Mental Illness and Me: a Testimonial

I am mentally ill.

Despite having been mentally ill for much of my adolescence and most of my adult life, it is still not an easy thing to admit. Nor is the word ‘depression’ something I’ve ever really been comfortable owning.

The Black Dog, the Cancer In My Mind, the Darkness That Never Seems To Let Me Go – all of those seem better somehow, more free from the stigma of depression. I’ve spent my life trying to pass it off as something else – genius twinned with madness, a self-destructive temperament, a personality disorder. Depressed? No, never that.

Luckily for me, I was diagnosed with autism, which is one of the best ways of avoiding facing up to your illness. You can attribute all of your problems and difficulties, whether motivational, social, functional, emotional, behavioural or cognitive, to that umbrella term. Don’t want to leave the house? Autism. Always interpret things in a negative way? Autism. Feel you just can’t cope anymore as a husband, a father, a human being? Always the autism.

And so I’ve spent the better part of a decade denying that I suffer from depression. I take antidepressants to tamp down the overactive sensory and central nervous system responses caused by my autism, I say. I take anxiety management and mindfulness courses to address my social phobia, I pretend. I wrestle with the urge to self-harm because I’m a father and I don’t want them to take away my kids, without ever asking why I even have those urges to begin with.

Why do I never admit I have depression?

Because I hate depression and I always have, ever since I was first formally diagnosed with it at 17. Because despite repeated assurances to the contrary, I always felt it was a weakness, something that happens to melodramatic teenagers and socially incompetent adults, and not real people. And because, as an illness, it’s just so self-centred, indulgent and sick.

Most of my prejudice comes from within. You’re a wimp, I think. Just get up and do it. Everyone else manages, so why can’t you? You haven’t got anything to be miserable about. Why are you just wallowing? Why can’t you take steps to get yourself out of this funk? Stop being such a fucking baby.

And yet the big secret, the one that nobody likes to admit, is that deep down we actually love our depression. Because it’s ours, and it’s been with us all our lives, our constant companion, and we don’t want to lose it. We get off on just how miserable we are. It’s part of us, and we look on those who ‘get better’ as traitors to themselves, because it’s not real, there’s no ever getting better, this is who we are, depression is what makes us special, and we think we can coexist with it, channel it, control it.

Until we reach a point, as I did a little over two weeks ago, where we realise that it has taken control of us, and it’s eating us alive, and there’s no place else to go but down.

I wish you didn’t have to reach rock bottom to get that epiphany. I wish there was a way that the insight would be granted you before you’re at the point of desperation. But there it is.

I went my doctor with a care worker, and as I started to tell her how I felt, all the denials fell away, and even I hadn’t realised how bad I’d become. As I put into words all the thoughts and feelings I’d bottled up, I discovered just how much I’d been holding in. For forty minutes it kept pouring out of me, the emptiness, the misery, the tears I had never shed. And bless the doctor, even though the appointment massively overran, she gave me the attention that I desperately needed at the time I needed it most.

She prescribed a new antidepressant, in addition to the one I’m already on, referred me to the Community Mental Health Team and sent me for blood tests for possible ME. And despite being hit by a multitude of side-effects – dry mouth, tiredness, nausea, diarrhoea, and a sudden dizziness that comes on every time a dog barks, a door slams or my phone vibrates in my pocket – I feel like a different person. Whether it is because of the pills, the distraction of the side-effects, the outpouring of emotion or some kind of placebo doesn’t matter to me at all. All that matters is that I’m not where I was.

What is astonishing is the change I’ve seen. It’s almost like an out-of-body experience. My thoughts are clear, my heart is stilled. The guy who walked into that doctor’s office a week ago – that angry, bitter, resentful, miserable, broken wretch of a person – is gone. And I’m glad. That guy wasn’t me. I don’t know who he was, but he wasn’t me. A veil has descended over him, as over the dead, and I struggle even to connect him to me. It is as though Gillan died, and I am what has been reborn in his stead.

So finally, with the clarity of thought to reflect, I look at him, this agitated, toxic, troubled soul, and I think: how the hell did he get like that? How did he get like that and how did he manage to keep going so long?

