[trigger warning: this blog references suicide & self harm]
On Autism Awareness Month, guest blogger Mair writes about her diagnosis of autism, how she embraces her differences and her hopes for what research can achieve.
When I was about 14 years old, I started to feel unusually anxious and my mood kept dropping.
I remember sitting in chemistry class and starting to feel rising anxiety, then looking around and seeing that no one else felt the same. I then started to see hallucinations of a character watching me through the door of the classroom, which frightened me and tipped the rising anxiety into a full panic attack. I ran out of the class and locked myself in a cubicle in the girl’s bathrooms. I sat there confused, frightened and completely unsure of what was happening.
I was just spiralling and felt confused and scared.
I went from being a top of the class student and a successful event rider with really close friends, to almost the complete opposite. I spent a lot of time in A+E, hospitals and psychiatric units because I was so ill – to the point where I was self-harming severely and attempted suicide. Everyone around me was in complete shock over what was happening to me.
I was trying to 'power through', assuming all of this was normal. It was actually my school which realised I needed help. They referred me to CAMHS age 14, and I started to attend specialist CAMHS appointments at 15 – where my psychiatrist diagnosed me with autism.
At first, I didn’t really believe him, but when I started to read about the experiences of other autistic girls and women, it felt like I was reading about me and my life. My family, also shocked to begin with, started to look back on my childhood and it all started to fall into place. It was a steep learning curve for everyone, but slowly it started to sink in.
Once I’d been diagnosed, it was hard to get appropriate and reliable support.
My autism was mixed with symptoms of serious mental illnesses, but they didn’t fit neatly into any of the boxes. So, I’ve just tried to find ways to manage my symptoms on a day-to-day basis without worrying what disorder or illness they are caused by.
The complexity of this meant that the local CAMHS simply didn't have the resources to help me properly. I was given lots of different medications - none of which helped. Actually, research is starting to show that psychiatric drugs may not work the same way in autistic people.
I also started quite a few talking therapies, but they didn't really help either, partly because they weren't adapted for autistic people and partly because the staff turnover was too high - so I didn't see the same therapist for long enough. I received DBT (Dialectical Behaviour Therapy) aged 17 - which was the first thing that helped a lot. It helped me to develop skills to cope with my fluctuating mood and avoid hurting myself.
I'm now 22 and my illnesses are still quite a big part of my life. But I've learned a lot of tricks and skills to manage them.
The main thing I’ve learnt is to know my limits. There are days when I’m not able to do much at all, and I let myself rest rather than berate myself. There are days when I can do more, and I take advantage of this and enjoy working. I also have a crisis kit, which I get out whenever I can feel myself getting overwhelmed. It includes happy pictures, lists of good music and films, little quote cards written by myself and friends, some nice bath salts…and more!
Overall, being diagnosed with autism has been positive. I can now make adaptions where I need them and focus on and embrace my differences. I guess I'm learning every day. Some days I live with mental illness, some days I survive mental illness.
Contrary to what many non-autistic people believe, it’s not being autistic that is the problem. It’s living in a world that is not accepting or accessible to me.
Being autistic means I am able to focus intensely on a particular topic of interest to the point I reach an expert level of knowledge in the field. I have a deep sense of justice and will passionately fight to see injustice resolved. I am honest, sometimes brutally so. In a world that is often smoke, mirrors and hidden intentions, honesty is a super power.
I can see the world in a different way to the majority of people - I experience it deeply, due to my hypersensitivity to sensory stimulus. This can sometimes mean I see beautiful things which others would walk right past. I cherish these differences. They are part of who I am and I wouldn’t change anything.
To me, research means hope.
I hope to see a future where other children and young people don't go through what I've gone through, and the only way that will happen is through research.
Many autistic people experience mental illnesses like depression, anxiety and OCD among other things. Yet research shows that nearly 80% of people don’t receive appropriate help or support.
On a practical level, research can help to find the causes of mental health conditions in autistic people, develop preventative measures, develop new treatments and adapt current treatments. How can we adapt therapies and treatments for mental illness to be effective in autistic children and adults? This is the biggest question I’d like to be answered through research.
The more research that gets done, the more answers we can find and the better we can support people. Ultimately, this means better lives for people like me.
Last updated: 6 June 2019