Tag: Asperger’s

Finding certainty in uncertain times

Gillan Drew2 Comments

Go onto social media. Pick up a newspaper. Ring a friend. Switch on the news. What are you guaranteed to encounter?

Speculation.

Often quite rampant speculation. In the internet age, we are all epidemiologists and experts in public health; we are all fortune tellers and soothsayers.

How long will these restrictions be in place? Two weeks, six months, eighteen months, forever. We’re flattening the curve; we’re protecting the vulnerable; we’re shielding the NHS; we’re acquiring herd immunity; we’re buying time to find a vaccine.

What further restrictions will be imposed? We won’t be allowed outside at all; the army will be on the streets; there’ll be rationing; we’ll have to eat cats and dogs.

Why has Italy been hit so badly? It has an elderly population; they were already in the middle of a flu epidemic; they have a high proportion of smokers; they’re a tactile culture; they didn’t obey lockdown; they live in multi-generational households; they closed the schools before the workplaces, exposing the vulnerable to the superspreaders.

How many will die in my country? 6000; 20,000; half-a-million; everyone. The death rate is much higher than we’re being told; much lower than we think; 10%; 0.4%. The statistics are different because of how they’re recorded; how many tests have been done; whether they died of coronavirus or with coronavirus. We’re two weeks behind Spain; three weeks behind Italy; ahead of the curve; better.

When will it end? When everyone has acquired herd immunity; when there’s a vaccine; when there’s a proven treatment; when it mutates to become more or less deadly; when we’re all dead from it.

And what will life look like afterwards? It’ll go straight back to normal; it’ll be entirely different; people will care more; people will hate more; we’ll be poorer; richer; safer; more vulnerable.

Speculation, speculation, speculation.

I understand why people are searching for answers – humans hate uncertainty. Uncertainty is dangerous. It’s terrifying. We don’t know how to protect ourselves from the unknown, so we feel vulnerable. People right now are living in a state of continual fear, and they’d rather live with an uncomfortable truth – a deadly but known danger – than endure the unknown.

Trouble is, in a situation like this, there are no answers. We don’t know how long it’s going to last; we don’t know how it’s going to end; we don’t know how many will die or what the world will look like afterwards. Ahead of us and around us is a vast, empty unknown. We’re walking on the edge of an abyss, liable to fall at any moment. How can you not feel anxious at such a time?

If it’s any help, as an autistic guy who spends his life living under the shadow of the unknown, you have to take comfort in the things that are known, and those things you can predict.

Like the fact that the sun will rise tomorrow. The sun has risen every day for the past 4.5 billion years; it will continue to rise long after we’re gone. The rhythm of the planets is eternal.

There will be two high tides tomorrow, and two low. The Earth and moon are locked in an endless ballet, and whatever happens with mankind, that will not change. It is immutable.

There will be life in one form or another for countless years to come. Every living thing on the planet has an unbroken chain of lineage extending back 3.5 billion years. Through billions of generations, every single one of your ancestors managed to reach sexual maturity, find a partner and reproduce before they died. Life today is the culmination of billions of survivors. There will be billions more generations to come.

We can’t say anything with such certainty when it comes to coronavirus. We don’t know when it’ll end or how, how bad it’ll be and who’ll survive to come out the other side. But we can say, with absolute certainty, that we will survive, and it won’t last forever.

How do I know this isn’t the end? Because modern humans have been around for 200,000 years. We’ve only had a germ theory of medicine for 150 of those years. We’ve only had antibiotics and antiviral drugs for 80. Yet we’ve survived Russian flu, Spanish flu, Asian flu, the Black Death, smallpox, leprosy, cholera, malaria, polio, meningitis, measles, HIV/AIDS, yellow fever, rabies, tuberculosis, typhoid, dysentery, diphtheria, and syphilis.

I was born in the 1970s. Most of the people reading this will, like me, have lived through the Troubles, the Cold War, the Iranian Embassy Siege, the Falklands, the Poll Tax Riots, shell suits, the fall of the Soviet Union, the Gulf War, Waco, Diana, Dunblane, Columbine, Y2K, 9/11, the War on Terror, 7/7, SARS, MERS, Swine Flu, Bird Flu, the Credit Crunch, 2012 hysteria, the Paris Terror Attacks, the knife-crime epidemic and Brexit. We’ve taken all that life has thrown at us, and we can take plenty more.

If you want certainty, there it is. We’re going to survive. We’re going to get through this. It’s the one thing I have no doubt about.

What do you say in response to THAT!?

Gillan DrewLeave a comment

What should you say when you’ve just sprayed blood into someone’s face?

As an autistic guy, I have a number of rehearsed responses to virtually every question and situation. I don’t think I’m alone in that – much of society have pre-programmed sets of words they drop into sentences to convey meaning without having to engage their brains and thus slow down the communication.

When we meet a casual acquaintance, for example, we don’t choose every word to create a sentence – we select a block of meaning, as from a drop-down menu, and send it to the mouth:

‘Hi, how’re you?’

The unthinking response is invariably, ‘Fine, thanks, how’re you?’

