Growing Up Undiagnosed

I was diagnosed as autistic at age 21, which was eleven years ago. I had spent my entire life feeling different from everyone else, not quite fitting in, but not knowing why.

I was born in Edinburgh in the middle of January 1988. As a toddler, I would sit and line up my cuddly toys, or play with jigsaws for hours. But I met all the usual milestones, so it wasn’t seen as particularly unusual.

At the age of 3 ½ I started nursery. I was an extremely shy child which is why my mum only let me go to nursery for my pre-school year. My mum and the nursery staff were pretty surprised when they discovered I’d taught myself how to read. Although they didn’t realise I was hyperlexic – I didn’t actually understand a lot of what I was reading.

By the time I was 7 years old, I was starting to struggle with other things. Completing work was a major problem. I would try and make my writing as neat as possible and would write very slowly so I didn’t make any mistakes. This meant that although I could do the work my perfectionism made me one of the slowest workers in the class.

I became a target for several girls in my class, who bullied me for the way I dressed and teased me about having to start wearing glasses. I was taunted, called names, and my things were taken off me and used in ‘piggy in the middle’ games. I dreaded break times and lunch and resorted to hiding away from everyone else.

Throughout childhood, I would spend all day in my room reading if my parents had let me. My mum used to complain that I read the same books over and over again, but I liked reading them again, knowing that the ending would be the same. I find it reassuring. It’s the same with TV shows. I will watch the same episode or even scene over and over again because I like knowing what’s coming next and how it ends.

It’s unsurprising nobody realised I was autistic in the 1990s. As well as autism being poorly understood – especially in girls – I was one of those kids that just kind of blends into the crowd. I remember being jealous of my primary school friend because she got learning support – someone had actually noticed her.

Moving to secondary school was a much bigger ordeal that I had expected. It was exciting at first, but soon became a nightmare. There were so many changes to try and cope with… new buildings, new classmates, new teachers, new subjects, and of course new bullies.

I spent the first two years attempting to keep a low profile. Sometimes I would go and hide in the toilets and cry. I couldn’t seem to do anything right. I was relentlessly mocked, teased and ridiculed. I didn’t understand why.

My teachers, of course, were oblivious. They thought I was the perfect pupil – hardworking and quiet. My old school reports paint a completely different picture to what I was experiencing… “I like the use of the work ‘unassuming’ in these reports. No fuss, no great expectation of praise, she just smiles and gets on with the given tasks.”

Most of my class avoided me – going as far as purposely walking to the opposite end of the corridor to use the other staircase and running out of class so I would be last into the next one.

PE was particularly torturous, since the teacher insisted on always playing team sports that I was awful at. It didn’t help that I was not only completely uncoordinated, but since most of the class hated me they refused to pass the ball to me, which meant I got told off for not ‘joining in’.

It got so bad, that eventually I talked my parents into sending me to a private school. I didn’t have to do any exams because they had a spare place in my year group. I moved in the May of my 2nd year.

Not one of my classmates said goodbye.

My next secondary school figured out I needed some sort of support, but they presumed (incorrectly) that I might be dyslexic, and therefore I was just sent to extra lunchtime English lessons and given extra time for my exams. If they’d looked a little closer they might have noticed the little indicators that I was in fact autistic. I struggled to make friends, spent the majority of my lunchtimes hiding in the refuge of the library, couldn’t cope with group work and panicked at the very thought of speaking out loud in class. Instead I was told off for ‘not being assertive enough’ or being ‘too shy’.

After school, I went to university to study primary teaching. It seems like an utterly bizarre choice to me, looking back now – but somehow nobody seemed to realise how unsuitable it was for me aged 17. The course was intense. I started off not too badly, but as the responsibilities and pressures mounted, things began to fall apart.

I loved working with the kids, but struggled to communicate with the other adults. Since I didn’t know I was autistic, I had no idea they were silently judging me. I was deemed not assertive enough, I didn’t smile enough, I didn’t appear to be enthusiastic. I ended up failing placements over and over again. I’d work really hard to fix one thing and they’d just tell me something else was wrong. I was told off for not understanding vague feedback or instructions that didn’t make any sense to me.

It was soul destroying.

It’s hardly any wonder that my mental health plummeted. I was a failure. That was how I defined myself. At age 20.

I was misdiagnosed with Social Anxiety Disorder, and spent ten weeks as a day patient at the Priory Hospital. Ten weeks, five days a week, of group therapy. It was literal torture. They saw my autistic behaviours as ‘attention seeking’. I became almost mute from anxiety. I started self-harming. I couldn’t cope. And yet I didn’t leave. Why? Because I was being told “you have to do this to get better” or “you just have to try harder”.

After the ten weeks, they told me I had ‘failed’ therapy and I was discharged. Even more convinced I was a failure. Barely able to function.

Thankfully at this point, someone actually noticed me – the real me. I’d started seeing a counsellor at university. She didn’t mind that I could barely physically speak to her on a good day. We emailed each other to communicate, and for the first time I had someone who properly listened to me. Who didn’t dismiss me as ‘just quiet’ or ‘shy’. She was the first person to raise the possibility I might be autistic.

The thought had crossed my mind briefly before… but I’d dismissed it. It was supposed to be rare in girls, wasn’t it? I hadn’t sat rocking in the corner as a child, I didn’t go around flapping my hands or making odd noises like some of the autistic kids I had worked with.

It wasn’t until I did some proper research and discovered those stereotypes either weren’t true or didn’t represent the full spectrum that I really started considering it. Me, autistic?

After waiting several months and then being assessed by the local adult autism team, it turned out yes – I am autistic!

I’d love to say being diagnosed instantly solved all my problems, but it took a few years for my mental health to improve, and for me to actually fully accept the diagnosis. If you’ve spent your entire life believing you’re neurotypical (non-autistic) then it’s quite a big deal to find out you aren’t!

Now I can celebrate my special interests, better understand my sensory issues and help raise understanding of autism by helping with training and through my artwork.

It’s eleven years since I was diagnosed and I couldn’t be happier. I have wonderful friends – many of whom are also autistic, I have an amazing partner (who is autistic), my family now understand why am the way I am, and most importantly so do I. Being autistic is part of my identity, who I am. The only regret I have is that I didn’t find out sooner.

By Ruth

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