Tag: autism

A Heart Made of Iron

Gillan DrewLeave a comment

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?

Mondegreens, urology, and bringing sexy back: Autism and Language

Gillan Drew3 Comments

As the father to a nineteen-month old daughter, I’m deep in the throes of teaching her to communicate. For one thing, our nappy-changing conversations have become a little one-sided and repetitive for my tastes, and for another, it would make it a whole lot easier working out what she wants, what she doesn’t want, and what she’s getting stroppy about if she could just say, ‘Dad, I want to eat the cat’s breakfast instead of this slop,’ or, ‘But why can’t I put this screwdriver into that plug socket?’

Unfortunately, as a person with autism, a condition that is pretty much characterised by difficulties with communication, there are a number of potential difficulties ahead. As my wife also has autism, and a different set of communication problems, the job becomes even more fun. Not that we don’t know how to talk or communicate, of course – I wouldn’t be able to write this if that were the case – but there are some oddities in how we use and understand language.

A case in point is onomatopoeia. We are teaching Izzie animal sounds – moo, baa, eeyore, and suchlike. Like a lot of people with autism, my wife Lizzie struggles to alter the tone and pitch of her voice to express emotion or replicate sounds. On the musical scale, she can do doh, re, mi and fa, but that’s her limit, so she has a very narrow vocal range and thus a somewhat monotonous delivery. She also has limited volume control, her voice being either quiet, loud or shouting. This means that no matter what animal she’s doing an impression of, it tends to sound like a drunk guy being kicked in the nuts. Which works when it’s a donkey braying. Not so much the cat’s miaow. She’s very good at simply reading the words.

My problem with onomatopoeia is the opposite. I think my animal impressions are rather good, and my voice ranges from a passable bass right up to a passable falsetto, but I cannot read a ‘sound’ word as a word. When I was five I had to read out in class from Funny Bones. There’s a page where a mouse was saying ‘squeak, squeak, squeak,’ and I read it in a high-pitched, squeaky voice that made everyone including the teacher laugh. The truth was, I couldn’t read it any other way, and I still can’t. For this or with any other onomatopoeia.

It’s embarrassing. I can’t say my chair is squeaking without sounding like a pubescent boy on the final word. I can’t describe a loud BANG! without making everyone jump and I can’t say the word whisper in anything other than a whisper.

It’s wrecking my ability to sing Old MacDonald because I can’t make ‘moo moo here’ or ‘baa baa there’ fit the rhythm, since lowing is moooo and bleating is ba-a-a. And if you’re at a parent-toddler group and you can’t even manage to sing Old MacDonald, you’re definitely not seen as a doyen of the literati.

Another difficulty is mishearing sounds, or rather, hearing them properly but failing to connect them in the right way. For many years at school, I shared a class with a girl called Antal Mage. I thought she had the coolest name ever, like a heroine from a fantasy novel. Then came the disappointing day I was handing out exercise books and discovered her name was Anne Talmage. Not nearly so exciting, and no wonder she used to look at me funny every time I said, ‘Morning Antal.’

I often mishear songs too. For twenty years, I thought the chorus of the Radiohead song ‘Creep’ was, ‘I’m a creep, I’m a widow’. How sad, I thought – people should be nicer to the bereaved. Then I discovered it’s actually ‘weirdo’. Changes it entirely.

For the past fifteen I also thought ‘Can’t Fight the Moonlight’ was about a mum trying to hide her dalliance from her offspring – ‘You can try to resist, got to hide from my kids…’ Although to be fair, I seem to mix up ‘kids’ and ‘kiss’ quite a lot, since I thought Paloma Faith’s ‘Only Love Can Hurt Like This’ contained the line, ‘Must have been my deadbeat kids’ (it’s ‘deadly kiss’, FYI).

Of course, mishearing song lyrics is not exclusive to people with autism. There’s even a word for it – mondegreen. But even when I hear them right, I can still struggle to understand the meaning.

For the past ten years, I thought Justin Timberlake’s ‘SexyBack’, with the chorus ‘I’m bringing sexy back’, was the oddest song I’d ever heard. I mean, backs just aren’t sexy. It’s not like anyone ever said, ‘Put your boobs away, I want to see your back, yo.’ And I always thought it was a bit derogatory talking about people in terms of their physical attributes.

‘Who you bringing to the party, dog?’

‘I’m bringing Hairy Upper Lip, how bout you?’

‘I got a date with Freckly Belly. Hey Justin, you got a date for the party?’

‘Yeah, I’m bringing Sexy Back.’

I get it now.

My misinterpretations aren’t just limited to songs. I went on a coach tour a few years ago, and one stop was the museum of the Berlin Airlift. I looked around this museum for an hour, taking in the stories of the Soviet blockade, the fact they had to fly in supplies around the clock, gazed at the model aircraft, the photographs of airfields, the medals awarded to the pilots, and then I called over the guide and said, ‘I can see all the planes, and stuff, but where’s the Berlin Airlift?’

