The Perils of Perfection

I am a high achiever. This might come as a surprise considering I’m a 38-year-old stay-at-home dad whose longest of nineteen jobs lasted a massive 365 days and whose highest take-home pay was a measly 16k, who has practically nothing in the bank, drives an old rust-bucket, and lives in a house owned by his father-in-law. But I am a high achiever nonetheless. And I’m here to tell you: it’s not all it’s cracked up to be.

What makes me a high achiever despite never actually achieving anything of much note? With no false modesty, I just am. I walked early, talked early, read early, wrote early. In primary school, I jumped from the first year to the third year, skipping the second. I was in an advanced English class with older children. They told my parents that the sky was the limit. I said I was going to be a novelist, and they said I absolutely could be.

At middle school I was in an advanced English and Maths class with older children, and regularly corrected my teachers’ spelling and mathematical mistakes. They told my parents I would reach the stratosphere. I said I was going to be a novelist, and they said I absolutely would be.

At secondary school I was in the top set for every subject, and started getting Level 10s for English (the highest you can get) when everyone else was getting Level 6s. They told my parents I was the most exceptional student they’d ever had in the 54 years the school had existed. I said I was going to be a novelist, and they said to remember them when I was on This Is Your Life.

In VI Form, my English Literature work was deemed third-year university standard, and I was selected to go to a politics retreat for especially bright students. They told my parents I had a gift that needed to be shared with the world. I said I was going to be a novelist, and they had no doubt I wouldn’t just be a novelist, I’d be one of the bestselling novelists in the world.

I sleepwalked through university, spending no more than two days on any assignment, and still came out with a first class BA (Hons) with distinction and the highest mark in the year. I was voted the person most likely to succeed by my peers.

I started doing Open University courses and got a Diploma of Higher Education, another degree and a Masters, earning a distinction for every module, exam and essay, whether it was humanities, arts or social science – English, History, Classics, Archaeology, Psychology or Philosophy.

I have excelled at every job I’ve ever done, be it medical secretary, student nurse, telesalesperson, administrator, public speaker or police communications officer. I have worked with famous people and for royalty, sold art to mayors, travelled solo across the United States and around New Zealand; I have spoken with James Cameron, stood beside the Queen and once saw Michael Jackson travelling down Broadway on top of a bus.

I have sailed across the Atlantic as deckhand on a tall ship; climbed 100-foot cliffs; abseiled down a mineshaft; caught a 50lb conger eel; ascended mountains; qualified as a scuba diver and a parachute jumper; played guitar in a number of rock and metal bands; acted in amateur plays; won screenwriting and short story competitions; had a book published about being diagnosed with autism as an adult; appeared on TV, in magazines and newspapers, and on the radio. I have kayaked, surfed, water skiied, disappeared into the wilderness. Last year I won a competition medal for rifle shooting the first time I picked up a rifle. I’ve done courses in blacksmithing, map-reading, survival, forensic science, private detection, web design, tai chi, sailing, Alzheimer’s, and Cognitive Behavioural Therapy. The only thing I’ve never done is walk on water.

So, I’m a high achiever. Which is weird considering I’m a 38-year-old stay-at-home dad whose longest of nineteen jobs lasted a massive 365 days and whose highest take-home pay was a measly 16k, who has practically nothing in the bank, drives an old rust-bucket, and lives in a house owned by his father-in-law.

The trouble with being a high achiever is when your achievements don’t actually amount to diddly squat in the real world. I haven’t reached the stratosphere, or This Is Your Life, or even London. I still haven’t had a novel published, despite having written ten over the past twenty years, sacrificing career and relationships in exchange for 350 rejection letters declining my entry into the hallowed halls of the literary world. I’m hardly setting the world on fire.

I mean, even Clark Griswold invented the Crunch Enhancer, a non-nutritive semi-permeable cereal varnish. I’m less successful than Clark Griswold. Puts things into perspective, doesn’t it?

I feel that if I died at eighteen, I’d have been on the front page of the newspaper – so much potential, he would’ve been great and done so much, what a tragedy. If I die now, I’ll be lucky to get a footnote in the obituaries – so much wasted potential, he could’ve been great and done so much, but didn’t, oh well.

