Diagnosis at 20, Cathy’s Story

Hello, I’m Cathy, I’m 24, I’m studying a postgraduate conversion course in Computer Science.

I was diagnosed with Asperger Syndrome at 20 years old.

I’m probably in a unique position compared to most of us in Eureka, as I’ve always had some understanding of what autism means, and so have my parents. My dad self-diagnosed with Asperger Syndrome when I was around 14, after reading Daniel Tammet’s autobiography Born on a Blue Day. He recognised a lot of himself in the author, and passed this book around his side of the family. I remember reading it and writing in my diary how I was in awe of this man, who had written so eloquently about his life growing up with epilepsy, coming out as gay, and being diagnosed with Asperger Syndrome, savant syndrome, and synaesthesia. Little did I know, I’d be able to tick off a few of those myself later!

Although it used to be thought that autism was due to ‘extreme male brain’, current estimates put the ratio of females to males on the spectrum at 1:3. The average age of diagnosis for an autistic boy is four years old, but girls are mostly diagnosed much later, because it is common that they are better at ‘masking’ - making an effort to learn the social skills that are intuitive to neurotypical children - at least until puberty. Hormonal changes plus being faced with new social expectations like fitting in with fashion, dating, and friendship cliques, can make the teenage years overwhelming for autistic girls.

In my case, it came to breaking point when I went on a Camp America placement in the summer between my second and third years at undergrad. The long hours six days a week, the lack of alone time - we didn’t even have a bathroom door! - the expectation to be social until the early hours of the morning, then get up for work was all too much for me.

I felt as though I didn’t fit in. I didn’t get on with my roommate. I kept making stupid mistakes at work. I spent most of my time once my shift ended in the staff cabin on my laptop. I got sent home after six weeks of what should have been a three month stay, and although I was upset, I was also relieved.

That summer I learnt a lot about my limits, and I was researching something that might explain what I could or couldn’t do. I spoke to my parents about it, and once I was back at university in September I booked myself in for an assessment for Specific Learning Difficulty.

I was expecting to be told it was dyspraxia – a co-ordination disorder that affects social skills, time management, and motor skills. In fact, I ended up with a long list of Asperger Syndrome plus four other co-occuring SPLD conditions, including dyspraxia!

At first I was shocked, It felt so much more severe than just being clumsy, disorganised and socially awkward. Dad said he was sorry. Mum said, “I can’t believe I never noticed before it was you as well!” I thought the same thing. I had friends and family who were on the spectrum, including my best friend from home, Evan. Why hadn’t I realised before?

It’s strange looking back to when I didn’t understand such an important part of myself. Some people say we don’t need labels, but I find it comforting. It’s great to understand the reasons for my unusual feelings and behaviours. It’s a way to easily explain how I feel and fit in with others who are the same, especially since coming to Swansea where I’ve found great support from Eureka and the ASC support service. Some things are harder for me, like getting a job, making friends, concentrating on uni work, having anxiety, or dealing with sensory issues from lights or noises on bad days. There are also plus sides, I’m good at analytical and logical thinking, which helps in computer science. I have a vivid imagination, I can speed read, and I’m good at learning languages. It would be interesting to be an NT for a day or two, to see what it’s like, but I’d never want to be ‘cured.’ Although it’s a cliché to say so, it’s what makes me me, and I wouldn’t change a thing.

Cathy Groves

#uni #diagnosis #Aspergers #Autism #female