🤯 But She Doesn't Even LOOK Autistic!
Unseen and overlooked: reviewing autism's gender bias, the perils of masking, and why we keep getting this wrong
The A-Word
Diagnosis day is here, and I am PREPARED. I am ready. Beau and I sit side by side, our hands clasped tightly under the desk, as we face our pediatrician over Zoom. She adjusts her glasses and clears her throat. “Alright. So I have the results of the assessments, and before I jump in, understand that this is not a death sentence, or even a forever diagnosis. Peach is young, and in a few years with the right help, she might not even flag for autism anymore.” My nails dig into Beau’s palm. “Peach’s behavior is consistent with a diagnosis of Autism Spectrum Disorder. Some parents choose to call this the A-word. We can use whatever word you like."
I am distracted by our pediatrician looking at her second monitor, reading from some sort of script. It's an odd parallel as she discusses Peach's challenges with eye contact and direct interaction. She continues for a few minutes reading through the DSM-5, but at that point, I know the language by heart.
We close the laptop, and I jump to my feet. “F*ck her,” I find myself saying, immediately shocked by my own reaction. Despite all the preparation, the books, articles, and personal reflections—nothing had prepared me for the tempest of anger and protectiveness within me.
And why?
First, I am angry at myself, my genes, my very insides. I am incensed that my magic child has inherited an extreme version of this busy brain thing I have, a lineage marked by generations of alcoholism, addiction, eating disorders, anxiety. That she might face the same isolations and misunderstandings I did, on playgrounds and in classrooms, treated as too much, too extra by a world that values conformity over uniqueness. Compliance over an iron will, politeness over agency.
Second, I'm disheartened by the experience of receiving this information as a list of deficits, delivered to us in hushed tones more suited for a dire prognosis than a description of a neurotype. It’s difficult for me to reconcile the clinical and somewhat impersonal nature of terms like ‘disordered.’ What a harsh word for someone whose mind operates in a way that is arguably more ordered than the rest of us.
Finally, I’m frustrated that I'm still caught in the throes of our medical-industrial complex known as Healthcare in America. Peach fell through the cracks of well checks and assessments, her behavior distinct from that of autistic boys. I am angry that we had to wait months for this moment, months that would have been better spent intervening in that “magic window” of ages 0-3.
I know my rage is irrational, even as it burns through me. But I let myself feel it all, because after almost two decades in recovery, I know the only way out is through.
The family that screams together …
That weekend, we take Peach and Aira to the park, opting for a secluded spot deep in our neighborhood that we know is usually empty. We do this to shield against the possibility of meltdowns and the discomforting stares they inevitably invite. As I push Aira on the swing, tickling her chubby legs just to hear those sweet squeaky squeals, I catch a glimpse of Beau and Peach trying to play a game of soccer. "That’s great, Peach!” he encourages. “Just pass it to me.”
Suddenly, Peach's frustration boils over. She lets out a blood-curdling scream and starts crying, grabbing the ball and hurling it directly at Beau, her face blood red and twisted into a scowl. But instead of rushing to quell her screams with hushed tones and desperate pleas for calm, I find myself walking over, bending a knee beside her in the soft grass, and saying, “I understand. You’re angry. Let’s make some room for that big anger. I’m angry too. Want to scream together?” And with the world watching, I hold her hand tight, and we both scream until we collapse, giggling in the grass.
I think: we are a family. This is life on the spectrum, uncharted and raw, filled with moments of challenge but also immense love. It’s a life we hadn’t planned for, but it's undeniably ours. This is hard, this is huge, but our love is bigger.
But she doesn’t even look autistic!
As the weeks unfold, I tell my parents, my sisters, my friends. Peach’s school, her primary care doctor. The range of responses is astounding:
I’m so sorry.
My kid is also on the spectrum!
You can’t even tell.
She doesn’t look autistic.
Did you get a second opinion?
But she talks a lot!
Ohhh, is that why she doesn’t give hugs?
That makes a ton of sense.
Um … obviously.
But the most common response is one of skeptical surprise: are you SURE?!
Understanding autism in females
I'd like to brush off this response as uninformed, but honestly, I had a similar reaction. Since the advent of our modern-day understanding of autism, it's generally been accepted that there are more males than females with the condition. This assumption was so ingrained that it went largely unquestioned.
Recent studies are challenging this notion, revealing that a significant number of girls and women are on the spectrum. The issue is that their autism often goes unrecognized. The reason for this oversight is that females tend to "mask" their autistic traits or express them in ways that deviate from the stereotypical, male-oriented diagnostic criteria. These criteria were established based on studies that primarily focused on males or did not account for gender differences.
Unpacking misconceptions: why are we missing this?