Living as a high achiever messes with your mental health. Ten out of ten is not something to strive for; it is something to be expected every time. If I get nine out of ten, I beat myself up because it’s not good enough, damn it, I should be better. When you throw parenting into the mix – especially of two little girls aged two and zero – that’s when perfectionism is a right royal pain in the ass.

Regular readers of this blog might have noticed I’m a little obsessive over my role as father. It’s not good enough just to be a dad – I have to be the best dad who ever lived. I model myself on Supernanny Jo Frost – calm, collected, consistent, and always in control.

So now that, after two years and nine months of putting up with the crap of parenting, I have started falling short of this ideal – when the baby is screaming and the toddler joins in just for fun and I suddenly shout, ‘Oh for God’s sake, shut up the both of you before my brain starts leaking out of my ears!’ and the toddler starts sobbing ‘don’t shout at me, daddy!’ – I have been sinking into a shame spiral, thinking I’m the worst father in the world, and punishing myself for my abject failure to live up to my unrealistically high expectations.

All of which has resulted in me taking an Anxiety Management and Coping With Depression course, where I have learned four interesting things:

  1. Eight out of ten is good enough.
  2. When you’ve lived with the Black Dog nipping at your heels all your life, just getting up in the morning is an achievement, let alone looking after two kids and a heavily dependent wife.
  3. If I’m always in control around my kids, I’ll teach them that it is bad to show their emotions and they should strive to be perfect all the time, which will set them unrealistic goals and thus perpetuate the cycle.
  4. I am a human and not a robot.

To which I respond with:

  1. For whom?
  2. They don’t put up statues of people simply for getting out of bed.
  3. Fair dues.
  4. Beep boop – does not compute.

But in all seriousness, they’re right. I have to lower my sights and lower my standards, because I’m killing myself to be perfect and there’s no such thing as a perfect parent. I have to accept that sometimes I’m allowed to be ‘crap dad’. Eight out of ten is a perfectly acceptable standard to live at. And what does it matter if I never publish a bestseller?

It matters to me.

Setting aside everyone’s expectations of me, my supposed potential, all the things I ‘should’ have done, all the things I was ‘meant’ to achieve, the only pressure on me to live at ten out of ten comes from within my own head. So it’s up to me to change the thought patterns of a lifetime if I want to access that elusive thing called ‘peace of me mind’.

Can I do it? Of course I can – I can do anything!

Let’s just call it a ‘work in progress’ and see where I end up, okay?

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Takers and the Took: Asperger’s and Confrontation

Every day at the moment, I’m having between sixty and seventy arguments. Some are mild, a witty response to a provocative remark; some are longer, a tussle between players on opposite sides of the game; and some are long drawn-out, bloodthirsty affairs that leave souls destroyed and lives in ruins. Sixty to seventy, every single day.

But it’s not as bad as all that: they only take place in my head.

Like many people with Asperger’s, I have something of a phobia about confrontation, to the point of enduring any amount of abuse in order to avoid it. When it does happen, I avoid eye-contact and retreat into myself, and all the cogent, coherent arguments I could make evaporate. I have a visceral reaction – acid, like liquid copper, spreads from my gut, my chest tightens, my throat constricts, and the back of my neck starts to burn, because even though words can apparently never hurt me, I feel as though I’m being physically attacked. So I wait for it to end, mutter some platitudes that completely undermine my own position, and then slink away in a turmoil of guilt, shame and humiliation like a dog with his tail between his legs.

And afterwards, I dwell on it. For days. I relive the argument, word for word, re-experience the feelings, the fear and helplessness, think of what I could have said or should have said but didn’t because at the time all I wanted was to retreat. Like someone who has taken a beating, it takes me a long time to recover. It’s as though my psyche is bruised, and the world is now altered, everything out of place and dangerous until I manage to rebuild my walls and feel safe around people once again.

I worked in telesales for a time. Last thing on Friday afternoon, a stranger eviscerated me down the phone line. I didn’t sleep that night, couldn’t relax all the next day, had bad dreams on the Saturday, ran over the incident a million times all day Sunday, and on Monday handed in my notice and bought a plane ticket to New Zealand. Growing up, people said I was sensitive – too sensitive to survive in society. I think the truth is that I’m autistic, and my problems with social communication and social interaction, married to anxiety, insecurity and an obsessive nature, make conflict something I’m particularly incapable of dealing with.

