I know how hard later-life autism can be
As Anne Hegerty struggles to cope with her Asperger’s in the jungle, Laura James explains the shock of diagnosis as an adult
Idon’t tend to watch I’m a Celebrity … Get Me Out of Here, but like all reality television it still manages somehow to seep into your consciousness. And so I have become aware of what is being described as Anne Hegerty’s “meltdown”. In short, the quiz professional from The Chase has burst into tears and threatened to quit the jungle after being moved into a new camp for failing a task. What makes this different from your average celeb tantrum, however, is that Anne has Asperger’s syndrome.
Like me, Anne has been diagnosed as being on the autistic spectrum and, like me, it was something she discovered later in life (for her it was at 50; for me it was three years ago at 45).
The first thing to say is that we are not a homogenous group. Of the estimated 700,000 autistic people presently living in the UK, we will all be incredibly different with varying strengths and needs. Just like the typical population. That said, it came as a real shock to learn something so huge about myself later in life. But there has also been a sense of vindication, because I always knew I was different.
It has been hard for my husband; to be married to someone for 23 years and then suddenly find out something so significant. He was reluctant for me to seek a diagnosis at first – I think he didn’t want me to be stuck with the label. Family and friends have also, understandably, been surprised, although are now more forgiving when I struggle at gatherings.
To me, all this makes Anne Hegerty’s decision to expose herself to the glare of publicity all the more courageous. To go on reality TV is a brave thing to do. To do so in a jungle is doubly brave. And to do so while autistic is just amazing.
Even getting to the remote Australian outback, where the
ITV series is filmed would, for me, be out of the question. Just going on holiday can be like a
‘Just going on holiday can be like a military operation’
military operation. I can’t fly for more than a couple of hours. I have to know exactly what the hotel is going to be like in advance, so do hours of research. I have to know exactly what food is available, and master as many tiny details as possible – right down to understanding the vagaries of the local currency.
As for I’m a Celebrity’s famous “Bushtucker trials” – where contestants are fed all manner of unspeakable fruits of the jungle – I can’t even let my husband of 23 years cook, for fear of him straying from my “safe list” of food.
For me – and the experience of many other autistic women I’ve interviewed over my years as a journalist – the ideal scenario is to live in what my husband calls the “grey zone”. Everything needs to be comfortable. No surprises. I just like things to be as quiet as possible.
I was adopted as a child and remember distinctly, aged five, feeling different from everybody else in the playground. I used to have extreme meltdowns in response to anything out of my control, and they would lead to seizures. I was utterly ashamed and tried to find ways of covering those differences up.
For example, I feel things in colour. I can’t put names to my emotions. I tend to have a good feeling and a bad feeling; good is pink and soft, cloudlike and cashmere – although I’ve been told that is a very middle class thing to say. Bad is sludgy green-brown and spiky.
From early childhood I was marked out as gifted and fixated with learning. Yet I was ill-equipped to deal with the pressure of exams and left school with one O-level in cookery. I spent my 20s bouncing between jobs, unable to deal with the sensory overload and illogical politics of office life.
No one understood why I couldn’t cope and I received all manner of misdiagnoses. One, for anxiety, saw me check into rehab for three months, aged 23, with a dependency on the notoriously addictive tranquilliser lorazepam.
Eventually, it was a meltdown at a hospital appointment, in a room devoid of air conditioning on the hottest day of the year, that led to me being correctly diagnosed. Where, previously, I had been blamed as acting like a spoilt child, or simply rude, the nurse recognised my behaviour as that of a person on the spectrum. It was a light bulb moment.
There are downsides to a late diagnosis, but upsides too. At 45 you are a fully formed person. I very much remember feeling like “this is me as I am, but now I understand why I’m this way”. As an adult, you also have more agency. I still feel like too much mayonnaise is a crime against humanity – but now I just won’t eat it. That said, if I go to a restaurant for dinner and something appears on my plate that wasn’t listed on the menu, it can still cause a meltdown.
In general, autistic people are hypersensitive. Lights seem brighter, sounds louder, smells and tastes more intense. Most people reading this will know what it feels like to walk out of a loud gig or club, and feel relief. We often get that overwhelmed feeling just wandering around a supermarket.
I can hyper-focus on subjects and rapidly master them. From having zero interest in politics two years ago, I have become obsessed with Brexit and reckon I now know more about European laws and regulations than half of the Cabinet (although some may argue that is no hard feat).
My husband is understanding. I work from home, and despite having four children, now in their 20s, I’ve always been lucky enough to enjoy a peaceful domestic life. As a result of my own experiences, I never made my children do anything against their will and never told them off. If they didn’t want to go to school, I wouldn’t make them. If they wanted to eat something different, I would cook it.
Previously, like the vast majority of the population, I had a stereotypical view of autism. Essentially, it boiled down to everybody who is autistic either counting cards in Vegas or being anti-social. Also, that we are more likely to be men. There remains a real gender bias in diagnoses. We are expected to have special interests in things like pylons or playing with trains. We are viewed as good at maths and lovers of bad jumpers – basically, the geeky guy from IT.
But actually we are as different as neurotypical people. So, for me, watching somebody with autism, like Anne Hegerty, on television is astounding. I hope she sticks it out in the jungle for as long as she can – she is a great ambassador and will help broaden so many minds.