What it’s like to seek an autism diagnosis as a woman in your late twenties

“No wonder women aren’t diagnosed as frequently, or as young, as boys and men. There simply aren’t enough honest depictions of autism in women and girls in the media.”

There was a point in my adolescence when I decided that to go on, I had to change. Armed with a hair straightener, makeup and importantly, a new personality, the ‘glow-up’ began. My bizarre interests were shelved around my peers and my activism took upon a more palatable form, further diluted in being delivered by this shinier, more feminine actor.

I’d removed all evidence of my embarrassing former self, though the kernel of loneliness remained. My inner self appeared only on anonymous online forums, never to see daylight among ‘normal people’. It seemed as though my front was working, too; I found jobs and new friends and got invited to parties and galleries. I found a way to perform my personality in a way that, put simply, people liked. I was rewarded for my effort. 

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Years later, I noticed a growing online discourse around neurodivergency. I spent hours on the internet listening to others who had remarkably similar childhood experiences to mine – having odd interests, hiding their intense feelings and feeling very lonely. Reading their stories of diagnosis led me to complete online questionnaires and tests, most of which affirmed my inkling that I might also have a place on the spectrum.

But upon discovering the financial cost of diagnosis, I recoiled. The idea of forking out thousands to diagnose something that isn’t even an illness made me irritated and confused. Besides, my social life was growing, I could hold down a job and my bills were paid. All good, right? My flourishing social life came at a cost, however, especially in romantic relationships. I couldn’t articulate why I was feeling so depleted, shrugging off my partners’ attempts to understand my low mood.

These relationships all suffered the same fate – a breakdown in communication on my end, followed by an Irish goodbye that left my partners feeling confused and hurt. Being invited to parties didn’t negate the overwhelming effort it took me to have conversations, to look and act appropriately and to be present in the moment. My mind would race: ‘What’s my posture like? Am I coming across as “too intense”? Why is it hard to look at people?’. 

I’ve since had the opportunity to meet a number of people with autism who’ve shared their experiences with me and helped me understand a little more about the complicated nature of the spectrum. Because autism doesn’t present the same way in individuals, being diagnosed isn’t down to a one-off appointment or questionnaire. It’s a process and one that often evades women until they reach adulthood. In fact, women are often pretty good at hiding their autistic traits, which can lead to intense anxiety, depression and burnout as a result.

We’re already aware of how much pressure is put on women to conform, so it’s sadly unsurprising that women fall under the radar when it comes to being diagnosed with autism. Popular media often portrays people with autism as obstinate men who trample on social cues and disregard others in favour of their niche interests, which isn’t only false, but derogatory.

These poorly written stereotypes neglect the nuances of neurodiversity and also erase the female experience entirely. No wonder women aren’t diagnosed as frequently, or as young, as boys and men. There simply aren’t enough honest depictions of autism in women and girls in the media. 

Though discussions around autism are becoming more prevalent in public discourse, there’s still an abundance of confusion and mythology around what autism looks like. My parents certainly didn’t have access to information and resources regarding neurodiversity, and the conversations surrounding mental health in the ’90s definitely weren’t comparable to those of today. I’m not surprised they thought my behaviour a little odd, but nothing to explore more deeply.

My parents considered the early flagging of ADHD in my classmate, for example, to be “woo-woo”, dismissing it as childhood boredom and neurotic parenting. I don’t think my parents were entirely inattentive, but they didn’t have the tools to understand the importance of their child’s inner world. 

It’s reassuring to know that other adult women are in the same boat, some of whom learn they are autistic after having neurodivergent children of their own. Sandra Thom-Jones’ piece in The Guardian reflects on her meandering road to an autism diagnosis, the feelings of validation it finally gave her and the insight it offered her as a mother to children on the spectrum. Now, in my late twenties, I’m considering the option of pursuing a diagnosis.

Maybe it would account for my underlying fear and anxiety, for the depression that creeps in, even on my good days, and for the strict daily rituals that are so vital to my mood. I spend a lot of time reflecting on my childhood, thinking about how an earlier inquiry into my mental health could have saved years of emotional turmoil. Some resentment bubbles, but I know it’s misdirected. The struggles I had at school, the bullying and isolation can’t be erased, but I can learn to look back at my younger self with empathy, not judgment.

I’m still undecided on what to do next. The financial strain intimidates me, but being in a grey area doesn’t bring me comfort either. Was I a precocious child, or were my obsessive interests and social clumsiness an indication of neurodivergent thinking? Could specialised therapy ease my anxiety and depression? Would a label vanquish my feelings of self-doubt and failure?

I think the first step is to reconcile with the smaller, more fearful person who decided that there wasn’t room for herself in the world. It’s to tell her she needn’t fear because a) hair straighteners will be cast aside for natural waves and b) most of those parties will suck, anyway. 

This article was originally published on February 20, 2023.

For more information on how autism presents itself in women, try this.