we tend to picture the Rain Man model, even 30 years after the film’s release: a brilliant (male) savant with obsessive quirks and fixations, who has trouble communicating. And while some people with autism might present this way, the reality is that the disorder exists on a spectrum and there’s a wide variety of ways in which autism can manifest.
Historically, researchers have focused on the ways autism manifests in one segment of the population: males, which is why
we have such a limited understanding of what the disorder actually is. For a long time, autism was literally described as “an extreme male brain”. In 1944, pioneering researcher Hans Asperger went so far as to say women or girls weren’t affected by autism at all. It’s only now scientists are beginning to understand its breadth. It used to be thought the ratio of men with autism to women with autism was 15:1. New research says it’s actually closer to 3:1.
Danuta Bulhak-paterson is a psychologist who specialises in working with girls with ASD, and the author of I Am An Aspie Girl:
A Book For Young Girls With Autism Spectrum Conditions. In her Melbourne practice, she sees many women who are diagnosed as adults after a lifetime of struggling with symptoms. “For these women, being diagnosed is a relief. But it’s not like it’s all smooth sailing after that; they’re dealing with decades of feeling misunderstood and different. You can’t help but internalise those feelings. Often women I see are very anxious and sometimes even depressed. They haven’t received the support they need and feel very alone.” When symptoms are missed or misdiagnosed it can be “very distressing”, says Charlotte Brownlow, a clinician examining the success of a female-specific screening tool. “It’s really exhausting for these women to have to figure the world out without any support.” (One psychologist I spoke to says her client was told by a GP that she had an eating disorder because she had to go to the same pizza place every Saturday night, even when she moved an hour away from it.)
Stephanie*, 32, was diagnosed last year after more than 10 years wondering if she had autism. When her mother died when Stephanie was 13, her father spiralled into deep depression and she and her sister were sent to foster homes. Without a constant primary carer, Stephanie’s autism went undiagnosed for more than three decades, despite her being unable to finish uni (“I couldn’t deal with the lights in the lecture hall; they would flicker constantly and it triggered my anxiety”), unable to be promoted in her job at a supermarket deli counter (“Change is really scary for me; I want to be promoted but I know I won’t be able to handle it”) or seek a healthy relationship (Stephanie was with an abusive partner until he died when she was 25). Like many people with autism, Stephanie finds it difficult to cope with external sensory triggers, like light, noise and crowded places. She runs up to 80 kilometres a week to deal with her anxiety, and wears headphones and dark glasses in public to avoid what she calls a “meltdown”. Finally, last year she got to a point where she “couldn’t live life normally anymore”, so she sought out Aspect, an autism awareness and support body in Sydney, and received her diagnosis. “It was a huge relief,” she says. “But I wish it had come earlier. Maybe if my mum hadn’t died she would have picked up on it, and I’d have had some support. I just feel so lonely. I’d like to have a relationship and maybe kids, but I can’t even speak to people most days. I don’t know if any of that is going to happen for me.”
Support and early intervention, says Professor Robyn Young of Flinders University, are key to those living with autism (she should know: Young developed a screening tool for autism that can be used in infants as young as 12 months). “What we want to do with people with autism is help them live normal lives. Early intervention means they can learn to navigate their worlds.” This could range from speech therapy, Young says, to help them understand sarcasm, idioms, metaphors and humour, to occupational therapy for regulating sensory behaviours (like repetitive movements) or counselling to modify inappropriate behaviour. “Without those interventions, girls with autism are left to figure all of this out for themselves, and that is incredibly difficult,” says Young. “It’s hard to do it even with support. It’s close to impossible to do it on your own.”
One way girls with autism cope is by masking their symptoms, and mimicking neurotypical girls to disguise their own behaviour. “I distinctly recall doing this,” says Hoang. “I hated to call attention to myself, so when I realised my finger tapping was annoying, I started tapping my teeth together because nobody could see or hear it.” She also recalls hearing that, around the onset of puberty, it was normal for girls to spend more time in the bathroom. “That made perfect sense to me,” she says. “I figured they were doing the same thing as me: practising their facial expressions in the bathroom mirror to make sure they were doing it right.” Brownlow, the clinician working on a screening tool specifically for women and girls, says she’s not sure why girls tend to hide their symptoms better than boys. “I think it has something to do with the way we teach all girls to modify their behaviour in all sorts of situations.”
Things are changing, slowly. This year’s World Autism Awareness Day focused on females, while new research into screening shows key differences between how genders present with ASD (women typically have more sensory differences and motor problems). Brownlow says there’s now greater emphasis on its benefits. “Autistic people are often very detail-focused, with great memory and observation skills. By identifying those strengths early and giving autistic people support to navigate their environments, we can enable them to shine.”
For many women, finding out they’re on the spectrum offers them a form of identification they didn’t know they needed. “Autism is such a strong, powerful part of an identity,” says Brownlow. “Understanding that part of yourself, and then being able to give yourself a break for things you can’t control, is so important. I hear from so many women who tell me that having a frame of reference for the reasons they are different really helps them. But it would have helped a lot more if they’d got it sooner.”
“l’d like to have a RELATIONSHIP and maybe kids, but I can’t even SPEAK TO PEOPLE most days”