The second question answers the first: he got that way because he kept going so long.

I read a book a few years ago entitled Depressive Illness: The Curse of the Strong, by Dr Tim Cantopher. The central premise flips the received wisdom on its head – people with depression are not the weak ones in society but the strong. The weak encounter something difficult, unhealthy, damaging, and they run away from it, quit, give up. The strong put up with it, and press on, and keep going, long after they should. The weak do not endure long enough to get depression; the strong keep going, with no let up or sense of quit, until they’re used up and literally can’t go on any more.

That’s why Gillan got to where he was two weeks ago. He was too damn strong for his own good.

But now he is me, and I will no longer deny it.

I am mentally ill.

I am depressed.

I won’t be quite so strong in future.

And that’s nothing to be ashamed of.

So SAD

I’ve written before about suffering from Seasonal Affective Disorder. Every year I hibernate, stop going out, stop writing, stop reading – just eat and sleep and snap at people over trivialities. And while this year is no different – I keep stuffing my face with chocolate, going to bed two hours earlier than usual and falling out with family members on a weekly basis – I’ve noticed an addition to my symptoms this year:

An overwhelming feeling of sadness.

It’s weird that having something called SAD, I’ve never particularly felt sad with it before. Moody? Sure. Lacking in energy, filled with self-loathing and totally uninterested in anything other than binge-watching old episodes of Arrested Development? Naturally. But sad? No, I’m too depressed to be sad.

For those who don’t suffer from depressive illness, allow me to explain the difference between depression and sadness.

Sadness is an emotion, a feeling, like joy or fear. You can feel it in particular locations in your body, and it provokes a visceral physiological reaction – a sinking chest, a trembling lip, tears. It is transitory and ephemeral, and stimulated as a reaction to something going on in your life – a death, a rejection, a painful memory. It comes in a rush, can be incredibly intense, and then goes away again, without leaving a fingerprint in your soul. That is sadness.

Depression, on the other hand, is a mood – an ongoing, long-lived, debilitating way of life that pushes down on you and pervades your entire body, mind and spirit. It’s not a feeling but a way of feeling. There are no ups and downs, no bursts of colour, just an ever-present gloom. It exists irrespective of what else is happening in your life, and though it is sometimes less pronounced, it never truly leaves you, a shadow that lurks in the recesses of your being and stains all that you’ll ever become. That is depression.

If sadness is a thunderstorm, horrible and exciting, depression is an endless grey sky, without wind, without rain, and without the prospect of ever seeing the sun again.

Which is why it’s odd that this year, this gripping, all-consuming sadness keeps creeping up on me and washing over me, stopping me in my tracks.

Contrary to the philosophy underpinning Cognitive Behavioural Therapy that the ancestor of every feeling is a thought, this feeling only comes when I’m not thinking at all. If I’m doing something that requires even the slightest modicum of brainpower, I’m fine – at least, as fine as I ever get. But every time I stop or do something so routine I don’t even need to think about it, I get hit by a wave of sadness.

It works like this – I’ll be watching the kids play, making sure they’re not killing each other, and all will be well and good. I’ll walk into the kitchen to make myself a coffee, flip on the kettle, and – BOOM! – I’m sad. So sad.

Or I’ll be doing the shopping, or driving the car, or playing with my kids, and the moment I stop, this dreadful sadness slaps me across the face. So I keep active doing word puzzles, watching game shows on TV, completing online quizzes so that I’m constantly thinking. Whenever I stop thinking, that’s when it comes – this feeling that I’m going to burst into tears.

People have suggested my antidepressants have stopped working, that I should go see a doctor. I can’t imagine why that would be the case after fifteen years on them. Besides, I saw a psychiatrist around eight or nine years ago to ask him that very question, and he said that you don’t build up a tolerance to SSRIs, needing to up the dose to receive the same effect. No, he said that depression just happens to be one of those things I have to live with.

And besides, sadness isn’t depression, so why would antidepressants control it?

I just have to wait for the spring again, even as it gets harder year on year. And hope that these thunderstorms will go away and leave me with my overcast sky.

