So SAD

I’ve written before about suffering from Seasonal Affective Disorder. Every year I hibernate, stop going out, stop writing, stop reading – just eat and sleep and snap at people over trivialities. And while this year is no different – I keep stuffing my face with chocolate, going to bed two hours earlier than usual and falling out with family members on a weekly basis – I’ve noticed an addition to my symptoms this year:

An overwhelming feeling of sadness.

It’s weird that having something called SAD, I’ve never particularly felt sad with it before. Moody? Sure. Lacking in energy, filled with self-loathing and totally uninterested in anything other than binge-watching old episodes of Arrested Development? Naturally. But sad? No, I’m too depressed to be sad.

For those who don’t suffer from depressive illness, allow me to explain the difference between depression and sadness.

Sadness is an emotion, a feeling, like joy or fear. You can feel it in particular locations in your body, and it provokes a visceral physiological reaction – a sinking chest, a trembling lip, tears. It is transitory and ephemeral, and stimulated as a reaction to something going on in your life – a death, a rejection, a painful memory. It comes in a rush, can be incredibly intense, and then goes away again, without leaving a fingerprint in your soul. That is sadness.

Depression, on the other hand, is a mood – an ongoing, long-lived, debilitating way of life that pushes down on you and pervades your entire body, mind and spirit. It’s not a feeling but a way of feeling. There are no ups and downs, no bursts of colour, just an ever-present gloom. It exists irrespective of what else is happening in your life, and though it is sometimes less pronounced, it never truly leaves you, a shadow that lurks in the recesses of your being and stains all that you’ll ever become. That is depression.

If sadness is a thunderstorm, horrible and exciting, depression is an endless grey sky, without wind, without rain, and without the prospect of ever seeing the sun again.

Which is why it’s odd that this year, this gripping, all-consuming sadness keeps creeping up on me and washing over me, stopping me in my tracks.

Contrary to the philosophy underpinning Cognitive Behavioural Therapy that the ancestor of every feeling is a thought, this feeling only comes when I’m not thinking at all. If I’m doing something that requires even the slightest modicum of brainpower, I’m fine – at least, as fine as I ever get. But every time I stop or do something so routine I don’t even need to think about it, I get hit by a wave of sadness.

It works like this – I’ll be watching the kids play, making sure they’re not killing each other, and all will be well and good. I’ll walk into the kitchen to make myself a coffee, flip on the kettle, and – BOOM! – I’m sad. So sad.

Or I’ll be doing the shopping, or driving the car, or playing with my kids, and the moment I stop, this dreadful sadness slaps me across the face. So I keep active doing word puzzles, watching game shows on TV, completing online quizzes so that I’m constantly thinking. Whenever I stop thinking, that’s when it comes – this feeling that I’m going to burst into tears.

People have suggested my antidepressants have stopped working, that I should go see a doctor. I can’t imagine why that would be the case after fifteen years on them. Besides, I saw a psychiatrist around eight or nine years ago to ask him that very question, and he said that you don’t build up a tolerance to SSRIs, needing to up the dose to receive the same effect. No, he said that depression just happens to be one of those things I have to live with.

And besides, sadness isn’t depression, so why would antidepressants control it?

I just have to wait for the spring again, even as it gets harder year on year. And hope that these thunderstorms will go away and leave me with my overcast sky.

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An Aspie Family Christmas

As a person with Asperger’s Syndrome, and a wife with the same, I have just experienced an incredibly stressful holiday season that has left my nerves in shreds and my marriage hanging on a knife-edge. For the avoidance of future issues, and to help out my fellow Aspies and their families, I thought I’d share what happened to me and offer some friendly advice on how to make things run more smoothly.

1. Keep the disruption short

My wife asked if we could spend a few days over Christmas with her sister and family, a four-hour drive away from home. As a supportive husband and father, of course I said yes. Two or three days at somebody else’s house is about my limit.

