Mon 19 Oct 2020 17.30 BST
Other people’s lives always seemed more effortless, but it took my daughter’s autism diagnosis to realise why
Until last year 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.
Other people made life seem easy and effortless while, before my diagnosis, 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.
I climbed the career ladder very fast. 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. Now I understand that is part of being autistic. Einstein, Mozart, Michelangelo, Steve Jobs, Bill Gates – all these overachievers are widely believed to be, or have been, on the spectrum.
I didn’t just work hard, I also played very hard. I used recreational drugs to smooth me through the challenges of social communication. I was always a clubber, not a pubber, 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.
I burnt out in my late 20s. 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 has been something I’ve always referred to as “the big alone”. Even when I’ve been in loving relationships, as I am now, there has been a terrible aloneness in not understanding 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 started my charity because I recognised that there was a lack of support for young autistic people and their families. Autistic children spend a lot of time “masking”, imitating so-called “normal” behaviour. They need to be able to experience their authentic selves. We run five-night camp programs which help autistic young people build capacity across communication, social interaction, sensory regulation and community participation. It’s also a place where siblings and parents feel supported and get a break. The results have been astonishing.
This is a social justice moment for autistic people. Over the past five or 10 years, the concept of neurodiversity – the idea that these differences in our brains should be celebrated – has become better known. We deserve equality, respect and full social inclusion. Autism isn’t just a medical diagnosis, it is part of our identities, and when autistic people ask you to go the extra mile in learning about and understanding how we think differently, we’re not asking for anything we haven’t done for allistic people all our lives.
We need to start making space for neurodivergent people at school, at work, in life generally. Autistic people bring a whole new set of skills with them. It is time society learnt to embrace our differences rather than requiring us to hide them away.