What it’s like being diagnosed with autism as an adult

My brother was diagnosed with autism spectrum disorder (ASD) when I was five years old. By the time I was six, I was a young carer for him, navigating ableism, misinformation, and harmful stereotypes.

I watched him get bullied and handballed between medical professionals like a science experiment. Exhausted and confused, my family tried to navigate the perplexing disability support system and the unsolicited opinions of those around us.

Despite my intimate knowledge of autism as a carer and family member, it was decades later that I was diagnosed myself – at the age of 30.

The broad lack of awareness about how ASD impacts women meant I went undiagnosed and unsupported with my disability for most of my life.

Why I delayed seeking an autism diagnosis

While glaring issues persist, like challenges accessing NDIS funding and institutionalised abuse, there is now a much greater understanding and acceptance of disability and neurodivergence in progressive social circles.

But in the 90s, the rhetoric around disability was disempowering and bleak. I learned to hide my brother’s differences from the world to protect him from very real threats of discrimination and violence.

I concealed my own social, neurological, and sensory challenges to stay safe and avoid being similarly mistreated, excluded, and othered. Even when I started to suspect I was on the spectrum years later, I remember thinking, ‘I know what happens to people like me’, and decided to stay silent.

I also didn’t want to give my already-overwhelmed parents another challenge to face. So, I learned to mask my autism like a pro; I watched how other kids interacted, mimicked their mannerisms, and studied the topics they were interested in, desperate to fit in.

I gritted my teeth and endured my sensory challenges, dismissed my fatigue and terror at the confusing rules of the social world around me, and hid my turmoil and profound loneliness.

I managed to ‘pass’ as neurotypical, but I never really fit in. My ‘friends’ often delighted in leaving me out or bullying me for being ‘weird’. I found a way to survive, but deep down, I knew I was wearing a persona that never fit.

My breaking point: Why I finally sought an autism diagnosis

I don’t know how I managed to ignore my autism for so many years. I kept busy, throwing myself into my career and my first, and only, real romantic relationship (the indirect communication and mind games of traditional dating still make no sense to me).

I was also trying to cope with debilitating body image distress, low self-esteem, and the tribulations of being a young woman in a patriarchal society.

I experienced autistic meltdowns, meaning I couldn’t regulate my emotional stress response. But since I didn’t have the language to explain this to anyone or ask for support, I was labeled as manipulative, immature, or ‘crazy’ – and threatened with institutionalisation.

I could manage success in my career, but only for one to two years before suffering burnout that forced me to resign and spend weeks in bed living off my savings. I was full of shame; I thought I was lazy, undisciplined, or ‘broken’ by my complex childhood trauma.

It wasn’t until the global pandemic that I had the time and space to explore why I struggled so much with seemingly ‘normal’ functions of adult life.

One of my reasons was that I desperately wanted validation from a trained psychiatric professional, as one of my autistic features is a deep need for certainty and clarity. I had been masking and coping with my challenges for so long that it was tempting to gaslight myself into thinking I was just being dramatic.

I wanted the formal language to explain my internal experience and ask for the support I needed despite my shame and internalised ableism.

I also knew that I would need a formal diagnosis if I ever wanted to access support funding, given that my disability had already impacted my ability to retain employment and limited my earning potential.

My diagnosis process was relatively smooth, although long, complex, and draining, but I know I am one of the fortunate ones.

There are also barriers and valid reasons why someone might not seek a formal diagnosis, and this doesn’t mean their self-identification as autistic is less valid.

No two individuals are the same, even if they have identical diagnoses. My experience is unique to me and should never be extrapolated or applied to anyone else.

I was immensely privileged to have had savings and social support as I navigated the diagnostic process. Even so, the journey to getting diagnosed was expensive, financially and energetically, and brought up significant past trauma and suppressed memories.

After getting a GP referral and finding the right clinician using recommendations through Facebook groups, I had several sessions with my assigned psychiatrist.