It wasn’t until two weeks before Christmas that I discovered my wife had actually arranged six days with her sister. I protested and tried to change it, only to be told by the wider family that it had already been arranged and changing it would be inconvenient. For them. The neurotypical ones.

Not wanting to cause a fuss, I loaded the car with everything including the kitchen sink (a toy for my daughter), and we set off.

In short, it was two rather pleasant days, two rather annoying days, and two days in which I wanted to push people off the quayside and throw stones at them as they struggled to stay afloat.

People with autism need space to recharge our batteries. I’m not talking simply physical space – we need mental space, a way to escape the slowly building pressures and strains of being forced into relentless and unpredictable social situations. Such a thing is generally impossible in an unfamiliar environment filled with somebody else’s stuff and driven by rules and routines different from your own.

Without this release, as time goes on you become more tired, more stressed, more prickly, more antisocial, less able to cope. And then you look and act like an asshole as you start to isolate yourself, avoid eye-contact, mumble two-word responses to questions, and refuse to participate, all as a way of surviving. And are told this isn’t the way you’re supposed to be behaving over Christmas. By neurotypical people. Whom you already warned that you’d get like this if you had to spend six days with them, but who chose to ignore it anyway.

So to the families of Aspies – think carefully about the duration of the holiday arrangements, and when your loved one is showing signs of stress, leave them alone. You might think that trying to include them in activities will bring them out of their funk, but in reality it’ll likely make things worse as they’ll feel pressurised and even more trapped than they already do.

2. Keep the numbers small

I had been informed that there would be a total of eight people at Christmas, including myself, my wife and my two kids, perhaps because it was known that I’d become anxious or refuse to go if this number was any higher. So imagine my surprise when a further seven people turned up, to take up every spare room in the house and leave me to feed the baby on a hard wooden chair at the dining room table every night.

I’ve mentioned many times before that autism is an exhausting disorder. When I’m with other people I spend inordinate amounts of mental energy consciously processing those things that most neurotypical people take for granted, namely how to have a conversation, when it’s my turn to speak, what I should talk about, how I should phrase things, where I should look, how much eye-contact I should make, how to interpret what they’re saying, reading their body language, regulating my posture and my proximity, working out relationships, the appropriate register, making sure I’m not talking too loudly or too soft, dominating the conversation or saying something inappropriate. I do all this to ‘pass’ for normal in a process called masking, and it is incredibly stressful, overwhelming and draining, and causes massive anxiety.

That’s with just one other person. Put me in a house with fourteen other people and I’m on overload. I can’t mentally process so many inputs and interactions, and something has to give – normally my peace of mind and my ability to function. I tend to come across at these times as arrogant and antisocial as I struggle to regulate what I say or how I should say it. My coping mechanism is to withdraw from the social encounter, deal with people one-to-one, minimise the number of simultaneous interactions – something that’s impossible in a crowd.

So if you want your Aspie family member to have a good time during holidays, less really is more.

3. If you make a plan, stick to it

It is well known – so well known, in fact, that it’s hardly worth mentioning – that people with autism hate change. I have discussed this many times and pointed out that it’s slightly more nuanced than that. My wife, for example, cannot handle change that involves the cancellation of something already arranged. I am the opposite – cancelling things doesn’t really bother me, but adding things in with little or no warning makes me freak out. The looseness of Christmas exposed my wife and I to both of these types of change, leading to great emotional distress for both of us.

Our second day was a case in point. It had long been arranged that everyone would go for a walk at the beach in the morning and in the afternoon someone would kindly look after our kids so my wife and I could head off to a coastal village to have a look around and spend some adult time together.

We left the house at 11.45 and arrived at the beach for 12.30, which by my reckoning, as a stickler for accuracy, is not morning. A minor point, perhaps, but incredibly frustrating for a person with autism. An hour’s walk in the wind and rain at the beach and I was more than ready to go back to the house, head off to the pretty village, and spend some quality time with my wife.

