Females with autism – From diagnosis to research

Pia Bradshaw grew up knowing she was ‘different’, but not really understanding how. A male friend who had been diagnosed with autism as a child once mentioned to her that she was ‘on the spectrum’, but she hadn’t paid much thought to what that might mean – until years later when she experienced difficulties managing the demands of her new job, a challenge she had really been looking forward to.
 
Her work difficulties prompted her to seek a diagnosis – but the process proved challenging, and part of the reason for this was Pia’s gender.
 
‘ASD [autism spectrum disorder] research was primarily based on male subjects and was not only considered rare up until the 1990s, but also considered a male-only condition,’ she told newsGP. ‘We now know this is incorrect and autism and autistic traits are common, and always have been. 
 
‘Moreover, it has only been recently that autistic females are slowly getting recognition, but many still continue to be un or misdiagnosed because of these incorrect and outdated stigmas.’
 
This conception of ASD as a ‘male’ disorder even affected Pia’s initial research into the condition prior to seeking a diagnosis.
 
‘I googled autism and found some of the symptoms resonated with me but not entirely,’ she said.
 
‘I then searched “autism female”, and that’s what really prompted me to get my diagnosis. I saw myself so clearly in all the information that ‘O Fortuna’ started playing in my head and it was like a thousand pennies dropping. It all made sense.
 
‘As I continue to research I still have multiple penny  dropping moments almost daily as I learn and understand why I do, say and perceive things differently to others, and how much ASD shapes the way I experience the world in my day-to-day life.’
 
When she was finally diagnosed with ASD at the age of 30, Pia experienced a range of emotions.
 
‘It’s like a roller coaster, I went through many different emotional phases whilst coming to terms with my diagnosis,’ she said.
 
‘Initially I was relieved, but then became angered when questioning why it had taken this long to understand my differences, why didn’t I get the help, understanding and assistance that I needed and how might have my life been different had I received early intervention?
 
‘Had I been diagnosed when I was younger, I’m sure I would not only have been spared a lot of heartache, it would have assisted both my family and myself in understanding and accepting my differences. There were so many factors where early intervention could have had a huge impact on my life and development. 
 
Pia also felt that she experienced discrimination after disclosing her diagnosis, ultimately resulting in her leaving her job.

‘It was upsetting, realising the challenges of living in a world which knows so little about autism and the barriers stigma creates for us, whether they are social, environmental, socio-economic or basic access to services and necessary accommodations that other minority groups or those with differing disabilities enjoy.
 
‘It’s not just a matter of society understanding autism, but actively promoting the acceptance and celebration of neurodiversity and our valuable contributions to the world.’
 
However, Pia has also experienced positives.
 
‘I’m learning to embrace my differences and develop a more positive outlook and approach to life by appreciating the strengths my neurodiversity accords me,’ Pia said.
 
‘But it’s a work in progress. Learning about how my autism impacts the way I experience and see the world in my day-to-day life has been an eye-opening experience. It’s never static, and, given ASD is a lifelong condition, I imagine this will continue to for many years, if not decades, to come.’
 
One of the issues for females with ASD who are seeking a diagnosis is that women and girls tend to present differently from boys, and are more likely to mimic their peers in an attempt to mask their autistic behaviours. Pia feels this behaviour can result from a blend of innate and socially determined factors.
 
‘From my personal experience, I think it is a bit of both,’ she said.
 
‘But the social aspect definitely comes into it, for sure, because if a boy’s loud, rambunctious or naughty, he’s just being a little boy. Whereas females, are socialised to speak, behave and dress a particular way and not question the status quo or say certain things that may disrupt, disgruntle or potentially offend because it’s not considered to be lady-like.
 
‘So you mimic and try to find ways to fit in to whatever the individual situation may be to avoid standing out or potentially getting into trouble.’
 
Another important issue affecting Pia’s diagnosis journey was the fact many doctors still seem to perceive ASD as a boy’s disorder.
 