We do this all the time. It’s the reason idioms are so divorced from their literal meanings – catch you later, how’s tricks, I’ll take a rain check, a piece of cake, shitting bricks. Instead of thinking of each individual word, we select the meaning we want, and the particular register (formal, informal), and our brains arrange the chunks and make the sentences for us.

If we didn’t operate like this, it would take too long to say anything and too long to interpret what other people are saying. It’s as though society has consented to ignore the individual words and ascribe meaning to blocks of words – they’ve agreed that ‘once in a blue moon’ means ‘rarely’ and ‘over the moon’ means ‘pleased’, for example.

This can be a good thing for those of us on the spectrum, as it means we can fake empathy and not have to struggle to figure out what someone’s thinking or feeling. So long as we learn the rules – which can admittedly be difficult in itself – we can fit in.

For example, I’ve had to learn that when people ask, ‘How are you?’ it’s merely a means of facilitating conversation and not an earnest enquiry after your health, so you’re not meant to tell the truth (for a time, I answered with, ‘Entering the inner sanctum of the seventh circle of Hell, and you?’ just to see the reactions).

Where a context-specific response is required and I can’t tell whether a comment is serious or sarcastic (‘Lovely day, isn’t it?’) I normally reply with ‘Indeed’ or ‘Absolutely’ so that it fits both. Unless I’m tired and slip into Aspie mode, where I’ll take everything literally, overthink everything I say and consequently fail to communicate, I can normally mask my difficulties.

However, there are three situations I keep encountering that I’ve never figured out how to deal with.

There’s a lady at the school gate who keeps slipping into small talk that her eldest daughter died as a toddler. Every time she does it, it’s so matter-of-fact that it knocks me off track.

‘How was your Christmas?’

‘It was really good. We lost a child at Christmas, so we make the most of it every year. How was yours?’

‘Er, er, yeah, fine,’ but all I can think is, Should I be saying, ‘oh dear’, or ‘that’s terrible’, or ‘poor you’, or ‘what happened’?

Another difficulty is when old people look at you, groan wearily, and say, ‘Don’t get old.’ Since I live in a village full of elderly people, this happens more often than you’d think. How the hell are you meant to respond to that?

‘I won’t,’ or ‘I’m not planning to,’ sounds like you’re going to kill yourself. Saying, ‘It happens to us all,’ is a bit patronising because they’re old and in pain and I’m not, as is minimising their experience with, ‘It can’t be that bad’ or ‘It could be worse’. And giving some philosophical statement like, ‘Youth is wasted on the young,’ or ‘Any day there’s air in your lungs is a good day,’ is a little too in-depth when you’re standing in a queue at the local shop.

But the worst, the absolute worst, is when I spray people with blood.

I’ve mentioned before that I donate platelets. The way they do it is to put a blood-pressure cuff on your upper arm, inflate it, then stick a needle in your arm. Despite having normal blood pressure, for some reason I have a tendency to squirt. It’s like popping a balloon – the second the needle touches my arm, boom! Blood spattered all over their hands.

So I warn them every time. And every time they’re like, ‘Ah, I’m better than the other nurses, it won’t happen to me,’ and every time – pop – I get them.

There’s something incredibly intimate about blood, so it makes me feel embarrassed and kind of dirty when I spray it over some poor girl’s hand, or neck, or face. The girl yesterday got it all over her bare hand and up her arm, and was clearly horrified, and in those situations I have no idea what to say.

I muttered, ‘Sorry,’ but that seems on the one hand inadequate (I’ve just squirted my bodily fluids over her, after all) and on the other pointless (I can’t exactly control it, can I?). I once tried, ‘See? Told you so,’ but decided that’s rubbing salt in the wound. Likewise, ‘Gotcha!’ makes me seem like a sicko who enjoys the sight of his blood on someone’s cheek.

So I just sit there uncomfortably and squirm. Every time.

If anybody has some advice for how I can respond, I’m all ears!

I’ve been accused of ableism!

Gillan Drew1 Comment

I once spoke to the horror author Murial Gray, author of the criminally-overlooked masterpiece Furnace, about an unpublished writer accusing her of plagiarism. She was actually quite flattered, and said, ‘That’s how you know you’ve made it as an author.’

I carried that little nugget with me all my life, but I no longer agree with it. My new philosophy is this:

‘You know you’ve made it as an author when you’re accused of an -ism.’

Among the many five-star reviews of my book An Adult With An Autism Diagnosis: A Guide For The Newly Diagnosed (yes, I am blowing my own trumpet), there’s one that describes my view of the Autism Spectrum as ‘ableist’. Since ableism is discrimination and social prejudice against people with disabilities, and since I am a person with autism and thus disabled, I’m not entirely sure how I can discriminate against myself. If I were prejudiced, and held the belief that disabled people are inferior to non-disabled people, I can’t imagine why I’d have married an autistic person, or why I fight for the rights of people with autism – hell, even why I’d ever stick up for myself. At face value, this accusation is clearly utter nonsense from someone who uses neo-liberal shibboleths without engaging critical thought.

However, as someone who wrote the book to help people who, like me, were diagnosed with autism later in life, I’m conscientious about making sure it does the job it’s meant to, so rather than dismissing criticism out of hand, I try to see if there’s anything I can learn from it. As evidence of my ableist approach, I’m accused of depicting autism as a straight line from ‘not very autistic’ to ‘very autistic’. This may well be a fair point, but it’s certainly worth addressing.