The Hidden Disability and the Hands-On Dad

I’m a pretty placid guy, I think. I take as I find, try to treat others as I’d like to be treated myself, and generally endure massive amounts of abuse before I fight back. I can be irritable, sure, and I can be a dick, but I try to make the world a better place by being in it.

All that being said, there’s one thing that drives me freaking insane: when people assume I’m somehow less of a parent because I’m a man.

Yesterday, I arrived home from nursery at around 6pm with my little girl in tow and unloaded her from the back of the car. A neighbour was out in the street and asked me how I was.

‘Knackered,’ I replied.

‘Well, if you’re knackered, imagine how your wife feels,’ she replied. ‘It’s harder for her – she’s the mother.’

Wow. Considering we’ve only ever exchanged a couple of words before, it seems awfully forward to express such derision for my physical and mental state.

Allow me to respond.

‘Well, actually, my wife has autism and a learning disability and I’m practically her carer; I can’t leave her alone with the kids more than an hour or she becomes overwhelmed; she goes to bed at 9pm and sleeps right through till morning, so until 8am, I am a single parent; and every time the baby cries, she passes her to me.

‘For every five nappies I change, she changes one; I cook four nights a week while she cooks twice, unless she decides she’s not in the mood, in which case I have to throw something together or we go hungry; I look after the dog, the cat, the chickens, the fish; I do all the driving; and if I try to nap in the afternoon, I’m told I’m selfish and don’t care about the family.

‘When the baby cries, my wife cries; when my wife cries, the toddler cries; and then the toddler tells me I’m naughty for making mummy cry. So I soothe the baby, then soothe the toddler, which soothes my wife.

‘I’m the only one who baths our toddler; I put her to bed every night, even when she’s screaming to stay up because the baby’s still awake, which is every night; I take her to nursery twice a week and pick her up; I hold her hand when she wakes crying in the night; I cuddle her because since her sister arrived she needs three times the love and reassurance; I console her when mummy’s too busy playing with her phone to pay her any attention; and I’m the only one who disciplines her, gives her stability and clear boundaries, and remains consistent in my behaviour.

‘I haven’t had a good night’s sleep in two years, while my wife gets ten hours a night; haven’t had more than a few hours in a row ‘off’, while my wife goes out several times a week; bear the full responsibility for everybody in this household; and I am not allowed to get ill, or feel tired, or have a headache, or else everything falls apart.

‘If I go out, I have to arrange for someone to come in and sit with my wife; and everywhere I go, everybody asks me how my wife is coping, and how we can make things easier for her, and whether she needs more time away from the children.

‘My life revolves around my kids, as though I’m in a bubble of childcare; I don’t have the time, energy or inclination to do any of the things I used to do; I eat all the time and am so tired I barely know the day of the week; I feel as though I’m just going through the motions; and I read a pamphlet that said these are all signs of postnatal depression in women, but, damn it, this is just normal for me.

‘And now let me tell you why I’m knackered today. Between feeding and changing the baby last night, I worked on my speech till 1am. The baby was up at two, four and six this morning, an hour each time, and then my toddler once again got up at seven. I have had three hours of sleep in snatches of 45 minutes a time, and that’s the way it’s been for a month.

‘After breakfast I took my toddler to nursery, where she spent all day because I was out this afternoon and my wife wasn’t capable of looking after them both. After making lunch, I packed everything up for my wife and drove into Bournemouth. I then set up the pushchair, loaded the baby into it, and bid my wife adieu as I headed for a hotel.

‘Upon arrival, I was seated at a table beside best-selling author Kathy Lette and her son, Holby City actor Jules Robertson, and across from comedienne Rosie Jones. I was both overwhelmed and terrified, but I hid it well.

‘After a bit of chit-chat, I got up and gave a speech to 140 local business leaders, the mayors of Poole, Bournemouth and Christchurch, an MP and a Lord, encouraging them to provide work placements for people with special educational needs. After my speech, several people approached me and told me they had been sufficiently moved by my words to offer employment to people with autism.

‘Oh, did I forget to mention that I’m autistic too? And that I’m also susceptible to depression and have been on a high dose of antidepressants for fifteen years? And that nobody seems to give a damn about whether I’m coping?

