Speaking for Others with Autism

As someone who puts himself in the public eye for a cause, especially on the internet, I’m aware that this makes me a target for criticism. Mostly it’s to do with my opinion on MMR not causing autism (because it doesn’t), my belief that modern, science-based medicine is better than snake oil and superstition (because it is better), and my insistence that people with autism can and do make good parents (because we can and do – although not all of us). These criticisms I can easily brush aside.

Not all criticisms can or should be dismissed out of hand, however. There’s a pernicious idea among the younger generations (and Taylor Swift) that any criticism is trolling, and those who do it are simply ‘haters’ and bullies, which is a great way of avoiding personal responsibility and adopting the mantle of victimhood, but isn’t an enlightened way of viewing people whose opinions differ from your own. So I tend to give my critics the benefit of the doubt – that the criticism was sincerely meant, even though I might disagree with it – and I consider whether there is any merit to it, since this is how we grow as people.

My latest criticism has got me thinking, for despite being worded rather rudely and making some outlandish assumptions, it asks a pertinent question: by what right do I presume to speak for others on the autism spectrum?

I have to first point out that, while I have been told I am an ‘ambassador’ for the autism community, speaking for those who can’t speak for themselves, I have never actually claimed this myself. I recognise, however, that by putting myself out there as a speaker, author and blogger, my words and behaviours reflect upon people’s perceptions of autism, and this is not something that I take lightly. Indeed, I put a great deal of effort into getting it right, especially since I’m currently in a position to influence opinion.

On Wednesday, for example, at an autism conference in Belgium, I spoke to two-hundred delegates about what it’s like to live with autism and how I manage to cope. Also on the bill at Inservice Autisme 2017, in the small village of Oostmalle outside Antwerp, were two other Brits with autism: internationally-renowned opera singer Sophia Grech, and bestselling author of Freaks, Geeks and Asperger’s Syndrome Luke Jackson. So, what right do I have to speak at such an event?

My answer is: I have every right. I talk about what affects me and other people I have met with autism, what has helped me to cope and what has helped others. I point out some of the issues you might face living on the autism spectrum and how these might be overcome. As you don’t cease to be an individual when you’re diagnosed, I am up front about the fact that the things I say will apply to some people more than others, and while some coping strategies might work, they are certainly not for everyone. The important thing is to make sense of your own experience and find out what works for you.

I don’t think there’s anything particularly offensive about that.

I have also been told I shouldn’t speak for others with autism because I have a wife and children, a book and a blog, and I have worked in the past – that my achievement of various life goals makes me ‘atypical’ (i.e. too successful) and thus invalidates my experiences of autism. Inherent in this accusation is a very negative view of people on the autism spectrum, as though to qualify as autistic you must necessarily be unfulfilled, downtrodden and miserable, and this is an opinion that simply does not ring true for me.

I have met hundreds of people on the autism spectrum, and I continue to be amazed by their diversity. In just four months of public speaking I’ve spoken to many Aspies with wives and children, jobs and homes. After every speech I have given, people on the spectrum have come up to me and told me I could have been describing their lives and that what I said really resonated with them. To say that I am ‘atypical’ and cannot relate to others on the spectrum is therefore simply wrong.

It has also been assumed that, because I take a positive, hopeful view of the prospects for those of us on the spectrum, I shouldn’t speak for those who don’t have it as ‘easy’ as me, or the same ‘advantages’, as though I lead a blessed like free of strife and woe. I don’t think anything could be further from the truth. I could offer to show all my self-harming scars from years of struggle, but instead I’ll say what it took to attend the autism conference to show how ‘easy’ it was.

As a stay-at-home dad/unemployed guy with a two-year-old, a seven-week-old and an autistic wife who can’t be left alone with the kids for more than a couple of hours, attending the conference was tough. First, my wife was very abusive when she first found out about it in April because she was scared of me going away and her not being able to cope; despite organising for people to sit with her while I was away, and for her to stay at her mum’s, she remained hostile about it right up until the time I left, telling me I would likely be killed by terrorists in Belgium and that I didn’t love my family, etc., etc. This is what she does when she is feeling vulnerable – she goes on the attack.

As I tried and failed to book a flight to Belgium (I found it too difficult, for while I am capable of some things, I’m incapable of many others), I sought help from my dad, who agreed to drive me. He wanted to take the Channel Tunnel, but as I’ve been on it before and found it claustrophobic, I asked for us to take the ferry because I was worried I might have a panic attack.