He looked at me blankly before gesturing outwards with his arms. ‘It is all around us,’ he said. ‘This is the museum of the Berlin Airlift.’

‘Right,’ I said, confused. I’d seen some stairs. No lifts, though. Nothing that would fit the grandiose title of The Berlin Airlift. It wasn’t even a very tall building. Why would you install a pneumatic elevator in such a structure? And why make a museum about it and then fill it with aeroplane models? Made no sense to me whatsoever.

I didn’t get it until after we’d left.

Just like last year when my parents asked me to stay at their place one day because they were having some tablets delivered. Mid-morning, a delivery man turned up with two iPads. I took them and waited, and waited, and waited, and nobody else turned up. My folks eventually called and said, ‘Have our tablets arrived?’ and I said, ‘No, I’ve waited in all day, and all that’s been delivered are a couple of iPads. Just how important is this medicine you’ve ordered?’

Misinterpreting the intended meaning behind single words is often humorous, but given that those of us with autism often take things literally, it can sometimes get serious. Like when I was seven and my grandfather told me to jump out of the bath – I jumped, two feet together, and almost killed the both of us. Or when my dad asked me to chuck him his toolkit, so I literally chucked his toolkit at him (CRASH! WALLOP! Onomatopoeia!). Or that time somebody said, ‘Throw that bottle in the bin,’ so I threw it, and showered us both in broken glass. You have to be careful how you phrase your requests to me!

Normally, if I concentrate, I can overcome this problem and detect the wider nuance or significance of a request – what they have asked me to do versus what they probably want me to do. If I’m tired or distracted, however, like, say, I’m the parent of a toddler perhaps, I can go full Aspie. And when I do that, it can really get me into trouble.

The other week my wife asked me to check in my safe to see if her birth certificate was in there. This I duly did, and it wasn’t, and I told her it wasn’t. An hour later I noticed her pulling out drawers and throwing things out of cupboards in what I shall politely call a highly agitated state.

‘What are you doing?’ I asked.

‘I can’t find my birth certificate!’ she cried.

‘Oh, that’s in my filing cabinet,’ I replied.

She looked at me, daggers for eyes.

‘What?’ I asked.

‘You knew where my birth certificate was all this time?’

‘Yes, that’s where I keep them,’ I replied.

‘Well why the hell didn’t you tell me that an hour ago when I asked you to look in your safe for it?!’

‘Because you said to look and see if it was in my safe. And I did, and it wasn’t. You didn’t ask me if I knew where it was.’

I understand why she got so upset (though I’m not sure threatening to divorce me was warranted), and in hindsight, yeah, I was being kind of dumb. On the other hand, I was being kind of autistic.

And she’s not exactly perfect herself. The other day I asked her what she was doing.

‘I’m reading a urology,’ she said.

‘A what?’

‘A urology. You know, when someone says nice things about the dead person at a funeral.’

Aah…when it comes to teaching our daughter to communicate, I think we’ve got our work cut out for us!

Peppa Blooming Pig

Gillan Drew6 Comments

My wife, who I used to love very much, spent about six months buying up all kinds of Peppa Pig merchandise in an attempt to get Izzie into Peppa Pig. Over the past couple of months it has paid dividends, because the little one is now obsessed with it. And my feelings towards my wife have become rather complicated since she’s the one who inflicted the Pink Horror upon this household.

Every day I have to help Izzie colour in pictures of Peppa Pig, load the massive Peppa Pig teddy into the Peppa Pig pushchair, resist her demands to wear her Peppa Pig tights (and only her Peppa Pig tights), put Plastic Peppa on the rides in her Plastic Play Park, read her Peppa books, push the Peppa car and the Peppa train, and make lunch on the Peppa plate with Peppa bowl and serve her Peppa yoghurt with a Peppa spoon. That’s before I mention the Peppa sticker book, Peppa pyjamas, Peppa Mega Bloks, Peppa Weebles, Peppa backpack, Peppa Wellington boots and Peppa toothbrush.

Now, in all honesty, I don’t have that much of a problem with this – if it wasn’t Peppa Pig, it’d be something equally as crass and commercialised. And the show itself, which I’m forced to watch at least four times a day as Izzie jumps up and down singing ‘Bear-per Big, Bear-per Big,’ isn’t completely horrible –  although I’d rather the little one would still be happy watching the family-friendly crap we used to enjoy together, like Hunting Hitler and Curse of Oak Island and sometimes Ghost Adventures (don’t judge me). But as a grown man, and particularly a grown man with autism, there are some things about Peppa Pig that drive me freaking insane.

Like the stories. Ever since I was a kid, watching things like The Littlest Hobo, Airwolf and The A-Team (I said don’t judge me!), stories had a start, middle and end. Start: when property-developing hicks arrive to bully some downtrodden woman with a perm off her dirt farm, they are soundly routed by the A-Team. Middle: the baddies respond to this with escalating TV-friendly violence, culminating in the capture of the A-Team. End: having been locked in a machine shop with all the tools necessary to make a flamethrower tank out of a washing machine, the A-Team bust out and save the day. Yay!