There are many different models of representing the Autism Spectrum. I had considered creating a diagram of a very common one that maintains the Autism Spectrum is like a 100-piece jigsaw, with each piece an autistic trait. Everybody on the planet, so the theory goes, has several pieces; once you have around 60, you’re diagnosed with Asperger’s or High-Functioning Autism; once you have around 80, you’re diagnosed with Classic or Kanner’s Autism; nobody has all 100. Thus two Aspergic people with 60 pieces might only have twenty pieces in common; their autism, or how it manifests, might therefore be markedly different, and would certainly be different from someone with 90 pieces who has Classic Autism.

The reason I rejected the jigsaw puzzle model is that I disagree with it, because the difference between autistic and neurotypical people is one of kind, not amount. You can’t count up behavioural traits and then draw a line with ‘autistic’ on one side and ‘neurotypical’ on the other. That would certainly be ‘ableist’, and by implying that everyone is on the Autism Spectrum, it devalues the reality that we are different.

I chose to depict the Autism Spectrum as a line from high-functioning to low-functioning because that is how it is spoken about, both in professional circles and among the autism community – or, at the very least, the people with autism, their families and support workers that I hang out with. Since DSM-5 merged the different autism diagnoses into the single umbrella term ‘Autism Spectrum Disorder’ and defined it as Level 1 (requiring support), Level 2 (requiring substantial support) and Level 3 (requiring very substantial support), how else are we to create a diagram of the Autism Spectrum than a line of increasing severity/decreasing ability to cope without support? (And to be fair, my line runs horizontally, not vertically, to avoid the idea that Levels 2 and 3 are ‘beneath’ Level 1).

Ableism is also levelled at the idea of defining people by their difficulties, but I think there is an important nuance here between ‘describing’, which is neutral, and ‘defining’, which carries a value judgement. The comedienne Francesca Martinez has a joke about why people judge her by what she can’t do because of her cerebral palsy, instead of by what she can: ‘Nobody says of [Irish President] Bertie Aherne, “Yeah, great President, but have you seen his golf? It’s shit!”‘ We should not be defined by our disabilities, that is true, but in a book about autism and how to help autistic people find peace in a neurotypical world, what else should I mention but the ways in which we are different from neurotypical people and the difficulties that can result from our interactions with mainstream, everyday neurotypical society?

Having lived with autism all my life, and suffered when I didn’t understand it or how it affected me, I don’t think it’s helpful to be unrealistic. It is a neurotypical world out there, not an autistic one, so it’s not belittling people to say that those of us with autism start out with a disadvantage that we need particular tools, techniques and skills to overcome. Nobody expects a wheelchair user to climb stairs, or a blind person to navigate a sighted world without a stick (although some do), so why should it be any different for a person with autism?

Don’t get me wrong, there’s a whole bunch of people out there who think autistic people should be wrapped in cotton wool and sheltered from the world, and I agree that that’s bad, because if you stop people from experiencing the negative things that can happen in life, you also deny them from experiencing the good; but equally bad are those who insist that something like autism is no impediment to anything, and you can do anything you want in life. No, you can’t. There will always be limits to what a person can achieve, and pretending there aren’t is disingenuous. That’s not to say a person with autism isn’t valuable for who they are, or that they can’t be incredibly successful in their chosen field – look at Susan Boyle, Guy Martin, Sir Anthony Hopkins and Greta Thunberg, for example – but finding out what you can do in light of your limitations is not demeaning a disabled person, it’s simply channelling their potential in the direction that maximises their chances of reward and minimises the risk of failure. I think that’s pretty good advice for anyone, autistic or otherwise.

To accuse me of ableism is also to overlook pretty much everything I say in the book about how people with autism are different, not worse, than neurotypical people, and should not be judged by what they can and can’t do. In particular, I use a model I made up called the Mini and the Tractor. When those of us with autism are born, we’re given a Mini, while neurotypical people are given tractors. On the roads – those things we can do – we speed along quite happily, and are often able to overtake people in tractors. But either side of these roads are ploughed fields – the things we can’t do. While neurotypical people drive through them at the same speed, people with autism struggle, and bog down and get stuck, and often need a person with a tractor to come along and pull their Mini through the field and put them back on the road. We aren’t worse than neurotypical people – far from it – we simply have different wheels suited to a different surface.

How someone could have read that and inferred from it that I think people with autism are inferior to neurotypical people, or that people with ASD Level 3 are less valuable than people with ASD Level 1, is surely finding things to confirm your preconceptions – that I’m ‘ableist’. Indeed, the critic has read into my text a value judgement – better and worse – that I don’t think the material suggests.

So where has the accusation come from?

I don’t know the reviewer, of course. I’m sure they genuinely think my views are ableist, but I’m not sure they have the same interpretation of what it means as I do. What I suspect is that, like much of modern discourse, they’re coming at it from the viewpoint of intersectionality – that society is structured as a matrix of domination, with privileged groups oppressing others who need to fight back. At its most simplistic, this means dividing the world into powerful oppressors and powerless victims, and I think people are always on the lookout for examples where they can fight on the behalf of the oppressed by using words that end in ‘-ist’ and ‘phobe’ – like, say, when an author says something that appears to objectify disabled people. The disparity of our perceived power relations – me as an author, the privileged oppressor, imposing my view on the powerless reader, the oppressed – might be what triggered the accusation of ableism.

