Other people’s lives always seemed more effortless, but it took my daughter’s autism diagnosis to realize why.
I had no idea I was autistic. I knew I was different and I had always been told I was too sensitive. But I don’t fit the dated Rain Man stereotype. I’m a CEO, I’m married, I have two children. Autism is often a hidden disability.
I always operated with some level of confusion. I was able to achieve a lot and I used to attribute this to the strong work ethic I inherited from my dad but now I have no doubt that he was autistic, too.
My mind is always going a million miles an hour and I don’t really have an off switch. I need to finish what I start at any cost. I also used recreational drugs to smooth me through the challenges of social communication because I couldn’t do the chit-chat.
Autism is characterised by a need for repetitive patterns and challenges with communication. With every interaction, verbal or written, I go through a mental checklist: is my response appropriate? is it relevant? is this something only I am going to find interesting? is my tone right? Trying to follow social rules and adapt to an allistic [non-autistic] world is exhausting. No one sees what is going on inside my head.
I have to work really hard at friendships. I’m good at making friends but not so good at keeping them. Misunderstandings in communication can blow up quite quickly. I have very high expectations of myself and others, and my friends tell me that that can feel like pressure. The trade-off is that I am 100% dependable, very loyal and a lot of fun when I am feeling social. Autistic people have a high divorce rate. My husband is a very calm, grounded person, which is a good balance for me.
Originally from England, I spent a year in India looking for answers then I headed south to Australia. It is no coincidence that I moved to the opposite side of the world to try to find out where I belonged, where I would be accepted. My greatest fear is not understood why I am not like other people.
Like many adult women, my diagnosis came through the diagnosis of my child. It’s an increasingly common story. My daughter had behavioural differences and sensory sensitivities from quite a young age and she was diagnosed with autism at age seven. A year ago, I set up Autism Camp Australia, a charity for autistic children and their families. I was studying autism every day, constantly talking to parents, and it became very clear I had many of the symptoms myself. Even before I had my diagnosis confirmed by a specialist, I knew I had found the answer.
Suddenly so many things made sense. I was able to look back at situations and misunderstandings and understand what had happened. I’d been told my communication could be “off” sometimes – a bit intense, a bit abrupt. Having an understanding of my autism, I have been able to take care of myself better. I understand the differences between allistic and autistic communication, and when I need to rest and recoup.
Autism is mostly an inherited condition. The largest study of its kind, which involved 2 million people across five countries, suggests that autism is 80% determined by inherited genes. It’s not caused by bad parenting or by childhood vaccinations. It’s not a mental illness. Autistic children are not unruly kids who choose not to behave.
I hope my story would inspire others to seek out early diagnosis.