Peppa Pig doesn’t work like this. I’m not asking for narrative complexity in a five-minute children’s show, but the programme starts, and just when it’s building up to something, everyone falls down laughing and it ends, leaving you staring at the screen going, ‘What? Where’s the resolution? Where’s the climax? You said you were going to Pirate Island, you’ve only just got there and it’s the end credits? Where the hell is the third act? What was the point in all this? We haven’t been on a journey! We haven’t learnt anything! We haven’t followed a character arc! All we’ve done is kill five minutes!’

Okay. Maybe I am asking for narrative complexity from a five-minute children’s show.

But then there is the Pig family, who are equally as annoying. They are Mummy Pig, Daddy Pig, Peppa Pig and George. Why is he not George Pig? Why is he never referred to as George Pig? Why set up a pattern of ‘syllable-syllable surname’ and then abandon it? Or is George not really one of them? Is he actually a boar that they’ve kidnapped and are raising as their own? Whatever the case, I don’t anticipate an answer any time soon.

Another unexplained betrayal of internal logic is the animal hierarchy. I’m right behind the whole talking animals thing, and barnyard beasts adopting anthropomorphic characteristics, but how come Dr Hamster has a pet tortoise? What on earth in the Peppa Pig universe makes a hamster good enough to go to veterinary school, but a tortoise into nothing more than a pet? How come a rabbit is now a person but a budgie is still an animal? It makes no sense.

Just as the animal groupings make no sense. You have rabbits in a class with a fox. The neighbours to the Pig family is the Wolf family, and I’m no expert on wildlife but my knowledge of nursery rhymes implies that wolves and pigs don’t really mix. And if the prey animals like rabbits, deer, antelope, cattle, pigs, etc., are now people, does that mean the carnivores are now vegans? Or are there an awful lot of murders in town where the victims appear to have been devoured?

But the most annoying part of the whole programme is Miss Rabbit, and it’s not just because she has a voice that could strip wallpaper. She is the local bus driver. And she works in the local shop. And she’s the librarian. And runs the ice cream stall. She’s also a firefighter, and operates a rescue helicopter, and flies a hot air balloon. And she’s a nurse, and a dental nurse, and a train driver, and probably a rocket-ship pilot, deep sea diver and forensic pathologist too.

Look, I know it’s for kids, but is a little logic and consistency too much to ask?

Autism and Empathy

Gillan DrewLeave a comment

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’.

Alone and Afraid

Gillan Drew1 Comment

It’s amazing how kids can unlock parts of you that have long lain dormant.

As an adult, it’s not often that I’m afraid. I was often afraid as a child, especially of the dark, but as soon as I realised there were no monsters hiding in the woods – no supernatural ones, anyway – that visceral, uncontrollable, preternatural fear that was programmed into our ancestors’ DNA to keep them safe faded into an erstwhile caution. Of course, having autism and social phobia, I’m used to an all-pervading anxiety, but out-and-out fear is a different entity entirely, and something I’m not particularly familiar with.

I’m far too rational, sceptical and sensible to feel true fear. I went through a period in my early twenties when I decided to test myself, so I did bungee jumps and threw myself out of airplanes, climbed mountains, descended into caves, watched every scary movie I could lay my hands on, visited witches and mediums, hung out in graveyards after dark, crossed rickety rope bridges, trekked through rainforests, slept in wooden huts on barren hillsides, and learned to scuba dive down to a depth of 100 feet in a place called Shark Bay. I’ve been nervous, sure; anxious, definitely; but afraid? Not really. I analyse, process, plan, prepare, adjust, and execute. Control the variables. Assess the risks. And trust in myself. What’s to fear?

Which is why I was thoroughly unprepared for how afraid I felt in the early hours of Saturday morning.

Late Friday evening, my wife Lizzie fell ill. Like, end of the world in a frying pan ill. So I packed her off to bed early with a hot water bottle and a handful of drugs, and the understanding that she would be of no use for at least the next 24 hours. If the house caught on fire, the dog grew an extra head, the chickens started eating meat, or the fish learned to fly, it would be up to me to keep it all together. But I’m used to that, so without a care in the world I put the baby to bed and settled down to a pleasant evening of reading/watching TV/killing aliens, depending on which took my fancy.

Half midnight, my daughter Izzie started screaming. So far, so normal. Except this screaming didn’t stop when I put her dummy back in and laid her back down in the cot. If anything, it got worse. If anything, it was the worst screaming I’d ever heard.

