Suffering fools: an Aspie perspective

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 everythingThat’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.

Fingers in the Sparkle Jar review

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

Bullying: An Undiagnosed Aspie at School

My little (neurotypical) daughter is now three, and by January we have to select her schools. I had thought that this would be easy – have a look at them, decide which is best, and apply – but what I hadn’t counted on was how much my own experiences of school would colour my thinking, or how this process would stir up all the unpleasant emotional and psychological shit that has lain buried inside me for twenty years.

There are two schools in particular that we’re looking at, one small and with more of a personal focus, the other big and more academic. Both of them fill me with dread.

At the big, academic school there’ll be plenty of kids for my daughter to make friends with, but the environment is less supportive. In the small school, she’ll be better looked after, but if the other kids turn on her and she’s the one who’s the outsider then there’ll be nowhere to hide.

In all honesty, I don’t care about the academic standing of either – I care about my daughter’s happiness and emotional wellbeing, and the damage that can be caused by making the wrong decision.

As you’ve probably inferred by now, I hated school. I found the other children silly and immature. I couldn’t relate to them or their games. I preferred hanging around with the teachers and the dinner ladies. Sometimes I took teddy bears to school and played with them instead because they were easier to understand. That’s when I wasn’t collecting insects or classifying all the trees, or crying all the time at the slightest provocation.

When I was seven we moved house and I changed schools. I decided that I didn’t want to be known as a crybaby, so every time I got upset I forced the feelings inwards. I hated sitting with the other kids in lessons, preferring a seat by myself while all the rest were chatting and playing. At breaktimes I’d join in with the games, but mostly I’d keep up a stream of narration, pretending I was a commentator observing the people around me. Always separate, even when I was part of the whole.

I always preferred my own company. If it was a wet break I  could stay in and draw a picture or read a book – infinitely better than mixing with others. People made fun of me for my interests and good behaviour and excellence at schoolwork, laughed at my complete lack of sporting prowess. I had spiky hair, goofy tooth, and massive plastic glasses. Whenever somebody called me names or wouldn’t let me play with them or tried to force me into being naughty, I inwardly wept.

Being told off by the teachers – normally for things that other people had done and blamed on me – was an indignity I dwelt on for days. That was when I wasn’t correcting their spelling, pointing out mistakes in the maths textbooks, or telling them every intimate detail of my life.

Every morning I’d tell my mum I had a funny feeling in my tummy, and every morning she’d say, ‘Just go and see how you feel. If it gets worse they can always ring me to come and pick you up.’ But of course, they never did.

I always knew that I was different. I was constantly moody, constantly confused and just wanted to be left alone. But none of that really bothered me until I was ten, when I started to want friends but realised I was unable to have them.

My brother always seemed to have it easier. He just drifted through school without any struggles. He could make friends with anybody, and normally did. He was always out on his bike, off to the cinema, heading to parties. Sometimes my parents made him take me along, something he hated only slightly more than I did – I had my pride.

I often asked when I would have friends like my brother did. ‘When you get to secondary school,’ my mum used to say. ‘You’ll make plenty of friends there.’

My father was less optimistic. He constantly stressed how I needed to learn how to get on with people or else I wouldn’t cope with life. I think they were terrified that I was different and desperate for me to be normal. They started sending me to Christian boys’ camps in the summer, hoping I would build my character and somehow learn to socialise. They were abject lessons in just how incapable I was of functioning in a group of my peers. I came home from them bruised and scarred and even more aware of my utter ineptitude.

It was when I started secondary school at age 12, an institution of 1500 kids that taught you your only value was in your grades, that everything went to hell. Lessons were bad but survivable – people would steal my pencil case, snap my rulers, stab me with compass needles and squirt ink on my shirt, but there was never a shortage of people wanting to sit by me so they could copy. It was the breaktimes that broke me down.

I hung around with people I’d been to middle school with – people who hadn’t actually liked me for the past few years and now, to impress their new friends, showed off their disdain at every opportunity. I was the guy to push, the guy to throw things at, the guy to trip up in the mud; I was the guy to call names, to run away and hide from, to spread rumours about and laugh at. I wasn’t handsome or cool or popular – I was what they called a ‘gorm’, short for ‘gormless’ – a nerdy, geeky swot, teacher’s pet, loser. Sometimes they’d take turns spitting on me – thick, snotty loogies on my bag, on my back, even in my face.