On the day of the journey I was up at 3am with the baby and didn’t return to sleep. I left home at seven and it took more than twelve hours of travel to reach Oostmalle. Upon arrival, I was terrified, had an upset stomach, and struggled to keep my anxieties in check.

Entering the conference centre, I was confronted by 200 Dutch people eating dinner, drinking in the bar, and milling about in a noisy, dark environment. The organisers sought me out and directed me to the ‘English Corner’ where Sophia Grech sat with Luke Jackson, two titans of the autism community. So I dug deep, swallowed down my fears, and introduced myself.

After an hour of trying to hear people over the noise and hiding behind a bottle of Coke, my father drove me to the hotel. I rang home to check on things, to find my wife sobbing, the baby screaming, and my toddler crying down the phone, ‘Mummy very sad! Mummy very sad!’ Not easy.

After my dad went to sleep, I worked on my speech, as this was the first opportunity I’d had to be in a clear headspace – or as clear as it could be.

In the morning, I was really panicking. I had to take pills for my upset stomach, struggled to breathe, and wasn’t sure if I’d be able to keep my heart inside my ribcage. As we arrived I puffed out my cheeks, blew out my breath, and flapped my hands like a baby bird trying to take flight. And then I forced it all inwards and painted on my mask, my happy, confident face, and entered the fray.

The speech went well, very well, in fact. I really felt as though I made a difference, and the feedback afterwards showed that it went down a treat. For the next few hours I hung around with Luke and Sophia, and despite my fears, they were two of the coolest, nicest, most down-to-earth people you could hope to meet, with stories and experiences and ideas very similar to my own. In fact, to find myself in such agreement with others was both a rarity and a validation of my own views on autism.

The next day, exhausted and headachy and socially hungover, dwelling on every word I’d said in my speech and worrying if I’d done justice to the wider world of autism, I got up at six to leave at seven for the twelve hour journey home, whereupon I immediately resumed my parenting and caring roles.

I mention this to show that while things might be hard, those of us with autism can achieve amazing things if we have the courage and drive to confront our problems and refuse to let them hold us back. And if people still think I don’t understand what it is to struggle, that I don’t find things difficult enough to be a ‘proper’ Aspie, and that my life is too easy to be relatable, then it says more about them, I think, than it does me.

So why do I do it, if I find it so hard? I do it because I can do it, and I genuinely want to help. My life has been so hard I want to make things easier for others, and if sharing my experiences, opinions and coping strategies can make an autistic person’s life just a little bit easier, that’s what I’m going to do, regardless of whether critics think I’m entitled to or not.

I’ll leave you with the comments of a girl in my village who also has autism. She has struggled all her life but is now doing voluntary work and trying to make something of herself. She’s quite open about the fact that she isn’t articulate enough to describe what it’s like living on the spectrum and doesn’t have the confidence to speak in front of people anyway. Here is what she wrote on my Facebook page a few weeks ago:

‘You’re amazing and you’re doing a great job for everyone else who has autism like you and me and everyone else. I’m really proud of you.’

And the other day she wrote:

‘I and everyone else with autism is going to look up to you. You change people’s lives. Congratulations.’

Am I entitled to speak for others on the autism spectrum? I’ll leave you to decide.

 

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A Heart Made of Iron

When I was a kid, walking to middle school each day, the teenagers I passed on their way to the upper school seemed like giants. Tall, stubbled, confident and proud, their uniforms modified to reflect their unique personalities, there was nothing they couldn’t achieve. They were gorgeous, the closest I ever got to movie stars or comic-book heroes. At least, that was the impression of an insecure, anxiety-ridden social outcast with four eyes, goofy teeth and chronic asthma.

One day, I thought, when I’m that age, it’ll all come together, it’ll all make sense. I’ll be strong, I’ll be capable, I’ll be able to cope. Teenagers are made of iron.

A few years later I became a teenager, and lived as a pimply-faced, hormonal, anxiety-ridden social outcast. I saw adults with their jobs and pensions and mortgages and I thought that when I became an adult, it would all come together, it would all make sense, and I’d finally be able to cope. Adults, I thought, are made of iron.

