Late Diagnosis of Autism interview, part 2

As the title suggests, part two of my interview is now online.

Click here to access it.

Gillan

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NEVER tell me I have ‘man flu’

What is the most sexist, unsympathetic, demeaning thing you can say to a guy when he’s ill?

Call it ‘man flu’.

I just slammed the door in my neighbour’s face for exactly this reason, and do I feel bad for such unwelcoming behaviour? In all honesty, no. No I do not.

Let me explain why this sort of thing pisses me off. I generally do a 17-18 hour day looking after a one-year-old and a three-year-old, regardless of how I’m feeling. Oftentimes, it’s a great deal more than that. The last four nights my little one stayed up till 3am, 2.15am, midnight, and 2am. On two of those nights, the other one got me up at 4. Why? Because they’ve both got coughs and colds and are feeling too unwell to sleep. I kid you not, my clothes are held together by snot stains and phlegm.

It doesn’t matter if I only snatch a couple of hours sleep – I get up at 7am to change nappies and wipe arses, get others dressed and breakfasted before myself. I play mind-numbing games, take the kids swimming, give them baths, cuddle them, read them stories, cook them lunch and dinner, drive around trying to get them to sleep. I can’t even take a shit by myself anymore.

Which is funny considering I’ve caught my youngest’s upset stomach and had to sit on the toilet eight times yesterday. The human body just can’t take that kind of pressure indefinitely. Something’s got to give, and it has.

Today I’ve woken up exhausted, with a headache, sore throat, pink eyes, runny nose and blocked ears, and I feel like a piece of crap mushed into a taxi’s floor mat. But I still got up, got the kids dressed and fed, took them swimming, brought them home, got them lunch…and then there was a knock at the door.

My neighbour looked at me and the first thing she said was, ‘Are you unwell?’ because I clearly look like shit.

‘I feel awful,’ I said.

‘Oh, poor you,’ she replied sarcastically. ‘What is it, man flu?’

I’ll tell you, she got off lightly with a door slammed in her face.

How did society reach a point where it’s deemed okay to mock somebody who is feeling unwell purely because of their sex? I’m talking to women, because it’s only women who do this, such as my wife, mother-in-law, my neighbour, work colleagues, casual acquaintances, TV shows, adverts – exactly how can you justify mocking people for being ill? If you wouldn’t mock a woman in the same way, why not? And what kind of person does that make you?

I know there’s going to be a section of people out there reading this who’ll say, ‘Well, women had it bad for ages, so suck it up, dude,’ but if such people can’t see the irony in combating sexism by being sexist, then you’re too stupid to be reading my site. I have never mocked anybody, male or female, for being unwell. Why would I? It’s just plain rude.

It’s part of a wider trend of belittling, ugly, anti-male rhetoric that you see out there. Explain something to a woman? You’re mansplaining. Interrupt a woman? You’re manterrupting. Because of course, only men talk down to people or interrupt them.

What the hell has sex got to do with anything? If someone talks down to you or interrupts you, it’s not a male thing – it’s an asshole thing. If a woman talks down to me or interrupts me, I don’t immediately infer it’s because of her sex and use some bullshit, made-up word like womansplaining or womanterruption. You know why? Because neither sex has a monopoly on assholes.

And besides, we already have perfectly good words for these behaviours that don’t try and divide us as people – ‘condescending’ and ‘interrupting’. And there’s a great, inoffensive word you can use when I man is feeling ill that doesn’t belittle him – ‘ill’.

Seriously, I believe in equality. We all have the right to be treated equally and have the same opportunities, regardless of our sex, ethnicity, religion or sexuality. There are, undoubtedly, areas in which women are unjustly discriminated against, just as there are those in which men are unjustly discriminated against (but you’re pretty unlikely to read about that anywhere), but if you believe that ‘raising women up’ to be equal to men is synonymous with ‘pulling men down’, then you’re part of the reason we live in such a fractured, divided society.

Now I’m going to get on with my afternoon, ill or not, knowing I’ve probably got another thirteen hours before I can crawl into bed.

Rant over.

Imaginative play and the autistic male

Oh my gosh, my daughter is driving me insane. Now nearing three-and-a-half, she has reached the stage where imaginative play is pretty much the only thing she wants to do, and my life has consequently devolved into an endless game of mummies and babies, doctors and nurses, car journeys, shopping trips, picnics and tea parties, and I honestly don’t know how much more I can take.

I don’t mind playing with her. I like building towers out of wooden blocks and playing with her toy trains. I like sword-fighting with her and doing flash cards and making up songs. It’s the pretending games I can’t stand.

When I spend all day and much of the night looking after a real baby, I have little interest in looking after a plastic one. When the only thing I do that isn’t looking after a baby is driving to the shops to go food shopping, it’s a real struggle to get motivated about driving an imaginary car to an imaginary supermarket to buy imaginary items with imaginary money. And I have no idea how many cups of air I’ve drunk, or wooden finger cakes I’ve scoffed, but if they were real I’d bankrupt the NHS with my soaring blood sugar and endless bladder problems.