‘So, my speech over, I picked up my wife, loaded the baby and pushchair into the car, and drove home. The baby apparently hadn’t woken up at all, but she was wet as my wife hadn’t changed her. I changed her clothes and nappy and fed her, then went to pick up my toddler from nursery.

‘On the way back, I thought how exhausted I was and how desperately I needed some rest, but I knew I still had to make tea, put my toddler to bed, and then, after my wife went to bed, get up up at least three times in the night to see to the baby.

‘And then I saw you, and you asked me how I was.

‘”Knackered,” I replied.

‘”Well, if you’re knackered, imagine how your wife feels,” you replied. “It’s harder for her – she’s the mother.”

‘Now, I’m not going to tell you how offensive your assumption is that my wife works harder at parenting than me. I’m not going to harp on about how while from the outside we might look like a nice, normal family, you have no freaking idea what goes on inside. And nor am I going to roll out that old adage that to assume makes an ASS out of U and ME. No.

‘To assume makes you an ass, period. And that’s all I have to say about that.’

That’s what I could have said. Instead, I dug deep, took it on the chin, and said, ‘Yep, it’s much harder on the mum.’

Because the situation in my household is the situation in my household. It’s not ideal, sure, but I’m surviving, and I’ll be damned if I’m going to allow my neighbours to know what’s really going on, and talk about it among themselves, and judge us.

They call high-functioning autism the ‘hidden disability’, and it really is – in every way that matters.

The Circle of Life

They say that life is what happens while you’re making other plans, and they’re definitely not wrong. I had this week planned out in fine detail. I have to: I’m getting married on Saturday. So there is an awful lot to do and I couldn’t afford any hiccups.

You can guess where this is going.

When you’re a dad, hiccups go with the territory. I expected a few things to crop up. I hadn’t imagined that life, death, birth, suicide and viral gastroenteritis would feature quite so prominently, however.

It started Monday. I was already up against it as I had my stag-do that night, when, driving home along a country lane, I saw a ball of white fluff wandering down the middle of the road. Since it’s a busy road and people drive like maniacs, I stopped to move it out of traffic, when I realised it was something I really couldn’t leave to get run over.

There were no trees about – just bushes – and those on the other side of a ditch, and if I left it in a random hedge there was no way it’d survive. Now I know you’re supposed to leave balls of fluff alone, but these were extenuating circumstances. So I did what I thought was best – I picked it up and I put it in my car.

I had no clue what it was, but given it had a hooked beak and long, sharp talons, I had a fairly good guess.

IMG_5447
Any ideas?

Since the last bird of prey I tried to rescue didn’t make it, I was determined that this one would. Luckily a few miles down the road is an owl, raptor and reptile sanctuary, so I took it there. Turns out it was a barn owl chick, far too young to be out of the nest. They’re going to get him well and then find a nest with similar aged chicks and slip him in, to be raised by a surrogate mother back in the wild.

My good deed for Monday was done – but it ate up a massive chunk of the day.

On Tuesday, I did a few wedding-related things like writing my groom’s speech, but I have to confess to being distracted all day by the wrens nesting two feet outside the back door. Every three or four minutes they return to the box with an insect, whereuopon three very hungry chicks lean chirping out of the hole. I guess I don’t have to watch them, but it’s hard not to when they’re so busy from sun up – around half-four in the morning – right the way through to after sunset – gone nine-thirty at night.

IMG_5454
Industrious little buggers

Part of the reason I couldn’t look away was this whole parenting thing. I couldn’t help feeling a kinship with these tiny little birds looking after their kids, sacrificing their time and energy to care for their young ones around the clock. I admired them their energy, and felt it needed to be acknowledged, if only through my observation. And if I’m honest, I wondered if I’d be able to cope if I had to expend so much effort on my child as they did on theirs.

The answer wasn’t long in coming.

I put the baby to bed as usual around seven Tuesday night. At ten came the most horrible sound, and when I rushed in there I found little Izzie soaked in vomit. I picked her up and, my god, she was burning up! With a temperature of 38.6, I gave her some Calpol, two hours of TLC, got her to bed shortly after midnight, and checked on her every two hours.

