Last year, I discovered the #actuallyautistic community on Twitter. These brilliant folk have been the source of much information, validation, and friendship.
One brave soul from their ranks noticed that she and I lived close together, and suggested a meet-up. Having both acknowledged that socialising with strangers was usually very low on our to-do lists, a procrastinate-tastic period followed. Then, thanks again to Twitter’s #actuallyautistic community, fate gave us a nudge with an event that seemed designed exclusively for us… in the shape of “The Duck.”
Penned by Rhi Lloyd-Williams of Autact Theatre, this one-actor showcase by Lucy Theobald spoke to us both in a voice so clear and pure, a voice that said, “no, it’s not just you.” Delivered as a monologue, it describes a young autistic woman’s attempts to come to terms with the masks others wear, and discover which might fit her. By turns funny, hopeful, and heart-breaking, it blends delicacy with a deep dive into how it feels to be at odds with the world, and yet madly in love with it and wanting to belong.
“The usual representation of autism is not someone like me. They’re usually children and male. It’s so important that we see autistic women out there too. That representation is vital.”
And so it was that we two Twitter strangers quacked happily with ideas and relief right through the 3 hour round trip to see it, freed up by the permission the show gave us to tell our stories and connect.
The flyer has been pinned to my office noticeboard ever since. It’s now a part of my “good things happen” gallery. The reverse even has origami instructions to make your very own paper duck. (Wouldn’t that look nice next to a paper lifeboat..?)
Today, a friend messaged me from their mid-morning Monday desk to say that they were struggling. (This friend thinks they might be on the spectrum and is wrestling with whether that warrants further enquiry. People in this situation seek me out often, and I actively welcome it.)
Their pleasingly logical plea for help came with an insistence for me not to worry about them; however, if I could send them a couple of tips to get through their messy, stressy Monday, they’d appreciate it… sorry to have troubled me… don’t worry if I don’t have time… and other adorable, relatable minimisings.
I shared a couple of quick fix check-ins. The Pomodoro technique. The sensory sweep. (I’ll write about these in time – links will appear across these posts before too long.) However I sensed something more fundamental in their offloading.
Their stress arose from a situation in which other people were not making much sense. And when you’re prone to thinking you’re defective, it’s all too easy to assume that any deficit of understanding lies squarely with you.
So I offered this: Consider the possibility that other people aren’t making sense in this situation. Just because you’re having difficulty understanding something, it doesn’t automatically follow that it’s been properly explained and the fault lies with you, the receiver. You are entitled to seek clarification. You are allowed to ask the same question twice.
“The beginning of wisdom, I believe, is our ability to accept an inherent messiness in our explanation of what’s going on.”
Sometimes, no-one has the first idea what they’re doing. Sometimes a whole business meeting can go by with nothing having been achieved or agreed on at all beyond a little power-wrestling or grandstanding.
Yes, it’s taken me twenty five years of working life to fully understand this. When someone is only making 10% of sense, my sense-seeking mind has a tendency to leap forward 90% to make up the shortfall of understanding between us. Sometimes this speeds things up; sometimes, it develops ideas. Sometimes though, it misfires and annoys them – either because I’ve drawn the wrong conclusion, or frankly, been a smart-arse.
I’ve learned (or rather, am learning) to quiet that internal voice that insists on perfect sense from others. It’s not my job to restore everyone else’s thoughts and actions to order, and it’s an arrogance to try. There are times when, if nothing much is at stake, the quickest route to sanity is accepting that an exchange simply made no sense to anyone, and letting that pass by unremarked. And of course, a pleasing side-effect of letting other people not make sense is that you give that permission to yourself, too. What a relief.
My correspondent today was twenty years my junior. I hope they went back into their day feeling a little less wrong-footed.
Later that evening on the tube (I’m in town for tomorrow’s National Suicide Prevention Alliance conference) I found myself propped against an open window between carriages. Each time the train set off, tepid air gusted through, carrying chatter and scent from all the carriages ahead. At first I winced and dodged it, fringe whipping at my face, eyes stinging as I turned this way and that.
Soon I found the right angle. With my face pressed full into the breeze, the warm scent of working machinery and discarded coffee cups pushed my hair away from my closed eyelids; a temporary figurehead in winter coat and messenger bag. I felt the pressure give way as we all surged through the tunnel, together temporarily on our many missions, carrying tiny payloads of potential to our myriad destinations.
