Eloise Stark struggled to make sense of why she felt different until she was diagnosed with autism at the relatively late age of 27, having hid her “quirks” her whole life. It is hoped that a new tool developed by researchers will help professionals recognise sooner those who don’t know they have the condition and the tricks they use to fit in.
I realised I was different when I went to primary school. I would talk about things I was interested in but that was not what everyone else seemed to be interested in. For example, I liked psychology and would talk about that and everyone else was talking about boys. I just had mismatched interests and I always felt more comfortable talking to adults than my peers. I did not quite know how to become a best friend to someone or to play what others were playing.
I was really badly bullied at school. Someone spat on me once, while others would react by getting angry. I would respond by saying “that’s a violation of the criminal behaviour act” or something like that. It was not how people would expect you to react.
My strategies began at primary school – I wanted to fit in. Many people with autism are hyper-sensitive to sensory experiences, for example [some] don’t like wearing socks because they feel tight around their ankles, or they don’t like bright lights or loud noises.
At school we had to have our hair tied up but I hated the feeling of that so would wear it down and get in trouble, with people thinking I was just trying to be cool. I would wear the same clothes as everyone else but it was always a bit tokenistic because I did not understand the deeper reasoning for why they might be wearing it. I was always battling between comfort and expectation.
The teenage years were excruciating because you do not want to the one that stands out. There is a much greater pressure for girls to conform and be part of a social group. If a boy plays on his own he is seen as independent but if a girl does it people say something must be wrong.
I adapted to try and fit in. I learned from an early age that you are expected to make eye contact, then read that, actually, people do not keep constant eye contact and that was something of an epiphany for me. So I started to look away for two seconds at a time for every four sentences of a conversation. I know that if someone makes a joke, I am expected to laugh, whether I find it funny or not.
Socialising is a bit like being among a crowd of people and all of a sudden you forget how to walk. Everyone around you is walking around nonchalantly and you have to think through every aspect of how to put the motor sequence together to stay upright and transition from one foot to the other. That’s what it is often like to be autistic but trying to fit in. It takes energy, thought, and even though you might appear to walk just like everyone else, it takes a lot more effort to stay upright and appear normal. I would sometimes get home and have a meltdown because I was so tired of having to keep eye contact.
The camouflage checklist
Autism is usually diagnosed in childhood but a growing number of adults are being diagnosed with the condition, many of whom develop strategies to hide their symptoms around neurotypical people – those not on the spectrum – which in turn can create a huge mental strain.
Researchers from Cardiff University, King’s College London and the University of Bath have come up with a 31-point checklist to help health workers find out if people are using camouflage strategies and if they could therefore have autism.
Such strategies include:
- Predicting, planning and rehearsing conversations before they happen
- Mimicking phrases, gestures, facial expressions, tone of voice picked up from other people or film, TV or book characters
- Relying on props, for example pets, children or an interesting object
- Avoiding eye contact but giving the impression of interest by looking at the bridge of the nose or standing at right angles to the person they are talking with
- Making appropriate eye contact even if it is not useful for communication
Dr Lucy Livingston, a psychology lecturer from Cardiff University who led the research, said: “At the moment, professionals know very little about these strategies and what to look for. The new tool, if found to be effective, could help clinicians assessing adults for autism and help them understand how hard the individual could potentially be working to keep up this appearance.
“Ultimately, this could mean that autistic people receive a more accurate and timely diagnosis.”
Before I got diagnosed, I did not understand why I felt different. It was lonely. Just as I didn’t understand neurotypical people, they did not understand me.
People could not really understand where I was coming from or what I was thinking, just as I was struggling to understand them. There is an assumption sometimes that people with autism lack empathy, but when a neurotypical person talks to an autistic person it can actually be the neurotypical person who is lacking empathy.
When I got the diagnosis [three years ago] it just clicked into place and I found there were other people like me and I was not the only one. Diagnosis as a child would have made a difference – I would have understood myself better and been able to have a more positive autistic identity rather than feeling like a part of it was missing.
I am learning to be more authentically autistic and authentically Eloise, even if that means that I sometimes stand out. With people I do not know, I feel I need to fit in still, for example if I had a job interview I would feel I had to camouflage. But with friends and family, and increasingly larger circles, I’m learning to be authentic and just be me. It’s wonderful, and very liberating.
There are so many stereotypes about autism, like in Rainman or they are all cis men who really like maths. It’s actually so much more diverse than that and the more people realise that the better. I’m a bit mischievous really and when I tell people I have autism and they say “oh, you don’t look like it”, I reply: “Well what does someone with autism look like?” That flummoxes them.
I spent much of my teens and twenties trying to fit in and compensate for my autistic quirks, but as I hit my 30th year, it dawned on me that it doesn’t really matter whether I do “fit in” and actually, as long as I am flourishing in my own individual way, I can drop the compensation, camouflaging and my mask – and that is OK.