By six o’clock this morning she was 39.1 degrees and very unhappy. It’s awful, knowing she’s unwell but unable to do much about it. So many thoughts and possibilities run through your mind, and after so few hours sleep, you jump to worst case scenarios.

I spoke to a doctor at 8.30, saw her at 11, when Izzie was 39.3, and was sent straight to the hospital so she could be assessed. And that was just the start of six hours of shenanigans.

Izzie was the most distressed I’ve ever seen her, and Lizzie almost as bad. As the stable presence in their lives, I have to take it in my stride, act confident and calm, reassure them that everything’s okay and we’ll deal with whatever happens, even though inside I’m just as churned up. Watching Izzie get poked and prodded and howl like a banshee must rank up there as one of the least comfortable experiences of my life.

Well, worse was to come. They needed a urine sample to test, and despite this being 2016, guess how you get a urine sample from a baby? You sit the over-hot, kicking, squirming, screaming sweetie on your partner’s lap on a waterproof sheet, crouch between their legs with a plastic tub, and get ready to catch whatever comes out.

I always figured that since they’re incontinent, babies drip-drip-dripped, little and often. Nope. They pee just like normal people – when they need to.

So we waited.

And waited.

And waited.

And waited.

For an hour and three-quarters. Crouched, ready to jump into action in a split second to catch that pee! And true to form, Izzie waited for the doctor to arrive and the precise moment I looked away to make her entrance to the stage. In the event, I got it all over my hands, but managed to salvage enough to test.

Meanwhile, doctors and nurses and mothers and boyfriends came to visit the girl in the bed next to us, a teenager who took an overdose this morning, and, by dint of still being classed as a child, was placed in a bay surrounded by screaming babies.

It’s impossible not to overhear things in a hospital – the curtains aren’t exactly soundproof, after all.

‘Did you intend to kill yourself?’

‘Dunno.’

‘Are you happy you’re still here?’

‘Dunno.’

She gave her mother a pretty hard time, lots of effing and blinding. And as a dad, I thought how odd it was that fourteen years earlier, she’d have been like Izzie, a little girl, an innocent, unsullied, perfect creature. I can’t comprehend how I would feel if in fourteen years time it’s Izzie in that bed following a suicide attempt, telling me to ‘shut up, I just don’t care, leave me alone, I don’t give a f**k.’

The stark contrast really struck me, two girls in two beds, separated by nothing more than a curtain and a few years; one so simple and dependent and full of the joys of spring, the other so complex and cynical and utterly jaded. And I want to cling to Izzie and stop her growing up, retain her innocence at any cost, arrest the passage of time.

But I can’t.

In one bed, we’re planning our futures together; in the other, she could have been dead. She might still be – it was paracetamol and they were waiting to see how much damage she’d done to her organs.

The thing is, in my life I’ve been suicidal. I’ve self-harmed. I’ve always been a little bit crazy. My teens are a blur of high emotions and antidepressants, hidden knives and hidden scars. I’m not always rational. People tell me I’ve said things, done things, and I have no recollection whatsoever. At times of high stress I become paranoid that people can hear my thoughts. I am the girl in the bed beyond the curtain – at least, I was. But I got through it. Saved, as it were, by the love of my family, a stubborn unwillingness to give in, and by the miracle that is my daughter.

I don’t ever want her to grow up like me. Stay this side of the curtain, sweetheart.

Long story short, after I wiped the piss off my hands, we discovered she didn’t have a UTI, and they diagnosed it as viral gastroenteritis. Eventually we were allowed to go home, after eight hours away.

Things have calmed a little this evening – Lizzie and Izzie are both snoring, but the latter wakes up every ten minutes, has a little cry, and drops back off. I’m monitoring temperatures, wiping up diarrhoea, and preparing for another night of broken sleep. In the test of whether I’m as good a parent as a wren, I think I’ve passed.

All day I’ve acted tough. Now the world has gone to sleep I can be honest. I feel tearful. Seeing Izzie going through all that, not knowing what was wrong – I was more scared than anyone can imagine. Because Izzie is my world.

So much has happened this week and it’s only Wednesday! If tomorrow is anything like today, I don’t know what I’ll do. Did I mention I’m getting married in three days?

