Love, marriage & autism
Comedy writer Sara Gibbs believed what everyone said about her: that she was a handful. But being diagnosed with autism aged 30 changed everything
Imarried John almost nine years ago, wearing a meringue-like gown that drowned my 5ft 3in frame and a goofy, delirious grin on my usually deadpan face. Our guests gathered in the marquee to hear my dad, who had just received a terminal cancer diagnosis and is sadly no longer with us, make a loving speech. It was heart-wrenching and beautiful, but as he came to the end of it, he said, ‘And dear John,’ pausing for effect, ‘the most patient man in the world.’ The room erupted into laughter, then applause. Somebody whooped. Even now, with more than five years under my belt as a comedy writer, I can only remember one of my jokes getting this response. At the time I laughed along to show how self-aware and in on the joke I was. Secretly, I wanted to burst into tears and run away from my wedding like a discount Julia Roberts. I felt like I’d been found out by everyone I cared about. The room was alive with glee that someone had finally said it; John is a saint to put up with me when I’m such hard work. What they couldn’t have known, because I didn’t even know then, is that I am autistic. A fact I wouldn’t find out for another five years. I’d always thought I was different. I seemed to find life harder than everyone else. Growing up, my loved ones attributed those differences to me being wilfully difficult. My ‘tantrums’ (which I’d later discover were autistic meltdowns; involuntary and unavoidable physical reactions to sensory or emotional overload) meant I was labelled attention-seeking. My aversion to almost all foods apart from pancakes and pizza made me a picky eater. My inability to get my head around basic household chores, particularly anything that involved decision making, was misread as laziness. My blunt truth-telling, such as pointing out the unspoken tension between two classmates, branded me a shit-stirrer. I was like catnip to bullies and attracted a long string of psychological tormentors. I was called a weirdo, a crybaby and, most of all, a drama queen. I believed and internalised every negative assessment, all while believing that if I just tried harder, mastered self-control and changed my surroundings, everything would be okay. Despite two ‘fresh starts’ at sixth form and university, I couldn’t leave behind the common denominator in my problems – me. By the time I graduated, I’d accrued a lifetime of judgemental labels and no matter how hard I tried to peel them off, I was left with a sticky residue that congealed into self-loathing. The idea that someone might love me seemed out of the question.
I met John when I was 22 and working in my first job. I was a fledgling copywriter, he was an IT manager at the same company. We had an argument about politics during a coffee
break at my desk. I called him an idiot. He walked away smiling. It was love at first fight. As I got to know John, I started to realise how incredibly rare and special he was. No matter how extreme I was, nothing seemed to scare him away; he was funny and enormously caring. He always saw the best in me. Weeks into our relationship, when John took it upon himself to unclog an unspeakably disgusting toilet left by a guest at my flat, I knew I would marry him. Just three months later, we moved in together and after six months, we were engaged.
I’m not sure when exactly John noticed that I found everyday things hard, and quietly began compensating for the things that wore me out. It happened gradually. I always found excuses to make sense of how much he did for me. John just enjoys cooking more. John can drive, so it’s easier for him to get to the shops. John likes to feel useful. All of these things are, and were, true, but they weren’t the real reasons he looked after me. As I developed a chronic pain condition and insulin issues, my contributions to the running of the household dwindled to nil. Friends began to comment on our unusual dynamic. Some with concern for me – was I being infantilised? Others with concern for John. Others just with derision – why couldn’t Princess Sara get off her backside and help? They didn’t even know the half of it; how John would book my GP appointments when I was too flustered to articulate myself. How sometimes I’d get so overwhelmed getting dressed that John would need to lay my clothes out for me. How occasionally I would cry and scream and hit my own head and have no idea why. I lived in fear of people finding out. It was easier to play up to the Princess Sara persona, the caricature my loved ones whooped about on my wedding day, than to ask myself the hard questions.
‘You know you’re autistic, right?’ The news came years later while speaking to my cousin, whose son is autistic, at a family party. She had mentioned it before but I had dismissed the idea. This time she explained how autism can present in women; some of us can be overly talkative, extremely emotional, creative rather than mathematical – the polar opposite of what we are told are markers for autism. She also explained how diagnoses can get missed because of sexist labels, with many women being written off as hysterical or attention-seeking. Women can be so conditioned to accept those negative labels that it doesn’t occur to them to seek answers. Until recently, it was even widely believed that only men could be autistic. This is why so many women don’t receive their diagnosis until adulthood.
I decided to find out if she was right and, sitting in the clinical psychologist’s office with John, it felt like everything clicked into place. One of the biggest revelations was that I was disabled, and John, without knowing it but subconsciously doing it anyway, was my carer. It took a while to adjust to the ‘autistic’ label after a lifetime of wearing less compassionate ones. But once I had permission to accept the reality of the situation, it transformed our relationship. I could leave behind denial, shame and secrecy, and embrace and celebrate the incredible, selfless man I married. It allowed us, as a team, to seek support from our loved ones and vital services through our GP.
As a vulnerable person, it’s natural to feel anxious about your role in a relationship – but we have created a partnership of equals, in our own way. John assures me that I bring colour into his life, from decorating our home to making him cry with laughter. We have a close bond based on deep mutual respect. John loved and cared for me before my diagnosis, and the only thing that has changed, in his eyes, is that we now know why.
Besides my relationship, I believe my diagnosis has made me more empathetic. I’ve learned not to judge others based on external behaviours and try, instead, to understand the reason behind them. Most people don’t mean to be blunt, dramatic, or even lazy. People are, emotionally speaking, messy and clumsy, and there could be a million factors behind a rude comment or snub. We are all doing our best with what we have. I realised that a lot of those people who called me names weren’t real friends; my friendship list has definitely shrunk since my diagnosis, but I now know all the people in my life are extremely considerate and loving.
As for John, my dad was right: he really is the most patient man in the world and that’s what makes him so wonderful. I know, now, that it wasn’t an insult to me, but rather the greatest compliment to him. If we could all be more patient and understanding with one another, the world would be a better place. If I could go back to our wedding day, knowing what lay ahead for us, I’d be the one clapping and whooping the loudest.
‘It was widely believed only men could be autistic’