Labels. Sometimes useful; sometimes not. My opinion – good (when used correctly!). Labels in medicine can hopefully lead someone to find a specific treatment plan to follow, can allow someone to find support from others with similar problems, and most importantly, may help someone understand his or her life a bit better.
A few years ago I went through an intense assessment with the Maudsley Hospital in South London. After filling in umpteen questionnaires and meeting various professionals, I received the diagnosis of Pervasive Developmental Disorder – Not Otherwise Specified – a long name for what is basically known as Asperger’s Syndrome. Asperger’s is a lifelong condition which affects almost every aspect of a person’s daily life. It comes under the diagnostic umbrella of Autistic Spectrum Disorders (ASD).
Autism is a spectrum condition with varying levels of severity. Someone with autism will have a different way of thinking, communicating and managing than someone without. Autism is not an illness, it is a developmental condition one is born with, there is therefore no cure. One cannot recover or get better, but one can learn to manage and understand the difficulties that come with it. Many people with autism have heightened sensory perception leading to sensitivity to noise, light, touch and smell. Small things such as noise cancelling headphones and tinted glasses or prescription sunglasses are some of the things that may help.
The symbol for autism awareness is a puzzle piece, and it’s something I personally identify with. The diagnosis I was given a few years back explained my whole life and more. It was the remaining piece of the puzzle.
For many years prior to this diagnosis, I struggled to understand what was different about me. I had been pushed from pillar to post, unable to find the correct treatment to help. I was depressed, but functioning, anxious to the extent of avoiding everything. I had some really good treatments over time and some pretty bad ones. Diagnoses were thrown at me left, right and centre, but somehow none of them ever really seemed to fit what was going on for me.
I felt like my whole life was one big ball of confusion; that I was using all my energy both physically and mentally to keep up with the people around me. But I just couldn’t. I continued to feel like I was failing each step of the way and the masking that I had tried to perfect throughout my early years was just not strong enough to keep me above water once I reached my teenage years.
After watching a TV programme on autism a few years back, I googled ‘autism in girls’ and after looking through some of the articles and blogs that came up, I felt something I had never felt before; an understanding of myself.
Once I learnt more about autism, and had the label confirmed, I started to feel more insightful towards both myself and to others. It has lead to me feeling more compassionate towards my past. I could see why even the smallest changes were hard for me when I was growing up. Things like physical body changes, moving schools and changes at home were all so anxiety provoking for me.
To this day I remember many of the things I did to try and stop these changes happening. But inevitably I couldn’t. The anxiety of everything quickly lead to a deep depression which by the age of 15 had taken over every aspect of my life. I didn’t have teenage years; I had an almost catatonic depression. I stopped eating, stopped talking, stopped doing anything, in the desperate attempt to keep things as they were; how they had always been. Change was too much to handle and by curling up back into myself and not involving myself with the outside world, I hoped I could stay in the cocoon forever.
I wish I knew back then what I know now – that changes will be hard but will eventually become easier. That although I may feel like I am in a foreign country, one day I will learn to speak the language a bit better. I may find it hard to talk to people, but I will find a voice in writing. These are still so many things I find hard to accept and I still get angry with myself when I do things wrong.
My autism still affects me daily and it has a huge impact on my mental health. I struggle to communicate a lot of the time, find myself extremely distressed when there is a sensory overload and often feel misunderstood. The added issue is the lack of knowledge and understanding of autism in girls. I hope that by writing this I can make this open for discussion. As always, awareness is important but understanding is imperative.
I just hope that one day I will be able to appreciate and show others to appreciate that different does not equal less. Labels are just words to assist you in shaping the care and help you may need to live as normal a life you can, they don’t need to define you or your limits.