Suffering fools: an Aspie perspective

As a person on the autism spectrum, I’m often told that, as a result of poor Theory of Mind and a lack of empathy, I am remarkably intolerant of people who do not share my opinions. This is not true at all. I’m remarkably intolerant of people who do not share my knowledge. That’s something different altogether.

I mean, if I know something, everyone else should know it too, right? How can they not? Are they stupid? Yes, poor Theory of Mind and a lack of empathy means I struggle not to be a dick to those less well-informed than me.

This wouldn’t be a problem if not for the fact that I know pretty much everythingThat’s another consequence of my autism – I’m obsessed with facts, I have no problem recalling information, and I care more about being right than people’s feelings. Whenever at job interviews I’m asked about my weaknesses, I reply that I’m a perfectionist and sometimes I work too hard (ha ha), and then quietly slip in that I don’t suffer fools gladly.

That’s an understatement – I don’t suffer fools at all.

Over the years I’ve learned to control it, mostly. I’ve come to understand that people don’t spend their time looking up facts and figures and memorizing them, so my favourite pastime is educating others about things that interest me and should therefore, by rights, interest all of mankind – the equivalent ranks in army, navy and air force, the reason the days of the week are so named, what distinguishes a barque from a barquentine, a brig and a schooner, and so forth. I’ve learned to appreciate that people might not have had the opportunity to come across these facts in their everyday lives and therefore I am more than happy to address the gaps in their knowledge – I’m a giver, you see.

But what I cannot tolerate – what really brings out the beast in me – is when people are unaware of things I think they really ought to know. Things that you don’t have to go and look up to understand. Things you couldn’t have missed unless you’ve chosen to switch off your brain and walk blinkered through the world. That’s when I go ‘full Aspie’.

Like when I meet someone who doesn’t know who won the Second World War. Or who the belligerents were. Or that Hitler was a bad guy.

How uninvolved with the world around you would you have to be not to know that? You didn’t know about the Arctic convoys or PQ17? Fine. Didn’t know about kamikazes or the Battle of Leyte Gulf? Forgivable. Didn’t know Hitler was a genocidal madman? Oh come on!

The reason I bring all this up is because I’ve got in a little trouble with a work colleague. She’s very nice and she does the job fine, but boy is she ill-informed about the world. I’m not sure I’ve ever met someone quite as ignorant as she is, and it is triggering all my worst behaviour.

Right off the bat, she didn’t know what Brexit is. Admittedly, nobody does right now, least of all our politicians, but you’d have to be living under a rock not to know there was a referendum on the UK’s membership of the EU, we voted to leave by a small majority, and it’s torn our country apart for the past three years. Her excuse – ‘I don’t watch the news’ – makes me want to tear my hair out, or would if I had any. How she’s avoided hearing about Brexit, when it is the dominant topic on sitcoms, panel shows, current affairs programmes and at family gatherings, is nothing short of a miracle. What next? Who’s Trump?

Another time she came in all excited to tell me she’d seen a document – no matter how many times I correct her, she seems incapable of using the word ‘documentary’ – that said autism is caused by vaccination, and isn’t that amazing? Rolling my eyes, I said it might have been, twenty years ago before it had been thoroughly debunked and is now only believed by celebrities, crazy people, and whatever overlaps there are between the two. I proceeded to tell her all about the MMR scandal, and how, far from ruining his life, Andrew Wakefield is now a feted celebrity in America with no less than Elle Macpherson as a lover.

‘Elle who?’ she asked.

‘The supermodel? Nicknamed The Body? Magazine covers, catwalks, movies, TV? Was in Friends as Joey’s roommate? Ring any bells?’

‘No.’

‘Moving on.’

The next snafu was when she insisted that September 11 was an inside job and the Twin Towers were brought down by explosives in a controlled demolition, which inspired this rant (9/11 – the Truth) a few weeks ago. In the course of that conversation, it became clear she didn’t know who Osama bin Laden was, had never heard of Al-Qaeda, didn’t know why Palestinians might be upset with America, wasn’t aware of the previous attempt to blow up the Twin Towers in 1993, had zero knowledge of how the Twin Towers were built, and thought that despite its name being the World Trade Center, it was residential. But no, she was convinced it was the naughty government that did it and nothing I said would change her mind.

Another time I discovered she had never heard of the Cold War, or the USSR, or knew that we pointed nuclear missiles at each other with our fingers hovering over the launch button for forty years. Her excuse this time gave me a nosebleed – ‘I wasn’t around then, it was before I was born.’

