Greta the Aspie

There’s a strange assumption I’ve come across of late that, by dint of my autism, I must necessarily be a fan of other people on the spectrum. This is particularly odd when the only point of similarity between us is our diagnosis. As a tattooed, shaven-headed, guitar-playing proponent of punk, rock, metal and grunge, is it really likely that I’m going to listen to Susan Boyle simply because she’s Aspergic? And as a fan of mostly horror and crime fiction, am I going to enjoy Chris Packham’s meandering nature memoir because he, too, is on the spectrum? (Short answer, no).

So, in a week during which 16-year-old autistic activist Greta Thurnberg dominated the headlines by not only arguing her case at the UN Climate Action Summit in New York, but also giving the Leader of the Free World the worst case of stink eye I’ve ever seen, everywhere I go it’s assumed I must be a fan. People keep asking my opinion of her, and of climate change, and whether we should be running for the hills screaming, ‘The sky is falling, the sky is falling!’ all because we both happen to have Asperger’s Syndrome.

On the one hand, it’s rather patronising to presume that, because we’re both autistic, I have specialist insight into a 16-year-old girl from Sweden who has made it her mission to beat everyone over the head with a virtue stick like a real life Lisa Simpson. On the other, it’s nice that people are talking to me, and since, as a result of my autism, I’m a keen observer of the human condition (even if my conclusions are sometimes way off base), it probably makes more sense to ask me than some random weirdo who sleeps on a park bench and smells of cheese.

So what do I think of Greta Thurnberg?

I have mixed feelings. I think she’s done an amazing job almost singlehandedly putting environmentalism at the centre of the political agenda and bringing the issue of climate change to the forefront of everyone’s minds, and there’s little doubt her autism has played a massive part in this – her obsession, stubbornness, and dogged refusal to be put off by any criticism or negative feedback have all served her well. She’s demonstrated in the best possible way that one person can change the world, if only they work hard and believe in themselves enough. And unlike some environmentalists (*cough* Prince Harry *cough*), she practices what she preaches, travelling by trains and yachts instead of cars and planes. Kudos.

However, the same autism that has enabled her to succeed has, I think, exposed her to legitimate criticism in terms of her message, and created genuine concern about the potential impact of being so notorious so young on both her short-term and long-term mental health.

Climate change is clearly her obsession, but as with many people on the spectrum, while we are fabulous at learning facts and figures, we often lack a genuine understanding of the topic – we’re great at studying the trees, but not so good at putting them together to see the forest. You know, big picture stuff. There is certainly a tinge of millenarian hysteria in her rhetoric, and while she has been emotionally restrained in the past, her speech on Monday was dramatic, scathing, emotional and scolding. It risked undermining the good that she’s done since nobody likes being lectured by a know-it-all teenager who thinks they can solve all the world’s problems because they’re better than you. I should know – as a teen I was insufferable, and, human nature being what it us, I never managed to convince anyone that my extensive knowledge of playground social interaction meant anything in the ‘real’ world. Strange.

Now, before you say I’m a climate change denier, I’m not. The science is unequivocal – the climate is changing. And anyone who ignores the impact of man on the environment and thinks it’s all a conspiracy to charge higher taxes simply doesn’t want to face the uncomfortable truth that we are a massive cause of this. That said, predicting the effects of anthropogenic global warming using computer models is on less sure-footing given our inability to accurately measure the influence of millions of different variables on complex weather patterns, ocean currents and ecosystems. I think much of the panic afflicting young people right now is from taking the ‘worst case scenario’ models. It’s ‘end of the world’ stuff, a doomsday cult with scientific backing, so it’s no wonder that schoolkids are crying themselves to sleep over our impending demise.

I’m not so pessimistic. I think we’re going to be seeing a turbulent few decades involving mass migration of people, increasingly frequent extreme weather events, and lots of highly-charged arguments about power sources and a diet containing less meat and more locally-sourced produce, but I don’t think humanity is going extinct. And the accusation that we’re doing nothing to combat climate change is just as selective a reading of the evidence as climate change denial. We’re not doing enough, certainly; we can definitely go further; but the very fact so many people are engaging with this issue shows that it is being taken seriously by large swathes of the population, including consumers, manufacturers, lobbyists and politicians (with the notable exception of Donald Trump).