I picked her up, I cuddled her, I sang to her, I danced, I whispered, I begged, but she only grew more agitated, trying to fight me off, choking on her own screams. I took her downstairs, tried milk, tried water, tried biscuits, all to no avail. She was frantic, distraught, so agitated I thought she might suffocate or have a fit. Her face was bright red, her expression horrible. Tears and snot and dribble were everywhere, making her choke, and still the dreadful sobs, the heart-rending screams. Oh God, I just wanted to be able to do something, anything, to help, to stop the screaming, the distress writ large across every aspect of her being.

And it was then, one in the morning in the lounge, unable to do a thing to comfort my daughter and knowing I was totally alone, that I felt afraid. Terrified, in fact. And there was something instantly familiar about this fear, because I’d felt it before. When I was twelve. In a heartbeat, I was twelve again.

This story begins when I was ten. We were on holiday in Spain, and with my twelve-year-old brother, we befriended an older boy on the campsite. I suppose he must have been about fifteen. At some point we went to the swimming pool, at dusk, unsupervised, which was fine because my parents were having drinks with his parents in the caravan awning and he seemed a nice kid and there was a lifeguard and they told us to stay at the shallow end and this was completely normal. But that night wasn’t normal at all.

In the pool he had a couple of other friends who were a few years older than him. One of them had long hair and stubble and I’m sure was eighteen, the other maybe seventeen. And at some point, the three of them thought it would be fun to drag little ten-year-old me out of my depth into the middle of the pool and duck me under the water.

The sky was dark by then. I wasn’t a big fan of water. I hated being under the water. They held me under. I writhed, I fought against them, my arms flailing. My terror seemed to amuse them. They ducked me again and again. I couldn’t touch the bottom. They’d let me up for a breath then hold me under again. My brother watched from the shallow end. Each time my head broke the surface my ears would ring with their laughter. They kept passing me between them. Sometimes they’d let go, and I’d try to swim away but they’d grab me and start up again. I thought I was going to die. Between mouthfuls of water I screamed at the lifeguard for help. He watched with a smirk on his face – the one adult, the one person who was meant to keep me safe, enjoyed my suffering. I was frantic.

Eventually, they let me get too close to the side – I grabbed the metal steps. They were bigger, holding onto my arms, and there were three of them, and they certainly didn’t want me to escape and ruin their fun, but there was no freaking way I was ever going to let go of that railing – I thought that if I did, I would die, and thus I literally clung on for dear life until I managed to drag myself from their grasp.

Afraid they’d now target my brother, who was stupidly sitting in the shallow end, completely oblivious to the danger, I shouted at him to get out and fled from the place I had been sure I would die. Maybe it didn’t look so serious from the outside. Maybe they only held me under ten seconds at a time. But if you’ve ever been held under water by strangers when out of your depth, ten seconds might as well be a lifetime. I was traumatised.

Skip forward a couple of years. We were on holiday in the south of France with three families my parents were friends with, each of whom had kids the same age as my brother and me. We spent a day at a lake and, in two inflatable canoes, the eight of us kids paddled out to an island in the middle. It was meant to be great fun, exploring the unknown – I was excited by it. It might even have been my idea. But it went horribly wrong the moment we got there.

The second my feet hit the sand, I freaked out. It was, without a doubt, my first panic attack. The rest of the kids ran up the beach, darting about the rocks, climbing into the dunes, flitting about the bushes – I sat on a boulder, hugging my knees and rocking forward and back, my skin crawling and every sense telling me that something was wrong and I wanted out. I asked to go back, I demanded we go back, I kicked up such a fuss and ended up so crazed they finally boarded the boats and we set off.

The end of this affair was captured on that ultimate early-90s status symbol – the camcorder. My parents filmed our return journey, the arguing in the boat, and my decision to leap into the water half-way across and swim the rest of the way to shore as it was taking too long. It even made it onto our yearly Family Video – that kooky Gillan, what’s he like?

My brother put my behaviour down to me being an arsehole, and my parents probably agreed – in all fairness, erratic, disruptive and destructive behaviour was hardly out of the ordinary for me, given I had autism and it wouldn’t be diagnosed as such for a further sixteen years. But the feelings that triggered the episode were certainly new, and being an introspective sod, even as a twelve-year-old, I decided I had to get to the bottom of why it happened.

Ultimately I realised that my fear on that beach beside a lake in the south of France was a direct result of my experience two years earlier in a swimming pool in Spain. The moment I stepped out of the canoe I was alone with a bunch of children, no adults around, no rescue, no safety, and my vulnerability in that situation was more than I could bear.

In the early hours of Saturday morning, as Izzie screamed and choked and sobbed, while upstairs my wife lay ill in bed, I was back on that beach. I was a child again, with nobody to save me, nobody to protect me, only myself to rely on in all the world. I had no idea what to do. I was trapped in the situation as surely as I had been years before in a swimming pool at dusk. And I was afraid.

I hadn’t thought of those experiences in years. I hadn’t felt those feelings in forever. I have been an adult almost all of my life. My daughter made me a child again.

And then she vomited all over me.

And I’ve never been so relieved.