Yup, we can’t know anything that happened before we were born. Since I was born in 1979, I don’t know who The Beatles were; don’t know about the moon landings; slavery; the Holocaust; Queen Victoria; Vietnam; Woodstock; the Kennedy assassination; or Martin Luther King, Jr. If only there were some way I could discover information about the past, information I could access from anywhere in the world with a mobile phone signal, whether in written, audio or visual form…you can see how hard I had to work not to call her out on this bullshit!

When my manager asked me how things were going with her, I was honest. She’s a good worker, she’s good at her job, but oh my gosh I just want to scream at her for being so…I don’t know what word to use. If she was on a quiz show, I’d be shouting ‘idiot’ and ‘moron’ and ‘dumb-ass’ at the screen, like I did this evening to the guy on The Chase who thought Charles de Gaulle was from the Middle Ages. But I don’t think she is ‘thick’, for want of a better word, just completely blissfully ignorant of anything you might expect a 30-something to know.

My manager told me I had to accept that not everybody is into the same things as me. Fair enough, I said: maybe she’s just totally cut off from politics so doesn’t know about Brexit; wasn’t properly trained, so doesn’t know that vaccines don’t cause autism; has never heard of Elle Macpherson because she’s never opened a magazine; believes whatever rubbish people tell her as she has zero knowledge of geopolitics or structural engineering; and is unable to learn about the past without access to a time machine. Okay. It drives up my blood pressure, but I’ll find a way to get past it.

But I really struggled to hold my tongue when I discovered, in a conversation about the murder of Lyra McKee, that she’d never heard of the IRA.

‘The IRA.’ Blank stare. ‘The Irish Republican Army.’ Blank stare. ‘Oh my god, are you seriously telling me you’ve never heard of the freaking IRA? The Troubles? The army patrolling the streets? The bombings? The Guildford Four? The Birmingham Six? Bloody Sunday? They fired mortar bombs at 10 Downing Street. They killed the Queen’s cousin.’

‘When did it happen?’

‘Since the late 60s.’

‘Before my time.’

‘They blew up the BBC in 2001. You’d have been 14.’

‘No, I don’t remember that.’

Well, I got cross. I got cross because it frankly boggles my mind that somebody can live in this country and not know that for a period of thirty years, 3500 people were killed on our streets either for or because of the cause of Irish Republicanism. I got cross because I grew up in the 1980s, and even as a child was well aware of the risks of bomb attacks whenever I went to town, got on a train or saw an unattended bag. And I got cross because I was profoundly affected by the 1993 deaths of three-year-old Jonathan Ball and twelve-year-old Tim Parry, a boy almost the same age as me, killed by an IRA bomb planted in a town centre.

It more than boggles my mind – it offends me that somebody should be so ignorant. She will have come across it multiple times in her life – at school, on Remembrance Day, in films and books and music and everyday conversation. She knows all the words to Zombie by The Cranberries and has seen the music video, what the hell did she think that was all about? It means she’s chosen not to take it in, not to pay attention, not even to notice it, and whether it’s my autism or just me, I find that impossible to understand.

But the real bust up, the real head-to-head, came from something small and insignificant, as do all straws that break the camel’s back. It came when she picked up a roll of fly paper with the words Fly Paper on the side and said, ‘What’s this?’

‘Fly paper.’

‘What’s fly paper?’

‘You don’t know what fly paper is?’

‘No.’

‘Oh my god, have you spent your whole life living under a rock with your eyes closed, how the hell can you not know what fly paper is?’

‘Because I don’t, okay? And you having a go won’t change the fact that I don’t know what it is, so why don’t you just tell me?’

‘It’s sticky paper that you hang up to catch flies!’

And I won’t tell you what I said next. My manager tells me I need to be more tolerant of people who have had different life experiences than me. I get that, I do, but surely there are limits, right? I wouldn’t get annoyed with someone who has genuine reasons for their ignorance –  they have a learning difficulty, they have only just moved here from another country, they’ve been in a coma the past fifty years – but someone who is, by all accounts, ‘normal’ has no excuse or justification for being so ignorant.

Like I said, maybe it’s my autism or maybe it’s just me, but I cannot understand how people like this even exist – people who either don’t know or don’t care who’s running the country, don’t know about major things that are happening or have happened in the world around them, don’t even know about pop culture. What on earth do they do with themselves? What do they talk about with their friends? I don’t get why somebody would come across a word they don’t understand, or hear something referenced that they’ve not heard before, and not look it up. Do people do this? Go through life so happily ignorant that they simply skip over everything they see and hear that they don’t understand? How can they understand anything?