So I tend to avoid confrontation, if I can. You might have heard the opposite to this – that people with Asperger’s are themselves argumentative, self-centred egoists who run rough-shod over the feelings of others – and this is also true, no matter how contradictory. So how does that work?

I can only answer for myself. When it comes to facts – or at least what I consider to be facts – my natural pedantry, honesty, commitment to accuracy and inability to let things go mean I often get into arguments over trivial matters. Like when over dinner one time my (ex) sister-in-law was talking about someone overly concerned with their appearance, and concluded with the statement, ‘People are so fickle.’

‘What do you mean by that?’ I asked.

‘You know,’ she said. ‘People are so shallow and superficial.’

‘Oh, I totally agree,’ I replied. ‘But that’s not what fickle means.’

‘Yes, it is.’

‘No, it’s not. Fickle means changeable, inconstant, not shallow.’

‘I’m an English teacher.’

‘And I have a dictionary. Shall we look it up?’

‘Well, whatever it means, most normal people would have known what I meant.’

‘Then most normal people are using the word fickle incorrectly too.’

Sure, it’s a little thing and in hindsight it comes across as kind of petty, but that’s the sort of argument I can’t resist having – those to do with facts, where I will back myself to the hilt because I know I’m right.

On the other hand, when it comes to disagreements about less concrete things – emotional things – that’s what I struggle to cope with. I approach life in a rational fashion and expect other people to respond in a rational way, but that’s not what tends to happen. Instead, people are complex and confusing and behave in ways that aren’t rational at all. I just don’t understand it. You try to discuss something in a calm and controlled manner and they flip out, fly off the handle, scream and shout, and in a split second I’ve backed down, lost the argument and dropped into survival mode. Otherwise, if I try to stand up for myself, I get eaten alive.

I link this to my autism, especially since I know many others who experience the same anxiety over arguments. Perhaps having poor Theory of Mind skills – the ability to understand another’s thoughts, feelings, and point of view – means we are incapable of successful conflict-resolution. Or perhaps my aversion to confrontation is something more particular to me.

As a child, I grew up in a household in which confrontation had very real consequences, then at 19 I moved in with my girlfriend’s family, where a violent brother and emotionally unstable mother meant that any confrontation led to holes being kicked in doors and phones smashed against the wall. At 21 I formed a band with a girl who ruled my life for the next three years because I was terrified of her spectacular outbursts and felt powerless to escape her anger, while at 28 I moved into a ‘supported living’ house, where my housemate would break milk bottles on the kitchen floor if I disagreed with him. Over the years, I’ve learnt that confrontation means danger; backing down is the best way of surviving.

But it isn’t, because it’s incredibly damaging to your self-esteem and your long-term happiness. Living like this makes it very easy to be taken advantage of – unless you isolate yourself as a hermit, which, to be honest, is a very attractive option sometimes. I get churned up inside just thinking about the potential for arguments. I walk on eggshells, terrified of upsetting people because of how they’ll react, and I know what that makes me.

There’s that common expression about the world being divided between ‘givers’ and ‘takers’. This assumes that givers and takers are in some form of symbiotic relationship that fulfils one another’s psychological needs. I think the truth is much darker than that.

To paraphrase the 1960 movie The Apartment, there are ‘takers’ and ‘the took’. The worst thing about being the took is that you know you’re being taken, but there’s not a damn thing you can do about it. Because takers don’t take what is freely given – they take whatever they want. It’s a form of abuse, one that people with Asperger’s are very susceptible to because of our difficulties handling confrontation.

So when I know I need to confront someone about something – when I’m being taken advantage of, for example – I obsessively plan out what I’m going to say. And then how they’ll respond. And what I’ll say next. And so on, and so forth.

Of course, in real life, people don’t respond how you want them to, so I try various permutations – if the person responds rationally, irrationally, emotionally, angrily, defensively, offensively, how I’ll react, how I’ll respond. I have the same argument sixty or seventy different ways, every single day, all in my head.

And then the moment comes, and all the preparation goes out of the window. You’re aggressive instead of assertive, you stumble over your words, the other person explodes and you cower, or worse they deny anything’s going on and it’s all in your mind, which confuses you, until at the end of the argument you’re in a worse position than when you started, and all the things you’d meant to say, and all the rights you were going to insist upon, lie unspoken in your heart.

