Revealing the hidden spectrum: the Female Autism Phenotype
Hello there, I’m Rebecca, a late-diagnosed AuDHD-er (Autism and ADHD) and I’d like to preface this article with a disclaimer that I am certainly not a wordsmith like John! A friend of mine shared John’s site with me and I was blown away by his ability to present his experience with Autism and ADHD so eloquently (and concisely, I have not managed this myself). Nevertheless, I will try to organise my musings as best I can because, like John, I am really passionate about sharing my experience to benefit others.
This is the story of a girl (spoiler alert, it’s me) who flies under the radar for 31 years and then burns out in a blaze of glory.
On the face of it….
She had a normal childhood. She met all her developmental goals, appeared to socialise well, and performed well at school. She continued to excel academically, getting 11 GCSEs and 3 A-levels and did well enough to study Pharmacy at university.
She continued to socialise well, maintaining friendships she had since childhood. She’s generally well accepted socially and forms friendships on a personal and professional basis. By the time she was 31, she had built a successful career and by all accounts was doing well for herself.
Underneath was a different story…
From an early age, she had learned to “mask” her neurodivergent traits. Subconsciously, she formed a social blueprint for herself based on “what not to do”. She learned what people liked and didn’t like. She became exceptionally good at social mimicry and developed perfectionist tendencies, to the point that every school report ever written about her showed no signs of any (obvious) struggles, socially or academically.
Her saving grace was two very dedicated and supportive parents who (unbeknownst to them) provided the structure she needed to overcome, or at least manage, many of her struggles, and a small (but perfectly formed) friendship group who accepted her as her true authentic self.
She would visit many GPs over the years to be repeatedly told she had generalised anxiety disorder. She would desperately try to manage her mental health through medication and talking therapies, but nothing would work.
She deliberately concealed any discomfort from sensory issues (including being perpetually roasting when everyone else was cold). She tried to manage her impulsivity, but suffered with chronic disordered eating and couldn’t ever budget money to save her life. She struggled with, and often rejected, societal norms, including expression of femininity, traditional gender roles and expectations to get married and have children.
She felt like everyone else had all the answers in life and she was constantly clueless; confused by other people and their intentions, always missing the joke (and then becoming the butt of the joke), socially anxious and socially drained. She would still, years later, perpetuate her subconscious habit of carrying out a post-mortem of every single social interaction in an attempt to determine if she “got it right” (Kind of like sitting an exam but never getting the results. You can sort of guess how you did, but you’ll never really know). No matter where she was or who she was with, she felt like the odd one out.
Years of chronic people-pleasing, suppressing neurodivergent traits and neglecting her own needs would leave her drained and burnt out, with a desperate need to understand why. Fast forward to 2023, she receives the clarity she needed. Her whole perspective on life changes and she finally understands why she’s always found life so difficult. She was a round peg in a square hole all along.
Sadly, this story is not unique, particularly for females.
I was diagnosed with ADHD in 2022 and then Autism in 2023. To this day, I am eternally grateful for the psychiatrist who diagnosed me. When you look at the diagnostic criteria for these conditions, I do not obviously meet them. My psychiatrist had extensive experience in diagnosing females and therefore had a deep understanding of the nuanced aspects of neurodivergence in females.
There is a growing body of evidence around the “female autism phenotype” (FAP), which is used to describe a more accurate presentation of autism in females, as opposed to the behaviours referenced within current diagnostic criteria, which are mainly based on male populations. The female autism phenotype has the same characteristics as the diagnostic criteria (i.e. social communication difficulties, restricted and repetitive behaviours and sensory issues), but the difference is in how these are expressed.
Bargiela et al (2016) carried out an investigation into the FAP, using framework analysis to gather and analyse data from in-depth interviews of 14 late-diagnosed women with autistic spectrum conditions. I remember when I first read this article I cried so much. It was like looking into a mirror. I saw so much of my own experience in their accounts of late-diagnosed autism and it was so validating to know that it wasn’t all in my head. They describe incredibly candid accounts of the impact of misdiagnosis, getting through childhood and adolescence with compliance and passivity, social vulnerability, and much more. The authors’ findings summarise the unique challenges of the FAP:
“Our data suggest that some of the challenges of being a female with ASC do not come directly from the individual’s autistic difficulties; but rather reflect how these difficulties play out within a culture that has specific expectations for females”.
Hull et al (2020) carried out a narrative review of evidence for the FAP and noted that autistic females are more likely to internalise their problems, with “inward expression of emotional difficulties, including anxiety, depression, self-harming and eating disorders”. In addition, camouflaging, an aspect of the FAP, is described by the authors as “masking of autistic characteristics by presenting more socially acceptable personas; and compensating for differences in social presentation, such as forcing oneself to make eye contact”.
It’s important to note that masking or camouflaging isn’t exclusively used by females, but in this context is an important aspect of the FAP. The consequences of masking should not be underestimated as they result in chronic fatigue, burnout and erosion of one’s identity. I could talk forever about masking, I really could, but that’s for another day!
If you have made it to the end of this very long blog, I hope you have enjoyed it, or at least taken something useful from it. Brevity is certainly not my strong point.
Thanks for reading,
Rebecca 😊
References
Bargiela, S., Steward, R. & Mandy, W. The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype. J Autism Dev Disord 46, 2016; 3281–3294.
Hull L, Petrides KV, Allison C, Smith P, Baron-Cohen S, Lai MC, Mandy W. "Putting on My Best Normal": Social Camouflaging in Adults with Autism Spectrum Conditions. J Autism Dev Disord. 2017 Aug;47(8):2519-2534. doi: 10.1007/s10803-017-3166-5.