Let me put it this way. If you don’t know about politics (Brexit, Trump, the growing polarisation of society); current affairs (Climate Change, #MeToo, terrorism); pop culture (Star Wars, Kurt Cobain, Batman); high-brow culture (Jane Austen, the Mona Lisa, Picasso); science (medicine, plate tectonics, evolution); or history (Pompeii, the Crusades, Pearl Harbor); then what the hell do you know? And where have you been all your life? And why should I listen to anything you have to say? Because without knowledge to back it up, your opinions are worthless.

Hmm. So maybe I am remarkably intolerant of people who don’t share my opinions. Or maybe I just don’t suffer fools gladly.

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Autism and Empathy

I consider myself a reasonably intelligent fellow. I have a Diploma of Higher Education, two Bachelor’s Degrees and a Master’s, and got a distinction for each. And they cover some pretty dry subjects, too: the history of science and technology, history of medicine, the psychology of violence, English language, linguistic and representational philosophy, psychoanalysis, criminology, imperialism, archaeology, urban development, and the history of warfare, with a smattering of classics, film history and creative writing thrown in for good measure. I find it pretty easy to switch between arts, humanities and social sciences and by the measure of society, it is not a stretch to describe me as academically gifted.

The thing with academic intelligence, however, is that it doesn’t necessarily translate well into the ‘real world’ of feelings, relationships and social interaction, particularly when you have autism. The other day, for example, I was trying to explain to someone how, if a person talks in a loud voice and uses expressive hand gestures, I interpret this to mean that they’re angry (this was a subtle way of asking her to lower her voice and keep her hands inside the vehicle at all times, but it fell on deaf ears).

‘But you’re intelligent enough to know they’re not really angry,’ she said.

Well, yes, I know on an intellectual level that they’re not angry, just loud, but this actually changes nothing because my instinctive understanding is that they are, indeed, angry, and my physiological reaction is the same as if they were: my fight or flight mechanism kicks in, I get flooded with adrenalin, my hackles rise, and everything in my body acts as though I’m about to be attacked. That’s not something I can intellectualise away.

It is this difficulty interpreting or understanding another’s emotional state which makes people tell me that, as a person with autism, I am unable to empathise. And despite my broad education and academic intelligence, I have to admit that I’m really struggling to work out what this concept called ’empathy’ actually is.

The reason I’m wondering is because I have, of late, been incredibly emotionally fragile, which I have detailed in another post. I spent the most awful few weeks of my life crying over a little girl I’d never met called Jessica Whelan, who was dying of neuroblastoma. Something about the story touched me very deeply, and I internalised so much pain and sorrow that it was as if my own child were dying. I cried all day, every day. I could barely function, every day waiting for the news that she and her family had been released from their suffering.

When she finally passed, I had one last almighty cry and started to feel better. Instantly, the past few weeks started to feel weird, as if I had been in a fugue state. They have a funny colour in my mind (I associate things with colours in my head) – those weeks were yellow ochre, everything yellow ochre, when my world is normally pale blue. It was as though someone or something else had taken over me. I was an emotional wreck for weeks, just wasn’t myself at all. It was as if there was a ‘before’ and an ‘after’, and the inbetween was something else.

Describing this to people, they’ve said things like, ‘That’s because you’ve never felt empathy before’, or ‘you’ve never been able to empathise’, or ‘I thought people with autism couldn’t empathise’, or ‘as someone with autism, you’ve never had to learn how to deal with emotions when you empathise with people’. In fact, every single person I’ve spoken to has used the word ’empathy’, or a derivative of it, and this is what has me flummoxed: just what the hell is empathy?

As I have always understood it, sympathy is when you feel for someone, without internalising their pain, while empathy is when you feel with someone, taking on their viewpoint and experiencing their emotions for yourself. As an illustration of the distinction, one of our chickens died the other night. I thought it was a shame, but that was about it. When I told my wife, however, she cried for half an hour. I sympathised with her, in that I recognised she was in distress and tried to help by making her a cup of tea (that very British panacea), but I didn’t empathise with her because I didn’t feel the same emotions (i.e. I did not get upset and cry with her). Seems pretty straightforward.