Autism and OCD: the Sacred Half-Banana

Gillan DrewLeave a comment

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…

Casualties of the Parenting War

Gillan DrewLeave a comment

There’s a line in The Hunt For Red October where defecting Russian submarine captain Marko Ramius says something along the lines of, ‘It’s a war without battles, without monuments…only casualties’. He’s talking about his dead wife at the time, but I’ve always taken it as a description of the Cold War as a whole: two great nations circling one another like prize fighters, watching, waiting, testing, provoking, through storm and shine, day and night, summer and winter, year on year, the dead on each side mounting up from accidents, collisions, clumsiness, fatigue, bravado, without a shot being fired or any open form of hostility being declared.

The relationship between parent and child is a lot like that.

I have been kicked in the nuts more times in the past few months by my daughter than I ever was by the jackasses I went to school with, and believe me, I used to get kicked in the nuts a lot. I’ve been punched in the face, headbutted on the nose, had fingers rammed into ears and nostrils and down my throat, been strangled, throttled and choked, and had almost every hair on my body pulled, tweaked or ripped clean out. At the moment she enjoys jumping on me, hitting me, throwing things at me and smacking me around the head with whatever’s at hand. And lately she’s discovered the joys of poking her plastic toy forks in my eyes – cheers for that, sweetheart!

Then there are the accidents: as a person with autism, I have a tendency towards clumsiness, which generally translates to walking into things, banging my head on things, tripping over things, and falling down a lot. Many times I’ve hooked my foot around the leg of Izzie’s high chair, refrained from grabbing onto it as that would be dangerous, and thus fallen like a ton of bricks to the floor. Many times I’ve been holding her hand in the street and watching to make sure she doesn’t walk into anything, only to crack my shin on a bollard myself. And getting her lunch out of the oven today, I burned the back of my hand on the shelf.

The worst thing at the moment though is my back. The other day I was opening her pushchair on the quayside, pressed down on the foot-plate, got my shoelace caught in the mechanism, and fell flat on my back in front of a whole cohort of leather-clad bikers, pulling the pushchair over on top of me, bruising my ribs and wrenching my spine and shoulder in the process – I couldn’t lift my right arm for hours after.

Perhaps as a result of this fall, or perhaps because I carried her around on my back up and down cliffs and over hill and dale all last week, I made my back susceptible to further damage. You see, I have a semi-slipped disk in my spine, not bad enough to do anything about, but bad enough that every few years it trips and leaves me bedridden for days. And it’s tripped.

A couple of days back I put Izzie in her cot for a nap, bent down to pick up the nappy I’d just changed, and the next thing I knew I was on my elbows and knees with my forehead pressed into the carpet and my lower back muscles in agonising spasm. And a poopy nappy right under my cheek. Luckily, although I can barely walk, hobbling around like the Hunchback of Notre-Dame, I can actually walk. For now. Izzie still needs putting in and out of her high chair and her cot, bathing, changing, dressing and all the other back-breaking tasks of parenting, and in spite of the pain, it’s what you have to do. But in all honesty, it hurts like hell.

For her part, Izzie has the good grace to freak out every time I fall down and hurt myself. And it’s not exactly all one-way traffic.

When she was on my back last week, I did on one occasion walk under a low branch and hear a rather dramatic thud. More than once I’ve knocked her head on the top of the car door when I’ve been putting her in her car seat. She tried to run away from her shadow the other day, tripped and face-planted on the patio, tearing open her knee. A couple of weeks ago I was lying on my back on the floor when she charged at me and stumbled, slamming her head against mine and cutting her chin open on my tooth (I felt so freaking guilty as the blood poured down my T-shirt!). And every day she adds to the bruises on her legs and arms and forehead as she trips and falls and bashes into things and bounces off your knee and tumbles off the sofa. It’s a jolly good thing toddlers are resilient or else she’d feel as rough as I do now!

And that, fair readers, is one of the little-discussed aspects of parenting: without battles, without monuments, you will injure the crap out of each other. There will be blood, there will be tears, and sometimes you’ll feel like you’ve gone ten rounds with Mike Tyson, but ultimately you’ll look back on it and laugh – that is, unless she puts your eyes out first!

Failure and success in writing

Gillan Drew1 Comment

Regular readers of this blog might have noticed that the frequency of posts has dropped off lately. For this I must apologise and explain.

In my core I am a writer. Ever since I was a child, four or five years old, I’ve wanted to be a writer. I always said I’d write a book one day, and then when I was eight I wondered what the hell I was waiting for and started. The result was Mystery of the Samurai Kidnapper. Needless to say, it sucked, but I was hooked.

I wrote all kinds of stories and read everything I could – action, adventure, crime, horror, science-fiction, war. When I was sixteen I began writing seriously, and at eighteen started sending samples to magazines and agents and publishers.