By the time I was twenty-five, with many years of work and study behind me, I was very much aware that growing older wasn’t actually making me feel any stronger or more capable or better able to cope. As a depressive, anxiety-ridden social outcast, I looked at people with children and I thought, wow, look at them – they’re so strong, and capable and able to cope. And I figured that when I had kids, it would all come together, it would all make sense. Parents, after all, are made of iron.

As the father of a nineteen-month old, I can tell you for a fact that I am not made of iron. Quite the contrary, actually. I might give off the impression of competence, might fool people into thinking that I’m coping perfectly well, but the truth is that I’m just very good at faking it.

In reality, I’m a little tender at the moment. A couple of weeks ago, my precious little darling discovered how to scream, and the tantrums I thought we’d experienced before were actually mild disagreements because they are nothing like what she does now.

What was hitherto a very well-behaved child has turned into a monster. Half the time, I don’t know whether to give her a hug or call a freaking exorcist.

She screams and kicks and fights every time I try to change her nappy. At breakfast she screams because she wants my food, not hers, my coffee, not her water. She screams because I won’t take her for a walk every time she wants, she screams because we won’t have dawn-to-dusk Peppa Pig, she screams because I want to go to the toilet, she screams because she steals my nose and I’m not really fussed about getting it back, she screams because I make her wear a coat to go out in the cold, she screams because I put her in a seatbelt in the car, she screams because her hands and face are dirty but she screams when I wipe them clean, she screams when I make dinner, she screams because she can’t feed her dinner to the dog, she screams because I wash behind her ears, she screams because I get her out of the bath, she screams because I dry her hair, she screams because I kiss her goodnight and she screams because I turn out the light. Phew. It’s a lot of screaming.

What’s worse is that she has an upset stomach at the moment, precipitating a greater number of nappy changes than usual, each resulting in me getting kicked in the chin, stomach and testicles; she has a nappy rash, meaning nappy changes are even more violent as I fight what seems like a wild animal in order to put on the cream; and she has developed a severe aversion to bedtime that provokes at least three hours of screaming every night.

The nightly ritual was so easy just over a week ago. Night night mummy, night night doggy, up the stairs, brush teeth, into pyjamas, read a story, pick a book for bed, into the grow bag, big kiss, lights out, silence. Bliss.

The nightly ritual for the past eight days: ‘It’s bedtime, say goodnight to mummy.’ Huge screaming fit, tears, purple face, stamping feet, I go to pick her up and she runs away and then hisses and struggles and lashes out as I catch her, screams all the way up the stairs, mega-violence at the nappy change/pyjamas, very quiet when I read her the bedtime story, then mega screams and struggles as I put her to bed. Lights out causes a guttural, alien, hacking snarl-growl, like two demons having a fight, which goes on for around ten minutes, accompanied by thuds as she thrashes about in the cot, before descending into choking, spluttering, dying sounds that mean I have to go calm her down or else I’m afraid she’ll die. It takes a long time to calm her down once she’s worked herself up into that state, and as soon as I’ve got her quiet and breathing properly again, I go to put her down and the whole ordeal starts again.

I’ve sung to her, rocked her, read to her, let her come downstairs, ignored her, and always the same result – screaming that devolves into a choking, coughing total loss of all control, which stretches from her usual bedtime at seven until gone ten o’clock. And that’s before I mention the two or three times she’s up in the night nowadays. Where before, bedtime was a blessing, it has become a nightmare.

Eight days, three hours a night, is 24 solid hours of screaming tantrums in a week. It might not sound like a lot, but when those three hours of screaming follow a twelve-hour day of regular screaming fits, trust me, your whole world shrinks down to tears, red faces and an ever present sense of drowning.

My wife’s means of coping is to ignore it, to go out and forget about it and leave me to deal with it – after six pm, and for much of the day, I’m a single parent. I could switch off from it too, I suppose, but hours and hours and hours of my daughter screaming and crying and getting herself so upset that she’s choking is not something I can just rationalise away and get over. I feel horribly sensitive, bruised inside and out. I feel like I want to burst into tears. When I’m holding my screaming, struggling child I have to fight with every fibre of my being not to run away and hide. Just five minutes, I think to myself. Dear God, five minutes surely isn’t too much to ask?