But really, it’s not. When that little girl was dying, why did I feel such pain, and for whom, and in what way? I couldn’t bear that she was suffering and dying, so does that mean I was feeling for her (sympathising) or feeling with her (empathising)? Or was I doing both simultaneously? Or, in fact, neither? Because much of my pain was the result of imagining it was my child suffering and dying, does this mean I was actually empathising with her parents, by adopting their viewpoint and experiencing their pain? (Which seems a little arrogant, because how could I possibly experience the pain of losing a child without having done so?) Or was I simply imagining my own pain at the possibility of losing my own child, which means I wasn’t actually empathising at all but was indulging in a selfish, masochistic grief-fantasy?

This is what is confusing me. Being autistic, I tend to approach my emotions from an intellectual viewpoint in an attempt to understand them and regulate them, and maybe I’m thinking too much into it, but I can’t understand how a person could ever be said to empathise with another. How can a person experience the feelings of another, or understand their viewpoint? We are all different, and we think and feel differently, and it would be presumptuous in the extreme for someone to think they know, understand and echo how I am thinking and feeling. Surely when we ’empathise’, what we really mean is that we are using our imaginations to think how we would feel in a given situation, so instead of feeling someone else’s pain, we’re feeling our own (imagined) pain?

If this is the case, then it is wrong to say that people with autism cannot empathise, because we can certainly imagine how we would feel in a given situation and project that feeling onto the situations of others. Indeed, if we could not do that at all, we would fit the criteria for psychopathy, and people with autism are clearly not all psychopaths. I think the belief that people with autism cannot empathise stems from our inability to accurately interpret the emotional cues of others in interpersonal communication – if we cannot work out another’s emotional state, such as thinking they’re angry because they’re loud, how can we match emotions (empathise) with them? It is therefore a problem with social communication, and not an emotional disability.

On the other hand, if we bring in the idea of personal distress, which is seen as a subset of emotional empathy, this could answer what is going on in the autistic mind. Personal distress is a notion in psychology where witnessing the suffering or distress of others triggers anxiety, pain and distress in yourself, so rather than truly empathising with the sufferer you have a self-centred emotional reaction to their suffering. Essentially, it makes you uncomfortable because you don’t understand it or know how to deal with it. Arguably, this is what happened to me over the past few weeks – I saw someone in distress and it made me distressed, saw someone suffering and accordingly suffered. Indeed, people with autism apparently have much higher levels of personal distress than neurotypicals, since it’s a self-centred, immature version of empathy (and it’s questionable whether it’s a form of empathy at all). And given that one response to being oversensitive to the suffering of others is to withdraw from the source of this discomfort, this is another reason we are seen as unempathetic.

I think the truth of the matter is somewhere in between all this theorising. Yes, Jessica Whelan’s distress, and that of her parents, caused me great personal distress, making mine a self-centred, unempathic response. At the same time, however, I put myself in the place of her parents and, using my own daughter as a frame of reference, empathised with their pain. In addition, I sympathised with their predicament. And I pitied them. And I felt compassion for them. And for a few weeks cried all day, every day.

I think that is the important thing, the thing to remember. Regardless of what words we use to describe or define it, the thing to take away from this experience is that, for whatever reason, Jessica Whelan pierced me to my very core, exposed something I’d never felt before, and reminded me how important it is to make the most of each day that we get to spend on this earth with the people we love. I may struggle to understand empathy, but the pain I felt was real and profound.

And if I need a word to describe it? Let’s just say I’m ‘sensitive’.

How Fatherhood Changes You

I’ve been putting off writing this post, for reasons that will become clear later. For now, suffice to say, my head has not been in the right place.

They say that parenting changes you, but I’m not so sure that’s the case. I always figured it simply brought to the fore those qualities you already had lying dormant within you – self-sacrifice, responsibility, generosity, and what have you. Being a dad hasn’t made me who I am – it has simply shone a light on some of those hitherto undernourished and unappreciated aspects of my character and allowed them to flourish. For better and for worse.

I’ve mentioned many times before how parenting has brought out my paranoia, so much so, in fact, that it’s not worth repeating it here. I’ve also discussed how fatherhood has turned me into a crap dancer with a penchant for atrocious puns, but I’m pretty sure these things are normal.

Slightly more tragic was my wife’s revelation, a couple of weeks ago, that I have become rather boring.

Boring!? Surely not. I’m still young. I’m still energetic. I’m still…actually, she has a point. I have become a little old of late.