And you realise that there’s really no reasoning with some people, so it’s best to leave those arguments where they belong – spinning around in your head all day, every day, because they’re the taker and you’re the took.

And there’s not a damn thing you can do about it.

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.

Speaking for Others with Autism

As someone who puts himself in the public eye for a cause, especially on the internet, I’m aware that this makes me a target for criticism. Mostly it’s to do with my opinion on MMR not causing autism (because it doesn’t), my belief that modern, science-based medicine is better than snake oil and superstition (because it is better), and my insistence that people with autism can and do make good parents (because we can and do – although not all of us). These criticisms I can easily brush aside.

Not all criticisms can or should be dismissed out of hand, however. There’s a pernicious idea among the younger generations (and Taylor Swift) that any criticism is trolling, and those who do it are simply ‘haters’ and bullies, which is a great way of avoiding personal responsibility and adopting the mantle of victimhood, but isn’t an enlightened way of viewing people whose opinions differ from your own. So I tend to give my critics the benefit of the doubt – that the criticism was sincerely meant, even though I might disagree with it – and I consider whether there is any merit to it, since this is how we grow as people.

My latest criticism has got me thinking, for despite being worded rather rudely and making some outlandish assumptions, it asks a pertinent question: by what right do I presume to speak for others on the autism spectrum?

I have to first point out that, while I have been told I am an ‘ambassador’ for the autism community, speaking for those who can’t speak for themselves, I have never actually claimed this myself. I recognise, however, that by putting myself out there as a speaker, author and blogger, my words and behaviours reflect upon people’s perceptions of autism, and this is not something that I take lightly. Indeed, I put a great deal of effort into getting it right, especially since I’m currently in a position to influence opinion.

On Wednesday, for example, at an autism conference in Belgium, I spoke to two-hundred delegates about what it’s like to live with autism and how I manage to cope. Also on the bill at Inservice Autisme 2017, in the small village of Oostmalle outside Antwerp, were two other Brits with autism: internationally-renowned opera singer Sophia Grech, and bestselling author of Freaks, Geeks and Asperger’s Syndrome Luke Jackson. So, what right do I have to speak at such an event?

My answer is: I have every right. I talk about what affects me and other people I have met with autism, what has helped me to cope and what has helped others. I point out some of the issues you might face living on the autism spectrum and how these might be overcome. As you don’t cease to be an individual when you’re diagnosed, I am up front about the fact that the things I say will apply to some people more than others, and while some coping strategies might work, they are certainly not for everyone. The important thing is to make sense of your own experience and find out what works for you.

I don’t think there’s anything particularly offensive about that.

I have also been told I shouldn’t speak for others with autism because I have a wife and children, a book and a blog, and I have worked in the past – that my achievement of various life goals makes me ‘atypical’ (i.e. too successful) and thus invalidates my experiences of autism. Inherent in this accusation is a very negative view of people on the autism spectrum, as though to qualify as autistic you must necessarily be unfulfilled, downtrodden and miserable, and this is an opinion that simply does not ring true for me.

I have met hundreds of people on the autism spectrum, and I continue to be amazed by their diversity. In just four months of public speaking I’ve spoken to many Aspies with wives and children, jobs and homes. After every speech I have given, people on the spectrum have come up to me and told me I could have been describing their lives and that what I said really resonated with them. To say that I am ‘atypical’ and cannot relate to others on the spectrum is therefore simply wrong.

It has also been assumed that, because I take a positive, hopeful view of the prospects for those of us on the spectrum, I shouldn’t speak for those who don’t have it as ‘easy’ as me, or the same ‘advantages’, as though I lead a blessed like free of strife and woe. I don’t think anything could be further from the truth. I could offer to show all my self-harming scars from years of struggle, but instead I’ll say what it took to attend the autism conference to show how ‘easy’ it was.

As a stay-at-home dad/unemployed guy with a two-year-old, a seven-week-old and an autistic wife who can’t be left alone with the kids for more than a couple of hours, attending the conference was tough. First, my wife was very abusive when she first found out about it in April because she was scared of me going away and her not being able to cope; despite organising for people to sit with her while I was away, and for her to stay at her mum’s, she remained hostile about it right up until the time I left, telling me I would likely be killed by terrorists in Belgium and that I didn’t love my family, etc., etc. This is what she does when she is feeling vulnerable – she goes on the attack.