Skip forward eighteen years and I’ve written nine books, several scripts and dozens of short stories – over two million words of creative writing. I’ve come close a few times – I had a call from Ian McEwan’s agent once to discuss my novel The Butterfly Collection, and nearly nabbed an agent from Blake Friedmann for Beyond Wild, only to fall at the final hurdle – but other than a few short stories, I’ve been remarkably unsuccessful at getting into print. It goes with the territory.

But earlier this year I felt I was on a roll. I entered twelve writing competitions. Normally I just take a punt, but these were twelve of the best best things I’ve ever written – I actually thought that this time I had a shot.

Some were for short stories, some for the first 5000 or 10,000 words of a novel. I worked like a dog, polished them to perfection, then waited with bated breath. I hoped to win, but I knew I’d be happy just to be short-listed in one of them. It would make all the years of sacrifice worthwhile.

Over the past few months, the competition results trickled in, one at a time. And with each one, my hope and joy gave way to bitter disappointment. I didn’t win any. I wasn’t short-listed for any. I wasn’t even long-listed for any. It might sound like sour grapes, but that last rejection in early July crushed me.

Rejection is part of being a writer, and you have to be resilient. To put it into perspective, JK Rowling recently spoke of her pain at having Harry Potter rejected twelve times. When that last competition declared, it brought my rejection count up to 327.

As a father, I have to act happy for my child. I have to make out like everything’s fine and dandy and be the same as I always am. So I did. But inside, I was broken. It took all my focus and energy to hide it. The last thing I wanted to do was write this blog.

So I sat, and I festered, and I wondered if I would ever bother to write again.

But, to quote a cliche, it is always darkest before the dawn.

I’ve been awarded a publishing contract! It’s for a book I’ve written on living with autism, provisionally entitled An Adult With Asperger’s: A Guide for the Newly-Diagnosed. It’s being published by Jessica Kingsley Publishers and will be coming out in the spring, and so I’m working around the clock to get the final draft ready in time.

As you can imagine, my mood and my self-esteem have both improved no end. I’ll try to keep posting every week on this blog as normal and I’ll keep you posted on the book as more details emerge.

I guess the moral of this story is: never give up, because you never know what’s around the next corner.

Thanks for reading,

Gillan Drew, author (yay!).

Asperger’s, Parenting and Negativity

Gillan DrewLeave a comment

When you become a parent you make a decision: you decide you’re going to sacrifice your own needs in order to look after those of another. You commit to giving up your time, energy, sleep and even your life, if necessary, so that your child is kept healthy, happy and safe. And you swear you will do everything in your power to create a well-adjusted, confident, stable and successful human being.

When you have Asperger’s Syndrome, you have to make a further decision: I’m not going to let my autism stop me being a good parent, come what may.

There are a number of natural deficits that afflict parents with Asperger’s. We love routines and struggle to cope with change, two characteristics that don’t really lend themselves to looking after an unpredictable ball of poop and pee. Our rigid thinking and difficulties processing information impinge upon our ability to do the multitasking required for effective parenting. Problems with motor clumsiness make baby handling somewhat awkward, while sensory issues such as hypersensitive smell and hearing make nappy-changing a horrific burden. But none of these are insurmountable.

When I encounter sudden change, I grit my teeth and bear it, fight down the anxiety that rips through my insides, and recover later, after the baby has gone to bed. Since I get easily distracted and can’t multitask, all I do when watching the baby is watch the baby – I can’t watch TV, read a book, enjoy a coffee or even go to the toilet, and when we’re out and about I pay scant attention to the outside world, but that is the price I pay, and the decision I’ve made, to keep her safe. And when I change her nappy I hold down the disgust and queasiness, smile as though everything is fine, and get on with the job at hand.

More difficult for the Aspergic parent is understanding and meeting your child’s needs. Given our difficulties interpreting social communication and problems understanding how other people think and feel, we can be oblivious to our child’s emotional state and struggle to give appropriate support. Since we often have limited social needs we can fail to appreciate our child’s social needs and thanks to social phobia fail to provide for them. And because we struggle to understand our emotions we can have difficulties regulating our behaviour in front of our children.

Again, none of these problems are insurmountable. Just because we do not intuitively ‘get’ our children the way a neurotypical parent might doesn’t mean we can’t consciously learn to meet their needs. I get advice from other parents, books and the internet to understand my daughter’s developmental needs and how to meet them. I study her noises and facial expressions to work out what they might mean. I take her to social events, the fair, the park, to give her the opportunity to mix with other children. I know she’s looking to me for reassurance so I make sure I smile and act confident even though inside I’m on the verge of panic. Going forward, I will encourage her to communicate her needs and feelings in an open and honest fashion, and I will discuss them and adapt my behaviour to meet them.

My life as a parent with Asperger’s is all about lists, and study, and systems, and hard-thinking. I compensate for my natural deficits by using my intellect. Since I spent 28-years without a diagnosis masking my condition, I hide my problems from my daughter and refuse to let them stop me from being a good parent. It is hard, it is thankless, and it is painful, but it is the decision I chose to make when I had a child.