See, when you spend the better part of your day looking after a toddler, especially when you define your role as keeping her safe, you tend to become a little over-serious in your outlook. Couple that with being knackered all the time, and I invariably greet my wife’s ‘let’s go to the pub, let’s go to the park, let’s go to the shops, let’s go to the zoo, let’s go to Spain’ with ‘can we not and just say we did?’ Which, admittedly, isn’t the behaviour of the young, vibrant dad I set out to be.

So I have tried to soften a little. My wife Lizzie said she wanted me to be more juvenile, more playful, more fun – so I threw a glass of water over her. Apparently, this wasn’t exactly what she meant. Nor was pinging her bra-strap whenever her back is turned or hiding her breakfast/drink/phone every time she glances away. And shooting her in the back of the head with a Nerf gun was very much a bad idea.

But things seem to be a little better. There are more pillow fights and visits to soft play, less arguing about risk assessments and budgeting. That’s one of the compromises you have to make as a parent.

The other MASSIVE change I have noticed in myself as a result of fatherhood, and something that is affecting my life, is my level of sensitivity towards anything that connects parenting, children and pregnancy with suffering, pain, disappointment and death.

Perhaps because of my autism, I’ve always been more sensitive towards the suffering of animals than people. In fact, I used to get myself so upset over nature shows that I couldn’t watch them as a child and I avoid them as an adult, whereas I loved true crime – it didn’t matter how nasty or gruesome it was, it didn’t really affect me. I’ve read all about James Bulger, JonBenet Ramsay and the Lindbergh Baby. I even did my Masters dissertation on infanticide, researching over four-hundred newborn child murders in Victorian Hampshire without batting an eyelid.

But fatherhood does something to your sensitivities. I first noticed it when my wife was expecting. I decided to reread Moon Tiger by Penelope Lively, which I did for A-Level, and despite knowing for twenty years that there’s a miscarriage scene, despite never having been bothered by the miscarriage scene, I read the miscarriage scene and started to cry. Weird, I thought – it’s the woman who’s meant to get hormonal.

When my Izzie was born and placed in an incubator, and my wife Lizzie was haemorrhaging and having transfusions, I sought out the hospital’s chapel for some rest and reflection, despite not being at all religious. Inside they had a prayer tree, with prayers written on paper leaves and pinned to the branches. One simply had a name, a date two days previously, and two devastating, soul-destroying words: ‘born sleeping’. Let me tell you, it killed me.

Since then, every time I hear about a miscarriage or a still birth, I well up. But it has become worse as time’s gone on. The more I’ve grown into my role as father, the more afraid I’ve become at the prospect of losing my daughter, whether through illness or accident, the more sensitive I’ve become to the suffering of all children. And I don’t know if sad stories about children are in the ascendancy at the moment or if I just never noticed them before, but they seem to be everywhere.

I cried over Ben Needham. I cried over the little boy killed by a dog a few weeks ago. Standing behind the counter of the children’s hospice shop I work in, I cried at the pictures of children with tubes in their noses, despite having seen them hundreds of times before. I cried at photos of children bloodied and shell-shocked in Syria. I’ve cried, and I’ve cried, and I’ve cried.

And then two weeks ago I saw this picture, and all the other tears I’ve cried seemed as nothing [WARNING: DO NOT CLICK LINK IF SENSITIVE]. It is a photo of a little girl called Jessica Whelan who is dying of neuroblastoma, and instead of the usual pictures of cancer kids – visiting Disneyland, playing games, smiling and ‘being brave’ – it captures the reality of a terminally ill child. The pain, the sorrow, the indignity, the goddamned unfairness of it all. And since then, my emotions have been all over the place.

People say, ‘I can’t imagine what that must feel like for the parents,’ but the trouble is, as a father I can imagine it, and just imagining it is more pain than I can bear. But I can’t escape it because it’s in my head now. I lie awake in bed at night, wondering about the letters I’d write to my daughter if I was diagnosed with terminal cancer; I wonder how she’d cope if I wasn’t here; but more, I wonder how I’ll cope if she’s the one with the cancer, and how I’ll explain it to her, and how the world can be so fucking cruel.

The truth is, what we as parents, and what I as a father, have to learn, is that our children do not belong to us – they belong to the Universe. We are only borrowing them for a time. So we have to make the most of every day, build happy memories for however long we are gifted with the opportunity to do so, because it could all come crashing down in a heartbeat.

And in the meantime, I need to learn to stop holding on so tight, find a way to stop crying all the time, and work out how to grow a thicker skin, or else I’ll be an emotional wreck before the year is out.