[EDIT: I have just discovered from the Barn Owl Trust that I did exactly the right thing. It says finding barn owl chicks out of the nest before they can fly is not normal, they are only fed in the nest and parents will ignore one on the ground and leave it to starve to death, they have very little sense of smell and will not reject it if you handle it, and leaving it well alone is usually not the appropriate course of action. On the other hand, if it was a tawny owl chick, you should leave it as it is normal for chicks to be out of the nest before they can fly and parents will feed them anywhere – even on the ground. Barn owl chick = intervene. Tawny owl chick = leave alone. Yay me.]

Asperger’s, Emotions and Parenthood

There is a persistent myth that people with Asperger’s Syndrome don’t feel emotions. It’s a myth because, if anything, I think many of us feel emotions more strongly than neurotypicals – it just doesn’t look like it.

I liken emotions in autism to a case of arrested development. Our emotional development suddenly stops while our bodies and cognitive abilities continue to grow. Unfortunately, it usually gets stuck on the ‘teenage’ setting, meaning we don’t understand what we feel, but we feel it all so intensely – the manic highs and the desperate lows – that we become overwhelmed and cease to function. Imagine being stuck as a hormonal fourteen-year-old your whole life – doesn’t bear thinking about, does it?

Since our emotions can confuse, unsettle, and even scare us, we embrace routines, predictability, systematic thinking and mental reasoning. We live in our minds and try to keep our nasty, unpleasant feelings pushed down deep where they can’t harm us. Many resort to antidepressants to keep our feelings at bay. And when our emotions do get the better of us, and we can’t cope, we seek out solitude and experience them alone. The emotionally unresponsive Aspie, approaching situations from the head and not the heart, is therefore in many ways a defence mechanism against our dangerous unbridled passions.

At least, that’s how I see it.

Yet even knowing this, I did wonder why I didn’t feel more when Izzie was born. The father across from us in the Transitional Care Unit was always crying when he was hugging his newborn. ‘I love him so much, I just love him so much,’ he kept saying, until even his missus told him he was being pathetic. I just couldn’t relate to those feelings.

I was told, before Izzie was born, that the first time you hold your baby in your arms it’s special, the love is instantaneous, you’re overwhelmed with emotion, and yada, yada, yada. I’ve mentioned before that when I first met my baby I was pretty dazed and distracted by the whole ordeal of ambulances, operating theatres and incubators and it took me a good four hours to really start feeling the love. But I never got that emotional rush, that powerful knock-you-on-your-ass thrill of being a parent.

Until now.

This is going to sound really saccharine and namby-pamby, but the past few days I’ve been almost overwhelmed by this incredible feeling of love. I feel like I want to cry all the time. When the baby sleeps I feel this surge of emotion well up in my chest, and I watch her for hours because she’s perfect in every way. When I went to work in the charity shop yesterday, I missed her horribly – I was only gone three hours. And when customers asked about her, I showed them a picture and could have cried with pride. I can’t believe she’s only been here nineteen weeks. It feels like she was always with us, just waiting to be born to make us all complete.

See? It’s so horribly sweet and sickening I want to disown myself. Part of me wonders if it’s because I’ve reduced my caffeine intake and started a diet to knock off the twenty pounds I’ve put on in the last nineteen weeks, mostly through chocolate, chocolate and more chocolate; another part wonders if it’s because I haven’t had a good night’s sleep for almost five months; whereas in truth, it’s probably because I’m more relaxed about being a dad these days. The fumbling, panicked hell of the first couple of months, and the laboured, mind-sapping slog of the next two, have given way to a quiet confidence and acceptance of the new routine. And that allows me to see her and enjoy her for what she really is: an angel in our midst.

Actually, that’s going a little too far. She’s suddenly discovered she can squeak like R2-D2, so every time she’s displeased with something, which is often, she treats us to a sound even dolphins wouldn’t enjoy. It’s a high-pitched, screeching whine, somewhere between a dial-up modem and that awful sound you used to get when you picked up the phone only to hear a fax machine on the other end (for those of you too young to remember dial-up modems and fax machines, ask your parents what they were, and know that I hate you).