‘For instance, when I told my GP about my diagnosis, he said something along the lines of, “Really? You’re not like any of my autistic little boy patients that come in”,’ Pia said. ‘I also spoke to a surgeon who has an autistic grandson and when I disclosed my diagnosis, he said, “It’s very rare, though, especially in females”.
 
‘Autism is not rare, it’s just up until recently, ASD research had primarily focused upon male subjects and diagnostic guidelines were so narrow to begin with that many GPs, teachers, society in general misunderstand ASD, its prevalence and sex differences.
 
‘Girls and women have been, and continue to be overlooked or often misdiagnosed because of this stigma and lack of knowledge. It’s only now as we understand how autism is perceived differently in females that we’re starting to see an increase in female diagnoses.
 
‘But, unfortunately, we still have a long way to come. There are many lost generations of women on the autism spectrum that have gone their entire lives not knowing they have ASD and are not receiving their fundamental right to help and support services.’
 
The time after Pia had gained her diagnosis and resigned from her job was a turbulent one, as she tried to come to terms with everything that had happened, but it also resulted in a silver lining – a new career in medical research.
 
‘Upon resigning, I thought, what is it that I’m passionate about? What are my strengths?’ she said. ‘Fresh off my diagnosis, I was meticulously researching all things about ASD to try and understand myself and make sense of 30 years of experiences.
 
‘As an academic researcher, I had always enjoyed learning and studying, so I searched “autism scholarship” and found a PhD scholarship funded by the Cooperative Research Centre for Living with Autism [Autism CRC] at the University of Queensland. Even though the deadline had just closed, I emailed them, applied, interviewed with the team and was fortunate enough to be offered the scholarship.
 
‘It was an unexpected change of career and an amazing opportunity  to work in a field where I’m constantly learning not only about myself and ASD, but more importantly,  develop research that helps to improve the quality of life of my peers on the spectrum which is incredibly rewarding.’
 
Pia is now studying towards her PhD in the University of Queensland’s Faculty of Medicine. Although it is early days, the ultimate goal of her research is to help educate GPs and medical students to better understand ASD in their patients so that adult men and women with ASD can receive better quality and more comprehensive healthcare.
 
‘The aim is to upskill and educate GPs about ASD in adulthood, and within that I will have a separate section dedicated to autistic females,’ she said.
 
As part of the development of this tool, Pia will be conducting research with GPs to help identify their learning needs and gaps in their education, as well as including people with autism in her research to identify barriers to quality healthcare and inform priority areas of her research project.
 
‘A lot of the literature shows that when surveyed, GPs feel confident about their knowledge of ASD and their ability to provide care to autistic patients, yet they’re also asking for further training,’ Pia explained.
 
‘So I want to explore why this is the case and identify the areas in which GPs need further development. Maybe they feel confident with the knowledge they have; but perhaps don’t feel comfortable with knowledge in certain topics, or even how to best deliver healthcare to autistic patients?’
 
‘So it’s about upskilling and re-educating GPs and medical students which includes information about autistic females.’
 
The CRC has a focus on actively involving people with autism in research, something about which Pia is very passionate.
 
‘Community-based participatory research methods involve including autistic individuals in all key areas of the research,’ she said. ‘We will conduct a workshop with autistic individuals, their carers and GPs to identify their experiences, needs, and identify barriers to accessing quality healthcare. This will not only inform and direct our research focus but also direct future research priorities.’
 
What Pia values most about this type of research is the way it enables people with autism to have a voice in issues and solutions that directly affect them.
 
‘There is a significant bias towards basic science in autism research which is mostly determined by investors and academics from targeted disciplines. Consequently, this begs the question of whether these research agendas align with the needs and priorities of autism communities?’ she said.
 
‘I think it’s really important for autistic individuals to be included in research and the subsequent policy it informs because ultimately, it’s our right and through our lived experiences we can pave the way to ensure a better future for not only ourselves but future generations to come.’

ASD autism spectrum disorder females with autism