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’.

A total lack of sympathy

What’s really been getting my goat lately is that people won’t allow me to moan.

‘I’ve had five hours sleep in the past four days.’

‘Well that’s what happens when you’re a dad,’ they say in this incredibly patronising tone of voice, as if I didn’t know that.

‘All of my clothes are covered in snot and vomit.’

‘That’s called “being a parent”,’ they reply with smug self-satisfaction.

‘I’m completely exhausted and I haven’t eaten a proper meal in days.’

‘We’ve all been there.’

‘But you’re not there now! I’m the one bursting my baby’s snot bubbles and trying to clean it out of her hair at four in the morning! I’m the one sitting up all night listening to the mucous rattling in her throat in case it it develops into something worse! And I’m the one who’s tired, hungry, dirty, smelly, and more than a little volatile, so I’d appreciate a little more sensitivity to my plight from some well-rested, well-fed person standing in clean clothes, thanks!’

I have discovered, since the baby started with her cold, that if you complain about parenting you get no sympathy whatsoever. It’s weird –  I figured that, because other people have struggled just as you have, they’d be more empathetic about your situation, but it’s the opposite. Anyone who has raised a child of their own in the mists of history tries to make you feel like an asshat for saying that, God forbid, you don’t always enjoy the feeling that your brain is about to burst right through your forehead.

Maybe that’s because there’s this notion that not only are parents meant to suffer but they’ve chosen to suffer. And I get that. I knew going in that it would be hard. I knew that I would suffer, and I accepted that in order to get the good bits of having a child, I was going to have to face the bad. But when the baby has a cold and I’ve had so little sleep I’m hallucinating, for God’s sake let me have a little moan about it!

It doesn’t mean I don’t like being a dad, or that I’m such an idiot I hadn’t realised it would be hard, it simply means I’m letting off steam, which is human, and natural, and healthy. I’m pretty sure even the most positive of people come home some days and say, ‘Man, if life is a shit sandwich I’m the filling right now!’

What is not helpful is when, instead of people saying, ‘Hang in there, lad,’ and slapping you on the shoulder, which is really all you want and need to buoy you up, they shut you down, belittle your struggles, and marginalise your pain.

The worst thing is when you say, ‘This is so hard,’ and someone replies, ‘Well, just imagine how much harder it would be if X, Y or Z,’ as though you’re not allowed to complain, as though your difficulties don’t matter and aren’t important because other people have it harder, and that’s just so wrong.

One of the best things I was ever told, and something I firmly believe, is that all suffering is relative.

I was sixteen and on my first date – she was a scary girl with a nose ring, tattoos and leather jacket. We met by a pond in the February cold and huddled together on a bench as the world froze around us. And in the dark we talked about things that really mattered to our sixteen-year-old selves: dreams, poetry, UFOs, alternative history, magic, the Illuminati, emotions, spirituality, The X-Files, parallel dimensions, the faking of the moon landings, Nirvana, and what it means to be a human. Ah, those wonderfully naive days before I discovered her whole identity was based on Alanis Morrisette lyrics and Mia Wallace’s character in Pulp Fiction, and I found that I didn’t actually believe in UFOs, alternative history, magic, the Illuminati, or the faking of the moon landings. The mid-nineties: simpler times.

Anyway, at one point the conversation got round to problems, because we were teenagers, after all. I told her about my chronic loneliness, but qualified it by saying it was very minor compared to the problems other people had.

‘Don’t do that,’ she said. ‘Don’t dismiss your problems. All suffering is relative. A starving African’s need for food is his worst problem; your loneliness is yours. It doesn’t mean your problem doesn’t matter.’

And while she might have turned out to be full of it, she spoke a lot of sense just then.

So yes, in the general scheme of things, a few nights of missed sleep don’t amount to much; yes, other people have it much harder; and yes, I chose to become a dad and therefore any struggles I go through are willingly faced; but telling someone who has had five hours of sleep in four days and is wearing a T-shirt encrusted in dried snot and sick that what he’s going through is trivial and unimportant will get you knocked off his Christmas card list before the next patronising syllable escapes your condescending lips.

So next time you hear me gripe, please, pretty please, instead of marginalising my feelings, just nod sagely and say, ‘You’re doing a good job.’ That’s all I need to hear.