Unfortunately, somebody suddenly announced, ‘We’ve decided we’re all going to the pub for a drink.’ And that was that.

My wife was okay with this, as an additional activity is fine for her. I, on the other hand, panicked. Telling me I have to go into a stressful social situation – a dark, noisy, crowded pub at Christmas with people I don’t know very well – with barely a couple of minutes to get my head around it caused me massive unnecessary anxiety. For other people, going into a pub is probably a pleasant experience – for me, it is a torture that must be endured, and I need to mentally prepare myself for that. Unable to do so, I found it horrendous.

Unfortunately, staying at the pub over an hour, walking back to the car, driving back to the house, meant it was nearly dark by the time we got there. Then the person who said they would look after our kids had to prepare the food for dinner, thus we were unable to go to the coastal village. While I found this annoying because I’d been looking forward to it, my wife found this change of plan – the cancellation of something already arranged for no good reason – very upsetting and difficult to process.

Most of the people I know with Asperger’s suffer problems with anxiety, and changing plans tends to send our anxieties skyrocketing. Indeed, it can ruin our whole day as dealing with the psychological and emotional fallout lasts for hours. So if you must add or remove something from the schedule, make sure it’s for a good reason and not simply because of a sudden whim. A little sensitivity goes a long way to sparing your Aspie relatives a great deal of unnecessary anguish.

4. Don’t expect others to conform to your emotional standards

I lost count of the number of times I was told to cheer up, be happy, enjoy myself, join in, stop being a bah humbug, as though my emotional reactions were somehow ‘wrong’ because they differed from those of the people around me. Not only, therefore, was I expected to behave in a neurotypical manner and suppress my natural tendency towards a quiet, ordered life, I was also denied the right to feel my own perfectly normal emotions.

I was even told that, as my kids made it ‘magical’, I should feel magical. I asked precisely when an adjective had become an emotion and if such a feeling could be described to me, and therein lies the rub – people with autism often struggle to understand or appreciate their emotions. I certainly approach them from an intellectual viewpoint, and I find the concept of happiness, as it relates to me, very confusing.

To me, happiness isn’t about feeling good, it’s about not feeling bad. If I am ‘enjoying myself’ it means I feel absolutely nothing – the everpresent irritation, the tightness between my shoulder blades, that electrical storm of focused energy that buzzes around inside my head as I process, process, process, are not there. It doesn’t mean I’m smiling or jumping up and down. If I’m reading in a corner I’m quite possibly quietly content.

But like most people with Asperger’s, I won’t lie, and perhaps that’s why I stand out. I found Christmas extremely difficult, and when people asked how I was feeling, I told the truth. While everyone else was supposedly having ‘such a good time’, I spotted tears when they thought nobody was looking, heard whispered arguments from behind closed doors, noticed when formerly talkative people fell strangely silent and when couples sat beside one another without a single word passing between them beyond mildly passive-aggressive statements. So maybe I’m not so different after all.

I played with my kids and made sure they were happy, and I’m not sure why everyone was so bothered that I should display outward signs of pleasure for their own gratification. It seems to me less about making sure I’m enjoying myself and more about feeling threatened that somebody isn’t buying into the same sentimental bullshit that they are.

So don’t heap added pressure on your Aspie relatives by expecting them to feel a certain way – we’re already expected to behave in ways that don’t come naturally. Allow us our own emotions and to react exactly how we react, and we’ll do the same with you.

5. Turn off the gosh-darned music

As soon as the household arose, the radio went on. As it was rigged up throughout the house, the music would play in the kitchen, the dining room and the lounge, at quite a loud level, right up until bedtime. This was despite people coming and going, having conversations, playing games, making phone calls, watching videos on their handheld devices, and everything else that goes on in a house at Christmas.

My God, it was overwhelming. It was like a thousand tiny drills boring into your brain morning, noon and night. When you’ve heard Shane MacGowan slur his way through Fairytale of New York six times by lunch, you’re ready to agree with that line ‘Happy Christmas your arse, I pray God it’s our last.’