Autistic girls often do not fit the stereotypical image of autism that has been popularized in media and literature, leading to their experiences being misunderstood or entirely dismissed. Studies show girls are significantly less likely to receive an ASD diagnosis than boys, even when their symptoms are equally severe.1
👉 Masking: a survival mechanism
One of the key reasons for the misconception that girls "don't look autistic" is their ability to mask or camouflage their symptoms. Masking involves consciously or unconsciously imitating neurotypical behaviors to blend in with peers. This survival mechanism, while protective in some social contexts, can also lead to significant stress, anxiety, and depression as individuals constantly strive to appear 'normal.’2
🔍 Translational examples:
Many autistic women struggle with social events (like birthday parties or work mixers), but attend anyway due to social pressures, despite the substantial mental toll and exhaustion. I know many autistic women who go “blank” afterwards, entering a state of shut down after a long period of overstimulation.
Engagement in self-stimulatory behavior ('stimming') often adheres more to socially acceptable norms and is less physically damaging: this might include behaviors like hair twirling, listening to the same songs on repeat, or repeatedly opening and closing a book.3
Masking also encompasses the act of over-compensating to overcome challenges related to autism. The goal of compensation is to appear independent, high functional, and “normal.” An example could be researching a person before meeting with them, for fear of running out of things to say.
👉 Misdiagnosis: we’re looking for the wrong things
This pervasive masking and misunderstanding often results in girls being misdiagnosed with conditions other than autism or receiving their diagnoses significantly later than boys. Such under-diagnosis and misdiagnosis not only delay vital support and intervention but also contribute to the marginalization, and oftentimes erasure, of their experiences.
🔍 Translational examples:
A common misdiagnosis is attachment anxiety. Often we hear about autistic aloneness, the idea that autistic individuals aren’t naturally attached to others, and prefer long stretches of time in isolation. Observations in young girls challenge this idea, showing that they frequently exhibit the opposite behavior.
In her book Women and Girls with Autism Spectrum Disorder, Sarah Hendrix effectively summarizes the issue:
Rather than the ‘extreme autistic aloneness’ personality … Kopp and Gillberg (1992) saw girls in their study being more ‘clinging’ to others, imitating their speech and movements without a deeper understanding of the silent laws of ordinary social interaction. They also saw more repetitive questioning and ‘almost constant use of language’, which is not commonly expected in the typical (male) profile of autism.
Another area of misunderstanding is that of imaginary play. Peach is a highly imaginative child who is constantly immersed in a fantasy world of her own creation. Our pediatricians often inquire if Peach engages in imaginary play, to which I invariably respond, 'Of course.' They then mistakenly conclude that she is unlikely to be autistic, based on the erroneous belief that autistic children do not engage in such play—a misconception that is especially prevalent regarding females.
There are numerous, decades-old studies that disprove this notion. In my research, I found a widely cited 2008 study that investigated sex-typical play behaviors in children with autism. The study revealed that while boys with autism showed minimal interest in imaginative games, girls with the condition were substantially more involved in play that required creativity and imagination.4
Lastly, a misconception that I particularly find troubling is the idea surrounding meltdowns—when girls express strong emotions or act out aggressively, they are often severely punished for not being "polite," leading them to suppress their aggression from an early age (masking). This suppression of emotion, I believe, could partially explain why many autistic girls later develop eating disorders, as they channel their suppressed rage and aggression inward in deeply harmful ways.5
What now?
In sharing our family’s story, I tread lightly, acutely aware of the delicate balance between advocacy and privacy. My aim isn't to expose but to enlighten, to spark conversations that broaden our collective understanding and dismantle outdated stereotypes. Speaking up about our lived experiences is crucial—it's the foundation on which we build more inclusive, compassionate care.
The narrative of ‘she doesn’t even look autistic’ must give way to a more nuanced, informed, and holistic understanding of autism. Only through raising awareness, challenging misconceptions, and fostering a culture of acceptance can we hope to support the many girls and women on the spectrum who have gone unseen. As we continue to learn from their experiences, let us advocate for a world where being different is celebrated, support is tailored, and no one is invisible.
Nothing for us, without us, as they say. Onward.
💪
Russell, G., Steer, C., & Golding, J. (2011). Social and demographic factors that influence the diagnosis of autistic spectrum disorders. Social psychiatry and psychiatric epidemiology, 46(12), 1283–1293. https://doi.org/10.1007/s00127-010-0294-z
Price, D. (2022). Unmasking autism: Discovering the new faces of neurodiversity. Harmony Books.
Mandy, W., Chilvers, R., Chowdhury, U., Salter, G., Seigal, A., & Skuse, D. (2012). Sex differences in autism spectrum disorder: evidence from a large sample of children and adolescents. Journal of autism and developmental disorders, 42(7), 1304–1313. https://doi.org/10.1007/s10803-011-1356-0
Knickmeyer, R. C., Wheelwright, S., & Baron-Cohen, S. B. (2008). Sex-typical play: masculinization/defeminization in girls with an autism spectrum condition. Journal of autism and developmental disorders, 38(6), 1028–1035. https://doi.org/10.1007/s10803-007-0475-0
Meier, M. H., Slutske, W. S., Heath, A. C., & Martin, N. G. (2009). The role of harsh discipline in explaining sex differences in conduct disorder: A study of opposite-sex twin pairs. Journal of Abnormal Child Psychology, 37(5), 653-664. https://doi.org/10.1007/s10802-009-9309-1