As I tried and failed to book a flight to Belgium (I found it too difficult, for while I am capable of some things, I’m incapable of many others), I sought help from my dad, who agreed to drive me. He wanted to take the Channel Tunnel, but as I’ve been on it before and found it claustrophobic, I asked for us to take the ferry because I was worried I might have a panic attack.

On the day of the journey I was up at 3am with the baby and didn’t return to sleep. I left home at seven and it took more than twelve hours of travel to reach Oostmalle. Upon arrival, I was terrified, had an upset stomach, and struggled to keep my anxieties in check.

Entering the conference centre, I was confronted by 200 Dutch people eating dinner, drinking in the bar, and milling about in a noisy, dark environment. The organisers sought me out and directed me to the ‘English Corner’ where Sophia Grech sat with Luke Jackson, two titans of the autism community. So I dug deep, swallowed down my fears, and introduced myself.

After an hour of trying to hear people over the noise and hiding behind a bottle of Coke, my father drove me to the hotel. I rang home to check on things, to find my wife sobbing, the baby screaming, and my toddler crying down the phone, ‘Mummy very sad! Mummy very sad!’ Not easy.

After my dad went to sleep, I worked on my speech, as this was the first opportunity I’d had to be in a clear headspace – or as clear as it could be.

In the morning, I was really panicking. I had to take pills for my upset stomach, struggled to breathe, and wasn’t sure if I’d be able to keep my heart inside my ribcage. As we arrived I puffed out my cheeks, blew out my breath, and flapped my hands like a baby bird trying to take flight. And then I forced it all inwards and painted on my mask, my happy, confident face, and entered the fray.

The speech went well, very well, in fact. I really felt as though I made a difference, and the feedback afterwards showed that it went down a treat. For the next few hours I hung around with Luke and Sophia, and despite my fears, they were two of the coolest, nicest, most down-to-earth people you could hope to meet, with stories and experiences and ideas very similar to my own. In fact, to find myself in such agreement with others was both a rarity and a validation of my own views on autism.

The next day, exhausted and headachy and socially hungover, dwelling on every word I’d said in my speech and worrying if I’d done justice to the wider world of autism, I got up at six to leave at seven for the twelve hour journey home, whereupon I immediately resumed my parenting and caring roles.

I mention this to show that while things might be hard, those of us with autism can achieve amazing things if we have the courage and drive to confront our problems and refuse to let them hold us back. And if people still think I don’t understand what it is to struggle, that I don’t find things difficult enough to be a ‘proper’ Aspie, and that my life is too easy to be relatable, then it says more about them, I think, than it does me.

So why do I do it, if I find it so hard? I do it because I can do it, and I genuinely want to help. My life has been so hard I want to make things easier for others, and if sharing my experiences, opinions and coping strategies can make an autistic person’s life just a little bit easier, that’s what I’m going to do, regardless of whether critics think I’m entitled to or not.

I’ll leave you with the comments of a girl in my village who also has autism. She has struggled all her life but is now doing voluntary work and trying to make something of herself. She’s quite open about the fact that she isn’t articulate enough to describe what it’s like living on the spectrum and doesn’t have the confidence to speak in front of people anyway. Here is what she wrote on my Facebook page a few weeks ago:

‘You’re amazing and you’re doing a great job for everyone else who has autism like you and me and everyone else. I’m really proud of you.’

And the other day she wrote:

‘I and everyone else with autism is going to look up to you. You change people’s lives. Congratulations.’

Am I entitled to speak for others on the autism spectrum? I’ll leave you to decide.

 

A Heart Made of Iron

When I was a kid, walking to middle school each day, the teenagers I passed on their way to the upper school seemed like giants. Tall, stubbled, confident and proud, their uniforms modified to reflect their unique personalities, there was nothing they couldn’t achieve. They were gorgeous, the closest I ever got to movie stars or comic-book heroes. At least, that was the impression of an insecure, anxiety-ridden social outcast with four eyes, goofy teeth and chronic asthma.

