An empty corridor.

Anna Wolfe

The shift from Autism Awareness to Autism Acceptance Month is evidence we’re moving in the right direction. Yet, autistic women face delayed or missed diagnoses. Neurodiversity in women needs more than a month-long focus.

In a recent study by University College London, researchers estimate 750,000 people in England above the age of twenty are undiagnosed autistics. This brings the total number to more than 1.2 million — almost double the reported figure. 

Statistically speaking, women already have poorer access to healthcare in the UK. They frequently receive false or overdue diagnoses and experience difficulties obtaining treatment. In fact, a Public Health England report revealed that the average woman will suffer from poor health for almost a quarter of her life, compared to one-fifth in men. Black women receive even poorer treatment. 

It should come as no surprise that autism diagnoses for women fall under the “false and overdue” umbrella. 

@chloeshayden

Everyones for autism awareness until its autism acceptance #ColorCustomizer

♬ 5 years bo burnham – hali

 

What Is Autism? 

Autism spectrum disorder (ASD) is a multifaceted, neurodiverse condition that affects people differently regarding their support needs and symptoms. The most commonly recognised features are difficulties with social interaction and communication. As a neurodiverse woman, I personally struggle with the word “symptoms,” which suggests that I’m sick instead of different. 

I wasn’t diagnosed with severe attention deficit hyperactivity disorder (ADHD) and obsessive-compulsive disorder (OCD) until the age of 28. While my acronyms haven’t come without difficulties, being diagnosed has had endless silver linings. It makes it easier to understand myself and how my mind works.

That being said, neurodiverse conditions are a legally recognised disability for a reason.  

“It isn’t uncommon for women to be misdiagnosed with mental health conditions instead”

ASD symptoms are specific to the individual. However, some of the ways it may present itself are: 

  • Communication and interaction challenges
  • Repetitive and restricted behaviour patterns
  • Sensory sensitivities (such as light, sound, taste and touch)
  • Anxiety, specifically in social situations 
  • Episodes of severe overwhelm 

That is only the tip of the iceberg. Over a third of people with ASD also have severe mental health conditions. This is worsened by the lack of affordable mental health support for autistic people. Some will need carers for their entire lives and many are unable to work. 

Thanks to modern research and people sharing their experiences, how we understand ASD is forever evolving. The medical community needs to address the gender gap, as well as racial biases, so young girls and women can get the support they need. 

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Why Are Autistic Women Diagnosed Late?

Medical Research Bias

The current childhood assessment guidelines are formulated using research on boys, meaning the widespread perception of ASD tends to be outdated. This makes it harder for teachers, parents and medical professionals to spot symptoms in girls. As a result, many women don’t receive a diagnosis until later in life, if at all.

Research shows that women often present differently than men. According to the Adult Autism Centre, differences are “subtle yet significant.”

Dr Kaustubh Supekar explains: “Their clinical and neurobiological characteristics and their brains are patterned in ways that contribute differently to behavioural impairment.”

“We will analyse every conversation, every social faux pas, and we will recriminate ourselves for it, and never forget it”

An example of this is repetitive and restrictive behaviour patterns – one of the most recognised aspects of ASD’s fundamental characteristics. Yet, research suggests that girls are less likely to exhibit these behaviours. 

It isn’t uncommon for women to be misdiagnosed with mental health conditions instead. For years, I was told my ADHD and OCD were depression and anxiety. I also struggled with an eating disorder and addiction issues, something I didn’t know I was more susceptible to because of my neurodiversity. 

Social Stigma

It isn’t just that the diagnostic process isn’t designed for women. They are also more likely to hide (or “mask”) their ASD symptoms from a young age. Shame is induced by social stigma, so they try to behave like their peers. A lack of educational tools for children also means they don’t realise their struggles aren’t typical. 

Traditional ideas of social and communication differences in autistic people don’t consider gender tropes, such as the expectation for girls to be polite and compliant. Girls often learn to hide their symptoms from a young age, usually by copying others. Eventually, masking produces intense anxiety, often leading to isolation, overwhelm and burnout. 

Describing her own experience with masking, author Jane McNeice said: “I live with a fear that I sound arrogant and rude when I don’t mean to or want to be. We will analyse every conversation, every social faux pas, and we will recriminate ourselves for it, and never forget it.”

Whilst research backs symptomatic variances, there are a lot of similarities too. Dr Kate Fox, an autistic poet and comedian, told the National Autistic Society that she doesn’t think there is “an inherent difference between autistic men and women,” rather a difference in “how society treats and socialises males and females.”

Times Are Changing For Autistic Women

Fortunately, as awareness increases, women are voicing the need for change and an increasing number are finally getting diagnosed.

In 2023, the NHS introduced a national framework to improve assessment processes and accessibility. It states: “This national framework sets out the principles that should underpin the planning, design and delivery of an autism assessment pathway that works for everyone.”

But this doesn’t mean that other factors – including sexism, racism and classism – are no longer barriers to diagnosis. It’s still necessary for doctors, families and society as a whole to tackle the unconscious biases attached to disabilities.

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Featured image courtesy of Rebecca Campbell via Unsplash. No changes were made to this image. Image license found here.

Anna Wolfe is a freelance journalist and podcaster. Her work covers everything from sobriety and subcultures to sexuality and societal commentary. Passionate about mental health, her writing always seeks to educate, empower and end shame in all its forms.  

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