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The challenging journey to female autism diagnosis

The materials used to diagnose autism are biased towards male presentations of autism. This means that autistic males are far more likely to receive an autism diagnosis than autistic females.

Undiagnosed autistic females are more likely to be described as highly sensitive, shy, depressed, or diagnosed with conditions such as borderline personality disorder (BPD), bipolar disorder, and other mental health conditions.

Autism is not a mental health condition

Autism is a genetic neurodevelopmental difference. Many autistic people experience mental health conditions, either as a part of being autistic or because of the difficulties autistic people experience growing up and surviving in a world that is often hostile to autistic bodies and brains.

Why are so many autistic women not being diagnosed?

Autism scholarship is inherently biased and many healthcare practitioners are not trained to recognize autism in females.

Autistic females with average or above average intelligence (IQ) are most likely to go undiagnosed “causing them to miss crucial support that may accompany a diagnosis and alleviate some of their struggle,” writes Dori Zener, a clinical social worker in Toronto, Ontario.

Undiagnosed autistic women are at risk for increased rates of anxiety, depression, suicidal ideation and suicide attempts, and other mental health concerns.

A deep sense of being different

“For women with unidentified autism, anxiety comes from knowing they are different, but not knowing exactly why or how.”

Dori Zener

Perhaps the number one feature of autistic women who reach adulthood or even late adulthood without a diagnosis is an unrelenting feeling of being fundamentally different than their peers. They often describe feeling alien or incapable of being understood by others.

Many undiagnosed autistic women begin masking from a young age in order to try to fit in, and some do very well at this (to the point where no one, not even the best diagnostician, would be able to detect autism). Masking is almost always unconscious and the autistic girl often assumes that everyone has to put the same effort in to exist in the social world.

Some undiagnosed autistic girls function relatively well in school by being part of a small, close-knit group of likeminded friends. These friends may themselves be autistic or otherwise neurodiverse (e.g., ADHD, Tourette’s, etc.) which may explain the affinity they feel for one another. Autistic girls are often known to befriend those who experience rejection or bullying or who are otherwise seen as different by the majority. (They may themselves experience a great deal of bullying.)

Alternatively, the autistic girl may spend non-academic time pursuing hobbies or extra-curricular activities with an intensity not seen in her peers. Their enthusiastic participation may help further camouflage difficulties with social pursuits.

Some autistic girls have been known to be deeply committed ballerinas, athletes, musicians, artists, actors, and so on — pursuits that cut into class time or time at school and/or time that would otherwise be spent socializing with peers. Their social differences are therefore often chalked up to their intense talents or passions.

The profile of an autistic girl with average or above average intelligence is often very different from the typical profile of an autistic boy or an autistic individual with below average IQ. She may be seen as gifted, shy, eccentric, depressed, and/or uniquely talented.

Whether or not an autistic girl is able to develop friendships with relative ease, they continue to mask and camouflage to fit in — often with disastrous results.

“Masking can be detrimental to a person’s sense of self,” says Zener.

“[Masking] communicates inwardly that their true self is flawed and needs to be concealed or altered. Frequently this leads to identity crises, because after years of piling on layers of camouflage they are left wondering who they really are …

“Years of rote learning and mimicry permits them to pass as neurotypical, but this incessant extensive posturing leads to significant fatigue and mental strain. Their minds are full at the end of each day, trying to make sense of all of the conversations that took place and wishing they had made a different contribution. Overload can be lessened through social withdrawal and sensory deprivation, such as baths, dark quiet rooms, immersion into intense interests” and so on. — Dori Zener

Undiagnosed autistic women often graduate high school. Those from privileged backgrounds may complete college or university with relative ease and go on to complete advanced degrees. In the right environment, with the right familial and financial supports, they can excel.

Deep thinkers, deep feelers

Autistic women, however, whether diagnosed or not and even with the substantial benefits that privilege may bestow, often struggle tremendously.

They feel more strongly than most (for better or worse), need more time to process thoughts and emotions, second-guess themselves constantly, and — due to their tendency to be people pleasers and their inability to detect nefarious motives in real time — are often the targets of bullying and abuse at the hands of unscrupulous individuals.

Their tendency to ruminate and process information and stimuli very deeply leads to the tendency to develop PTSD more often and more easily than their non-autistic peers. This also means that autistic women are more susceptible to developing mental health conditions such as depression, anxiety, trauma disorders, and other co-occurring conditions.

Autistic women have a very high risk of developing suicidal ideation, eating disorders, and stress-related health conditions. Many report feeling suicidal by late childhood or their early teen years. Lack of diagnosis only further increases the severity of these conditions and the likelihood of developing suicidal ideation and suicide attempts.

Many autistic women who are diagnosed as autistic in adulthood report that their diagnoses brought a deeper sense of self-understanding and self-compassion.

Am I autistic?

If you think you might be autistic, here are some things to think about:

  1. Explore the process of getting a diagnosis or autism assessment. This process will differ from state to state, province to province, and country to country. The number one thing to look for in a healthcare provider is whether they have experience and training in diagnosing autism in adult women or those who identify as female.
  2. Connect online with members of the autism community and ask questions. Facebook in particular has many groups to choose from, many of which are private.
  3. Ask parents, extended family, and family friends about how you were as a baby, toddler, and child. Autism does not suddenly develop or show up in later life; autistic people are born autistic, meaning that autistic traits exist from day one. Many autistic females develop normally (i.e., they generally meet developmental milestones on time), but all autistic people will have marked sensory differences: they will be either overly sensitive to sensory stimuli (textures, noise, bright light, touch, etc.) or under-responsive. Many of these sensory differences may be evident from the first days or months of life.

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