But here is my objection to that whole ideology: I am autistic. I am the very group I am oppressing. I am able to speak about autism because I am autistic, so it is my status as an (apparently) oppressed person that enabled me to become an author and thus have the power to oppress myself with ableism! Given that the average non-fiction book sells a mere 2,000 copies in its lifetime, netting its author around £1250 spread across a number of years, I think that might be overestimating my power in any case.

I guess, really, the ultimate test is to ask someone from the oppressed group how they feel, since apparently the best judge of whether oppression exists is the person feeling oppressed, rather than any external measurement or evidence, even if others in that group have a different opinion.

So, Gillan, as an autistic person and thus a member of an oppressed group, do you feel the idea of an Autism Spectrum that runs from ASD Level 1 (high-functioning) to ASD Level 3 (low-functioning) is ableist and discriminates against you as an autistic person?

No.

Well, that settles that then.

Still, if someone thinks the best way of defending the right of disabled people to define the terms of their disability is by criticising a disabled person for defining the terms of his disability, who am I to argue with such logic?

(Oh, and if you want to work out your intersectionality score, and thus your level of victimhood compared to others, just use this handy Intersectionality Calculator).

The definition of impossible

Gillan Drew4 Comments

Before you have kids, you think of the impossible in terms of massively unachievable goals that affect the very nature of our existence. World peace, faster-than-light travel, a day without anybody mentioning Brexit. You know, big things.

After you’ve had kids, your understanding of impossibility comes much closer to home.

Like, have you ever tried explaining to a four-year-old that the man who lives with Granny isn’t Grandpa but is actually Granny’s boyfriend? What about the difference between a boyfriend and a husband, or why some people get married and some people don’t? It makes faster-than-light travel seem a cinch by comparison.

What about trying to follow the labyrinthine stories they tell through all the twists and turns of pointless details and extraneous information? You might as well try learning ancient Greek without a primer for all the sense it makes.

Have you ever tried fishing poo out of the bathtub without smearing it all over the sides? Or explaining to a toddler that she really shouldn’t poop in the bath.

Why? Why?

Have you ever tried explaining to your kids that Justin Fletcher and Mr Tumble are the same person, or that the distinction between ‘not nearly there yet’ and ‘nearly there yet’ is longer than thirty seconds? I’ve given up trying to make them understand perspective – if they think the moon is chasing the car every time we drive, I’m just going to have to leave that delusion intact.

I’ve also decided not to bother asking what my eldest did at school anymore, because it’s a mystery I will never get to the bottom of. Other than learning that she once saw a pigeon in the playground, whatever happens inside those school gates stays inside those school gates.

And forget trying to get your kid to understand how to tell a joke.

Knock, knock.

Who’s there?

Izzie. Ha ha!

Izzie who?

Izzie. It’s me. Your daughter.

Oh

At least her chicken jokes are getting better, if only because their randomness makes them unintentionally amusing. Why did the cow cross the road? Because it was the dog’s day off at work, ha ha!

Of course, some people out there are going to argue that these things aren’t really impossible, and they’re hardly universal, applying only to me in my very limited family sphere. To those people, I will say that I’ve come to believe there are some impossible truths that cross all cultures and time periods and afflict every parent in human history: the word ‘no’ will never be the end of it; you cannot cut an onion small enough that your kids don’t pick every last bit out of their dinner; and even if you tie their shoes together and lock them in a safe, when you come to leave the house, one will always be missing.

I’ll leave you with this little nugget about the impossible in the life of a parent: it is easier to get an honest answer from a politician than to get your kids to change their bedtime story.

Pedantry and Autism: a love story

Gillan Drew1 Comment

Pedantry: noun. Excessive concern with minor details and rules; over-commitment to formalism, accuracy and precision; prioritising of simple knowledge (facts and rules and obscurantism) over more general knowledge and/or common sense. Used in a negative context.

Ladies and gentlemen, I am a pedant. I have always been a pedant and likely always will be. It stems from the black-and-white thinking style of my autism, my propensity for rote learning and my obsession with the little things, especially my ability to see the minutiae of the trees yet somehow spectacularly miss the forest. I speak ‘correctly’, even though I acknowledge there is no ‘correct’ way to speak; I try to ensure that I am one-hundred percent accurate in everything I say and write, while accepting that perfection is an impossible dream; and I follow the rules, no matter how stupid or seemingly arbitrary.

Despite its negative reputation, I don’t think being a pedant is necessarily a bad thing.

True, if you correct people on their grammar or point out the factual and logical fallacies of their arguments, it’s often seen as arrogant, condescending and belittling. To quote Ben Shapiro, however: facts don’t care about your feelings. Thanks to my autism, and unfortunately for those around me, I’m far more committed to the facts than I am to anybody’s feelings.