If ever I stood up for myself, which was rare, I’d make threats I had no possibility of following through with. They’d simply threaten to beat the crap out of me, so I did nothing, and let my pride, my dignity and my self-esteem sink into the earth beneath my feet, where I wished I could curl up and die. Looking back, I’d have preferred them to beat me – those wounds heal. The wounds they gave me can last a lifetime.

Those twenty minutes a day killed me.

Luckily, we lived opposite the back gate of the school so I was able to go home for lunch. That was my lifeline. Without it, I don’t know how I’d have survived. I sat by myself, ate some lunch, recharged my batteries to face the afternoon. And, most importantly, I didn’t have to mix with anybody else.

I put up with this crap for a year. One whole year. Until, one week before the school year ended, I started hanging around with a boy that I will call Judas.

I don’t know how it came about that we hung out together. We sat next to one another in most of our classes, and I thought he was pretty darned awesome. He was intelligent, like me, but he was also sporty, which made him well-liked. For whatever reason, we hung out together at morning break, and then the next day. The following day, I even stayed at school for lunch, and the next, before we broke up for the summer holidays. For four days I had a friend.

My God, I was happy. If this was what it meant to have a friend, then I now knew everything I’d been missing out on, and everything that everyone else seemed to have. In the rain-drenched misery among the bullies at boys’ camp, I looked forward to the new term, not with horror and apprehension, but with a sense of anticipation, because now I had a friend!

The first day back at school, Monday morning, second period – art. I sat next to Judas like the cat that got the cream. I was so excited to catch up, so excited for the future. It felt so good to be normal.

When the bell went for morning break, I almost burst with excitement. He turned to me and said, ‘See you after break,’ and walked out of the room.

I thought it was a joke. I followed him at a distance, and when he stepped outside I jumped out at him.

‘Ha ha, surprised you!’

He glared at me. ‘I said I’d see you after break.’

‘Yeah, funny,’ I said, still thinking it was some kind of joke I just didn’t understand.

He stopped walking. ‘No, I’m serious, Gillan,’ he said. ‘Just piss off. I’ve got some new friends now.’

And he walked on.

I followed him again, unsure just what was happening. He walked up to a group of lads – football lads. He’d made new friends over the holidays and they didn’t include me.

I don’t think I have ever felt so alone.

Near where they stood were my old ‘friends’. I wouldn’t go back to them, no way. I was desperate, but not that desperate.

I saw a kid I’d known at middle school – Lucifer, we’ll call him – with a group of kids I didn’t know, and decided I’d try to hang with him, just for today, just so I wouldn’t have to be alone. In truth, he was a bully and had been the scourge of the middle school, but he’d always gone easy on me, possibly because there was no fun in beating on the developmentally disabled kid, albeit undiagnosed, and possibly because the one time he’d tried to put me in a headlock, I’d panicked and in a flurry of punches knocked him on his ass.

Anyway, Lucifer and his friends were all eating slices of pizza from the cafeteria. I was caught in the midst of despair, and not having a clue about how to approach people, I simply walked straight up to him and said, ‘Lucifer, can I have some of your pizza?’

He reacted as though I’d asked to sleep with his sister. I’ve never seen a face show such disdain. With an evil, mocking sneer, he hissed, ‘You fucking skank,’ and with a wall of expletives he ripped a chunk off his pizza and threw it in my face. His friends laughed, and some smiling, some sneering, ripped pieces off their pizzas and threw them at me too, shouting and swearing and laughing.

Everybody turned to look – my old friends, Judas and his new friends – everyone.

I did what I’d sworn not to – I cried. But I hid it well. Holding my head up high, I turned and strolled away from the mockery, bits of tomato sauce on my cheeks, pretending I wasn’t humiliated and utterly heartbroken. I headed for the nearest toilets and cried my eyes out. (Years after this, whenever this group saw me they’d throw things at me and call me a skank. Once when I was 17 they came upon me in the street, shoulder-barged me into the road and threw cigarette lighters at me).

After break, I went back to art and Judas sat down next to me as though nothing had happened. ‘Why can’t I hang around with you at break?’ I asked.

‘You wouldn’t fit in,’ he said. ‘They wouldn’t like you.’