She evaluated my behaviour, took a detailed medical and developmental history from me, my mother, my sister, and my partner, and assessed my neurotype across a wide range of diagnostic criteria.

Some of the main autistic traits that I discovered were rigidity around routines, sensory hypersensitivity to noise and touch, an ability to filter out irrelevant stimuli, and alexithymia, or difficulty in identifying and expressing my emotions.

I’m very particular regarding clothing; restrictively tight garments or itchy materials are physically painful. I also experience intense autistic burnout, where I need to sleep up to ten hours a night and still feel exhausted for days or weeks at a time.

I’m a literal thinker and find it hard to decipher indirect social cues. I’ve often been accused of being rude or flirtatious when I was only trying to be polite or friendly.

I also often have no idea if someone is making fun of me, hitting on me, or genuinely being kind. This uncertainty has impacted my ability to make friends and form romantic relationships, increasing the isolation that I’ve struggled with for most of my life.

Social challenges are the most complex and distressing for me in many ways. I experience rejection sensitivity dysphoria, which is an intense emotional response to perceived rejection or criticism, causing extreme feelings of shame, anxiety, or worthlessness.

On some level, I’m always expecting people (even long-term friends) to one day laugh in my face and tell me they were only pretending to like me.

My deep fear of rejection is a daily struggle, and I have to fight the urge to withdraw from relationships prematurely to ‘save myself’ from shame and ridicule.

This, of course, becomes a self-fulfilling prophecy that I’m someone who can’t maintain meaningful connections – a challenge that contributes to the higher rates of loneliness in autistic adults than in the general population. Connecting with other autistic adults who understand my experience has been an essential part of rebuilding my self-esteem and combatting loneliness.

Learning that these challenges had a ‘legitimate’ underlying cause, and that I wasn’t inherently broken or less worthy of love, were the first steps in being able to create a life for myself that felt socially and emotionally fulfilling.

Learning to live as my authentic, autistic self 

I stayed quiet about my diagnosis for a long time. I was terrified people would tease or doubt me.

Fortunately, my loved ones’ reactions were mostly supportive and affirming. They showed curiosity and wanted to know how to make me feel seen and heard.

Part of my journey to self-acceptance involves trying to untangle what parts of my personality are ‘me’ and which parts are conditioned trauma responses formed while desperately trying not to stand out for the ‘wrong reasons’.

I’m trying to forgive myself for my past missteps and giving myself space to figure out what a meaningful life looks like for me as an autistic woman. These traits are intrinsic parts of me that I can’t and wouldn’t want to ‘cure’.

Embracing my autistic identity is not always easy; it reawaked past grief and made me wonder how my life might have been if I’d gotten my diagnosis earlier.

Would I have pursued my love of performing earlier if my moral perfectionism hadn’t made me feel ashamed that it wasn’t a selfless or altruistic enough career path?

Would I have been able to find more appropriate support for my disordered eating and body image issues? Would I have explored my sexual identity earlier if I wasn’t desperate for the safety of male validation and being in a straight-presenting relationship?

On the other hand, my autism has made me a gentle, curious, and empathetic person who strives to seek out and hold space for people who feel alone, partly because of how ostracised I have felt for so many years.

It’s difficult to accept that I’ll never have the answers to these questions and to give myself compassion while figuring out who I am and what I want from my life.

I don’t always get it right, but lately, I’ve felt something shift: a softening of my self-criticism, the ability to let myself rest, make mistakes, and lean on others.

Sometimes, when I feel disheartened, I pause and reflect on how far I’ve come. I imagine myself taking care of the scared little girl who felt so misunderstood and out of place. I tell her she doesn’t have to figure it out alone.

Even on my darkest day, I’m grateful that I’ve found the courage to live with pride and joy despite growing up in a world that told me I wasn’t enough. I hope that future generations of autistic women and girls receive the support they need to do the same.