An Epiphany

Probably more than half the autistics in the world are undiagnosed; could you be one of them? Until recent years diagnosis in childhood wasn’t routine, autism wasn’t often recognised in girls and women and consequently generations of autistic children grew into autistic adults not having any idea why they were different. I’ve been autistic all my life and for several years as an adult I had close autistic friends and colleagues but I didn’t realise I was autistic myself. What finally made the difference? I suppose it was actually recognising that my sensory hyper-sensitivity wasn’t me being difficult but was a recognised feature of autism. I simply cannot bear any cream in the milk I have in my tea – it has to be skimmed cow’s milk – not semi and definitely not full cream. I mentioned that to an autistic friend and colleague, who pointed out what it probably meant (in combination with a bunch of other stuff obvs)… Formal diagnosis confirmed it soon afterwards.

All my life I’d known something separated me from the majority of people but I hadn’t known what. From age 8 or so, I knew I was different and a bit weird. In adult life I hoped I’d put all that behind me, but I still felt different and unlikeable, could only be myself my own, and didn’t enjoy what other people did. I tried really hard not to be like that – I made efforts to fit in as much as I could – “masking“. But every time I thought I’d got close to cracking it, the exhaustion overwhelmed me and I had to face the fact that I wasn’t enjoying it. Without knowing anything about autism, I concluded that this my fault for being “lazy”.

Back then all I knew about autism was the stereotype. Autistics in popular culture – particularly ten or more years ago – were male, uncommunicative, lacking in empathy, unable to function in normal society, and deeply interested in computers or trains. They were also rude and selfish which it was definitely not acceptable for me to be (as a girl and an attempted decent human being). When I showed what turned out to be autistic traits I got in trouble so I assumed they were signs of being a bad person. I did everything I could cover up the signs of autism, and generally did a pretty good job and got praised for it, which reinforced that behaviour.

I was quite good at putting on a public face; I used my intelligence to adapt and fit in among people, understanding them as best I could using deduction rather than neurotypical instinct. For example, I knew people expected eye contact and that I hated eye contact so I’d learned how to fake it from an early age – I remember meeting people’s gaze through the rim of my glasses at primary school. I had no idea that such things could be aspects of autism, because such things weren’t talked about.

As I grew up, got some degrees and a job, the stereotype of autism became ever less like me. People in professional jobs just weren’t autistic, or so it appeared. Even now, it’s generally people in junior jobs who feel OK with being openly autistic – people in more senior roles hide their autism for fear of not being taken seriously. And, I fear, with good reason. I learned a lot about autism from mentoring a wonderful colleague who was experiencing difficulties with their autism in the workplace. I continued to think that I couldn’t be autistic because I wasn’t like that person, and because I wasn’t experiencing the difficulties they were. If I was mostly coping, and attempting to teach someone else how to cope, surely autism wasn’t me?

In the end it was seeing someone like me get diagnosed autistic that led me to consider it for myself. I had a number of autistic friends and twigged that might mean I was too; it’s sometimes easier for autistics to talk to each other because we more instinctively understand each other than we understand neurotypical people. It was relaxing to talk to autistics because I wasn’t having to make all the adjustments and deductions I would have to make talking to “normal” people. So gradually it all came together. I read a number of autobiographies of autistic women and it felt like reading my own story, so I thought I should see whether I met the diagnostic criteria for autism. Which I did. Very clearly, apparently (I had imagined I would be borderline because I was “coping”).

Since that time I’ve tried to be more open about who and what I am. I know quite a few other people who are coming to realise that an autism diagnosis fits them and can be really helpful to them, and I also very much hope to chip away at the stigmas and prejudices our society still has about autism. Having given talks in professional settings over the last couple of years, I’ve lost track of the number of times someone has come up to me afterwards to say: “you know the experiences you talked about – I have that too”. I talk to lots of people who are wondering if they’re autistic but assuming they can’t be because they don’t fit the stereotype, have a professional job, family, all the usual markers of functioning in society. Knowing that you can be autistic AND mostly fit in, and consequently be working hard each and every day to make your autistic brain work in a neurotypical setting, can be very liberating. I also imagine that it must be hugely empowering for autistic kids to see adult relatives role-modelling how to live an autistic life.

The Epiphany in the Christian Church is when we remember the visit of the wise men (or “Magi”, or Three Kings if you’re thinking of the carol) to the baby Jesus. The wise men were philosophers from abroad who had followed a star, travelling from the East. The significance of this day is that God was revealed not only to his own people (such as the shepherds who visited the Holy Family at Christmas) but to foreigners too – and thus the whole world. We use the word “epiphany” to refer to any great revelation or realisation about the world or ourselves. For me, realising that I was autistic was emphatically an epiphany, and that is quite a common experience. It’s possible that someone reading this might have been wondering why the experiences of autistics seemed to chime with something within them. This might even be the moment of epiphany when they come to realise that actually it’s not that they’ve been a bad person their whole life, but that they’ve had a differently wired brain.

If you’re reading this and thinking that someone you know may be autistic or that you have an autistic staff member, please make sure you listen to them and what they want and need. If you’re reading this and wondering if you’re autistic yourself – congratulations – welcome to having a better understanding of your own brain! I hope the resources in this blog may prove helpful to you.

I’ve been doing posts from Advent through the O Antiphons, Christmas, Boxing Day, and New Year to Epiphany (today) based on Christian commemorations of the days ending as many as possible with a prayer for the day in the Anglican church. So this post, the last in the series, has been brought to you by the collect for Epiphany:

Creator of the heavens,

who led the Magi by a star

to worship the Christ-child:

guide and sustain us,

that we may find our journey’s end

in Jesus Christ our Lord.