Likewise, I fundamentally disagree with many climate change zealots who seem to think we can save the world by going backwards, banning cars and air travel and returning to a pre-industrial-type lifestyle. That genie is out of the lamp, and it’s not getting put back in. Through the natural earthly cycle, climate change is going to happen whether or not we change, so preparing for it is far better than trying to hold back the tide. We need more technology, not less. Look at how digital streaming services have massively reduced the manufacture of CDs and DVDs. Look at how 3D printers prevent the need for transporting goods from the other side of the world. Look at the new Sabre oxygen-hydrogen hybrid engine, which promises far greener air travel. These are the things that are going to let us reach a carbon-neutral society, not a bunch of Luddites throwing their shoes into the machinery.

When it comes to effecting change, I think Greta Thurnberg is right in targeting the young and will reap the rewards of this stratagem, but not in the way that she thinks. Far too many pressure groups and protesters (like Extinction Rebellion and many of Thurnberg’s student activists) seem to prefer standing on the outside shouting at ‘the Establishment’, and I have no truck with that that way of thinking. If you want system change, you do it from within the system. You train hard and work hard, you become an expert, you get into a position where you have the power to change things – you don’t piss and moan on a street corner. I don’t think the student strikes will change the world, but I think ten years from now, when those same students move into government and academia and industry around the world, that’s when things will change – from the inside.

As far as Thurnberg’s mental health goes, I do worry what kind of support she’s receiving. This is a person with diagnoses of autism, OCD and selective mutism who, by her own admission, has battled depression and anorexia and who is right now at the very centre of world affairs and media scrutiny. Of course, I’m not saying that this in any way detracts from her message or that she should be denied the right to express it, but as someone who has experienced breakdowns and burnouts throughout his life, I wonder how long she can keep it up. My saying this probably comes across as patronising in itself, and if so, yeah, I am, but that doesn’t change that, from my experience of those of us on the spectrum, her mental health is a legitimate concern and she should not be mocked by the President of the United States simply for being herself.

So, in summary, I think Greta Thurnberg should be applauded, not only for highlighting the issue of climate change, battling her way into the corridors of power, and ensuring the next generation of lawmakers and decision-makers will be concerned about the environment, but for practising what she preaches, even if I’m not entirely on-board with the severity of her message, and I have more hope about the future than she seems to be.

The way I see it, while climate change makes the future a terrifying unknown, we’re humans – we’re creative, adaptable, resilient and determined, and I have no doubt we’ve got this. Of course, climate change fanatics, and Greta Thurnberg herself, might call this hubris, since humans can also be stupid, selfish, backward-looking and incredibly resistant to change. It all depends on your perception of humanity, and whether you believe we are collectively a good or an evil. I’m prepared to think we’re better than Thurnberg thinks.

I hope humanity doesn’t prove me wrong.

Autism and OCD: the Sacred Half-Banana

Thanks to the nature of autism, many of us with the condition have other psychological problems that are either caused by our autism or overlap with it. Combine the rigid, obsessional thought processes associated with autism with the anxiety and poor coping mechanisms that are often part and parcel of living with the condition, and you have the recipe for obsessive compulsion. So it is, then, that at times of stress and anxiety we can slip into full-blown obsessive compulsive behaviour and lose all sense of proportion, driving the people around us to despair.

And when I say ‘we’, I mean my wife Lizzie.

And by ‘people around us’, I mean me.

And instead of ‘being driven to despair’, a better metaphor would be that I am steaming uncontrollably towards a mid-Atlantic collision with an iceberg on a dark April evening. All because of half a freaking banana.

It all started a month ago when we returned from holiday. Every night after I’ve put Izzie to bed, Lizzie goes around the lounge and tidies up the baby’s toys. And given that Lizzie’s other big obsession right now is buying toys for the baby, we have an awful lot of them. Before going to Toys R Us to get something, I just check the massive pile of plastic bags stacked up in the corner of the study, and odds are we’ll already have at least two of what I’m considering buying.

