I usually avoid watching I’m a Celebrity. Bush tucker trials, terrifying insects, the heat of the jungle: the very thought is horrific. But since I learned that Anne Hegerty, one of this year’s contestants, hasAsperger Syndrome, I’m suddenly curious.
That’s because, like Anne, I discovered that I was autistic as an adult. For most of my life, I had absolutely no idea. I’ve always felt profoundly different, though. I struggled to make friends as a child, and although I gradually learned to get on with others, I was conscious that I was making a huge effort to be liked. If I let my true personality show through, I was considered too intense. A friend once described me as ‘Marmitey’ – an acquired taste. You either love me or hate me.
But when we talk about autism, we often focus on the outward signs, rather than how it feels to be autistic from the inside. I may appear socially awkward, but that’s the least of my concerns. Being unable to form friendships meant that I spent most of my childhood depressed and anxious, and by the time I was fifteen, I was only attending school occasionally because I was so miserable and overwhelmed.
I was also frequently exhausted. It took huge effort to conceal who I really was and act like everyone else. To be autistic is to be bombarded with sensory experiences that are extremely uncomfortable – bright light, strong odours and loud noise are physically painful to me, and can leave me confused and bad-tempered. Touch often feels like an electric shock.
Like Anne, it took a very long time for me to understand the source of my difficulties. She only received a diagnosis after she stopped paying her bills and fell into debt. A social worker visited her house and realised that unopened letters were piled up all over her hall, and at that point she was able to get a diagnosis and access support.
For me, the tipping point came when I had my son aged 35. I found it incredibly difficult to cope with a baby. The lack of sleep, the sound of his crying, and the lack of time alone all made me feel as though my head was a pressure cooker. But there was no question that I adored my son, and felt deeply bonded with him. Yet again, I felt different to all the other mothers.
It was only after I heard a woman on the radio talk about her own experience of being autistic that I recognised myself for the first time in my life. It was like looking in a mirror. I discovered that it’s common for autistic girls to mask their autism and to learn social skills by observing others. This was definitely me. I visited my GP and began my path towards diagnosis.
Until then, I had carried some common prejudices about autism, believing that autistic people didn’t feel much emotion, and weren’t creative. I now understand that this is completely wrong. Getting to know other autistics has put me in contact with one of the most empathetic, imaginative, kind and funny groups of people I’ve ever met.
There is no single version of autism. Instead, we often talk about ‘autisms’ – a Venn diagram centred on a neurological difference that means that we don’t experience the social world in the same way as neurotypical people. This may interact with other issues, such as learning disabilities or physiological conditions (for example, epilepsy is common in autistic people). Some autistic people need more support than others, and many struggle to communicate.
Anne Hegerty may have found it difficult to keep on top of her bills, but she clearly has a huge ability to retain knowledge and to draw on it at the right moment. I showed an early gift for words, and now have a career as a writer and literary scout. But, like Anne, I can find it hard to keep up with the demands of the outside world; quite often, emails and letters pile up unopened, and I can overspend because I’m too panicked to look at my bank balance. I’m very grateful to have a husband who makes sure the car gets a regular MOT and the gas isn’t cut off.
I’ve learned to love my autistic brain. I often think I encounter the world in more detail, and that can be irritating, but it can also be very beautiful. I’m grateful for my tendency to form rich, rewarding obsessions, and to sink into deep concentration. I wouldn’t want to change.
I will no longer be avoiding I’m a Celebrity - I’ll be watching to cheer Anne on from the sidelines. I’m pretty sure I couldn’t cope with life in the jungle, but I’m delighted to see her out there, showing what we can do.
The Electricity Of Every Living Thing, by Katherine May, is available to buy now