People with autism tend to have oddly-balanced sensory systems. Normally, we have very sensitive hearing and struggle to filter out one sound from another. Stick me in a house with fourteen other people over Christmas and I can hear three or four simultaneous conversations, making it very difficult to pay attention to my book and thus get the mental space that I need. Add music to the mix and my sensory system is utterly overwhelmed, especially when that music is loud.

So spare a thought for your autistic relatives over Christmas – a quiet space or some quiet time is certainly in keeping with the Christmas spirit of peace and goodwill to all men.

6. Don’t lecture from a position of ignorance

While walking towards the aforementioned (awful, awful) pub, I explained my reservations to a member of my wife’s family. ‘For me,’ I said, ‘going to a pub is the equivalent of sitting a really difficult exam. I discussed this last month with Luke Jackson, an autistic author, and we agreed that while for most neurotypical people going to the pub is relaxing, for those of us with autism it’s jolly hard work. You see, you go to work, get stressed, and then go to the pub to unwind. But while you’re unwinding, we’re becoming more and more wound up. Afterwards, you go home and go to bed because you’re relaxed. We go home more stressed than when we left, and then have to spend a few hours unwinding and de-stressing before we can be relaxed enough to go to bed, which is awfully tiring and has a knock-on effect for the following days. That’s what it is to have autism and why I’d rather we didn’t go to this pub.’

Quite clear, I thought, frank, easy to understand. So how did he respond (other than, ‘Cheer up, you miserable bugger.’)?

He said, ‘Oh, how ridiculous. No, I don’t believe that at all.’

‘Well, that’s the way it is.’

‘No, of course it’s not.’

And that’s the level of understanding I tend to get from my wife’s family. This is just one of multiple examples over the six days of me explaining to someone how my autism affects me, only to have them disagree with it. What? Why on earth would you belittle and undermine my understanding of my own condition and my own behaviour!?!

With all humility aside, I am an expert on Asperger’s Syndrome and how it affects me. I’m sought out to give speeches educating people about autism and I’ve written a well-received book about it, for Christ’s sake, one that’s sitting in the health section of every Waterstones in the UK. So why on earth would you dismiss what I say because you think you know best about a subject you have never studied, experienced or lived with?

Probably because there were some subsequent discussions about how ‘Asperger’s didn’t exist in my day,’ and how there are far too many people walking around using modern diagnoses as an excuse to cop out of life. Because that’s not condescending at all!

So if you want to keep cordial relations with your Aspie relatives, be sure to treat their expertise with the understanding and appreciation it deserves. Unless you’re a bigot, in which case we probably don’t want anything to do with you.

7. Bringing up the supposed links between MMR and autism isn’t going to win you any friends

 

I always find it strange that people dare bring this up. Without knowing very much about it, surely they know it’s a controversial conspiracy theory and therefore inappropriate to raise with people they don’t know from Adam. I don’t go up to somebody with cancer and say, ‘Hey, have you heard they have a cure for cancer, but they keep it hidden because they can make more money treating the disease than curing it?’ because that would be remarkably insensitive.

I have explained at length that MMR does not cause autism, and am armed with enough facts to shoot down any and all attempts to suggest otherwise. Unfortunately, this doesn’t stop people like my mother-in-law and various people in the house over Christmas telling me that my wife’s autism was caused by the MMR jab.

‘Andrew Wakefield was paid a hefty sum of money to find a link between MMR and autism so people could make compensation claims,’ I told them. ‘He was also marketing his own competing vaccine. This is what we call a conflict of interest and why his study has been completely discredited.’

‘He’s very popular in America.’

‘He had to go to America because he was struck off by the GMC for faking his research.’

‘Well, I still think he’s right.’

