It’s hard to remember that this day will never come again. That the time is now and the place is here and that there are no second chances at a single moment.Jeanette Winterson
Welcome to the Paper Lifeboat blog. Founded in Spring 2019, its aim is to connect with adults learning that they are autistic – to offer education, entertainment, and some much-needed solace.
I’ve always felt like an alien on this planet.
As a child in the 1970s, I used to think, “Any minute now, is going to let me in on what’s really going on here. Until then, I have to play along. If I just keep pretending, if I just keep smiling, I’ll be given the keys to the kingdom and my life can really start.”
I learned to mimic and tell stories, to make people laugh, to act and to put on a good face. I just had to be patient, I told myself. Eventually I would pass the secret test, and someone – perhaps a parent, perhaps a teacher, perhaps even a benevolent committee of some kind – would take me into a quiet room, sit me down, and congratulate me. They’d tell me the reasons why nothing made sense, everyone was pretending, and everything was just a bit, well, weird.
Weird summed up my days. I couldn’t keep track of physical objects and was forever losing and breaking things, including my own body. I found eating to be uncomfortable and pleasureless, and couldn’t understand why we performed this bodily function in groups. I didn’t like to be hugged or touched, preferring instead to soothe my senses with repetitive fiddling that drove others mad (particularly the few people whose arms or hands I did like to stroke for comfort). I laughed at things no-one else found funny, and missed things that others did. I often zoned out without knowing why, and forgot huge expanses of the day, yet at night I couldn’t settle to sleep. I was probably hungry and exhausted most of the time, but couldn’t tell. I still didn’t know what was normal, so there was nothing to compare it with. I still hadn’t been told.
Teenage years arrived, and I was still awaiting the chat. By then I’d had some wonderful, happy adventures in this peculiar and miraculous world. Academically bright, outspoken, and creative, I bounced through life doing reasonably well on the surface. But I never quite fitted in anywhere. Whatever the class, club, or clique, I could give an approximation of being a member, but would often find myself inexplicably excluded before too long. I loved people, but they confused me. I would crave time alone so that I could weep, rock, and shake without attracting attention. I didn’t know how to “hang out” with others, or obey the unwritten rules of group membership and loyalty. I started to become a loner. I stopped acting and singing. All of a sudden I didn’t want anyone’s eyes on me. I made myself small to pass under radars; without anyone realising, I was getting left behind.
By my early 20s I was beginning to think that the “chat” was never coming. Still, I persisted in all the right things; I graduated, and went on to hold down demanding work in the emergency services. I married and became a mother, I took a worthy charity job, I arranged birthday parties and went to toddler groups. It all seemed like a fairy tale, and that’s exactly what I was doing – following a narrative and waiting for the chapter where it all made sense, where I could start to feel the benefits of it all, instead of feeling scared and overwhelmed all the time.
The disconnect between the two was painful; I was regularly suicidal and self-harming. I covered it well with masking because I felt so ashamed of my inability to cope, but this exhausted me. I’d regularly collapse knowing something was wrong, but not what, and not feeling able to connect with anyone who wanted to help.
Once I entered my 30s, I realised I had to go out and find this “chat” for myself. Action was needed if I was to continue to function at work and as a parent – and once I became a mum, I couldn’t hide my not-coping any longer. With great difficulty, I broke the pattern of generations and asked for help.
Mental health services did their best, but never really settled on a diagnosis for me, and whatever it was ran much deeper than anti-depressants or therapy could touch. Time after time I’d be signed off a course of therapy or drugs with the needle having barely moved; therapists would say, “I’m sorry we didn’t make much difference for you.” I’d always learn something from therapies like CBT or EMDR, but I couldn’t really execute it; like watching a gymnast somersaulting, I could see how it worked, but couldn’t somersault my own, unwieldy self.
Eventually, I gave up involving other people at all, apart from a small tribe of beloved weirdos who loved me fiercely. The “chat” wasn’t coming, I decided. No-one, anywhere, knew what was going on. I resigned myself to being lost, relying on my own wonky coping strategies to get through each day.
I’d always been aware that autism existed. But it wasn’t until I first started working closely with autistic people in my late 30s (first as a mental health worker, and then as a service manager) that I realised it might be a factor for me. I related much more to autistic people than to others. They made sense. I liked the way they approached things, their unmasked socialising, their sense of humour.
Both my children’s schools were noticing differences in them, too. In the 1970s and 80s, so long as your marks were high and you weren’t misbehaving, no-one minded if you spent each lunchbreak locked in the toilet, or sitting on a wall talking to yourself. In the 1990s, I could play the part of a coolly aloof student, or a boffin-like employee. In the 21st century, things got noticed. Or maybe I was just more aware. Maybe… maybe someone did have a clue, after all. And so it was that I started the long journey towards the realisation that I am autistic.
In time, I’ll share the things that helped me to acknowledge it, how I was assessed, and what a difference it has made. (A huge turn of the tide came with an article about someone else like me, which I originally read on a blog just like this one; it inspired my name, and I’d love to find and thank the writer.)
For now, you might be wondering whether I’ve still given up all hope of “the chat” – the one where someone would give me the magic keys I needed to make sense of the world. So, yes. I have given up my 40 year hope that someone would explain it all to me. Instead, I’ve realised something rather wonderful…
We all co-create the reality we find ourselves in from one moment to the next, based on our experience, learning, and best-guesses. These are based on perceptions that are individual to each person, and our ability to express how the world looks to us varies wildly.
No-one really knows what’s going on, or what “normal” looks like. There is no committee, there is no “chat.” I used to think that was terrifying, but now I find it exciting. I’m ready to have agency in the second half of my life, rather than be tossed about on the waves.
People still yearn for “the chat,” though. And that’s exactly why I’m writing – to take part in the conversation. You can just listen for now – I understand that feels more comfortable at first. So I don’t mind laying my experiences out for you. It was a blog that first tossed me a life raft, so I’m paying it forward so that you can start your very own chat – with yourself and the people you choose to involve – before too long.
Wishing you well on your journey of discovery and self-acceptance!