I’m still waiting for the day it’ll all come together, it’ll all make sense, and I’ll be able to cope. Until then, I’ll just have to fake it. Until then I’ll use what little strength I have to pretend I’m made of iron. Unless someone could recommend a cheap nanny?

Autism and OCD: the Sacred Half-Banana

Thanks to the nature of autism, many of us with the condition have other psychological problems that are either caused by our autism or overlap with it. Combine the rigid, obsessional thought processes associated with autism with the anxiety and poor coping mechanisms that are often part and parcel of living with the condition, and you have the recipe for obsessive compulsion. So it is, then, that at times of stress and anxiety we can slip into full-blown obsessive compulsive behaviour and lose all sense of proportion, driving the people around us to despair.

And when I say ‘we’, I mean my wife Lizzie.

And by ‘people around us’, I mean me.

And instead of ‘being driven to despair’, a better metaphor would be that I am steaming uncontrollably towards a mid-Atlantic collision with an iceberg on a dark April evening. All because of half a freaking banana.

It all started a month ago when we returned from holiday. Every night after I’ve put Izzie to bed, Lizzie goes around the lounge and tidies up the baby’s toys. And given that Lizzie’s other big obsession right now is buying toys for the baby, we have an awful lot of them. Before going to Toys R Us to get something, I just check the massive pile of plastic bags stacked up in the corner of the study, and odds are we’ll already have at least two of what I’m considering buying.

Anyway, Lizzie’s particular inclination is that all the toys have to go back complete – if the toy food blender has six shapes that go inside it, then when it goes back on the toy shelf it needs to have six shapes inside it. Not five inside it and one in the box of building blocks, but all six inside it. This is non-negotiable and woe betide anybody who forgets.

So, a month ago we return from holiday, play with Izzie for a couple of hours, and then I put her to bed as usual. Lizzie tidies the lounge and – gasp – half the toy banana from the kitchen set is missing. We have both halves of the tomato, the pepper and the carrot, and the three parts of the cucumber, but only one half of the banana.

In the normal scheme of things, you might think this is minor. I thought so myself, it being a two-inch long piece of yellow plastic with a bit of Velcro stuck to it. Unfortunately, I hadn’t realised that in Lizzie’s mind it was the Holy Grail and it had just been stolen from us by person or persons unknown.

My reassurance that ‘it’ll turn up eventually’ didn’t cut the mustard. Before the holiday, the sacred banana had been complete, entire, unsullied – Izzie had only been in the lounge a couple of hours upon our return, thus it could not have gone very far. We had to find it.

Many hours after midnight, having overturned the sofas, emptied all the drawers and cupboards, removed the building blocks piece by piece from their boxes, turfed the dog out of her bed, checked behind the fridge, in the cat litter and around the driveway (as if!), I managed to persuade an increasingly irascible Lizzie to come to bed, we’d find it later. Problem solved – or so I thought.

The following day we repeated the exact same process, double and triple checking all the places we’d already double and triple checked the night before. I ended up checking through the bins, the nappy bin, the freezer, inside the guitars, stretching my hands into deep, dark crevices no mortal ever dared to delve. Still no banana.

Long after midnight, I managed to persuade Lizzie to come to bed, where she tossed and turned all night, no doubt dreaming of incompleteness.

It was two-thirds of the way through the third day of the search, after putting the baby to bed and moving the sofas for perhaps the eighth time, that I finally declared enough to be enough. Actually, I think what I might have said was something along the lines of, ‘I’m all out of f**ks to give about half a goddamned plastic banana! Don’t ever mention it to me again, I don’t care anymore, there’re another two plastic bananas in the corner of the study anyway, for God’s sake, let me live, why won’t you let me live!’ And suchlike and so forth.

Two days later, Lizzie stopped moving the furniture. Two days after that, she stopped talking about the banana.

But the stage was set. The anxiety was there. And it manifested itself late every evening with the words, ‘Have you seen…?’

Every evening for the past month, Lizzie has lost something and pressganged me into helping her find it. Mostly it’s Izzie’s hairclips, less than an inch long, or her dummies, transparent. Sometimes it’s pieces of paper, a scrap torn off the back of an envelope on which she has written the world’s most important information. Quite often it’s socks, which necessitate going through the sleeves of every item of clothing we own in case it’s become lodged inside in the wash. Occasionally it’s earrings, tiny, insignificant, nigh-invisible earrings. Every single evening, give or take.

