'You don't look autistic': Why neurodivergent women have been sidelined

Birmingham: I walked into the gym and froze. The kettlebells had been moved. Their colours were in a new order. The cardio equipment had been relocated. Nothing seemed how it was.  I felt uneasy and exclaimed to my personal trainer: "Everything's wrong! They're meant to be by the window!" This wasn't the first time I had experienced a visceral reaction to changes in my environment. I once became particularly distressed at the sofa being changed in my counsellor's room.  I used to torture myself over why I was like this. Why did I get so upset about things that didn't seem to bother others? I was intelligent and a high achiever despite leaving my work until the last minute and operating on a constant rollercoaster of highly productive peaks and deeply depressed troughs.  Yet the many decisions, steps and multi-tasking involved in cooking a meal could send me over the edge. It didn't make sense. I was constantly exhausted. People exhausted me. Life exhausted me.

I now know I am dyspraxic, autistic and ADHD. The depression, anxiety and panic attacks I struggled with for years were likely burnout and sensory overload.

Sex bias leads to late diagnosis — and misdiagnosis Neurodivergent women and girls have been overlooked by the medical profession for decades.  Traditionally, ADHD and autism have been perceived as male conditions, contributing to a two- to fourfold higher likelihood of diagnosis in males compared to females.

The diagnostic criteria for ADHD and autism exhibit a male bias — partly because researchers historically recruited only boys and men to scientific studies. This has led to clinicians failing to identify women's presentations of these conditions.

Clinicians, accustomed to recognising autistic features in boys, may also overlook or misdiagnose autism in girls.  That's if they are referred at all. Research shows girls are less likely to be referred for diagnosis despite exhibiting characteristics of both conditions. The chances of recognition are even slimmer if you aren't white or middle-class.

Women also often display less overt inattentive symptoms of ADHD; these differ from the externalised hyperactivity symptoms predominantly observed in males, resulting in the underdiagnosis of ADHD in girls.

Reading Sarah Hendrickx's Women and Girls with Autism Spectrum Disorder was a lightbulb moment. She was describing me, my childhood, and my unique weirdness.

I couldn't cope with uncertainty and change, however small. The wrong texture of clothes could drive me to lose my temper. I was an extremely bland and fussy eater. I couldn't stand when things were ‘wrong' or unjust. I would get fixated on what others could easily let go of.

I spent my whole life trying to figure out what others meant when they spoke, because they never said what they meant. I would become obsessed with topics and immerse myself, shutting everything else out.  Animals were my biggest allies. I couldn't master gears in a car, I was clumsy; I had overwhelming emotional outbursts that I should have grown out of decades ago; I was always late, I lost everything. If I can't see something, it no longer exists — I have multiple copies of things, having forgotten I'd already bought them.

I feel like I have multiple monkeys in my brain that all need to be kept busy at the same time in order for me to wrestle control over my mind and body. The racing thoughts never stop.

When I discovered I was autistic, I suddenly realised: It wasn't just me. There wasn't something deeply wrong with me. I wasn't failing at life and unable to cope with the same mundane tasks others breezed through. I experience the world in a different way.

But this wasn't the whole story. I didn't fit neatly into the ‘autistic' box. Learning about ADHD explained why — I was AuDHD.

Harmful impacts on the ‘lost generations' of AuDHD women My story is not unique.

My research about late-diagnosed women's experiences of autism and ADHD shines a light on the rollercoaster lives, misdiagnoses, mental health difficulties, and negative self-perceptions of AuDHD women who lived a life undiagnosed.

Girls with ADHD and late-diagnosed autistic females often engage in effective "masking" behaviours (that is, the emulation of neurotypical behaviours) because there is more pressure on girls to conform, to behave, to silence their struggles.  Masking can make these conditions less visible and less likely to be diagnosed. Masking is protective but it can also be harmful, causing neurodivergent individuals to feel "disconnected" from their true sense of identity, and being linked to higher rates of depression, anxiety and suicidal ideation.

Up against these systemic challenges, women are left to figure out the puzzle of their lives, and themselves, before even embarking on a battle to attain a diagnosis. It means they often miss out on the benefits afforded by early diagnosis.

Yet even a diagnosis is not an automatic ticket to recognition.

Media portrayal of autistic characters, typically played by men, hampers the public's ability to envision autistic women (hence the all-too-common refrain "You don't look autistic".) The surging popularity of ADHD on social media sites such as TikTok has resulted in scoffs that "everybody has ADHD nowadays".  It is impossible to adequately depict the multitude of challenges that autism and ADHD bring to everyday life and interactions. It is not ‘just' being a little forgetful, ‘overly' sensitive, lacking motivation, easily overwhelmed and emotionally dysregulated. It is also not all negative.

Adding a combined diagnosis of autism and ADHD into this mix complicates things further. The conditions can mask each other. They are often experienced paradoxically, leading to further distress, as I have written elsewhere. Because of these contradictions in the diagnostic criteria, a combined diagnosis was not even possible before 2013.

Changing tides Change is underway as an increasing number of women gain awareness of these conditions, actively pursue diagnosis, and receive one.  In the US, the ratio of boys to girls diagnosed with autism was 3.8 to 1 in 2023 — a shift from 4.7 to 1 in 2012. In the UK, 23 percent of new diagnoses of autism were female in 2018, up from 18 percent in 1998.

Some researchers and advocates, including me, have also called for further efforts to de-medicalise autism, and to promote the social model of disability — for example, by raising awareness of autistic and ADHD strengths and not focus solely on impairments or deficits.  To some extent, the emergence of high-profile neurodivergent women such as Grace Tame and Emma Watson may have also challenged old stigmas and increased awareness of how autism and ADHD might show up in women.

Despite these positive trends, women face substantial obstacles in accessing care and support.

Waiting periods can extend to years, pre-and post-diagnosis support is often insufficient, and diagnostic criteria remain sex-biased. Women still face lifetimes marked by misdiagnoses, compromised mental health, and internalisation of negative perceptions about their character—all without adequate assistance.

The delayed diagnoses of autism and ADHD in women is a critical public health concern.

The repercussions of being undiagnosed are severe, leading to a lifetime of traumatic experiences, bullying, and feelings of not fitting in.  Neurodivergent women are particularly vulnerable to gender-based violence and sexual assault, with research indicating higher odds of such incidents for ADHD and autistic women. Earlier identification of neurodivergent conditions could help to mitigate these risks.

There is a need for funded holistic, women-centred, and trauma-informed neurodiversity assessments and pre- and post-diagnosis support.

While resource constraints are often cited as the reason for slow progress in this space, advocates have correctly pointed out that the costs of delayed intervention, multiple waiting lists, assessment processes, mental health treatments, economic impacts of unemployment, and the human toll of suffering are much higher.

We urgently need to stop neglecting, silencing, and causing harm to neurodivergent women and girls. (360info.org)