But my emotional responses to the good things far outweigh my feelings towards the bad. In fact, right now the emotional impact of the good things is utterly disproportionate to their size. Izzie rolled from her back to her stomach for the first time yesterday and me and Lizzie were leaping around the room like idiots, and even though today she’s doing it like a pro, we still get excited every time. This morning when she was laughing unstoppably as I blew raspberries on her belly, I could have been in heaven. And a few minutes ago when I went to check on her in her cot and she opened her eyes, smiled at me, and went immediately back to sleep, I could have stayed in that moment forever.

I am choked with emotion at the moment. I am overwhelmed. But not that anyone would know it.

People with Asperger’s do feel emotions just as strongly or more so than ‘regular’ people. We just don’t make such a big song and dance about it, is all…

See what I mean? Perfect.
See what I mean? Perfect.

Going Out

I’m going out for an hour. Phone, keys, wallet: check. Watch so I always know the time. Oven off, windows shut, door closed and locked. Route planned? Of course. Painkillers and diarrhoea medication just in case. Excuses ready so if someone invites me somewhere I can politely decline. Topics of conversation prepared: lovely weather we’re having; have you heard about the situation in wherever; I’m a new dad so forgive the stutter, it’s just tiredness. St. Christopher medallion, rosary and crucifix because they make me feel better even though I’m not religious. Smooth pebble in my pocket so I have something tactile I can fiddle with if I get stressed. Hat to hide beneath, beard to hide behind. I don’t need to wear glasses per se but it’s another barrier against the world so on they go. Hard-soled shoes because they make a reassuringly grown-up clip-clop sound when I walk. Shirt with collar so my neck doesn’t burn and my hairy back doesn’t show. Long sleeves rolled up so I can adjust the length to cover my wrists if I feel vulnerable. A Sheriff’s badge in my pocket so I can pretend like I’m a cowboy, and a lawman, and a thousand times more confident than I actually am.

Right, I’m ready to go.

As someone with Asperger’s Syndrome, I find going out incredibly stressful. Even if I’ve done something a thousand times, and know somewhere like the back of my hand, I am always anxious about what might happen, and if I’ll be able to cope with it, and how long before I can return to the safety of my home. I don’t know exactly what it is that I’m afraid of – I’m pretty sure aliens aren’t going to choose the New Forest as the spearhead of their invasion of Earth – but it never gets any easier. No matter where I go, it’s like I’m heading to the dentist for root canal surgery, even if it’s to buy a chocolate bar. Which, to be honest, happens so often it increases the frequency of my dental visits.

Not that you’d know that I struggle – they don’t call it the ‘hidden disability’ for nothing. John Lennon said, ‘Act the way you want to be and soon you are the way you act.’ Wise words, utter rubbish. I always act like I know what I’m doing. I never do.

But I don’t allow it to stop me. My motto has always been, ‘Feel the fear and do it anyway.’ So I do. But if I had a choice, I’d be a recluse and never go out.

I don’t have a choice. I have a baby.

I have vowed not to let my social anxieties get in the way of me being a dad and a partner, and that means going to parenting classes and baby groups, meeting other parents with infants, going out for coffee with family and friends, seeing midwives and health visitors, picnics, parties, and the endless rushing about to find the unexpected necessities of child care: bepanthem, infacol, fenugreek, variflow teats, and all kinds of other weird and wonderful things I’d never heard of six weeks ago.

Unfortunately, since I compensate for my social deficits, convoluted thought processes and sensory abnormalities by using my intellect, going out exhausts me. To make things worse, since having a breakdown in late 2006 my brain shuts down when stressed, leaving me drowsy and unable to see my way out of a glass corridor. And in addition, having spent the past fifteen years on antidepressants – my entire adult life – I spend every day fighting against the lethargy that comes as a side-effect of chemically damping down your central nervous system. I therefore have to manage my energy use, pace myself to keep mind and body functional – or at least, as functional as they ever get – and try to take on one stressful task a day.

At least, that was how I used to manage. Now when I hit the wall, I just have to keep running. And going out now is so much harder.

