How it feels to be diagnosed with autism in your twenties

As told to Jennifer Savin
·10-min read
Photo credit: Jessica Lockett | Getty Images
Photo credit: Jessica Lockett | Getty Images

From Cosmopolitan

My hand reached for the remote control and I hit the pause button. I’d only been watching the documentary for a few minutes, but it felt as though a lightbulb had appeared above my head. It was during that moment, at the age of 25, sat on the sofa at my parents’ house, I first realised I could be autistic.

Three months later (after opting to pay for a private diagnosis) and a lot of extensive research (during which I oscillated between thinking ‘This is 100% me’ and ‘Surely not, how could I have made it this far without a diagnosis?’), a clinical psychologist confirmed it. I have autism, a lifelong neurological condition that essentially means my brain is wired differently. It impacts the way I process the world, can cause me to feel extremely anxious and means I sometimes find interacting with people confusing and difficult.

Leading up to that moment, I'd expected it to feel monumental – but what I actually experienced was an immense sense of relief. A calmness and clarity. Finally, I could begin to unpick and understand all the years I’d spent feeling confused, living in the dark.

Up until that point, like most people, my knowledge of autism was limited. I thought being autistic meant you were a maths genius, and unemotional, logical and unempathetic. It’s a condition often associated with young, white men – not grown women, or people of colour – but since my diagnosis, I’ve come to see that's far from true. Autistic people are as varied and individual as everyone else. While we will all have traits in common, even those shared traits may be expressed differently.

Growing up, I felt like everybody else had a ‘How To Get Through Life’ manual – bar me. My parents say I was a fussy baby and as a child, I’d spit food out or really labour over each bite. Making friends was tough too and I preferred being alone. When I did interact with other kids, I tended to either take the lead and be overly dominating, or (more commonly) I'd be taken under the wing of a more confident child and went along with whatever they wanted. They dictated what we played and what we did, I copied. If a friend asked me for game ideas, I'd be clueless. It didn’t feel natural.

That sort of behaviour is all part of what’s known as ‘masking’ my autism. Because I found life so confusing and I was so sensitive to what other people thought of me, I used a chameleon-like approach to get by. I absorbed the way people spoke and how they acted, then mimicked it. But living your life like that isn’t sustainable – and by the time I reached my twenties, my mental health had taken a hit because of it.

I was diagnosed with anxiety and depression. I struggled with my university studies and cried every day at work. Regular panic attacks then developed into full-blown phobias and my anxiety was so bad I physically vomited. My whole life just felt unmanageable. I took medication and saw several different therapists over several years, most of whom didn’t seem to understand how, or why, I was struggling.

In a more general sense, autism makes everyday things that other people barely give a second thought to – from a trip to the shops, to work – a challenge. In supermarkets, I’m hit by bright lights, tills clanging, talking and trollies, different air temperatures around different aisles. It can feel totally overwhelming and for almost a quarter of a century, I had no idea why.

Meeting new people feels like a similar barrage of information. I’m trying to hear and process what they’re saying, interpret their body language and tone of voice, mimic their facial expressions, and most of all I’m trying to be “normal”. My brain has to go through so many steps consciously that other people don’t even think about, like I’m driving a manual car when everyone else drives an automatic.

I worked in a corporate office before my autism diagnosis too, and I found it really difficult. Navigating new kinds of relationships was draining – I didn’t know whether I was just a colleague or a friend, or how to make the transition between the two. I remember going home and telling parents, “It feels as though people are speaking in an entirely different language.” During one conversation, someone would tell me something personal about themselves and I’d think, “Okay, we’re friends,” and then the next moment they’d be speaking more professionally. It was so exhausting that if I was invited to lunch with them, I’d instead try to sneak off on my own to a café to decompress from the morning.

Dating also left me panic-stricken, although I didn’t realise it at the time. Often with autism it’s hard to recognise your own emotions and when I look back now it seems absurd that I didn’t know I was anxious. Despite maybe appearing okay outwardly, I was an absolute wreck inside. I’d be sat in a restaurant, unable to hear what my date was saying over my pounding heart and under the table would be gripping my knees, pretending I didn’t have tunnel vision, with no idea how else to get through the evening. I just thought that’s how everyone felt while making small talk with a stranger.