It is not my intention to hurt people’s feelings, though. Correcting them when they make a mistake is how I communicate and share my love of language and history with those around me. Much of the time, when I interrupt the flow of the conversation to tell somebody the true meaning and origin of a phrase they’ve misused, it is done with good intentions and because I think it’ll enrich their understanding and appreciation of the world around them. Partly, it’s to show off and try to impress people.

Only sometimes do I do it to be a dick.

But while I can say it comes from a place of genuine concern for the intellectual development of my fellows, another and probably equally important factor is that I can’t not do it. Inaccuracies cause me pain. My cringe-factor is turned up to eleven every time I hear something that’s patently wrong and the only way of alleviating that crushing horror is to put them straight. I can’t let them walk around being wrong. Entitled? Yes, you could probably call me that. But would you rather suffer a momentary embarrassment and then go through the rest of your life being right, or keep on exposing your ignorance to everyone who knows the truth?

It’s been said that the moment an Englishman speaks, another Englishman judges him, so it’s important to get it right. It’s not ‘I drunk it’ but ‘I drank it’, not ‘could of’ but ‘could have’, and there are no such words as supposably, irregardless, and expresso. I imply, you infer; a chicken lays an egg but people lie down; and if I affect something, I create an effect. Unique means ‘one of a kind’, so things cannot be quite unique or very unique, and if you say ‘reverse back’ or ‘past history’, you’re using one word too many. Little things, but they go a long way.

It’s hard to blame people, however, when everywhere they’re exposed to poor grammar. Songs called ‘Beneath Your Beautiful’; pop culture expressions like ‘You sunk my battleship’; movies entitled Honey, I Shrunk the Kids. No wonder so many people think that you are hanged, not hung, or that you can ‘literally’ die of embarrassment, yet still be able to tell the tale. And don’t get me started on there, their and they’re.

Misused idioms also hit my ear like nails down a chalkboard. It’s not ‘chomping’ at the bit, it’s ‘champing’, referring to an eager horse biting down on its metal mouthpiece; a damp ‘squib’ is a small explosive device, not a tentacled sea-creature; and ‘tenter hooks’ stretch hides over a wooden frame to make them anything but tender. Language evolves, sure, but there have to be standards, otherwise we’ll all end up speaking gibberish and nobody will be able to understand each other.

I can’t stand people promoting falsehoods either, like the guy who sat in front of me on a ferry into Portsmouth one time, who pointed to HMS Warrior and told his wife it was HMS Victory. That might seem minor, but come on – how can you mistake the legendary Victory of Trafalgar and Nelson fame, a wooden-hulled 1765 first rate triple decker ship-of-the-line that is an integral part of British history and national identity, with an iron-hulled 1860 armoured frigate? How could I not correct that error? It’s something every schoolboy should know.

But the most egregious recent example I’ve come across is in Jon Sopel’s bestseller If Only They Didn’t Speak English. As North America Editor for BBC World News, he should know a thing or two about a) facts and b) accuracy, yet when writing about race relations in the US, an incendiary topic that demands care and attention, he displays an unforgivable ignorance. He writes about ‘the literally millions of Africans rounded up and shipped off in the most appalling, fetid conditions to the East Coast of America’, and how ‘twelve and a half million people left the ports of Africa and came to America in leg irons’. All of this suggests that the slave trade was centred on the US and that it’s an exceptional case in world history, a view that supports certain political ideologies but is entirely inaccurate.

Don’t get me wrong, slavery was awful and I don’t wish to minimise the suffering of those affected, but sensationalism and emotion should never take the place of cold, hard facts. Luckily, these are readily available at the Trans-Atlantic Slave Trade Database, thanks largely to the work of professors David Eltis and David Richardson of Emory University. Of around 12.5 million slaves shipped across the Atlantic in the period 1519-1867, fewer than 350,000 – less than 5% of the total – went to what is now the United States. Around 40% went to the Portuguese colonies in Brazil, 11% to Jamaica and the rest around the Caribbean and South America.

It is therefore wholly inaccurate to claim that ‘literally millions’ of Africans were shipped to the East Coast of America’ or that ‘Twelve and a half million people…came to America in leg irons.’ More than that, it’s irresponsible as it feeds into the myth of American Exceptionalism and continues to inflame racial tensions. I would have expected a person of Sopel’s background to be more careful with his facts. I would also have expected this misinformation to be picked up on and corrected in the subsequent editions, but it has not, meaning thousands of readers around the world will read it and believe that ‘millions’ of Africans slaves were shipped to the US, and use this ‘fact’ to inform their erroneous view of the world. And that annoys the hell out of me.

(To provide further context, the peak figure of American slavery was 3.9 million, recorded in the 1860 census. Furthermore, in the same period that less than 350,000 African slaves were shipped to America (388,000 according to some sources), more than a million Europeans were held as slaves in Africa.)

Pedantry might be seen as bad, petty, unkind and inflexible, but sometimes, as in the Jon Sopel slavery case, it is by far the better approach than playing fast and loose with the facts. As an autistic individual, pedantry is in my nature, as it is in many others who share my condition. We thrive in academia, in the sciences, in linguistics, where accuracy and obsession over the minutiae are seen as strengths instead of poor social skills. And who knows? One day, the difference between the survival of the species and our unfortunate extinction might come down to somebody spotting a single misplaced integer.