Anyway, Lizzie’s particular inclination is that all the toys have to go back complete – if the toy food blender has six shapes that go inside it, then when it goes back on the toy shelf it needs to have six shapes inside it. Not five inside it and one in the box of building blocks, but all six inside it. This is non-negotiable and woe betide anybody who forgets.

So, a month ago we return from holiday, play with Izzie for a couple of hours, and then I put her to bed as usual. Lizzie tidies the lounge and – gasp – half the toy banana from the kitchen set is missing. We have both halves of the tomato, the pepper and the carrot, and the three parts of the cucumber, but only one half of the banana.

In the normal scheme of things, you might think this is minor. I thought so myself, it being a two-inch long piece of yellow plastic with a bit of Velcro stuck to it. Unfortunately, I hadn’t realised that in Lizzie’s mind it was the Holy Grail and it had just been stolen from us by person or persons unknown.

My reassurance that ‘it’ll turn up eventually’ didn’t cut the mustard. Before the holiday, the sacred banana had been complete, entire, unsullied – Izzie had only been in the lounge a couple of hours upon our return, thus it could not have gone very far. We had to find it.

Many hours after midnight, having overturned the sofas, emptied all the drawers and cupboards, removed the building blocks piece by piece from their boxes, turfed the dog out of her bed, checked behind the fridge, in the cat litter and around the driveway (as if!), I managed to persuade an increasingly irascible Lizzie to come to bed, we’d find it later. Problem solved – or so I thought.

The following day we repeated the exact same process, double and triple checking all the places we’d already double and triple checked the night before. I ended up checking through the bins, the nappy bin, the freezer, inside the guitars, stretching my hands into deep, dark crevices no mortal ever dared to delve. Still no banana.

Long after midnight, I managed to persuade Lizzie to come to bed, where she tossed and turned all night, no doubt dreaming of incompleteness.

It was two-thirds of the way through the third day of the search, after putting the baby to bed and moving the sofas for perhaps the eighth time, that I finally declared enough to be enough. Actually, I think what I might have said was something along the lines of, ‘I’m all out of f**ks to give about half a goddamned plastic banana! Don’t ever mention it to me again, I don’t care anymore, there’re another two plastic bananas in the corner of the study anyway, for God’s sake, let me live, why won’t you let me live!’ And suchlike and so forth.

Two days later, Lizzie stopped moving the furniture. Two days after that, she stopped talking about the banana.

But the stage was set. The anxiety was there. And it manifested itself late every evening with the words, ‘Have you seen…?’

Every evening for the past month, Lizzie has lost something and pressganged me into helping her find it. Mostly it’s Izzie’s hairclips, less than an inch long, or her dummies, transparent. Sometimes it’s pieces of paper, a scrap torn off the back of an envelope on which she has written the world’s most important information. Quite often it’s socks, which necessitate going through the sleeves of every item of clothing we own in case it’s become lodged inside in the wash. Occasionally it’s earrings, tiny, insignificant, nigh-invisible earrings. Every single evening, give or take.

I’ve been under the sofa so many times now, I can describe it better than the back of my hand. The inside of the dustbin no longer holds any mysteries. The sound of building blocks being removed from the box one at a time fills me with dread, and every time I hear the words, ‘Have you seen…?’ my blood chills within me. No, I haven’t seen it. But I guarantee we’re spending the next two hours searching for it.

There are two possibllities for explaining this behaviour. The first is that, because both sets of our parents were away, Lizzie has been anxious for the last month, and this anxiety has triggered an obsessive need to have control over the minutiae of our household to distract her from her own feelings of vulnerability. Once triggered by the missing banana, her mind became stuck in a loop of repetitive, obsessive behaviour, fostered by her rigid autistic way of thinking.

The second is that she’s faking all these disappearances and we’re still searching for that flipping plastic banana!

Which does, to be fair, remain something of a mystery…

Five Months of Autistic Parenting, Part 3

Having Asperger’s Syndrome means you struggle to say the ‘right’ thing, misinterpret what other people are saying, fail to give due diligence to the feelings of others, and don’t appreciate that people have different needs. It also makes you rather self-centred. Mostly I can use my intellect to overcome my natural shortcomings in these areas, but the more tired I become, the harder it is to do that.