It’s a wonder, really, that anything synchronises at all. Don’t exhaust yourself trying bring it all to order. Save your energy for those times when directing the flow could make a difference.
My son asked me recently, “How do you make a conversation keep happening?”
A few suggestions for topics like the weather, or strategies like taking turns, didn’t cut it. He was searching for what gives momentum to a connection; the mysterious essence that makes others want to engage with you in that lovely upward spiral of mutual interest.
Of course, I couldn’t give an answer that was likely to work, much less teach him the formulae he hoped might exist.
Social impairment (or, as many prefer, social difference) is a feature of autism, and despite having a very busy life full of people who care about me, I can’t deny that it’s something I have to work at. I can forget the simple things that others need in order to feel valued, which can bring on shame and inadequacy, often followed by massively over-compensating in order to soothe any hurt feelings (including my own). So I could hear the tremor in his question, and badly wanted to help.
I’ve been on the lookout for resources I can share with him, rather than passing on my wonky strategies of masking, people-pleasing, or isolating.
This month, Action for Happiness are offering a “Friendly February” calendar, with a suggested activity each day to help build connection. They all look nicely achievable. And much as I hate taking instruction, or admitting I need help… some of these hadn’t occurred to me. Time to put on my humility pants and take some good advice.
I could pretend that we’re doing it for my son, but hell, I need to get better at this stuff, too.
So it’s going on the fridge. Let’s see who scores a full house, and where it takes us…
Starting Paper Lifeboat has taken me a long time. Five years, to be exact. One of the things that’s held me back is wondering whether the world really needs yet another autism and mental health blogger. Aren’t there enough of us out there already? Won’t my words just sink like a stone in the churning waters of voices?
This is great fuel for an inner critic. Mine’s been admonishing me that there are other things I Really Should Be Focusing On. Such as the impending void of Brexit, climate change’s implications for our children, and the refugee crisis. Brains are helpful like that; they love to remind you how impotent you are in the face of major, systemic problems. And of course, that impotence is hard to argue against. It taints everything with pointlessness. Before you know it you’ve been under the duvet for three hours. And so the challenge becomes to Do Something Anyway.
So it was that, on Sunday, I took myself off for a walk by the sea. I’d taken this blog down a day after starting it, terrified that telling my story was going to bring Brexit-sized calamity down on myself and everyone I loved (thanks, brain.) Grey seas battered the prom as the soggy January wind blew all over my catastrophising. The weather’s solidarity with my mood made me feel a little better, but soon I was quite cold (having failed to plan my outfit properly for the weather, basing it instead on Just Bloody Well Getting Out For A Walk Before I Sabotage Even That.)
“It is surprising how many unoriginal thoughts we have”
And so I dived into a place I have probably walked past twice a week for many years without stopping – the RNLI gift shop. Inside this teeny space crammed with cheery goodies sat two women whose ages I would not dare to guess at. Dressed in jaunty scarves and woollens, they chatted brightly, Britishly, about the weather and the vagaries of their new kettle (the hot topic of the morning). I was comforted by the tradition of it all, and soon we were chatting away about their new stock.
Making suitably interested noises about their gift cards, tote bags, and travel sweets, I suddenly realised that their branding colours were the same ones as I’d chosen for this site. I found myself staring at the children’s gifts in their navy and orange livery, and when my eyes settled on a lifeboat itself, I started to laugh. I was in a freaking navy and orange lifeboat shop. A shop that, as a U.K. seaside dweller, had been in my peripheral vision for decades. I hadn’t set out to copy them, and yet I totally, if unconsciously, had.
There are very few original ideas in the world. We all soak up influence like sponges, and in turn, influence more than we can understand. Maybe it’s time to accept this and take my little bit of influence out into the world after all. It might not be new, it might not be original. But the vanity of not offering anything at all is a poor excuse not to try.
The following day, I re-published Paper Lifeboat. It has already reached 9 countries and over 600 people have read so far. Turns out there’s a need for more lifeboats. An endless chain of demand and supply, in fact. I’d been demanding something like Paper Lifeboat for so long. Time to get over myself, and supply it.
I’m going to change my colours eventually – it’s the right thing to do (not that the RNLI need protecting from my mighty empire!) As a peace offering in the meantime, I bought some of their lovely gifts.
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.
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, someone 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.
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!