The Non-Specific Anxiety of an Aspie

Gillan Drew2 Comments

Anxiety is a normal, healthy human emotion. It comes in for a lot of stick these days, but everyone suffers from it at one time or another and it has evolved for a number of very good reasons.

First and foremost, anxiety keeps you safe. It alerts you to potential dangers, makes you better at threat perception, and discourages you from taking unnecessary risks. It encourages you to think of alternatives, prepare backup plans and expect the unexpected. Indeed, those who experience anxiety tend to be better prepared, and cope better when things go wrong, than those who don’t.

Anxiety can also push you to be better. If you’re anxious about an exam, you study really hard so that you ace it. If you’re anxious about giving a speech, you practice so much you deliver it like a seasoned pro.

Even social anxiety has its benefits. Worrying what people think of you, how to make a good impression, and not hurting their feelings actually makes you a nicer, kinder, more empathetic person who cares about and tolerates the thoughts and opinions of others. Consequently, you tend to be better liked than those who don’t worry how they’re seen.

All of which shows that anxiety is not something negative. Excessive anxiety, on the other hand – that’s a different kettle of fish altogether.

Autism and anxiety go together like syrup and waffles. I’m not going to talk about the anxieties Aspies suffer from altered routines, sudden change, sensory issues, societal expectations or social situations as these are well-known and extensively covered elsewhere. Instead, I’m going to address something surprisingly common but rarely discussed: the general, non-specific, all-pervading anxiety that all is not well with the world.

It’s a feeling that comes and goes, sometimes with identifiable triggers and sometimes not. Probably the most common time I’ve heard it affecting people on the spectrum, myself included, is after moving house. While it’s popularly said that depression comes from dwelling on the past and anxiety from dwelling on the future, this does not hold true for the anxiety I’m talking about, for it exists in the present moment and no amount of rationalising or reasoning can remove it.

I’ll give you an example. About ten years ago I moved into a block of flats. My flat was on the third floor and contained all my belongings. I had a sea view, an allocated parking space, an entry phone system and a concierge. I had my support workers coming in regularly, and kept up the same routine as I had in the previous place. I had everything I needed to feel safe and happy. So why did I spend two weeks curled in a ball on the floor whenever I had a spare moment?

I was terrified, but I couldn’t work out why. The door was locked and nobody could get in. I was on the third floor, so totally safe. I had working smoke detectors and my car was right beneath my window. I had my own curtains and bedsheets, my model, my Jeffery Deaver books and my Starsky and Hutch DVD boxset. I had my guitars, my phone, the internet. I had food, an oven, a washing machine. There was no reason I should feel anxious.

But I did. I was anxious all the time, only without an obvious cause. Despite knowing I was safe, having all the things that I needed to feel comfortable, and having support workers  come in, I had an ever-present feeling that everything was wrong. It’s not something you can think away. There’s nothing you can do to get rid of it. And nor can you distract yourself – this type of non-specific anxiety pervades your very being. It’s there when you wake up and when you go to sleep. It’s there even when you refuse to think.

I’ve known others who, after moving house, take months to finally settle and feel comfortable. Why do we feel this way? Who knows. It happens to me every time I move, even though I’ve lived in sixteen places. The same books in the same order on the same bookcase in a different house fills me with anxiety, and there is nothing to alleviate the dread.

I felt the same non-specific anxiety all day yesterday and most of today. So did my wife, who’s also on the spectrum. We’re going on holiday tomorrow and so we’re both anxious about that – the change of routine, fear of the unknown, and so forth – but this was not that. This was, again, the sense, the dread, that something was very wrong with the world, but we couldn’t really say what.

I think it was because we packed on Saturday, leaving Sunday and Monday to relax. Trouble was, neither of us could. Can’t start a new book because I’ve got one for holiday. Can’t write my novel because I’ve got to a convenient break. Can’t pack my hand luggage until the last minute. Everything felt wrong. Doing the same things – getting the kids up, getting them dressed, taking them to ballet – it all felt wrong. We couldn’t get comfortable, couldn’t relax, so anxious we couldn’t even distract ourselves from it.

I’ve spent two days pacing from room to room. Picking up the guitar, strumming for thirty seconds, putting it down. Flapping my hands. Trying to watch TV. Tidying the kitchen, the lounge, the playroom. It all feels wrong.

Let me be clear – I’m not particularly anxious about going on holiday tomorrow. My anxiety was all about the here and now. And how do you get rid of that? I’ve already dealt with my anxiety about the holiday by planning in detail, making backup plans, writing lists, checking and double-checking and triple-checking everything. The anxiety I’ve felt hanging around the house the last two days, walking the dog, going to town – it comes from somewhere else, somewhere I can’t clearly identify. It’s a horrible feeling that makes me want to cry, and sometimes I feel my chest constricting and my heart pounding away, and because it comes from nowhere, because there are no thoughts to challenge or problems to prepare for, there’s nothing you can do but endure it.

That’s what I mean by non-specific anxiety. As I said, sometimes it has an identifiable trigger – moving house, the days before holiday – but sometimes it’s just there, anxiety that serves no purpose and drives you out of your mind. So you learn to live with it and hope that, soon enough, you can stop feeling so afraid.