‘No, he’s not. The only study suggesting a link between MMR and autism had a sample size of twelve and was faked, whereas meta-analyses of studies featuring over 14.7 million kids – yes, 14.7 million – showed no statistically significant difference in rates of autism between those who’d had the vaccine and those who hadn’t.’

‘Well, I think that if you’re genetically predisposed towards autism, the shock of having three vaccines at once can trigger it.’

‘But where’s the evidence for that? If that was true, proportionately more people who’d had MMR would have autism than those who didn’t have the vaccine, and that’s not the case.’

‘She was different after she had the MMR. I know she was.’

And so I had to bite my tongue, or else I’d say something suitably cutting. Emotion trumps logic every time, and that’s damned annoying.

So don’t bring up this crap with your Aspie relatives during an already stressful time and then argue against facts with feelings. As I said, autism is my area of expertise, and trying to make out that you know more than me about it just makes you look ignorant.

8. And lastly, compromise is not a dirty word.

Nor are compassion, empathy or understanding. It seems odd that those of us with autism, who have clearly defined and specific needs, are the ones expected to fit in with everyone else. Yes, the ones who, because of their condition, have the least capacity to modify their behaviour to suit others are the ones who have to make the effort to adapt their behaviour to suit others. It doesn’t really strike one as fair, does it?

I’m not saying that the neurotypical side should make all the movement, but surely we could meet somewhere in the middle? It might make Christmas a little more enjoyable for all of us.

How my toddler made me cry

My two-year-old daughter made me cry the other night.

It came as a bit of a surprise, because I’m not really that emotional a person. Over the years I’ve built up a thick skin – it’s the only way to survive being a square peg in a world of round holes. My moods tend to vary between melancholy, discontentment and ennui, so I rarely reach the extremes of feeling that lead to tears, good or bad. Funerals? Nothing. Weddings? Nothing. The birth of my kids? Meh.

But then, there is a chink in my armour. Toy Story 3 made me weep in the cinema, My Girl just kills me, and who doesn’t cry at Marley & Me (besides cat lovers)? I can’t walk past a child’s gravestone without welling up, and last year I even cried at a book, Karen Joy Fowler’s We Are All Completely Beside Ourselves, in a scene where a chimpanzee begs to be allowed to go home. All of which goes to show, give me the bittersweet juxtaposition of innocence and sorrow, and you can pierce right to the heart of me.

I first noticed this weakness about twenty years ago, at Land’s End in Cornwall. A little boy was running with his brand new toy sword from the gift shop when he tripped and fell and – SNAP! – the blade broke at the hilt. The look on that boy’s face – the dawning realisation of what had happened, the switch from innocent joy to infinite sorrow as life’s hard truths hit home, and then the tears of impotent despair at the discovery that some things once broken cannot be fixed – it broke my heart.

I mean, sure, it was just a plastic sword costing a couple of quid and his parents could have bought him another one in a heartbeat – hardly a life-or-death experience. But that boy’s face haunted me for weeks after, because in the innocent, uncontrolled emotional state of a child, unable to weigh up comparative value or process cause, effect and consequence, and living solely in the moment, it is life-or-death. Children and animals, their simplicity of thought and emotion, their purity – when they suffer, when they’re sad, when they’re in pain and when they die, it cuts through every barrier I put up to protect myself.

Unfortunately, my toddler is right at that point in her social and emotional development where innocence and sorrow come into contact several times a day.

The evening she made me cry, I picked her up from nursery as usual. It’s always nigh identical to that scene in The Railway Children – she sees me, stops stock still in awe, and then she shouts, ‘Daddy, it’s my daddy!’ and runs towards me, her face filled with elation, leaving me just enough time to drop to one knee before she slams into me and throws her arms around me. So excited to show me what she’s been doing, so proud to show me off to the ladies at nursery – ‘My daddy,’ she says, ‘This my daddy.’