One day, I thought, when I’m that age, it’ll all come together, it’ll all make sense. I’ll be strong, I’ll be capable, I’ll be able to cope. Teenagers are made of iron.

A few years later I became a teenager, and lived as a pimply-faced, hormonal, anxiety-ridden social outcast. I saw adults with their jobs and pensions and mortgages and I thought that when I became an adult, it would all come together, it would all make sense, and I’d finally be able to cope. Adults, I thought, are made of iron.

By the time I was twenty-five, with many years of work and study behind me, I was very much aware that growing older wasn’t actually making me feel any stronger or more capable or better able to cope. As a depressive, anxiety-ridden social outcast, I looked at people with children and I thought, wow, look at them – they’re so strong, and capable and able to cope. And I figured that when I had kids, it would all come together, it would all make sense. Parents, after all, are made of iron.

As the father of a nineteen-month old, I can tell you for a fact that I am not made of iron. Quite the contrary, actually. I might give off the impression of competence, might fool people into thinking that I’m coping perfectly well, but the truth is that I’m just very good at faking it.

In reality, I’m a little tender at the moment. A couple of weeks ago, my precious little darling discovered how to scream, and the tantrums I thought we’d experienced before were actually mild disagreements because they are nothing like what she does now.

What was hitherto a very well-behaved child has turned into a monster. Half the time, I don’t know whether to give her a hug or call a freaking exorcist.

She screams and kicks and fights every time I try to change her nappy. At breakfast she screams because she wants my food, not hers, my coffee, not her water. She screams because I won’t take her for a walk every time she wants, she screams because we won’t have dawn-to-dusk Peppa Pig, she screams because I want to go to the toilet, she screams because she steals my nose and I’m not really fussed about getting it back, she screams because I make her wear a coat to go out in the cold, she screams because I put her in a seatbelt in the car, she screams because her hands and face are dirty but she screams when I wipe them clean, she screams when I make dinner, she screams because she can’t feed her dinner to the dog, she screams because I wash behind her ears, she screams because I get her out of the bath, she screams because I dry her hair, she screams because I kiss her goodnight and she screams because I turn out the light. Phew. It’s a lot of screaming.

What’s worse is that she has an upset stomach at the moment, precipitating a greater number of nappy changes than usual, each resulting in me getting kicked in the chin, stomach and testicles; she has a nappy rash, meaning nappy changes are even more violent as I fight what seems like a wild animal in order to put on the cream; and she has developed a severe aversion to bedtime that provokes at least three hours of screaming every night.

The nightly ritual was so easy just over a week ago. Night night mummy, night night doggy, up the stairs, brush teeth, into pyjamas, read a story, pick a book for bed, into the grow bag, big kiss, lights out, silence. Bliss.

The nightly ritual for the past eight days: ‘It’s bedtime, say goodnight to mummy.’ Huge screaming fit, tears, purple face, stamping feet, I go to pick her up and she runs away and then hisses and struggles and lashes out as I catch her, screams all the way up the stairs, mega-violence at the nappy change/pyjamas, very quiet when I read her the bedtime story, then mega screams and struggles as I put her to bed. Lights out causes a guttural, alien, hacking snarl-growl, like two demons having a fight, which goes on for around ten minutes, accompanied by thuds as she thrashes about in the cot, before descending into choking, spluttering, dying sounds that mean I have to go calm her down or else I’m afraid she’ll die. It takes a long time to calm her down once she’s worked herself up into that state, and as soon as I’ve got her quiet and breathing properly again, I go to put her down and the whole ordeal starts again.

I’ve sung to her, rocked her, read to her, let her come downstairs, ignored her, and always the same result – screaming that devolves into a choking, coughing total loss of all control, which stretches from her usual bedtime at seven until gone ten o’clock. And that’s before I mention the two or three times she’s up in the night nowadays. Where before, bedtime was a blessing, it has become a nightmare.

Eight days, three hours a night, is 24 solid hours of screaming tantrums in a week. It might not sound like a lot, but when those three hours of screaming follow a twelve-hour day of regular screaming fits, trust me, your whole world shrinks down to tears, red faces and an ever present sense of drowning.