Suffering fools: an Aspie perspective

Gillan Drew6 Comments

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

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

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

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

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

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

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

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

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

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

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

‘Elle who?’ she asked.

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

‘No.’

‘Moving on.’

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

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

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

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

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

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

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

‘When did it happen?’

‘Since the late 60s.’

‘Before my time.’

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

‘No, I don’t remember that.’

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

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

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

‘Fly paper.’

‘What’s fly paper?’

‘You don’t know what fly paper is?’

‘No.’

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

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

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

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

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

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

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

But how did her baby get into her tummy?

Gillan DrewLeave a comment

Ah. We have reached a developmental threshold. I thought we’d hit it before Christmas when my daughter said, ‘You know I was in mummy’s tummy? Well how did I get out?’ but that was only the mechanics of birth (and she didn’t believe me that mummy pushed her out her noo-noo). No, this question – the creation of life and the sexual dimension it implies – is altogether trickier, deeper, and represents a significant step outside of ‘that’s the way things are’ to ‘why are things that way?’ Yikes.

I must admit, I fudged the answer. I was alone with her in the car at the time, and I figured something like this ought to be discussed with her mother first so we can decide the best time, best way, and all that. To be honest, I thought I wouldn’t have to deal with the concept of procreation for a few more years at least, so I wasn’t ready, and a garbled response about eggs and seeds probably isn’t the best way to introduce a three-year-old to the mysteries of the adult world.

My mind racing, I considered implying that birds and bees had something to do with it; storks, cabbage patches, magic; even the age-old ‘when a mummy and daddy love each other very much…’; but given that bees are dying, storks are terrifying, and one of her friends has two mummies, it’s no longer that simple.

I turned it on its head and asked her how she thought they got in there.

‘I think mummy swallows them,’ she said, and we left it at that.

Phew! Dodged a bullet.

I was taught about sex at the age of four or five – penises, vaginas, sperm and eggs. While I’m not sure about the appropriate lower age, there is definitely an age where you should already be clued in – I remember everybody making fun of a ten-year-old at my school because he thought he came out of his mother’s butt. Sucked to be that guy – pooped into the world.

There’s a danger to leaving it too late, too. When I was on a bus travelling through Alabama twenty years ago, I remember seeing a massive billboard that said: ‘Talk to your children about SEX, or SOMEONE ELSE WILL!’ You definitely don’t want them learning from porn and thinking, like today’s eleven-year-olds, that that’s how people actually do it. And, of course, the consequences of a lack of sex education have been devastatingly explored in fiction, from Stephen King’s Carrie to Ian McEwan’s On Chesil Beach. Message received and understood.

But there’s a way to do it, and I know that showing embarrassment or squeamishness can send out the wrong message and lead to problems later down the line. I met a girl at university who said, ‘I’m bisexual, but I’m terrified of penises, so I’ve only ever been with girls and I don’t think I’ll ever have sex with a man, so behaviourally I’m a lesbian.’ (My response to this statement was, ‘Nice to meet you, I’m Gillan, what’s your name?’). I don’t want that kind of confusion for my girls.

And I certainly don’t want them to think sex or masturbation or specific body parts are ‘dirty’ or ‘naughty’ or ‘shameful’ either. I want them to be body confident, with a healthy sexuality free from the hang-ups that I, an awkward, sexually-inexperienced autistic bloke might pass on to them.

So I started researching this topic online (very carefully – I don’t want to be on a watch list!), and I discovered I’m a lot more old-fashioned and out-of-touch than I realised.

Today’s Parent, for example, suggests teaching a child of 0 to 2 the words penis, vagina, vulva, clitoris, bum and nipple, meaning I missed that window. It also suggest explaining to them when and where it’s appropriate to explore their bodies – gently and in the privacy of their bedrooms, apparently – which I must confess I thought was a conversation for much, much, much later on.

For the 2 to 5 age range – where we’re at now – it suggests opening up about consent, explaining it’s not appropriate for others to ask to see or touch their genitals, and not to keep secrets about this, which is definitely good advice but, God, how do you have that conversation without implying the world’s full of sexual predators? Also, now’s the time to mention sperm and egg, perhaps leaving the gory details for when they’re older.

All of this seems alien to me. Far too young, I keep thinking, let them be children a little longer before you strip them of their innocence. But other sites, like Family Education, all seem to agree on this basic framework – the proper names for genitals and where and when it’s appropriate to touch yourself somewhere between 0 and 3, the egg and sperm speech and stranger danger around 3 to 5, and the more explicit details about 6 to 8.

I’ve been living under the erroneous belief that I could sit them down in about five years, have a one-off Q&A session, then avoid the issue until their first date when they’re sixteen, with a couple of ‘women’s issues’ interventions along the way. Instead, you need to mention sex throughout their upbringing, stressing issues of consent and context, in order to create a sexually healthy adult.

I guess I agreed to all this when I became a father, and next time she asks I’ll be better prepared. Sometimes, I think it would be better if a stork delivered us fully-formed to our parents. You certainly wouldn’t have to worry about stretch marks and post-partum incontinence!