Ironically, the easiest one to bear is being a patient in hospital.

‘Daddy, please can you play doctors with me?’

‘Do I have to do anything other than lie on the sofa?’

‘No. You got a dinosaur in your tummy and I got to cut it out and make you better.’

‘Fine, knock yourself out. I’ll just close my eyes for a minute…’

At the other end of the scale, the hardest is when she decides the four square feet between the back of the armchair and the wall is her house, and I’m her neighbour, who lives in the main part of the lounge, because she always invites me over for dance parties where I’m expected to shake my booty.

‘How about you come over to my house, where there’s much  more room?’

‘Coz it’s my party in my house.’

‘But why don’t we pretend this much bigger space is your house?’

‘Because this is my house and you need to be dancing!’

So I squeeze myself in and simply shift my weight from foot to foot, because that’s all I can do. You want to know where I get my ‘dad dancing’ from? It’s here. This. Especially when it’s to Justin freaking Fletcher. (Although to be fair, his version of ‘What does the Fox say?’ isn’t the worst song I’ve ever heard, even if my daughter sings it as, ‘Why does the fuck’s sake!’)

And she gets so into her games that anybody not buying into her reality gets short shrift.

‘The drawbridge is closed, you can’t come through here!’

‘But my coffee’s on the windowsill.’

‘You can’t come in.’

‘Well, I am because I’m going to get my coffee.’

‘No, you can’t come in, no, NO!’ Cue screaming, shouting, crying, trying to block me, holding onto my ankle as I drag her behind me across the lounge (‘You’re in the moat! You’re in the moat!’) to get my gosh-darned drink. It’s excruciating and it never seems to end.

Now, I imagine many parents have this problem, but for once I’m going to play the autism card and say, ‘I just can’t do it, and it’s because of my autism.’

I have NEVER got imaginative play, even when I was young enough to enjoy it. Actually, that’s not entirely accurate. I understood my own play – it was other people’s imaginative play I couldn’t get.

I’d treat my own toys as though they had thoughts and feelings. I once dragged my mother all the way back to playschool because I left my imaginary pet rabbit there. But give the same suspension of disbelief to other people’s toys and games? I didn’t have the ability.

That’s why at nursery, I’d wander straight through the middle of the farmyard the other kids had set up and not understand why they were now angry and upset – they were just pieces of plastic. That’s why I had no problem breaking my brother’s toys – they had no feelings, although he clearly did, and I’d invariably feel bad (and confused) a moment afterwards when I saw his tears. I was simply unable to appreciate that others could have the same emotional attachment to their toys and games as I did to mine – a fundamental inability to understand how other people think and feel.

And that’s why I’m struggling so much right now. I just don’t get that my daughter is investing her emotions into an imaginative reality.

However, while I might not get it, I can understand it at an intellectual level and adjust my behaviour accordingly. I know that imaginative play is important in child development, and I know that for the benefit of her emotional wellbeing, not to mention our relationship, I have to pretend that the things that are important to her are also important to me. So that’s what I do, as painful as it is.

The best way of surviving it? Biblical levels of sarcasm that she’s too young to understand.

‘What’s that? You want me to keep my voice down so I don’t wake your baby? Gosh, I wish she was just a cheap piece of hardened petrochemically-derived organic polymers, but since she’s clearly a real baby, then okay, honey, I’ll be quiet.’

‘What? Your baby has a poorly knee? Oh poor her, what an absolute tragedy. I’d better drop everything and see to it right away because it’s definitely so much more important than anything I was doing.’

‘I can’t come through here because it’s on fire? Well, let me check what’s on my utility belt, shall I? Wow, what do you know? I just so happen to have a fireproof suit I can put on. Holy asbestosis, Batman! Now get out of my way.’

Of course, if she learns to detect disingenuousness before she grows out of this imaginative phase, I don’t know what the hell I’m going to do!

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

Que Sera Sera

When I was just a little girl,
I asked my daddy, what will I be?
Will I be pretty?
Will I be rich?
Here's what he said to me:

