“ Aged 43 I was assessed by a specialist and told, “Congratulations, you’re autistic!” I finally had a reason for finding life and other people so damn hard.”
Words: Florence Neville, Picture: Kasia Kiliszek
Society is built on subtle rules - more subtle than wealth or intelligence, beauty or skill set - there are rules that tell you where you fit in, where you belong, who you are in life, and many of these rules are based around how you present to the world. This is not just by how you dress or what you say, but your facial expression, your body language, the cadence of your speech. Others can recognise these subtleties within seconds and judge whether you are to be revered, accepted or dismissed. Survival depends on following the rules; success depends on using the knowledge of these rules to your advantage.
Children instinctively learn these subtle rules early on; they watch, they mirror, they judge the reaction and they develop. They build upon successes within the safety of their families, practice within their communities and then, all being well, emerge into the world knowing that a smile will get you further than a frown, and an open posture will build trust quicker than staring at the floor. Figuring out the social rules enables a child to find their place in the world.
But what if you don’t absorb these rules automatically?
What if you have a developmental disability that means you don’t instinctively pick up the subtleties that make communication with others flow? When you can’t read between the lines, or translate the context behind your own words, how do you find your place then?
You have to rely on others to tell you. Your identity is knitted from the strands of feedback you get from other people.
Unfortunately, if you don’t get a diagnosis of autism until your forties, you can get a pretty warped picture of who you are and where you fit in in the world.
I learned to read at three, but couldn’t easily dress myself until I was eight. I used vocabulary beyond my age, but constantly misunderstood the context of conversations. Kids at school told me I was weird all the time. Mostly I was ignored, but being ignored was largely easier for me because “peopling” was tiring.
A lack of facial expressions meant people told me I was sulky, snobbish and rude.
As I neared my teen years I finally figured out that the faces people made actually meant something, and so I spent hours practicing in the mirror to transform my previously blank face into one that showed something, without having to rely on talking. But I still hadn’t learned the subtleties of conversation; how to engage on a comfortable, entertaining and supportive level.
My inability to say the right things meant that people told me I was uncaring, insensitive and cold.
Autism comes with overwhelm. The world was too loud, too bright, too smelly. I fell behind in lessons and forgot to take the right books into school.
I didn’t have the words to describe how words moved around the page and that it took effort to make them stay still or that I couldn’t filter out the sounds of cars outside, or someone talking in the next room or that the light flickering confused me.
I didn’t have the energy to explain that anxiety kept me from sleeping more than six hours a night. I was too ashamed to tell them that I had uncontrollable and violent meltdowns at home that caused my mother to confine me to my room for days at a time because I had, “Upset everyone and nobody wants to even look at you.”
My inability to behave in the right way meant that people told me I was angry, scary and lazy.
Picture that acne ridden teenager that was me: hair cut short at a barber’s, teeth that grew in so crooked that I couldn’t eat comfortably; shapeless t-shirts and jeans from M&S men’s department to cover up my skinny legs and bloated tummy, face and hands constantly moving with twitches and tics; staring at the floor all the time because I found people’s faces confusing and overwhelming.
My inability to figure out how to look right meant that people told me I was fat, ugly and weird.
Music rescued me. I played viola in the county orchestras and while I was following the notes on the page and the conductor’s baton it was a source of joy that I could follow these logical and scripted rules of communication. When I left home to study music I found that the arts attract other oddballs and misfits. I hung out on the outskirts of social groups that were more accepting, and I began to learn more about how to function in a social world.
Through my twenties and thirties I gradually learned to fit in; to look, behave and talk in a socially acceptable way. To put on a disguise that nobody but my wonderful husband saw through. I learned the strange anonymity of “being normal.”
But my ability to fit in meant that I now had even less idea of who I actually was. I had no identity beyond the one I chose to show people. My depression, confusion and anxiety were hidden behind a thin veneer of highlights, acceptable clothing and a part time job in customer care that left me exhausted from the constant communicating.
Aged 43 I was assessed by a specialist and told, “Congratulations, you’re autistic!” I finally had a reason for finding life and other people so damn hard.
Within a year I had the pleasure of meeting up twice with groups of autistic women with stories very similar to mine. We compared tales of inadequacy, flapped our hands in recognition, laughed at the identical worry lines between our eyebrows. Some avoided eye contact, some blundered into other’s personal spaces, some shouted, some mumbled, some wore dark glasses or headphones. Most of us wore strange combinations of clothes or hairstyles but there was also - almost universally - great taste in kick-ass boots. Silences were never uncomfortable and there was a noticeable lack of small talk. We smoothly worked around anyone’s sensitivities to smell, light, sound, taste and texture.
But the most noticeable realisation was that communication was startlingly easy.
The accepted social rules were temporarily suspended and without trying to translate words into facial expressions, body language and (to us) unnatural forms of speech our communication became clearer and more honest. Talking in our own language meant that we each felt recognised for the funny, vulnerable, intelligent, hard-working, beautiful, sensitive, creative, loving and loveable women that we were.
Those gatherings were life affirming. They encouraged me to begin the process of disregarding others’ misconceptions about me and to reach inside myself and discover my own identity. I am slowly appreciating that my past identity was not based on my inability to communicate, but rather on others’ inability to understand. Now it’s mine to reclaim.
Florence Neville is a Health and Nutrition Coach. Visit her website to learn more about her work.