The Greatest Spoonman

Gillan Drew1 Comment

I am 39 years old, give or take six months. That means I’ve been alive around 14,235 days not accounting for leap years. I’m good at some things, less so at others, but one thing I can say without any exaggeration or false modesty: I’m damned good at using a spoon.

Some people look at me and think I was just born with certain genetic advantages, but I wasn’t. My skill with a spoon does not come naturally but has been honed over a lifetime of practice and hard work. If we scratch out the first two years of my life (which are a little vague in my memory), let’s suppose for the next four years, I used a spoon an average of four times a day, or a total of 5,840 times. If you use anything that many times, you become an expert. You have to put in the effort to get the results.

Unfortunately, my dedication to spoons slackened off after that as life got in the way. After starting school, up until eleven, I probably used a spoon twice a day – once for my cereal in the morning and once for pudding at teatime. Although I wasn’t really focusing on my spoon-wielding skills, I still managed to get another 4,380 uses in my logbook. Quite good for the average person, but not enough if you want your spooning to take you to the Olympics.

Then at twelve I started to take things more seriously. Like a quintessential Englishman, I started drinking tea to help focus my performances. For five years, seven spoons a day, that’s another 12,775 times.

At seventeen, shortly after taking silver at the National Spooning Championships, I realised I would have to add coffee to my daily regimen if I ever wanted gold. Eight to ten cups a day, plus cereal for breakfast and yoghurt for pudding, say, twelve spoons a day for 23 years, and you’re looking at 100,740.

Total times I’ve used a spoon in my life (give or take a couple of thousand): 123,735.

That is how I became what I am today. All my plaudits and successes in spoon usage have come from 39 years of single-minded pursuit of excellence. I am, without a doubt and by any objective measure, a giant of spoon-wielding brilliance.

But apparently, I’m using my spoon wrong. I’ve been using it wrong all my life. Luckily, my three-year-old was able to put me right over breakfast this morning. How lucky I am to have such an expert in my home who is able to correct years of bad technique.

Her lectures on how to properly use toilet paper, the best way of making coffee, and how I should shave my face have also been greatly appreciated and improved my life no end.

This will take me to the next level, so look out world! If I was unstoppable before, with the help of my three-year-old’s wisdom and expertise, I will soon conquer this puny planet. All hail your new emperor.

Fingers in the Sparkle Jar review

Gillan Drew1 Comment

About eighteen months ago I was asked to review Chris Packham’s nature memoir, Fingers in the Sparkle Jar, by an autism charity with links to the man himself. Presumably they thought that, as an autistic writer who lives in the New Forest like Packham, I would give it a glowing review. But I didn’t. So they didn’t publish it.

In honour of World Book Day, here it is:

Chris Packham is a man who divides people. I have met those who adore him and his animal activism, and others who cannot abide him. It should come as no surprise, therefore, that Fingers in the Sparkle Jar, his idiosyncratic memoir of his childhood, is just as divisive.

The title is, without a doubt, the best possible description for his work. A jumbled collection of vividly-drawn vignettes and intimately-rendered impressions, some magical, some shocking, all peculiarly individual, it will surely disappoint those looking for a straightforward autobiography. To read this book is to delve into a mixture of memories and imaginings, poetry and pain, as though shaking up a jar of recollections and drifting through the resulting chaos. This is the book’s main strength, and one of its key weaknesses.

While there is an overall progression – it’s the story of a boy taking a kestrel chick from a nest and raising it, in the process learning about life and death – to try to impose a linear narrative to the text seems to be to miss the point. Indeed, it has an obsessive focus on the details rather than the ‘bigger picture’, clearly representing how Packham interprets the world and mirroring the workings of the autistic mind. As a reader, however, and an autistic one at that, I found this wandering style more alienating than inviting, especially the multiple shifts from first- to third-person, and craved something – anything – that might give me a sense of direction.

It is also a particularly difficult read, both in terms of form and content. From the first page, you are struck by Packham’s individualistic writing style – long sentences packed with adjectives and multiple clauses that create a wonderful sense of a place or a feeling but make literal understanding almost impossible. Some of his sentences I had to read a dozen times to even come close to getting the gist of what he was trying to say, and this added to my frustration with the book. Furthermore, the brutal, unsentimental honesty of his writing is at times deeply uncomfortable; the depictions of bullying and animal cruelty, for example, some of it by Packham himself – a passage where he describes his fondness for eating live tadpoles stands out – are markedly unpleasant and not for the squeamish.

All of which makes Fingers in the Sparkle Jar an incredibly difficult book to review. On the one hand, it is revealing and brave, beautifully illustrating the isolation, confusion, and bullying often experienced by those of us on the Spectrum while we were growing up; and on the other, I found it both a challenge and a chore to read. Having discussed it with others, some really liked the lyricism and free form of the structure, while others, like me, struggled to cope with the poeticism and formlessness of Packham’s style. I can understand why, as a dark, individualistic depiction of a childhood living with autism and nature, it has earned bestseller status, but if you’re expecting a straightforward autobiography about how a naturalist became a TV presenter and was subsequently diagnosed with Asperger’s Syndrome, this is definitely not the book for you.

Fingers In The Sparkle Jar at Amazon