And that was that.

The rest of the week, I hid in the toilets, hid in the bushes – I didn’t want people to see that I was entirely on my own. One day I even tried to join the group regardless of Judas’s warnings. They couldn’t physically push me out, could they? It turned out that they could. After being frogmarched across the playground, I decided not to repeat that indignity.

It was with a heavy heart, leaden legs, that the following week I walked up to my old ‘friends’ at breaktime. ‘Oh, you’re back,’ they said. And things resumed as though I’d never been away. Because being bullied was better than hiding in the toilets.

About ten months later, the school decided to build a new block and new playground. Because of all the builders on site, it was thought prudent, for health and safety reasons, to shrink lunchtime from one hour to just 25-minutes. As a result, they revoked all the lunch passes. My 20-minutes of hell each day was going to be 45.

Unable to cope with being bullied 3 hours and 45 minutes each week, I spied on the other friendship groups, found one I thought I might be able to join – a mixed group, some of whom were in my classes – and after a week trying to build up the courage, I approached one of the members and asked if I could hang out with him and his friends at breaktime.

‘Sure, whatever, I don’t care,’ he said, and I was in.

Things didn’t go exactly to plan. I was so desperate to fit in, so terrified of being rejected, that I lost the ability to speak. It was weeks before I managed to say a single word. I stood at a slight remove from them, waiting my chance. Every time I opened my mouth to speak, this little voice in my head screamed, ‘DON’T SAY THAT THEY’LL THINK YOU’RE WEIRD!’ and I clamped my lips together. Sometimes I managed to think up something decent, but by the time I worked up the courage to voice it, the conversation had moved on and it was already too late. So I stood, in silence, like the number one buzzkill, so afraid they wouldn’t like me that I guaranteed they wouldn’t – the dictionary definition of a self-fulfilling prophecy.

Within the first week I realised it wasn’t going to work. While not as bad as my old ‘friends’, my new ‘friends’ didn’t exactly make me feel welcome. One told me to my face, repeatedly, that she hated me because I was so weird and she wanted me to go away. One used to stuff her rubbish in my shirt pocket as though I was a dustbin. They loved telling me I wasn’t actually part of ‘their group’. I was the butt of every joke. I smiled, as though I was in on it, when in fact I knew they were mercilessly mocking me.

I knew from the start that it wasn’t going to work. I hung around with them for a year and a half. Breaktime and lunch. Forty-five minutes a day. Because I had no one else.

You don’t have to be a psychiatrist to know what that kind of thing does to a person. My self-esteem, self-identity, my confidence – my very value as a human being – they all went away. It got to the point where I was too afraid to put up my hand in class, even though I knew the answer, because people would look at me and I couldn’t bear their judgement. Looking back, I’m surprised I didn’t become a statistic, if you catch my meaning.

And throughout this time, Judas still sat next to me in every class we had together, and listened sympathetically as I told him of my loneliness, and made all the right sounds and facial expressions when I told him I was being bullied, and watched as I shrank into a shell of my former self, and he did nothing. Except, that is, on the days when I couldn’t face them and so wandered about alone – he’d always be sure to tell me he’d seen me wandering around on my own, and that if he’d noticed I was being a loner then other people would too, and perhaps I’d better go back and hang out with the bullies again. Because, evidently, it’s better to be bullied than have no ‘friends’.

I asked him repeatedly if I could hang out with him at breaktime. I begged – I told him I wouldn’t even have to say anything, I’d just stand there so I didn’t have to be alone. His answer was always the same. ‘You wouldn’t fit in.’ For a year and a half.

What hurt the most was that he was my best friend in the classroom. He was my lab partner, my vocab buddy. Every project we’d do together, every history assignment, every book report. Art, music, craft, IT. But other than those four days in our first year, outside of the classroom he wanted nothing to do with me.

I loved that guy for three-and-a-half years, right up to the moment I realised that I hated him far more than any of the bullies, and stopped sitting next to him in class. He never spoke to me again, even though we went to the same VI Form. I was amazed by how quickly and easily I was replaced, though it should have come as no surprise. I clearly meant nothing to him.

