Simple Susan, mad, odd, bizarre. Names I have been called over the last 53 years of my life.
Born in a small Scottish village at a time where medicine and diagnosis was in its infancy and hadn’t made the great advancements that we see today, my parents were told not to expect much from me as they were led to believe I had been brain damaged at birth.
But you see I’m not mad or simple or any of the other names that I have been called over the years. I have Asperger’s and it doesn’t define me, it gives a greater understanding of who I am.
In brief, Asperger’s is a developmental disorder that falls within the autistic spectrum. It’s lifelong and experts believe that about 1 in 200 people have a form of Asperger’s in varying levels. People with Asperger’s normally have an above average intelligence. The difficulties that people with Asperger’s have lies within social interaction and communication as well as having sensory, motor and organizational difficulties. Many people with Asperger’s experience isolation and a lack of understanding which affects their everyday lives, which often results in frustration, anger, depression and a low self-esteem.
For over 50 years I struggled not understanding what was wrong, feeling that I had been unfairly labeled but at 51 when I was diagnosed with Asperger’s it was a huge moment of relief, understanding and acceptance.
For just over a year I kept my diagnosis private. After all, how could I discuss a diagnosis that I was just learning about and understanding why in situations I react the way I do? After a year of learning and gaining knowledge I finally felt comfortable to speak of my diagnosis and allow people to share an important part of my life.
It was carefully managed. It had to be. This was so important to me and also to all those with Asperger’s that I needed to ensure that it was my words, my story and not twisted or ridiculed by those less understanding.
It was incredibly important to convey this very personal diagnosis in exactly the right way. I did not want people getting carried away and making judgments or headlines spinning out of control making a mockery. So I decided that the only way to show what life with Asperger’s is like was to show people and I was lucky enough to be afforded the opportunity to do just that with a documentary. I wanted to stop being an outsider and show people what my life was like, bring them in to my world and hopefully give people a greater understanding of what Asperger’s is and the day to day struggles that will always exist and the reactions to situations.
My show follows the journey in the lead up to my first live shows that I performed in Scotland in the summer of 2013. A dream of mine, I had been desperate to perform on my very own tour but it comes with pressures and uncertainties and for someone with Asperger’s this magnifies the condition.
It was and still is a relief. Of course there are still the ignorant who regardless will name call because they don’t understand or won’t take the time to understand but for me and the people around me who I care about it has given us all a better understanding of who I am and why I do what I do and why my reactions to situations are different to others.
It shouldn’t be a taboo subject. Quite the opposite. We need to become more perceptive and embrace the difference and gain a greater knowledge of what Autism and Asperger’s are and why it occurs.
I have not written this with a view to evoke pity. Quite the opposite. Don’t pity me. Understand me.
I have a blessed life. The past five years have afforded me experiences I could never have imagined and met some of the most fantastic people. I have been unbelievably fortunate and every day I am so grateful that this is what my life has become. No one, least of all me, can quite believe how my life has transformed for the better. I completed the Scottish tour successfully and am currently touring England performing 19 dates around the country. Life is going from strength to strength and nothing is holding me back!
Which is why it’s so incredibly important that the label of Asperger’s doesn’t define me—it gives a greater understanding of who I am. In fact it gives society a greater understanding of all of us diagnosed and living life with Asperger’s.
The exclusive U.S. premiere of Susan Boyle: Her Secret Struggle will air on Wednesday, April 9 at 10 p.m. ET on Ovation. Visit ovationtv.com for more information.