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“I've learned that I am not just my diagnosis”

Guest blogger Claudia was diagnosed with autism when she was 19, despite struggling with the condition since the age of 4. She shares her story.

[trigger warning: this blog references suicide and self-harm]

I was diagnosed with autism when I was 19, and have also experienced Asperger’s syndrome, anxiety, depression and OCD. Although my diagnosis of autism came quite late in my teenage years, I’ve struggled with the condition since I was about four.

I always knew I was different.

When I was younger, I didn’t really hang out with anyone and did my own thing. That was okay until I started school and people looked at this negatively. I excluded myself from a lot of things – because it felt safer to be by myself than it was to interact with other people.

By the time I got to high school, I knew that there was something going on. I kept saying to people “Why am I different? Why is this happening to me?” but my feelings were dismissed. I suppose because it coincided with those teenage years where we go through so many changes anyway. Being non-binary and asexual added to this feeling of being really alone.

I didn’t do well in school - I had average grades. But the one subject I loved was music.

I remember my music teacher saying to me that he’d never seen anyone write out music the way I did – he encouraged me to use it to explore my feelings. But even though music was such an important creative outlet for me, my school told me I wasn’t good enough to pursue it.

I was angry because I couldn't understand why all of these things were happening to me. I maintained a ‘normal’ image on the outside, but inside I was slowly deteriorating.

When I was 14 I realised I needed help. I tried counselors and therapists and, despite my family being really supportive, they didn't understand how to help me. I didn’t know how to stop the pain and began to self-harm – to the point where I tried to take my own life two years later. It was a really difficult time. My friends and family hadn’t realised how bad it had become, and because of my age – being between young person and adult mental health services - I had to fight to get the right help.

When I was diagnosed with autism, it felt like I’d been validated.

I felt like saying to all the people who had dismissed me, “Do you believe me now?” It was so freeing to be able to say my hair is brown, I wear glasses, but I’m also autistic – it just became another fact about who I am.

I've always been close to my family and friends, and the diagnosis helped them too. It meant they knew how to not only support me, but also how to support themselves, as it had been difficult for them to see me decline.  

I had a realisation that I could take on this new label and do with it what I wanted.

There’s a great quote from a wheelchair Paralympian who said that, before his accident, he could do a million things and now he can do 900,000 things. But instead of focusing on the 100,000 things he can’t do anymore, he focusses on the 900,000.

I can still do things – but in a different way. Autism is a spectrum disorder, so everyone experiences it differently. University was challenging, as I was constantly thinking, “Do I have the time and energy to do this task?” I’ve learned now how to manage the times when I’m struggling and understand that I need to do things in my own time, the best way I can. As a creative person, hobbies like music and theatre have continued to help and inspire me.

It’s great that people are being open about mental health, but we need to explore it more deeply. That’s why I support MQ.

There are so many things that mental health research can answer. For example, does an hour-long appointment with a GP or a therapist give an accurate measure of how someone experiences mental illness? Instead of talking in a setting that’s almost like a false reality, could we use things like GoPros to help explain our day-to-day experiences to professionals? New ideas like these could help make sure people get the support they really need.

I've attended a lot of conferences to try and understand the core issues affecting young people’s mental health and the research looking into it. I feel strongly that we should fund more early career researchers – the ones I’ve met are genuinely passionate about what they’re doing and tuned in to the needs of young people today. 

But people with direct experience of mental illness and autism need to be more involved in research.

We deserve the opportunity to understand the developments that are being made and find new tools to help us. Everyone should have the right to access mental health research, attend conferences and bridge that gap.

Looking forward, I hope to become a community artist and am soon starting training to become a teacher, where I’ll be teaching theatre production design to college kids. I want to use my own experience to show people that art and performance can help them express themselves and understand more about their own mental health. 

If I’ve learned one thing, it’s to not be afraid of saying when you think something's wrong - because it probably is.  

I’d also tell people who are struggling with autism that you are not your diagnosis. Being autistic is a string to your bow, not something that should hold you down. You can let it affect you, or you can choose to grow and learn from it. Most importantly, you can still do life.

To read more from Claudia, visit her blog

Last updated: 23 May 2019

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