About the same time, I decided I couldn’t go on anymore as I  had. I spent the last six months of my time at that school hanging out with the band geeks who congregated on the benches at breaktime with their inhalers and head braces and vocal jazz stylings. I didn’t particularly like them, but it was all about survival by this point, and they weren’t really in a position to bully anyone. Luckily, by this time, the block was built and I could go home for lunch again, because all of them had orchestra, and music lessons and choir practice at lunch.

And so I survived, in body if not in mind. I left school, and I buried these experiences and haven’t spoken to anybody about them for twenty years now. I wonder if all the tattoos and piercings I got in my late teens, and all the challenges I undertook in my early twenties – rock climbing, bungee jumping, parachute jumping, scuba diving, tall ship sailing, backpacking – were a way of trying to work through all that anguish and self-hatred. To punish myself and see if I really mattered.

I thought I’d got over. Thought it was left in the past. Until I’ve had to start looking at schools for my little girl. And I realise I’m not over it at all.

I can think of my best friend telling a thirteen-year-old me to piss off because he’s found new friends, and it still hurts. I can think of reaching out to another for help in my lowest moment, only to have him literally throw it back in my face, and I still cringe at the way he looked at me. And worse, I can think of repeatedly begging a friend to save me from my bullies only to have him refuse because I ‘wouldn’t fit in’, but instead of the despair I felt at the time, now I feel only anger.

I never dealt with any of these feelings. I live my life looking forward, not back. What’s in the past no longer has the power to hurt you – or so I thought.

So perhaps you’ll understand why I don’t care about the league tables my mother-in-law sends me, and why I don’t care about the Ofsted reports, and why I don’t care if every one of the school’s pupils fails their SATs. The only thing I care about is if my daughter will be happy at school. Because if she’s not, all the league tables and Ofsted reports in the world couldn’t make me send her there.

Aspie Daddy

Welcome to Aspie Daddy, the website of Gillan Drew, author of An Adult With An Autism Diagnosis: A Guide for the Newly Diagnosed. Here I blog about autism and parenting and whatever else takes my fancy.

I was diagnosed with Asperger’s Syndrome at 28, and now nearing forty, I live with my autistic wife and two infant daughters on the border of Dorset and Hampshire.

If you get the chance, check out my fiction website The Struggling Writer where you can read some short stories and novel extracts and some of my rants about writing.

Thanks for dropping by.

Gillan

An open letter to the Mental Health Community

Dear doctors, psychiatrists, psychologists and other Mental Health professionals,

As somebody who accessed Mental Health services for much of his teens and twenties – and, depending on the person that I saw, was variously diagnosed with clinical depression, major depression, cyclothymia, dysthymia, bipolar disorder and emotionally unstable (borderline) personality disorder, and prescribed all manner of antidepressants and mood stabilsers – may I begin by saying that I have nothing but respect for your profession. It is a very problematic and stressful area of medicine in which to specialise, and much of your work is more an art than a science. I am therefore fully cognizant of the pressures under which you work, and the difficulties that you face on a daily basis.

It is therefore with the best of intentions and sincere regret that I feel I must bring to your attention an area in which you could be regarded as failing in your duty of care. This is in the provision of services to adults with autism, particularly high-functioning members of the community, to whom your behaviour often amounts to nothing less than a flying kick to the balls – with both feet. Allow me to elucidate.

When I was working through my various (mis)diagnoses and battling the side-effects of my numerous sedating, mind-numbing and libido-crushing medications, I very helpfully had monthly reviews from a psychiatrist and weekly sessions from a counselling psychologist, such were my mental health difficulties. Indeed, they provided a measure of stability in an otherwise chaotic and trouble-filled life.

It was a little disheartening, then, when upon being diagnosed with Asperger’s Syndrome at the age of 28, I was immediately discharged by the Community Mental Health Team because ‘autism isn’t a mental illness’, and handed over to the Learning Disabilities Team, who said that ‘we have no services for high-functioning individuals’ and immediately discharged me also. This was ten years ago, and in all that time I have had no further input from the Mental Health Team or Learning Disabilities Team.

This makes me wonder, therefore, if you think that my clinical depression, major depression, cyclothymia, dysthymia, bipolar disorder, and emotionally unstable (borderline) personality disorder were merely symptoms of autism, rather than separate but co-existing mental health conditions, or if you thought that all of my problems with mood, identity, anxiety and depression would simply vanish alongside the diagnosis of autism? Surely, you did, else it would have been unethical to discharge somebody who had been receiving mental health treatment for over a decade without ensuring they were fully ‘cured’ and no longer needed mental health input.

