Georgina was diagnosed with Asperger’s syndrome first at the age of 16 and again at the age of 18. Here, she recounts her journey and some of the ways she uses to feel calmer and to connect with other people.

Looking back, I showed some autistic traits from a very young age. For example, seeing other children and freezing. When I started primary school (aged four), I could not sit in the lunch hall because it was too noisy and busy (I was also a very slow eater, which didn’t help!). I used to eat my lunch in my classroom with the teacher. During my first ever parents’ evening, my class teacher asked my parents if I could speak. They were shocked by this because I spoke all the time at home, but I never spoke a word during my first year at primary school.

I must have been about seven or eight when I first heard the word ‘autism’. I think we were watching the TV and they were talking about autism. I asked my parents what autism was and they explained it to me. I remember thinking, ‘Yeah, that makes sense!’

When I was at secondary school, I really struggled during my first year. I would spend break times and lunch times sitting alone and be paranoid that people were looking at me and judging me or saying unkind things. I didn’t know this at the time, but my mum actually got in touch with the parent of a child I knew from primary school and asked if I could sit with them during the breaks.

Also, during my first year at secondary school I was diagnosed with dyslexia. To help me catch up academically I would go to the learning support department before school and during breaks. Whilst this helped me academically, it also helped me to easily escape what I found most challenging – talking to people!

In year 9, we were learning about articles in English and

there was an article on autism and Asperger’s. I found it fascinating because it all made sense and I knew how these people in the article were feeling.

When I got home, I was asking my parents loads of questions about autism and whether I might have it. I suffered with low self-confidence and low self-esteem but this was put down to my dyslexia diagnosis.

It wasn’t until my GCSE year (year 11) when I was 15 that things came to a head. I couldn’t cope with the stress from all the different teachers who wanted me to do well in their subjects. There were exams to revise for, coursework deadlines to meet and numerous catch-up sessions because I wasn’t achieving my target grades. I didn’t want to let my teachers down or my parents, so I put very high expectations on myself.

A dark place

I was referred to CAMHS because I was in a dark place. I was seen by a psychiatrist and diagnosed with ‘autism (specifically Asperger’s syndrome), anxiety (social and separation) and low self-esteem’ at age 16. I had a course of cognitive behavioural therapy (CBT) to help me manage my anxiety. My school helped me to catch up academically but, by the time I was diagnosed, I’d nearly finished anyway.

However, when I went to university (in a different county), I requested some help so I could manage my anxiety better and get off to a good start at university. I was referred to the autism and ADHD service, but they didn’t accept my previous diagnosis because I’d never had any of the formal tests. However, I had enough evidence to get a Disabled Students’ Allowance and reasonable adjustments, including a note taker in lectures, a support worker, a laptop and some specialist computer software (Sonocent Audio Notetaker, Inspiration and Read & Write). I was seen by many occupational therapists, had lots of testing done and was diagnosed with autism again aged 18. This did mean I could access the autism and ADHD service, which was beneficial to me during my time at university. I still had to work very hard on my degree but, with these adjustments, I could keep up with the other people on my course.

Like a weight being lifted

The feeling I had when I first heard the psychiatrist say ‘autism’ is very hard to describe – and I’ve never felt the feeling since. It was like an enormous weight being lifted. I knew I was autistic for so long before the diagnosis, it was a relief! I finally started to understand and accept myself.

The day of my diagnosis, my life changed for the better!

A few doors closed (I wanted to join the RAF and you can’t with an ASD/C diagnosis) but many, many more opened!

I think the biggest misconception about Asperger’s is that people with Asperger’s are really clever! I am a musician but I’ve had to work just as hard, if not harder, than everyone else. I am not Mozart, I am not a genius, I am a musician.

Getting out and about

I don’t let my disability stop me from going anywhere. I have trained myself to manage situations that I find uncomfortable. Asperger’s doesn’t affect my life because it is part of me. However, the way society sees and treats people with autism does affect me. I cannot stand non-disabled people talking about what it is like to be disabled when they have no idea – they haven’t lived that life!

Rewards have always worked well for me. If I didn’t want to go somewhere (the shops, for example) I’d promise myself a reward when I got back – only something small like a chocolate bar or similar. Or if there was a day of lectures I was dreading – if I went to them all, then I would get a takeaway on the way home. That probably sounds strange but it worked for me.

My parents have always been there for me. Even though they might not fully understand what it feels like to be me, they usually say the right thing!

Managing stress and anxiety

I listen to calming music or audio books – usually ones I’ve heard hundreds of times before. That way, it doesn’t require you to think or concentrate – you know what is coming up. If it’s an audio book, then I count certain words – like how many times the reader said the main character’s name, for example. If any other thoughts creep in, then I bat them away with an imaginary tennis bat inside my head!

It has been quite important for me to connect with other young people with Asperger’s. When I was first diagnosed, I attended a ‘social group’ which was for people with anxiety and/or autism – that was really awkward and I don’t think it helped at all. However,

if you talk about your diagnosis, you’ll probably be surprised that a lot of people know a lot about autism.

Some of your peers might even have a diagnosis themselves – I think connections like that are really important. 

You can be yourself

If you’ve just had a diagnosis, my advice to you is: your new life begins here! You can be yourself now – you don’t have to pretend to be someone you aren’t anymore. Don’t be afraid to let people see your autistic traits – masking them can become a very unhealthy habit that is hard to break. Tell people about your diagnosis and they might start to understand you better – if they don’t, then tell them what autism is and how it affects you.