Having two tired new parents with Asperger’s in the same house with a five-month-old baby is a recipe for disaster.

This morning, for example – Lizzie is spending the day in Southampton shopping with a friend and she’s taking Izzie with her. Since I’m in desperate need of a break, I’ve been looking forward to today – for once there are no support workers, social workers or family members coming over, no urgent writing deadlines, no charity shop, no cooking, so it’s all mine, yes, all mine (he says, rubbing his hands together with a maniacal grin). I can soak in the bath with a book, make my model that has sat untouched for five months, go to the local coffee shop in the village and watch the world go by. Or I can mooch about in my underwear and watch rubbish TV. My day. Bliss.

And Lizzie would know that if she’d been listening and considering my needs.

So I’ve been up since five, fed the dog, the cat and the chickens – not to mention the baby – and I’m just waiting for Lizzie to hurry up and go when she says, ‘Oh, by the way, I want you to mow the lawn today.’

The lawn takes two hours to mow because we have a rubbish mower and a massive lawn. I have to empty the grass collecting box around twenty-six times during mowing. And it’s raining.

So I said, ‘No. Not a chance in hell. I’d rather poke out my eyeballs. You want me to do chores while you’re out on a jolly? How dare you even suggest that? This is my day.’

In hindsight, a simple, ‘No, I’d rather not,’ would probably have sufficed. Yes, I overreacted. And then she overreacted to my overreaction. And that’s how it tends to go at the moment. If we were less tired, we’d probably be able to rein ourselves in, realise the other person wasn’t being belligerent or deliberately insensitive, they just hadn’t realised their partner had been looking forward to a day off. But we flip out instead.

That is, unfortunately, part and parcel of having autism, and only to be expected.

What is not so obvious is why, as a result of my Asperger’s, I find it so difficult to entrust the care of my baby to others.

It would make life so much easier, and would have done over the past five months, to have babysitters. Lizzie has a remarkable ability to go out and then not think about home, or babies, or really much of anything (miaow!). I, however, find it nigh impossible to switch off.

The autistic brain is very susceptible to obsession – I’m using up my ‘day off’ writing about the baby! But this could also be the result of the fact that the autistic brain is also so structured that your thoughts can go round and round and round, growing bigger and more frantic with each circuit. Since Izzie was born, I haven’t rested, haven’t dropped my guard for even a moment – I am a dad, and that means constant vigilance, care and concern. After years of learning that people let you down, it’s very difficult to trust anyone else with the most precious thing in my life.

This goes for Lizzie too. As I have mentioned in previous posts, thanks to difficulties with Theory of Mind – that is, understanding how other people think – I struggle to comprehend why people would do things in a different way to me (because clearly my way is the best, which is why I’m President of Earth). I therefore find it very hard to step back – I want to take over, because Izzie is my baby and I know what she wants and I’m the best at doing it so back the hell away. This has inevitably led to friction between me and Lizzie and I realise now that I’m a total control freak.

But that’s because control keeps me safe. I’ve cleverly structured my life to avoid stressful situations and thus remain asymptomatic. If I go out to a social situation, I drive so I can leave any time it becomes too much. I sit on the end of tables so I can slip out unnoticed. I actively shun noisy and crowded environments. And so if I let others take over, I can’t ensure Izzie’s safety. I can’t be certain she’s getting what she needs, which is me, because I know best.

You see? Even I can see that I need to let go, step back, have a break, learn to trust others, and stop worrying so much when I’m not with her. But can I?

Perhaps the biggest obstacle to this is, again, my autism. I’ve always struggled to understand relationships – how to form then, how to keep them, what they mean – and I’ve only ever managed to have one friend/partner at a time. If I have a second friend, or a friend other than my partner, I feel as though I am somehow betraying the people I care about. If I have a friend, then it means Lizzie isn’t enough, and how can I say that? Of course, Lizzie has plenty of friends and I don’t feel she’s betraying me, but I resist any overtures of friendship because I don’t want to betray her.

The same is true of Izzie. If I let someone look after her, I feel I’m somehow betraying her, letting her down. I’m failing her as a dad. People tell me to stop trying to be perfect, because I’m only human, but that is like an admission of failure. Why can’t I be both?