She’s the last to be picked up, after dark, so for half an hour she gets to hang with the grown-ups. I know it makes her feel special. She gets such a look of well-being on her little face as she puts on her school bag like a big girl, waves to the ladies all cocky because she’s heading home to mummy and her little sister. This night was no different but for one thing.

She tripped as she stepped over the threshold, stumbled down the wheelchair ramp and face-planted into the mud.

I stood her up, her hands, coat and face black with dirt. The women from the nursery appeared in the doorway and in the light spilling out past them I saw my little girl’s face – the shock giving way to embarrassment and humiliation as she fought back the tears, struggling to keep control. I told her it’s okay and she’s very brave, but it was all too much and suddenly she was wailing and burying her face in my side so nobody could see her. Ultimate joy to ultimate misery in under ten seconds, her special, sacred moment destroyed. Broke my heart.

But that wasn’t what made me cry.

On the way home, to distract her from her misery, I asked her who had been there today. Turns out it was Tilly, Hugo, Sebastian, Rufus (yes, I know – we’re only a Tarquin away from winning Pretentious-name Bingo), and a new one for me – Jasper.

‘Who’s Jasper?’ I asked.

‘My best friend,’ she replied. Too cute!

Then I asked her what she’d been up to. ‘Me sing Twinkle, Twinkle with my friends.’ Oh my gosh, the sweetest thing ever. But it still didn’t make me cry. No, that came after dinner when I was bathing her.

She was sticking the foam letters to the side of the tub – ‘This mummy,’ she’d say, and ‘This Granny,’ and ‘This Poppa.’ Then she put three together, pointed at the middle one, and said, ‘This daddy.’

‘Who’s this, then?’ I asked, pointing at the figure beside me.

‘This daddy’s friend,’ she replied, and pointed to the other; ‘and this daddy’s friend.’ And then she put another one beside them and said, ‘And this daddy’s best friend.’

And that’s when I cried.

As a master at acting ‘normal’, I hid it well. This is particularly important because my toddler has become very sensitive to other people’s feelings. She’s always asking if mummy’s sad, or if daddy’s sad, and the other night she woke up sobbing because she’d had a dream in which mummy was very sad. So I wiped my eyes, endured that prickly feeling at the top of my nose, and got on with it.

But why did I cry? The juxtaposition of innocence and sorrow.

As somebody with autism, friendship is something I always desperately wanted but was never able to have. I struggle to understand or connect with other people. When someone wants to be my friend, I become paranoid and push them away. When I want someone to be my friend, I approach it so cautiously I miss the opportunity. I don’t know how to make, keep and manage friendships, and I only have the mental energy or focus to sustain one friend or partner at a time. As I’m married, this means I don’t have the social resources to have any friends – no close ones anyway. It’s the way I’m built. It’s one of those things.

But that doesn’t make it any less painful, and it doesn’t mean I’m not desperately lonely.

My daughter has already realised the importance of friendship. Watching her making friends is a wonderful relief, because she is not like me. A bittersweet relief, as one day she’ll learn that daddy doesn’t have any friends, and she won’t understand why, and she’ll be sad, because even though I won’t show it, she’ll know that I’m sad too. Because friendship is important regardless of who you are.

Where do innocence and sorrow factor into this? Her innocence; my sorrow.

That’s how my toddler made me cry.

The key to good parenting

I was recently asked what makes a good parent. You can fill a library – a thousand libraries – with the possible answers, so I could have gone on about patience, tolerance, a sense of humour, imposing boundaries, being consistent, enjoying the moment, and all those other nuggets of wisdom, if I wasn’t sure that most people already know these things.

Instead, to save you the time and the eye-strain, I can sum up what makes a good parent in just two words: emotional resilience. Everything else stems from that.

I think that society is very confused about what a good parent looks like. The parent with the perfectly behaved, adorable little angel of a child is lauded as ‘good’, while that with the bratty, obnoxious little oik they have to drag out of the supermarket because they’re screaming is judged as ‘bad’. I know, because I have done this myself, inferring the relative merits of the parent from a brief glimpse at the behaviour of their child.

