Reality imitates art

A welcome from @soundcube on Twitter today

Very touched by the welcome I’m getting from the #actuallyautistic community on social media. Thank you.

If you’re looking for support, try searching Twitter for the hashtags #actuallyautistic or #askingautistics. Rich reading awaits you. Perhaps you’ll join in..?

A friendlier February?

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…

How many lifeboats is too many?

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”

Martine Bachelor

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.

I think I’m going to need more of that tea…

A short history…

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

Here goes…

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 20’s 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. It all seemed like a textbook, and that’s exactly what I was doing – following a narrative and waiting for the chapter where it all made sense. 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 I was tired often. I’d regularly collapse knowing something was wrong, but not what.

Once I entered my 30’s, 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. 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, but I couldn’t really execute it; like watching a gymnast somersaulting, I could see how it worked, but couldn’t somersault my own 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 30’s (first as a mental health worker, and then as a support service designer) 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 1980’s, 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 1990’s, I could be a coolly aloof student, or a boffin-like employee. In the 21st century, things got noticed. Or maybe I was just learning more. Maybe… maybe someone did have a clue, after all.

And so it was that I started the long journey towards the realisation that I was autistic. In time, I’ll share the things that helped me to acknowledge it, how I was assessed, and what difference it has made.

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. I’ve realised something rather wonderful instead…

We all co-create the reality we find ourselves in from one moment to the next, based on our experience, learning, and best-guesses. 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 want “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. Hopefully you’ll start your very own chat – with yourself and the people you choose to involve – before too long.