The day a professional confirmed I have autism really helped me to identify a lot of those behaviours and to reassess them. It felt like a line had been drawn and I could finally get on with the rest of my life, without wondering why it constantly felt like I was a square peg trying to fit into a round hole. I spent time thinking about how I wanted to socialise going forward – without masking around others, if possible – and whether or not I should tell people I’m autistic.

My family had been aware of my assessment from day one, so discussing the results with them, and a few close friends, was relatively easy. Many said it made sense, which was half a relief for me, and half frustrating. Why hadn’t anybody realised sooner? Perhaps it’s because I’d always done well at school – I loved learning and the structure of it all, so the environment suited me well. A lot of my struggles were internal too. I had no reason to think that my experience was different to anyone else’s, so I didn’t voice any of it.

Telling others outside of that circle was a more nerve-wracking experience. I worried they’d see me differently or want to end our friendship. After all, I’d spent my life, unknowingly, not being true to myself. Perhaps they’d feel they didn’t really know me? Luckily, the majority took it in their stride and were like, “Oh right! Where shall we go for dinner?” Others were shocked and even a bit disbelieving, with many commenting that I don’t “seem autistic”. But just because you can’t see someone struggling on the outside, it doesn’t mean they’re not on the inside.

Strangers, usually neurotypicals and usually online, are harder to deal with. There are people out there advocating for a “cure” for autism, or who sympathise with parents who inflict harm on their autistic child (which sadly happens more often than you’d think). Those are symptoms of ableism in a society which believes that disability is inherently a bad thing and should be eradicated. Logging onto social media and being faced with those kinds of opinions can be hard to deal with. But I can rise above it.

Social media also allows me to connect with other autistic people and for the first time, I’ve (knowingly) been able to interact and make friends with them, which has been a really therapeutic experience. Being a part of an Instagram community has also taught me some tricks that make a big difference to my day-to-day life. Things like wearing noise-cancelling headphones in the supermarket, or playing ambient rain sounds while standing at a crowded bus stop. Talking with others has helped me when it comes to seeing events from my past and present in a new light too. Thanks to this autistic community, I feel less alone and have been able to explore aspects of my autism that I hadn’t before.

Posting my journey online is also a more sustainable way for me to socially interact with people; communicating in writing is much more comfortable for me than meeting in person and being able to log in and out whenever I want, or need, is great.

When it comes to bad days and self-care, I like to wear super comfortable, soft clothes, watch a familiar TV show or listen to a familiar podcast, and eat something comforting (cheese on toast is my go-to). Often my senses need a break too, so I’ll dim the lights and turn down the volume. I tend to retreat when I’m having a down day, and often I need that. But I’m learning that reaching out can be good, too.

Since my diagnosis, I’ve embraced being my full self around others and I’m now engaged. I met my partner, James, who is also a huge support, through a friend. He's also autistic (I was so excited when I heard) and we understand each other’s way of thinking. He totally accepts me.

Historically, autism been defined by certain ‘deficits’ but we also have our own strengths. While socialising may be difficult, and some of us have rigid routines, we can also be really good at thinking outside the box. We’re open-minded and non-judgemental, with a great memory for facts and details. To me, being autistic is a different – but no less valuable – way of experiencing the world.

Why are more women being diagnosed with autism later in life?

Dr Sarah Lister Brook, Clinical Director at the National Autistic Society says that while in the past, research suggested a ratio of up to 16:1 autistic males to female, newer research is beginning to suggest far more equal numbers. "We’ve seen a steady increase in referrals of women and girls, but we know professionals still don’t always understand the different ways autism can manifest, particularly in females, so many still go through life without a diagnosis or an understanding as to why they feel 'different'."

Like Emma, Dr Lister Brook is keen to point out that every autistic person is different, but adds that as a rule, girls are often better at developing ways to 'mask' traditional signs of autism. "This means it’s harder to get a diagnosis of autism." She adds that this can be exhausting and lead to incredible levels of stress: many women and girls go on to develop secondary problems such as anxiety, eating disorders or depression.

"A diagnosis can help explain that feeling of difference, which in itself can take away some of that stress, as well as allowing people to find the right support," Dr Lister Brook explains. As a first step, she advises reaching out to the National Autistic Society, which has a helpline and can direct you to local services.

For more information on autism visit the National Autistic Society

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