But this is, in fact, a very unreliable method of gauging an individual’s parenting ability, because all kids are different – some are easy, most are a mixture of tranquil and testing, and some are right little bastards who, in an earlier generation, would have been destined for birch and borstal. It’s not so much the behaviour of the child but the behaviour of the parent that reveals their abilities or otherwise.

You see, being a good parent isn’t about succeeding when things are going well, the toddler’s perfectly happy and everything is hunky-dory – those are the times to sit back, relax and bask in the glow of strangers who deem you the very model of a perfect parent.

No, the real test of your parenting prowess is what you do, and how well you cope, when things are going horribly, horribly wrong, the little one is screaming fit to burst her lungs, and you want nothing more than to run away, find a dark place where you can curl into a ball, and hide away as you ride out the storm. That’s when you discover whether you’re a good parent or not, and that’s when you find whether you have the strength to rise up in the face of adversity – or not, as the case may be.

Being a parent, you’re tested every day. What your toddler loves to eat on Monday she decides is vomit on Tuesday, no matter how long it took you to make. At home on Wednesday she’s as good as gold while on Thursday at the restaurant she behaves so badly you have to leave early in defeat. And on Friday she’s using the potty like a pro, but on Saturday pisses on the sofa and then craps on your shoe, and she’s so upset, you break your heart trying to console her.

The hours of crying, the thrown toys, the irritating whining, the tiredness, the dressing and redressing, the bathing and washing, the repetitive game playing, the incessant highs and lows and successes and failures, the constant battle of wills and the endless sacrificing of your own hunger, thirst, wants, needs, dreams – it is so difficult not to be affected by all that, not to get run down.

That’s what I mean by emotional resilience. If you want to be a good parent, want to keep going in the same calm, controlled, reliable fashion you’ve done from the start, you have to find a way of protecting your emotions, shutting off a part of yourself, so as not to become overwhelmed. If you let things get to you, if they weigh heavy on your heart, you’re never going to make it.

As I said before, emotional resilience is pretty much all you need to be a good parent, because it is the foundation of everything. Nobody sets out to be a bad parent – nobody decides they want to lose their temper at their kids, shout at them, hit them, make them cry; nobody thinks one day they’ll start to ignore their child, sit them in front of the TV, dump them with family and child minders and start hiding at work; nobody plans to simply give up and overlook their child’s bad behaviour because they can’t deal with it, or give them the chocolate bar because it’s easier than arguing, or leave them in nappies till they’re five because it’s just too hard – but I’m sure we’ve all seen examples of these behaviours.

Hell, I went to a fair yesterday, and I saw most of them – parents losing control and swearing at their kids, parents looking the other way as their kids misbehaved, parents buying things for the kids to stop them whining – anything for an easy life. I don’t believe these parents started out this way. I don’t believe they ever thought they’d be like this. But somewhere along the way, they’ve become so run down by being parents that they’re just trying to survive – and good parenting has gone out the window.

In the grand scheme of things, it doesn’t really matter if your child is well behaved or not. In the grand scheme of things, all your mistakes as a parent, all your failures, aren’t anywhere near as important as you think they are. What’s important is that you never stop trying to be a good parent; that you persevere, no matter how difficult; and that despite wanting to run away, or give in, or give up, you don’t, don’t, don’t. That’s the only way you can be a good parent. And ultimately, your child will be all the better for it.

 

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’.

Asperger’s, Emotions and Parenthood

There is a persistent myth that people with Asperger’s Syndrome don’t feel emotions. It’s a myth because, if anything, I think many of us feel emotions more strongly than neurotypicals – it just doesn’t look like it.

I liken emotions in autism to a case of arrested development. Our emotional development suddenly stops while our bodies and cognitive abilities continue to grow. Unfortunately, it usually gets stuck on the ‘teenage’ setting, meaning we don’t understand what we feel, but we feel it all so intensely – the manic highs and the desperate lows – that we become overwhelmed and cease to function. Imagine being stuck as a hormonal fourteen-year-old your whole life – doesn’t bear thinking about, does it?

