In honour of World Autism Acceptance Month this April, we hear from Jenny Rockwell ~ a Psychology Master’s student who is currently writing her dissertation on the under recognition of autism in women. Jenny shares her findings on why autistic women are often overlooked, the history of autism research + the internal vs external way it can present within women, reminding us of the importance of acceptance, understanding + advocating for yourself.
"While the social perception of autism is widening, many women still report being told they “don’t look autistic,” or are “too social” or “too empathetic” to be autistic, comments that reflect outdated stereotypes rather than clinical reality. Many have learned to camouflage their difficulties so effectively that their struggles remain invisible, often at great personal cost."
Sometimes, I learn things that I find very hard to let go of. Over five years of studying psychology, and now training to become a psychologist, I have learned of persistent gaps in research that I cannot ignore. One of these gaps is the under-recognition of autism in girls, women, and people assigned female at birth.
A quick note: while this article refers to women, many of these experiences may also apply to gender-diverse people, including nonbinary and transgender individuals, who remain underrepresented in autism research.
I couldn’t stop questioning it: why are autistic women more likely to be misdiagnosed, diagnosed late, or not diagnosed at all? Why are autistic women invisible throughout history? And more importantly, how can we change it? Now, I’m writing my masters dissertation on this topic, with the goal of creating research that directly centres late-diagnosed autistic women’s voices.
For much of recent history, the picture of autism was something along the lines of a young boy, socially withdrawn, intensely focused on topics like trains or machinery. No doubt, this experience is absolutely valid, but it is not the only one. Autism is highly heterogeneous, and no two autistic people experience it in exactly the same way. Much of the early research on autism focused primarily on boys and men. As a result, diagnostic criteria and common understandings of autism have historically reflected male presentations. This has shaped what many people expect autism to “look like,” and in turn, what may be recognised, and what may be missed.
One group that is frequently overlooked are Level 1 autistic women (officially, the levels are used to indicate an individual's support needs, though the ethics and accuracy of this classification style are widely debated). One reason suggested as to why this group is often under-recognised is due to high levels of masking (the deliberate suppression or camouflaging of autistic traits to appear more neurotypical). Many people engage in some degree of social masking, even neurotypical people sometimes socially mask! But for autistic people, masking refers to what is often constant, conscious, and exhausting. It may include imitating social behaviours, rehearsing conversations, forcing eye contact, or hiding painful sensory distress. Over time, masking is associated with burnout, emotional exhaustion, and increased mental health difficulties.
Research also suggests that autistic women may have different patterns of special interests. Rather than interests traditionally associated with autistic boys, their intense interests might focus on areas such as animals, psychology, celebrities, social justice, fictional characters, literature, fashion, or media. Because these interests are more socially acceptable, their intensity may be overlooked, meaning a key feature of autism can go unrecognised.
Interestingly, research shows all women (neurotypical and neurodivergent alike) are more likely to internalise their distress. For autistic women, this may add to their experiences not aligning with traditional understandings of autistic symptoms. While many autistic people experience outwardly visible meltdowns, many autistic women experience internal shutdowns, which can look like emotional withdrawal, intense anxiety, dissociation, or extreme fatigue. These experiences are often misinterpreted as anxiety disorders or depression, which can delay an autism diagnosis for years.
Socially, many autistic women may appear capable on the surface. They may maintain friendships, navigate social environments, and even present as socially fluent! However, this often requires significant effort. Sensory sensitivities (to sound, light, textures, or crowds) can compound this exhaustion. Autistic women may experience long periods of burnout and fatigue following socialising, and need significant time to recover afterwards. Contrary to stereotypes, many autistic women also report experiencing intense empathy, sometimes to the point of emotional overwhelm. As you can see, many of the experiences of autistic women don’t align with traditional symptoms of autism, which is likely part of the reason it takes so long for women to receive an accurate diagnosis, and consequently, the right support. These gaps can be even more pronounced for people navigating multiple layers of marginalisation, including queer, transgender, and culturally diverse individuals, who are still largely underrepresented in autism research.
Through my own research, I have discovered that many autistic women pinpoint receiving a diagnosis as life-changing. It can be hugely validating and vital for self-understanding, helping individuals recognise their true needs and reduce burnout. While the social perception of autism is widening, many women still report being told they “don’t look autistic,” or are “too social” or “too empathetic” to be autistic, comments that reflect outdated stereotypes rather than clinical reality. Many have learned to camouflage their difficulties so effectively that their struggles remain invisible, often at great personal cost.
If there is one message I want to leave you with, it is this: listen to autistic women. Listen to autistic people. Autism does not have one “look." The spectrum is wide and varied, and everyone deserves recognition, understanding, and support. We need more research on autism, by autistic people. We need more research on women, by women. And if you recognise these experiences in yourself, it may be worth speaking with a professional who is neurodiverse affirming, and up-to-date with inclusive, intersectional autism research. Trust yourself and your experiences, and advocate for yourself until you receive the support and understanding you deserve!
Lots of love, Jenny.
Photographed by Nat Hutton
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