I’ve been under the sofa so many times now, I can describe it better than the back of my hand. The inside of the dustbin no longer holds any mysteries. The sound of building blocks being removed from the box one at a time fills me with dread, and every time I hear the words, ‘Have you seen…?’ my blood chills within me. No, I haven’t seen it. But I guarantee we’re spending the next two hours searching for it.

There are two possibllities for explaining this behaviour. The first is that, because both sets of our parents were away, Lizzie has been anxious for the last month, and this anxiety has triggered an obsessive need to have control over the minutiae of our household to distract her from her own feelings of vulnerability. Once triggered by the missing banana, her mind became stuck in a loop of repetitive, obsessive behaviour, fostered by her rigid autistic way of thinking.

The second is that she’s faking all these disappearances and we’re still searching for that flipping plastic banana!

Which does, to be fair, remain something of a mystery…

The Fear

This week I encountered The Fear. He was on a holiday park in North Devon, of all places, roaming between the static caravans that sit on a hillside overlooking the bay. I’m pretty sure most parents meet him at some point, but this week was my turn.

I’ve been anxious about Izzie before, concerned about her safety, worried about the future, but it’s always been small scale, fantasy-land fear, the kind you get before the dentist or a particularly unpleasant meeting – you’d rather avoid it, but you know that if you have to face it, you’ll get through the discomfort because it’s not really actually all that bad. The Fear is another matter entirely.

It crept up on me unannounced. Everything was fine – a bright, crisp morning, fluffy white clouds scudding across an azure sky, the ocean stretching out below us towards the horizon. Lizzie was walking down the hill holding Izzie’s hand and while I locked up the caravan, my little girl looked over her shoulder at me, the breeze tousling her hair. Her face was a picture of innocent joy, her toothy smile so infectious as she waved at her daddy that in that moment I knew what it was to be loved and what true happiness felt like.

And an instant later I was struck by The Fear – the all-pervading, nausea-inducing, gut-wrenching, knee-weakening presentiment that I would lose her.

The closest I’ve come to this feeling before is when Izzie was around three months old. I went into her room in the middle of the night to check on her and she was so still and quiet I thought she was dead. My first thought – nay, instinct – was to travel to wherever she had gone, because she needed me and I couldn’t bear the thought of not being there for her. Short story even shorter, she wasn’t dead, she was just asleep – but the incident cleared up any lingering doubts about whether I truly believed in the hereafter.

The Fear wasn’t like this at all. It didn’t come from anything scary but from something joyous. It was as though upon reaching the heights of happiness, my body reacted and rebelled, viscerally and violently. Out of the clear blue sky I was filled with the most terrible and heartbreaking dread.

I’m not just talking about death, though that’s a given – cancer, meningitis, kidnap, murder, an accident, The Fear showed me it all – I’m talking as much about change. If I could have frozen that moment she waved at me with innocent joy, I would have done, because right now Izzie adores me – I’m the smartest, coolest, funniest, most-lovable chunk of a man she knows. But all that will change, and quickly too. My days as my daughter’s faultless hero are well and truly numbered.

I spent all that day with The Fear. Maybe, I thought, it’s here because I was talking to somebody about Seneca a few days ago, and his belief that your mind is the only thing you can rely on as everything else you can lose – friends, family, status, job, home, health, hair, all of it. Or maybe, I thought, I’m preoccupied with losing Izzie because police believe they might be days away from locating the body of Ben Needham, a British 21-month-old who went missing 25 years ago in Kos. Or perhaps it’s because I had the unfortunate experience of overhearing a fourteen-year-old girl and her mother screaming life-affirming statements at one another like, ‘I’ve effing had it with you,’ ‘you effing well ruin everything,’ and, ‘I wish you were effing dead!’

But that’s not it at all. If it was, The Fear would be with me all the time. No, it’s because in that moment of perfect happiness I realised my unbridled love for another person – and simultaneously my utter and total vulnerability. Izzie has me, heart and soul, and if anything happens to her, I would be destroyed. The Fear was a safety mechanism, a reality check, because I was walking too close to contentment, and believed my happiness to be immortal. Keep away from the sun, Icarus, or you’ll fall into the sea.

And that is the dilemma of parenting. You give yourself and hold nothing back, but in so doing you risk everything. Your fate is tied to that fragile, fickle bundle of cells you call your child. And the price for your joy is The Fear, cropping up when you least expect him, reminding you you’re dancing with a moonbeam that can never be contained.