Since our emotions can confuse, unsettle, and even scare us, we embrace routines, predictability, systematic thinking and mental reasoning. We live in our minds and try to keep our nasty, unpleasant feelings pushed down deep where they can’t harm us. Many resort to antidepressants to keep our feelings at bay. And when our emotions do get the better of us, and we can’t cope, we seek out solitude and experience them alone. The emotionally unresponsive Aspie, approaching situations from the head and not the heart, is therefore in many ways a defence mechanism against our dangerous unbridled passions.

At least, that’s how I see it.

Yet even knowing this, I did wonder why I didn’t feel more when Izzie was born. The father across from us in the Transitional Care Unit was always crying when he was hugging his newborn. ‘I love him so much, I just love him so much,’ he kept saying, until even his missus told him he was being pathetic. I just couldn’t relate to those feelings.

I was told, before Izzie was born, that the first time you hold your baby in your arms it’s special, the love is instantaneous, you’re overwhelmed with emotion, and yada, yada, yada. I’ve mentioned before that when I first met my baby I was pretty dazed and distracted by the whole ordeal of ambulances, operating theatres and incubators and it took me a good four hours to really start feeling the love. But I never got that emotional rush, that powerful knock-you-on-your-ass thrill of being a parent.

Until now.

This is going to sound really saccharine and namby-pamby, but the past few days I’ve been almost overwhelmed by this incredible feeling of love. I feel like I want to cry all the time. When the baby sleeps I feel this surge of emotion well up in my chest, and I watch her for hours because she’s perfect in every way. When I went to work in the charity shop yesterday, I missed her horribly – I was only gone three hours. And when customers asked about her, I showed them a picture and could have cried with pride. I can’t believe she’s only been here nineteen weeks. It feels like she was always with us, just waiting to be born to make us all complete.

See? It’s so horribly sweet and sickening I want to disown myself. Part of me wonders if it’s because I’ve reduced my caffeine intake and started a diet to knock off the twenty pounds I’ve put on in the last nineteen weeks, mostly through chocolate, chocolate and more chocolate; another part wonders if it’s because I haven’t had a good night’s sleep for almost five months; whereas in truth, it’s probably because I’m more relaxed about being a dad these days. The fumbling, panicked hell of the first couple of months, and the laboured, mind-sapping slog of the next two, have given way to a quiet confidence and acceptance of the new routine. And that allows me to see her and enjoy her for what she really is: an angel in our midst.

Actually, that’s going a little too far. She’s suddenly discovered she can squeak like R2-D2, so every time she’s displeased with something, which is often, she treats us to a sound even dolphins wouldn’t enjoy. It’s a high-pitched, screeching whine, somewhere between a dial-up modem and that awful sound you used to get when you picked up the phone only to hear a fax machine on the other end (for those of you too young to remember dial-up modems and fax machines, ask your parents what they were, and know that I hate you).

But my emotional responses to the good things far outweigh my feelings towards the bad. In fact, right now the emotional impact of the good things is utterly disproportionate to their size. Izzie rolled from her back to her stomach for the first time yesterday and me and Lizzie were leaping around the room like idiots, and even though today she’s doing it like a pro, we still get excited every time. This morning when she was laughing unstoppably as I blew raspberries on her belly, I could have been in heaven. And a few minutes ago when I went to check on her in her cot and she opened her eyes, smiled at me, and went immediately back to sleep, I could have stayed in that moment forever.

I am choked with emotion at the moment. I am overwhelmed. But not that anyone would know it.

People with Asperger’s do feel emotions just as strongly or more so than ‘regular’ people. We just don’t make such a big song and dance about it, is all…

See what I mean? Perfect.
See what I mean? Perfect.