That’s the biggest lesson I have to learn from five months of autistic parenting – I have to learn how to let go and relax. If I’m not careful, my ten-month review of autistic parenting will describe how I don’t let Izzie out of my sight and I haven’t left the house for weeks. Or it’ll just be gibberish.

Bursting the Baby Bubble

Despite my best efforts to forestall it – ignoring my diary, avoiding the newspaper and keeping the calendar on last month – time is marching inexorably onwards. Izzie has been registered and is now a member of a wider community to which I must soon return, and although I’m still swimming against the current, I can’t delay the inevitable much longer.

For the past week I’ve lived a wonderfully wholesome routine. I rise around 7.30 and prepare a bottle, and while Lizzie feeds Izzie I feed the animals, make breakfast, and have my sacred first coffee of the day. Then I load up the car and take Izzie and Ozzie for a walk in the forest. When I return, I sort out a few things, have lunch, deal with visitors, have a nap, and then all of us go for a walk around the village, which is the closest thing to heaven I can imagine.

After dinner I prepare the night feeds, Lizzie has a bath and goes to bed, I work on this blog or watch something while cuddling the baby, and head upstairs around 22.30. It generally takes till midnight to settle Izzie, with a couple of nappy changes and feeds overnight lasting around an hour each. This is my routine, and I love it.

People with Asperger’s Syndrome live by routines and struggle to cope with change. This is to be expected, given our rigid thinking and the difficulties we have processing new information, but Temple Grandin has an alternate theory. A remarkable woman with autism who designs slaughter houses, she believes that those of us on the spectrum are like prey animals with an overactive nervous system no longer useful in modern life. If a cow hears a sudden noise, it could be natural but it could be a predator, so it reacts. If it sees something new, it could be nothing or it could be the cause of its death, so it avoids it. The cow is happiest doing its usual thing of chewing cud and pooping pats because that keeps it safe.

People with autism are those cows. When we encounter anything new, different, unexpected, it sets off a fight or flight response disproportionate to the reality. Our bodies are flooded with adrenalin, increasing our stress levels and making it even more difficult to think clearly and cope with the situation. Hence we structure our lives to keep the unknown to a minimum and avoid stressful encounters.

Unfortunately, people with AS are also highly susceptible to forming obsessions, and when these combine with our love of routines and aversion to change, we can lose ourselves in a ‘perfect storm’ of self-imposed dissociative isolation.

I am in a baby bubble and I don’t want to come out.

Ten years ago I was part of a crew of fifty that sailed a tall ship across the Atlantic from the Canary Islands to the Caribbean. Those four weeks were some of the best of my life. Not because I was popular – I was unanimously voted the person most likely to be thrown overboard and they even printed me out a certificate that said as much – but because time was divided into a rigid, unchanging rotation of the watch system and the whole world existed in a space less than two-hundred feet long and thirty feet wide. I knew where I was meant to be, what I was meant to do, and who I was meant to do it with. I ate, worked, slept, in a fixed, tireless routine. And it suited me just fine.

As we neared our goal, after eighteen days with nothing between us and the horizon but whales, dolphins, flying fish and the occasional distant tanker, the rest of the crew looked forward to seeing land again. But I was so happy in my perfect bubble i wished there was no such thing as land and we could keep sailing forever. That first sight of Barbados, an ugly smudge between sea and sky, broke my heart.

The past three weeks my life has revolved around being the best dad and partner I can be. Even as I write this, Izzie is asleep in my arms with her mouth wide open, ‘catching flies’. The outside world has ceased to exist. I haven’t worked, paid any bills or checked my bank balance; I haven’t opened my post or returned my library books, and my emails remain unanswered. My life has become routine and obsession.

But there are smudges appearing on the horizon. If you lock the world out it has an insistent way of banging on the door until you have to let it in. I’m lucky in that I’m a (starving) writer so can work from home; if I had a regular job I’d have been back last week. But I can’t bring myself to send off another chapter to the publisher, another article to a magazine, write something that isn’t about Izzie and Lizzie and me. Not yet.

My baby bubble is going to burst and the real world is going to come flooding back in. But for today, at least, I have all that I need right here.

?????????????
I mean, why would I want anything other than these two darlings?