But in the meantime, long live this moment.

AS, Children and Play

As a kid with Asperger’s Syndrome, albeit undiagnosed, I never understood how to play with others.

At playschool I’d wander straight through the middle of the toy farm the other kids had carefully set out, trampling the animals underfoot and kicking apart the barns without realising it, and unable to comprehend why they were cross with me.

When I tried to play with my brother, I couldn’t get into the fantasy the way he could – the toys were plastic, or wooden or cloth, and had no existence beyond my own control. I cared for them as objects, not as independent beings. They didn’t have feelings – they didn’t mind being thrown against the wall or stuffed under the sofa. Just so long as no one else touched them.

Because I didn’t share. What was mine was mine, and what was yours was yours until it was either mine, or I broke it so you couldn’t have it. As a young child, it’s safe to say I was an asshat.

And I didn’t know how to mix with my peers. We used to go camping almost every weekend, and every weekend we’d be sent to play with the other kids on the campsite. My brother would take it in his stride, marching up to complete strangers and joining them in football or climbing trees or riding bikes – I’d hide behind him and never know what to say or do.

When I tried to be funny, I came across as spiteful; when I wanted to be cool, I was condescending; and playfulness always turned into physical domination where my clumsiness and misunderstanding of appropriate behaviour turned me into a one-man wrecking ball – and that’s when it wasn’t deliberate. When it was, it was much worse. No wonder I couldn’t make any friends!

At eleven months old, Izzie loves playing with the other kids – and I am finding it like pulling teeth.

Every time she crawls towards another child, I watch her like a hawk and get so tense I’m lucky I don’t drive my fingernails through my palms. I see other parents just dump their kids and let them get on with it, but I perch on the edge of my seat ready to pull them apart at the slightest sign of aggression from either side. It’s the most uncomfortable thing I’ve experienced as a dad.

‘Why’s she doing that?’ I think as she pulls a brick out of another child’s hand. ‘Now why’s she doing that?’ I wonder as she passes it back. I’m fine when she plays by herself, but the second she starts to move towards another toddler I cringe and hope she stops before she reaches them because I don’t understand why she wants to play with them.

It’s my problem, I know. You’re supposed to let kids figure out the social rules for themselves, with a little guidance. I’m not going to stop her playing with other children, but damn I wish it was easier.

I’m terrified the other kids will hurt her. I’m terrified they’ll make her cry and she’ll sit there screaming and grow up to be a recluse like me. But more than that, I’m terrified she’ll do something to the other child, and she’s too young to understand the consequences of her actions, but everyone will look at me, and judge me, and realise what a bad dad I am, raising a little tearaway. And I’m worried they’re right, and a dad with AS won’t be able to provide for his child’s social education.

And the thing is, it’s not an idle fear – Izzie’s bloody strong for a toddler. While I was bathing her this evening she rammed her finger so far up my nose it took five pieces of toilet paper to staunch the flow of blood. What if she hits another child? Pulls their hair? Scratches them? Oh God, what would I do then?

The thing with autism is that you like to control your life. You minimise your exposure to stressful, unpredictable social situations in order to protect yourself. Izzie playing by herself in the lounge I can cope with fine as I understand it and can control the variables – the moment you introduce a second child, all control and predictability goes out the window.

But unfortunately, for Izzie’s sake, I have to expose myself to increasingly stressful, unpredictable social situations so she can learn to function as a socially active neurotypical child. I can’t allow my own hang-ups to hold her back.

I just need to learn how to relax when my little girl is learning how to play with others – or at the very least make sure my fingernails are cut so short I can’t do myself any serious damage!

AS, Anxiety and Baby Safety

It is rare to meet someone with AS who doesn’t have some kind of anxiety problem, and yet anxiety is not part of Asperger’s Syndrome. Rather, it seems the symptoms of Asperger’s – the social confusion, difficulties with understanding, need for routine and inability to cope with change – often lead us into situations we can’t cope with and encourage others to tease us, humiliate us and bully us, and it is a lifetime of such occurrences, repeatedly falling on our arses, that causes the anxiety.

Even then, some of us can be bigger worriers than others.