And it is working. At thirteen months my daughter is a bubbly, happy, confident, outgoing, highly sociable little girl who only wants to run around the park playing with children she’s never met and get involved in anything and everything that’s going on around her. She is in every way the very model of a healthy, successful human being despite having two parents on the autism spectrum.

So you can imagine my anger and disgust when, upon entering ‘parenting’ and ‘Asperger’s’ into a search engine, I was confronted by pages and pages of horrendous, prejudiced, discriminatory anti-Aspie bile.

There is a paper by a psychologist calling for parents with AS to be labelled with a ‘parenting disability’. There is an article saying an Aspergic parent raising a neurotypical child is ‘the definition of abuse’. Everywhere you look there are articles and opinion pieces about how bad Aspergic people are at parenting, and how all children of autistic parents suffer long-term psychological damage, depression and low self-esteem. It is inevitable, apparently, that our children will suffer lifelong difficulties as we are such failures as human beings.

Autistic parents, so says the rhetoric, are inhuman unfeeling monsters who are incapable of expressing love or meeting any of their child’s needs; we should have our children closely monitored and/or removed for their own welfare; and we place a massive burden on child services and mental health teams. And even if we think we’re doing a good job, we’re actually not – we simply don’t have the insight or self-awareness to realise we’re crap, abusive, emotionally neglectful parents. While it is rarely explicitly expressed, it’s hard not to get the impression that a lot of people out there think that people such as myself should not be allowed to procreate. As parents, people with AS are the proverbial lepers.

As a parent with Asperger’s, it’s hard not to be affected by such bigoted negativity. It’s hard not to let that negativity seep inside and colour your parenting experience. But the fact is, they’re wrong, so, so wrong.

True, some people with Asperger’s Syndrome will make terrible parents, just as many neurotypical parents shouldn’t have a dog, let alone a child. But because I know I have Asperger’s Syndrome, it makes me a better parent because I am constantly assessing and evaluating my behaviour and consciously adapting it to better meet my daughter’s needs. Knowing kids need to feel love and Aspergic people are rarely demonstrative, I make sure to express my love in demonstrative ways. Knowing children need to develop their self-esteem and Aspergic people are too honest, when she brings home a picture from school that I think is rubbish I will tell her how good it is and put it on the fridge. I will study, and sacrifice, and tirelessly toil to be the best damned parent I can possibly be because that is the choice I have made.

And I will fight for the rights of any other Aspergic parent who makes the same choice, because saying that people with AS are incapable of being good parents is the real ‘definition of abuse’. 

MMR and Autism

Gillan Drew8 Comments

I’ll lay out my position right at the start so those who have already made up their minds to the contrary are prepared for my vitriol: MMR does not cause autism. The MMR/autism link has no basis in reality. As an autistic father of a neurotypical child who has her MMR tomorrow, I am sick to death of people telling me that vaccinations cause autism, and I will therefore be disparaging towards the anti-vax movement and, by extension, anti-vaxxers as a whole. You have been warned.

There. Now we can get started.

To the average man on the street, the letters MMR and the word autism have been inextricably linked since the early noughties. The media had a field day whipping up a national health scare, frightening parents and misreporting the facts. As a result of this, there seems to be a general undercurrent of feeling that MMR might cause autism, that scientists don’t really know the answer, and that the jury is still out on whether it’s safe or not.

Not true. The jury is in. The jury has been in for years. But news stories about all the studies published in the past decade showing how MMR doesn’t cause autism are far less newsworthy than sobbing, guilt-ridden parents with shattered lives bewailing the fact that a vaccination might have damaged their baby. Thus the one highly questionable, discredited and fraudulent study suggesting a link between MMR and autism has received massive amounts of media coverage, and the rest have received pretty much none at all. And that makes the press equally culpable in the propagation of the anti-MMR scam.

The fact is, the jury should never have been out in the first place as there has never been any evidence to suggest MMR causes autism beyond gut feelings and anecdotes. The thing is, I understand the parents jumping on the anti-vaccination band wagon. To discover your child has autism is obviously a big thing, and when life deals you a random blow, it’s human nature to look around for someone or something to blame. Thanks to a man named Andrew Wakefield, the object of blame became the vaccination for measles, mumps and rubella.

‘Who is Andrew Wakefield?’ I hear you cry. It might surprise you to learn that he was the lead author of the paper published in the Lancet in 1998 suggesting the link between MMR and autism. Surprising, because perhaps you thought there were numerous studies and a body of evidence that pointed towards this link, rather than one solitary paper based on a test group of a whopping twelve subjects. One paper describing twelve autistic children, eight of whose parents blamed MMR for their autism, provoked a total of 1257 news articles in 2002 alone. That’s like responding to the neighbour’s kid throwing a snowball at you with a full nuclear strike.