To make it absolutely clear, I am wondering whether you think that having autism precludes the possibility of a person having mental health difficulties too? Because that seems, to a layman, a little like washing your hands of people who need help simply because you can pass the buck and attribute all their problems to autism.

Allow me a further, more recent example. My wife also has a diagnosis of autism and we have two children. Of late, her mental health has deteriorated quite badly, which has had a deleterious effect on our marriage and my ability to support both her and our children. In brief, her moods swing like a yo-yo, from hateful and aggressive and irrational to childish and giggly and equally irrational, and back again in the space of ten minutes; her OCDs mean she spends five hours an evening searching for things she has lost; she misremembers what has been said, or makes things up and believes them; struggles to differentiate fantasy from reality; at times seems out of control; is paranoid about people conspiring against her, then contacts others to conspire against me; continually empties her bank account buying pink plastic toys for our girls (eight dolls houses, seven push chairs, fifteen pairs of shoes); sabotages everything good that she has going for her; asks me to move out and take the children and then tells me she can’t live without me; is suffering the worst confidence, self-esteem and anxiety crises of her life; shuts down and retreats into her own world if she cannot handle things; and is worrying all her autism-specialist support workers, who have seen her behaviour first-hand and believe it to stem from some mental health disorder underlying the autism.

Now, to get my wife to acknowledge she has a problem has been tantamount to climbing Everest, but with much help and support from Children’s Services, who are equally concerned about her, and the Health Visitor, who similarly agrees, we managed to get her to attend to an appointment with her GP. She was accompanied by her Autism Support Manager, an expert who has known her for ten years and says that her behaviour is not normal and not consistent with autism. Her GP agreed that her behaviour was very troubling and, given the impact it is having on our marriage and her ability to look after the children, made an urgent referral to the Mental Health Team to have my wife assessed.

I have been castigated by my wife’s family for seeking help, for talking to people outside the family, for being honest. They told me I have betrayed my marriage, I am going to have my children taken away, everything is my fault and I should never speak to anybody about anything, but I have done this through a genuine desire to save my marriage, to get my wife help and make things better for her by giving her access to the wonderful abilities of Mental Health professionals such as yourselves. I was sure that you would be able to help.

You can therefore imagine my horror and disgust to receive a letter from the Mental Health Team saying that, after receiving the referral, they had ‘discussed’ my wife’s case and decided she doesn’t have any mental health problems and therefore doesn’t need to be assessed and has been discharged. Clearly, then, you think that OCD is simply a side-effect of autism; rapid mood swings are a side-effect of autism; irrationality and self-destructive behaviour are side-effects of autism; paranoia is a side-effect of autism; depression, anxiety, low self-esteem and low confidence are side-effects of autism; and everybody who knows her and suggests she is suffering mental health problems is simply wrong, because she has autism and that trumps all. Indeed, I imagine that if she was hearing voices, or believed she was the Queen of Sheba, you would attribute that to her autism also. I would therefore like to ask: exactly what does it take for Mental Health professionals to see somebody with autism?

In society, those of us on the autism spectrum suffer a great deal of prejudice from people who see us as a label, a walking, talking diagnosis ripped from the pages of the DSM, instead of unique individuals. It is appalling that we must experience this same stigma from the Mental Health Community, who really ought to know better. Just because we have autism doesn’t mean we don’t also have mental health difficulties, and certainly should not give you the right to decline to see us simply because we have a developmental disorder to which you can ascribe all our problems.

I know that money is tight in this age of austerity and it helps your budget to fob off people with autism to other, less appropriate departments, but you might like to ask yourselves whether discriminating against an entire section of society – many of whom are struggling with various mental health disorders and very real distress and anguish – is right, or helpful, or fair.

In summary, I have sought your help because my wife’s mental health has been deteriorating, but you have refused to see her because you have decided all her problems are concomitant with a diagnosis of autism, placing the onus on me to hold this family together without your specialist assistance. I can only hope that her mental health does not continue to decline to the point at which even you can’t ignore it.

Warm regards and best wishes,

Gillan Drew

[UPDATE: The value of persistence]