Oh my God, will you give it a rest, you are the neediest kid, stop it with all the gosh-darned questions, can you just give me five minutes to myself, you’re driving me insane, I feel like I’m taking crazy pills, and leave your sister alone, no I can see you doing it, get off her, GET OFF HER, she’s not a toy, just be quiet and sit still, no sit still, do you want me to take you into the woods and leave you there, go in your playroom I can’t take it anymore, no there are no dinosaurs in your playroom, no there are no dinosaurs anymore, no there aren’t, okay fine there are dinosaurs but there are no dinosaurs around here, no it’s too cold this far north, they’ve all gone south for the winter, so go away and leave me alone, and stop saying what, stop saying WHAT, right that’s it, say what again, SAY WHAT AGAIN, I dare you, I double dare you, say what again, no, no I was quoting a movie, no I don’t want you to say what again, I don’t want you to say what, oh my gosh my brain is melting, how about I put on Topsy and Tim, okay you can watch Topsy and Tim but only if you promise to stop saying what and give me a break, you promise, okay great, which episode, we’ve got fifty episodes why do you always want that one, you’ve seen it a hundred times, okay whatever watch it then, are you watching it, why aren’t you watching it, well this is the one you wanted, oh for crying out loud, leave your sister alone, no you can’t have an ice-lolly, no you can’t, stop crying, it’s five minutes to teatime, stop crying, no I’m not mean, just because I said you couldn’t have an ice-lolly, come on cheer up, be happy, leave your sister alone, no don’t you dare start singing that song, if you start singing that song I’ll, baby shark doo doo do do do do, baby shark doo doo do do do do, no it’s stuck in my head now, how many hours till your bedtime, three, THREE, oh my God how am I going to manage it, mummy, mummy can you come and look after your little princess, uh huh yeah I’m sure it’s really important but I’m trying to serve up dinner, yeah she keeps saying what again, what, yeah three hours till bedtime, no I don’t know how we’re going to make it either, que sera sera.

The value of persistence

A while ago I posted An open letter to the Mental Health Community arguing that when confronted by a person with both autism and mental health difficulties, they found it all too easy to fob us off to the Learning Disabilities Team without properly investigating our problems. The specific cause of that letter was their refusal to see my wife, despite her deteriorating mental health, because of her autism. Hardly a stellar job of ‘care in the community’.

While not deigning to see her, they did, in absentia, recommend the GP put her on a second antidepressant in addition to the one she was already on, which caused her mood swings to become even more wild, and resulted in massive disruption to our home life without any follow-up. So my wife stopped taking all her antidepressants, and things got even worse. Again, a signal failure of the Mental Health Community to provide much-needed help and support to a person (and family) in distress. (Learning Disabilities, by the way, refused to see her because, apparently, her IQ is too high. So where exactly do people with autism go to get specialist help?)

I will be honest with you – thanks to my wife’s unstable, abusive, and downright crazy behaviour, her unwillingness to address her issues, and our increasingly fractious relationship, I have seriously considered walking out and taking the kids with me. It has been a year of absolute hell, and there is not one person I’ve spoken to who thinks I should stay, and fifteen or so who have told me I should go.

My response has always been the same: I want to make sure I’ve tried everything to make it work before I go so that if one day my kids ask me if there was anything more I could have done, I can honestly say no. People tell me I have passed that point, but I do not need to justify it to them, only myself and my children. But it has been far from easy.

Unwilling to give up and convinced there was more going on with my wife than simply autism, I read everything I could about developmental disorders, learning disabilities and mental health issues, until I eventually came across something called Emotionally Unstable Personality Disorder of the Impulsive Type. Of the five criteria in ICD-10, my wife fit all of them, and you need three for a diagnosis. Of the nine criteria on the NHS website (five required for a diagnosis), she fit eight.

Her impulsive behaviours without any thought of the consequences, her self-destructive tendencies, her mood swings and emotional overreactions, her uncontrollable behavioural explosions, her lack of opinions and minimal sense of self, her terrible fear of abandonment, her need for continual reassurance, her turbulent interpersonal relationships, her refusal to follow through with anything that doesn’t give instant gratification, her ‘zoning out’ whenever anything ‘difficult’ is discussed, her hypersensitivity to perceived criticism, her paranoia at times of stress and break from reality when she is highly emotional, her profligate spending, her binge eating, the fact she swings from obsessing over me to hating me, and that she can never be relaxed or comfortable – it all fits EUPD.

And it’s hardly a new thing – her school reports aged five, six, seven say the exact same things: gives up on anything that’s hard; does not apply herself; struggles to control her behaviour; will not take instruction or correction; retreats into her own world and is unreachable; does not mix well with the other children; terrified of failing; requires constant reassurance; moody; angry; difficult.

Armed with this knowledge, I wrote a document outlining all the symptoms and diagnostic criteria of EUPD, and all of my wife’s behaviours that fit these conditions, and examples of each. We then went back to the doctor, who again referred my wife to the Community Mental Health Team, and attached this document. Lo and behold, they agreed to see my wife this time.

She saw them today with her Care Manager. Yes, they said, she almost certainly has Emotionally Unstable (Impulsive) Personality Disorder. They are referring her to a specialist to diagnose her and giving her twelve weeks of CBT. It is a lifelong condition and they will work with her. Thank goodness.

I suppose I should be relieved, and thankful. But here is my issue: I am not a doctor. I am most certainly not a psychiatrist. I am in no way a mental healthcare professional. So why the hell was it down to me to investigate, research and suggest a potential diagnosis? Why on earth did I have to fight and struggle and browbeat and beg and eventually find the answers for myself before anyone would see us? And why, if it’s so plain she has a personality disorder, has it taken until she is 32 years of age for someone to spot it? Not to mention that if they had seen her seven months ago, it would have saved my family a shitload of soul-searching, heartache and pain. Seems to me there’s not that much ‘care’ in healthcare.

But at least this shows the value of persistence. If at first you don’t succeed…do their job for them.