Now, I don’t need to tell the intelligent reader that a sample of twelve children is ridiculously small to extrapolate a global theory of cause and effect. Nor do I need to point out that one study, the results of which were never repeated and which were outright contradicted by various meta-analyses of massive data sets, should be described as ‘unreliable’ at best. What I do feel I ought to point out is that not only was Wakefield’s study an anomaly, it was also found to be fraudulent.

There are two key facts you need to know about Andrew Wakefield that might help you judge the efficacy of his work. Firstly, he was paid £435,643 by trial lawyers who wanted evidence to suggest MMR was unsafe, with payments starting a full two years prior to his paper being published. Secondly, he applied for patents for his own vaccine to rival MMR. Therefore, he was paid lots of money to try and prove MMR caused autism, and if he succeeded, he would make tens of millions from his own vaccine. This is what we call a ‘conflict of interest’, something he hid from the Lancet, who said that, had they known, they would never have published the paper.

What’s worse, it was discovered that many of the results in the paper had been manipulated. Diagnoses were adjusted and dates were moved in order to strengthen its conclusions that autistic symptoms started directly after the children received the MMR jab. Furthermore, the parents of eight of the twelve children in the study were already seeking compensation for MMR damaging their children before the study took place. Indeed, they were represented by the same lawyers who paid Wakefield to prove MMR was unsafe. Thus the selection of subjects for the study was far from random. That’s before we mention that Wakefield formed a partnership with one of these parents to market autism tester kits on the back of an MMR scare to rake in a predicted $43 million a year. To say the conclusions of this paper were ‘unreliable’ is an understatement.

Long story short, the General Medical Council said Wakefield had acted dishonestly and irresponsibly, and that his study was improperly conducted. He was found guilty of serious professional misconduct on four counts of dishonesty and was struck off the medical register. The Lancet then fully retracted the paper. Case closed.

Except it wasn’t, and it isn’t. The damage was done. In people’s minds, MMR might cause autism, and so rates of vaccination fell. According to the Psychiatric Times, as a result of Wakefield’s paper the number of cases of measles in the UK rose from 56 in 1998 to 1348 in 2008, with two deaths. Similarly mumps, very rare before 1999, was up to 5000 cases in January of 2005 alone. The MMR scare therefore caused some very real consequences for thousands of families.

I don’t want to ram the evidence down your throat since it’s ridiculously easy to Google any number of studies rejecting the link between MMR and autism, so I’ll just mention two. A study in Denmark including all children born between January 1991 and December 1998, covering 440,655 children vaccinated with MMR and 96,648 unvaccinated found no difference in the rates of autism or autism spectrum disorders between them. Likewise, a 2012 meta-analysis by the Cochrane Library covered 14,700,000 children and found no causal link between MMR and autism. Which is much more conclusive than a study carried out on a sample of twelve.

Yet despite this evidence, anti-vaxxers still maintain a link between vaccination and autism. They claim that rates of autism are increasing and that their child’s or their friend’s child’s symptoms started around the time of the MMR jab. There must be a link, right?

It’s true that rates of autism are increasing, but not because of an increase in the actual incidence of autism – rather, better screening methods and increased public awareness of autism mean more people are being diagnosed with it. And autistic symptoms often kick in around twelve months – right at the time they have the MMR jabs. As I said before, it’s understandable that parents of autistic children might want to blame something for their child’s condition, however inaccurate that might be.

What I find wholly unacceptable, however, is for celebrities like Jenny McCarthy, Jim Carrey, Charlie Sheen , Billy Corgan, Robert De Niro and Donald Trump to repeatedly preach about the dangers of vaccination, ignoring any and all scientific evidence to promote scare stories and misinformation, which has led to epidemic levels of measles and mumps. Why people would choose to listen to a Playboy model, Ace Ventura: Pet Detective, a drug addict, a Smashing Pumpkin, a man who strapped a boob to his chest, and an orange-skinned capitalist who makes sexually suggestive comments about his own daughter, rather than doctors, scientists and the National Autistic Society, is beyond me. In regards to their views on vaccination, these people are more similar to Boko Haram and the Taliban than they realise.

Now, in order to provide balance, I have to point out that no medical intervention is 100% safe. Around 1 in 5000 children who have MMR will suffer febrile seizures, while 1 in 40,000 will develop immune thrombocytopenic purpura and 1 in a million will contract meningitis. However, if you compare this to rates of complications from measles, mumps and rubella – 1 in 1000 with measles will get meningitis and 1 in 5000 will die, while 1 in 40,000 with mumps loses their hearing and 1 in 10,000 will die – then MMR is much safer than the alternative.

I have no qualms or doubts about having my daughter vaccinated. If you’re undecided, that’s okay. All parents have the right to choose what is best for their child. Do some research, weigh up the benefits and the risks. But make sure you choose with your head, not your media-induced irrational fear of giving your child autism. Because MMR does not cause autism.

And don’t get me started on ‘Why can’t we have them as three separate vaccinations?’…