FEELING DIFFERENT
One patient-turned-activist shares her journey to diagnosis, and an insight into what life is like as a woman growing up feeling different
How a patient-turned-activist finally arrived at her autism diagnosis
‘You don’t look autistic – are you sure?’ I’m not sure if anyone could tell you what an autistic person ‘looks like’. But it hasn’t stopped people from asking me this question. It’s one of many ways in which autism is misunderstood.
Autism is often described as feeling different from those around you. But when all you have to go on is your own experience, it’s hard to know what ‘different’ is. For me, as a child, it manifested in constant crying, an inability to settle and being overly attached to my parents. By my teen years, I was anxious and miserable, and expressed those feelings by harming myself. Needy one minute, reclusive the next, I had few friends – and my teachers couldn’t understand my inconsistent behaviour either.
Suspecting I was suffering from a mental health problem, my mum urged me to see a GP, and by the time I was doing my GCSES, I’d been diagnosed with anxiety, depression and anorexia. But none of those labels made sense to me. While it was true I’d been avoiding food, it had nothing to do with control; I just had an aversion to foods with a mushy texture.
And yet, ‘anxiety attack’ is a fitting descriptor for the way I would suddenly become overwhelmed without warning. On one occasion – during a trip to
Ikea – the noise and the strip lights and the smell of wood became too much for me to bear. I started crying, then jumped into a wardrobe to avoid people’s stares.
The first person to use the word ‘autism’ in the context of my behaviour was my driving instructor.
I was 17, and taking all of his instructions too literally. If he asked me to ‘pull up on the left’, I would do it – regardless of what the other cars were doing. Getting increasingly frustrated with me, and fearing I was dangerous, he explained that his brother is autistic, and he encouraged me to see a doctor. I took myself to a doctor, who, once again, dismissed my concerns. I couldn’t possibly be autistic, he explained, because I had booked my own appointment.
Over the years, I became an expert at masking the aspects of me that felt different. I blended in enough to go on nights out with friends and, in 2015, I got married. But I was pretending to be someone I wasn’t, and the marriage didn’t last.
Desperate for answers, I decided to pay for a private appointment with an autism specialist and, finally, aged 23, I was diagnosed as autistic. It was such a relief to have a label; an understanding that there was a reason why I felt the way I felt.
Not that life as an autistic adult has been easy. With no support available to me in my local area, I had to go online in search of coping strategies. There, I found solace in conversations with other autistic people. They taught me that I wouldn’t be able to stop every meltdown – which could be triggered by a social or sensory situation – but that there were strategies I could learn to help control them.
I still get caught off guard sometimes.
Like when fireworks took me by surprise recently and left me in a shocked, tearsoaked state. I find supermarkets – with all their chatter – similarly unbearable.
But I love live music, and if I know I’m going to be in an environment with loud noise and flashing lights, I can psych myself up for it. I’ve also grown to see the positives of my condition. I have a really good memory and keen eye for detail, like being able to tell my mum without missing a beat that she put a set of spare keys in a coloured pot in a cupboard in a particular room 10 years ago.
One of the biggest challenges is how others respond to autism. I’ve filled my life with people who understand my condition – people who don’t take it personally if
I’m not feeling up to going out and who understand if I have to leave a party early. It means that my bubble is often burst by comments from strangers. Yes, autistic people can sit in the pub and drink a pint with you; no, I’m not like that guy from
The Big Bang Theory. Frustration over the public perception of autism led me to start the hash tag# Doi look autistic yet? It went viral and I hope it opens people’s eyes to the reality of autism. But it’s also for anyone who feels like I did; anyone who’s been given a mental health diagnosis that doesn’t quite fit. Push for answers and you might find one that does.
Find out more about Hannah’s autism awareness campaign at facebook.com/ doi look autistic yet and on Ins tag ram @doi look autistic yet