My wife’s means of coping is to ignore it, to go out and forget about it and leave me to deal with it – after six pm, and for much of the day, I’m a single parent. I could switch off from it too, I suppose, but hours and hours and hours of my daughter screaming and crying and getting herself so upset that she’s choking is not something I can just rationalise away and get over. I feel horribly sensitive, bruised inside and out. I feel like I want to burst into tears. When I’m holding my screaming, struggling child I have to fight with every fibre of my being not to run away and hide. Just five minutes, I think to myself. Dear God, five minutes surely isn’t too much to ask?

I’m still waiting for the day it’ll all come together, it’ll all make sense, and I’ll be able to cope. Until then, I’ll just have to fake it. Until then I’ll use what little strength I have to pretend I’m made of iron. Unless someone could recommend a cheap nanny?

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…

The Fear

This week I encountered The Fear. He was on a holiday park in North Devon, of all places, roaming between the static caravans that sit on a hillside overlooking the bay. I’m pretty sure most parents meet him at some point, but this week was my turn.

I’ve been anxious about Izzie before, concerned about her safety, worried about the future, but it’s always been small scale, fantasy-land fear, the kind you get before the dentist or a particularly unpleasant meeting – you’d rather avoid it, but you know that if you have to face it, you’ll get through the discomfort because it’s not really actually all that bad. The Fear is another matter entirely.

It crept up on me unannounced. Everything was fine – a bright, crisp morning, fluffy white clouds scudding across an azure sky, the ocean stretching out below us towards the horizon. Lizzie was walking down the hill holding Izzie’s hand and while I locked up the caravan, my little girl looked over her shoulder at me, the breeze tousling her hair. Her face was a picture of innocent joy, her toothy smile so infectious as she waved at her daddy that in that moment I knew what it was to be loved and what true happiness felt like.

And an instant later I was struck by The Fear – the all-pervading, nausea-inducing, gut-wrenching, knee-weakening presentiment that I would lose her.

The closest I’ve come to this feeling before is when Izzie was around three months old. I went into her room in the middle of the night to check on her and she was so still and quiet I thought she was dead. My first thought – nay, instinct – was to travel to wherever she had gone, because she needed me and I couldn’t bear the thought of not being there for her. Short story even shorter, she wasn’t dead, she was just asleep – but the incident cleared up any lingering doubts about whether I truly believed in the hereafter.

The Fear wasn’t like this at all. It didn’t come from anything scary but from something joyous. It was as though upon reaching the heights of happiness, my body reacted and rebelled, viscerally and violently. Out of the clear blue sky I was filled with the most terrible and heartbreaking dread.

I’m not just talking about death, though that’s a given – cancer, meningitis, kidnap, murder, an accident, The Fear showed me it all – I’m talking as much about change. If I could have frozen that moment she waved at me with innocent joy, I would have done, because right now Izzie adores me – I’m the smartest, coolest, funniest, most-lovable chunk of a man she knows. But all that will change, and quickly too. My days as my daughter’s faultless hero are well and truly numbered.

I spent all that day with The Fear. Maybe, I thought, it’s here because I was talking to somebody about Seneca a few days ago, and his belief that your mind is the only thing you can rely on as everything else you can lose – friends, family, status, job, home, health, hair, all of it. Or maybe, I thought, I’m preoccupied with losing Izzie because police believe they might be days away from locating the body of Ben Needham, a British 21-month-old who went missing 25 years ago in Kos. Or perhaps it’s because I had the unfortunate experience of overhearing a fourteen-year-old girl and her mother screaming life-affirming statements at one another like, ‘I’ve effing had it with you,’ ‘you effing well ruin everything,’ and, ‘I wish you were effing dead!’

But that’s not it at all. If it was, The Fear would be with me all the time. No, it’s because in that moment of perfect happiness I realised my unbridled love for another person – and simultaneously my utter and total vulnerability. Izzie has me, heart and soul, and if anything happens to her, I would be destroyed. The Fear was a safety mechanism, a reality check, because I was walking too close to contentment, and believed my happiness to be immortal. Keep away from the sun, Icarus, or you’ll fall into the sea.

And that is the dilemma of parenting. You give yourself and hold nothing back, but in so doing you risk everything. Your fate is tied to that fragile, fickle bundle of cells you call your child. And the price for your joy is The Fear, cropping up when you least expect him, reminding you you’re dancing with a moonbeam that can never be contained.

But in the meantime, long live this moment.