We’re going out for an hour. Baby? Check. Is she wearing enough clothing? Probably, but we’ll bring extras in case she gets cold. A sun hat and woolly hat for the vagaries of the weather. A blanket. And a backup sleepsuit for if she soils herself. And another backup sleepsuit for if she soils the backup. Dummy, dummy case, spare dummy in case she loses her dummy. That’s her sorted.

When did she last feed? Just now? Better make up a bottle of sterilised water to take, even though she’s not due a feed for three hours. And maybe a second bottle for if we’re unaccountably delayed. And two lots of formula. Plus some infacol. And three muslins: you can never have too many muslins.

How about nappies? Three, just in case. So let’s take five. Changing mat, baby wipes, bottom cream, Vaseline, kitchen roll, nappy bags and hand sanitising gel. Enough to cope with the worst explosion she could possibly manage.

Let’s add one more nappy, just in case.

Car seat, travel system base, carrycot and sling, so we have a choice as to how to move her. And another blanket. Rain cover, insect net, parasol. Now are we ready?

Let’s take the puppy – collar, harness, lead, whistle, treats, poo bags, water, bowl. All of this is in addition to the worries I have about going out anyway. So as you can see, my mind is a whirl of worries and problems and contingencies.

But you’d never know it.

Now where did I put my keys?

The Autistic Elephant in the Room

When you look at your baby it’s impossible not to wonder about inheritance. My daughter has her mother’s eyes, ears, nose, lips, hair and fingers. The only thing she seems to have inherited from the Drew family’s genetic legacy is the bum chin that I don’t even have. And despite being less than a month old, she still has more hair than me.

Luckily, her behaviour is more equally shared between us: she slurps her milk like her daddy, spills it down herself like her mummy, and is as noisy and uncoordinated as the both of us. I imagine the incontinence must come from elsewhere.

When you have autism, and so does your partner, the question of what your children might inherit from you takes on additional weight. While Lizzie and I were trying for a baby we were often asked if we were worried our child might be autistic. Whilst there’s no convincing evidence that autism runs in families – around one in twenty people with autism have siblings on the spectrum – anecdotally, many of us with Asperger’s can see autistic traits in at least one of our parents. So what if we create an autistic child?

As an individual, autism infuses the whole of my being. It is who I am, and my ways of thinking and feeling are inseparable from my condition. The same is true of Lizzie. I love her in spite of her autism, and because of it. We would not have achieved the things we have, in the ways we have, if we did not have Asperger’s Syndrome.

So would I want Izzie to be autistic? That’s an impossible question to answer. If I say no, it does a disservice to all the people I know with autism who would not be who they are without it. If I say yes, I am setting her up for a lifelong struggle in addition to the regular trials and tribulations that come with being human. In truth, whether she has it or not, it doesn’t matter at all. Aspergic or neurotypical, she will be uniquely herself and I will love her just the same and be there to support her regardless.

And yet I keep watching her for signs. You can’t tell below six months, apparently, but I thought the other day, ‘She makes good eye contact, she can’t be autistic.’ We gave her a bath for the first time last week. She sat in silence until we wet her head when she absolutely screamed the house down; I cannot abide anybody touching my head. But she loved her second bath. It’s just too early to tell.

I think it’s only natural for parents to want to wrap their children in cotton wool. Knowing the life I have led, spending a quarter of a century bouncing from misdiagnosis to misdiagnosis, doped up to the eyeballs on various mood stabilising and antidepressant medications, and suffering several breakdowns to boot, my family didn’t want me to have children. There was too much risk the child would be autistic. How would I cope? What if Social Services took her away? What if, what if, what if?

Deep down, I probably don’t want Izzie to have autism: I know firsthand just how hard it can be. But as I said to my parents, by protecting me from the bad things in life they’re also protecting me from the good. If I didn’t have a child, my life would be easier, but emptier; avoiding the risk of things going wrong means you avoid every opportunity to better your situation. And I wouldn’t change having Izzie for the world.

I have to remember this going forward. As a parent, I’d rather Izzie had an easier life and thus didn’t have autism. But perhaps autism would open up opportunities for her that she’d never have without it. It is not for me to say who she ought to become. I just have to make sure that, whatever issues Izzie might face in her life, she knows that her dad is behind her all the way.