It turns out that I have a reputation amongst the NCT crowd of being something of a worrier and rather overprotective (shocking, I know!). As I’ve said before, in order to cope with our anxieties, people with Asperger’s plan their lives to avoid risk and the unpredictable. Having a baby means that you don’t just have to plan to keep yourself safe – you have to think of the baby too. And your anxieties about yourself pale into insignificance alongside your need to protect your baby.

Now eight-and-a-half months old, Izzie has reached that stage where she wants to be involved with everything. And by everything, I mean EVERYTHING. She wants to know what you’re doing, what your partner’s doing, what the dog’s doing, what the cat’s doing, what the people out the window are doing, what’s behind that sofa, what’s in that cupboard, can I open this drawer, why can’t I wear that hat, your glasses would look better if I bent them, what happens if I empty out your bag, and everything in between. And keeping her safe has become a nightmare.

The house is starting to resemble a fortress. There are barred gates across every doorway, a wooden fence blocking access to the TV, a hexagonal playpen that looks like a cage-fighting arena taking up half the lounge, and foam corner protectors uglying up most of the furniture. We’ve put down a soft mat as the floor was (probably) too hard, and I’ve even relented about bumpers and put protectors around each slat of the cot because she keeps falling and cracking her head against the bars. Every single night.

But it’s all to no avail. She’s determined to stand and walk before she’s ready, which means she falls often and falls hard. Worse, she doesn’t seem to care – if she’s standing up against the sofa and wants to get to the other, she throws herself down like an unemployed stuntman so she can crawl; if she has a toy, she thrashes it about until she’s knocked herself almost senseless; and within a few seconds of putting her in her cot you’ll hear an awful, heavy thud as she drives her head into the wood, deliberately and repeatedly, as if that’s how the cool kids get to sleep these days.

I’ve had to come to the conclusion that it’s impossible to safeguard her entirely. I can chase her around the room as she waddles about, and catch her if she falls backwards – I can’t stop those face-planting forward falls that squish her nose and knock her teeth back into her gums. Nor can I stop her crawling over her wooden blocks, getting her fingers caught when she bashes two toys together, headbutting my knees or suddenly slamming her face into my forehead – no matter what precautions you take, she’s got you.

I was sitting on the sofa the other day when the lamp started sliding across the sideboard all by itself. Did we have a ghost? I jumped up to find Izzie had pulled herself to her feet, squeezed into the gap down the side of the dresser, reached up to the top and, even though it was out of sight, found the lead with her fingertips and was slowly preparing to pull the whole, heavy ceramic base of the lamp down on her head. This is just one example out of a hundred. Unless we have no phones, lights, chairs, sideboards, tables, floors, people in the room – anything, in fact – we will never eliminate risk.

All of this means the bruise above her eye the size and shape of a thumbprint has been joined by two on her temple the size of peanuts and one right in the middle of her forehead as big as an egg. And she’s into scratching herself too. We take her out in public, all black and blue and red, I’m terrified we’re going to get arrested for using her as a football. ‘It happened when she fell,’ I tell family and friends, and even I think I sound guilty.

The same is true of weaning. I freaking hate feeding her these days. Before, it was milk – pure, wholesome, liquidy milk. Now, it’s all kinds of food, food with bits, with lumps, with chunks. It’s bread, it’s meat, it’s pasta, it’s fruit. So at least once a meal she’ll laugh, or try to talk, or simply swallow something too big, and she’ll start to choke. Totally normal, apparently, totally natural, since she’s learning new textures and tastes, but as her face turns purple and her eyes bulge and tears spurt out of them, I have to fight down the panic because I don’t want to alarm her any more than she already is. So I’m a nervous wreck before we even begin, waiting for that unexpected moment she’ll suddenly start choking, and – something particularly hard for me – there is nothing I can do to prevent it. We can’t keep her on yoghurt and soup all her life, but good gosh I wish we could!

It’s a hard reality to accept but one that I guess all parents eventually have to – we cannot protect our children from the world or from themselves. We can try our best to ensure they’re kept safe, in a protected environment that minimises the risk factors, and be there to pick them back up, but ultimately they’re going to get bumps and bruises, fall out of trees, start dating that boy you don’t like just to piss you off – the trick is not to make a big deal out of it and hope that the damage is never too great. Otherwise you’ll make them neurotic and yourself a basket case, or worse – you’ll turn them into you.

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?