The Non-Specific Anxiety of an Aspie

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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An Aspie Family Christmas

As a person with Asperger’s Syndrome, and a wife with the same, I have just experienced an incredibly stressful holiday season that has left my nerves in shreds and my marriage hanging on a knife-edge. For the avoidance of future issues, and to help out my fellow Aspies and their families, I thought I’d share what happened to me and offer some friendly advice on how to make things run more smoothly.

1. Keep the disruption short

My wife asked if we could spend a few days over Christmas with her sister and family, a four-hour drive away from home. As a supportive husband and father, of course I said yes. Two or three days at somebody else’s house is about my limit.

It wasn’t until two weeks before Christmas that I discovered my wife had actually arranged six days with her sister. I protested and tried to change it, only to be told by the wider family that it had already been arranged and changing it would be inconvenient. For them. The neurotypical ones.

Not wanting to cause a fuss, I loaded the car with everything including the kitchen sink (a toy for my daughter), and we set off.

In short, it was two rather pleasant days, two rather annoying days, and two days in which I wanted to push people off the quayside and throw stones at them as they struggled to stay afloat.

People with autism need space to recharge our batteries. I’m not talking simply physical space – we need mental space, a way to escape the slowly building pressures and strains of being forced into relentless and unpredictable social situations. Such a thing is generally impossible in an unfamiliar environment filled with somebody else’s stuff and driven by rules and routines different from your own.

Without this release, as time goes on you become more tired, more stressed, more prickly, more antisocial, less able to cope. And then you look and act like an asshole as you start to isolate yourself, avoid eye-contact, mumble two-word responses to questions, and refuse to participate, all as a way of surviving. And are told this isn’t the way you’re supposed to be behaving over Christmas. By neurotypical people. Whom you already warned that you’d get like this if you had to spend six days with them, but who chose to ignore it anyway.

So to the families of Aspies – think carefully about the duration of the holiday arrangements, and when your loved one is showing signs of stress, leave them alone. You might think that trying to include them in activities will bring them out of their funk, but in reality it’ll likely make things worse as they’ll feel pressurised and even more trapped than they already do.

2. Keep the numbers small

I had been informed that there would be a total of eight people at Christmas, including myself, my wife and my two kids, perhaps because it was known that I’d become anxious or refuse to go if this number was any higher. So imagine my surprise when a further seven people turned up, to take up every spare room in the house and leave me to feed the baby on a hard wooden chair at the dining room table every night.

I’ve mentioned many times before that autism is an exhausting disorder. When I’m with other people I spend inordinate amounts of mental energy consciously processing those things that most neurotypical people take for granted, namely how to have a conversation, when it’s my turn to speak, what I should talk about, how I should phrase things, where I should look, how much eye-contact I should make, how to interpret what they’re saying, reading their body language, regulating my posture and my proximity, working out relationships, the appropriate register, making sure I’m not talking too loudly or too soft, dominating the conversation or saying something inappropriate. I do all this to ‘pass’ for normal in a process called masking, and it is incredibly stressful, overwhelming and draining, and causes massive anxiety.

That’s with just one other person. Put me in a house with fourteen other people and I’m on overload. I can’t mentally process so many inputs and interactions, and something has to give – normally my peace of mind and my ability to function. I tend to come across at these times as arrogant and antisocial as I struggle to regulate what I say or how I should say it. My coping mechanism is to withdraw from the social encounter, deal with people one-to-one, minimise the number of simultaneous interactions – something that’s impossible in a crowd.

So if you want your Aspie family member to have a good time during holidays, less really is more.

3. If you make a plan, stick to it

It is well known – so well known, in fact, that it’s hardly worth mentioning – that people with autism hate change. I have discussed this many times and pointed out that it’s slightly more nuanced than that. My wife, for example, cannot handle change that involves the cancellation of something already arranged. I am the opposite – cancelling things doesn’t really bother me, but adding things in with little or no warning makes me freak out. The looseness of Christmas exposed my wife and I to both of these types of change, leading to great emotional distress for both of us.

Our second day was a case in point. It had long been arranged that everyone would go for a walk at the beach in the morning and in the afternoon someone would kindly look after our kids so my wife and I could head off to a coastal village to have a look around and spend some adult time together.

We left the house at 11.45 and arrived at the beach for 12.30, which by my reckoning, as a stickler for accuracy, is not morning. A minor point, perhaps, but incredibly frustrating for a person with autism. An hour’s walk in the wind and rain at the beach and I was more than ready to go back to the house, head off to the pretty village, and spend some quality time with my wife.

Unfortunately, somebody suddenly announced, ‘We’ve decided we’re all going to the pub for a drink.’ And that was that.

My wife was okay with this, as an additional activity is fine for her. I, on the other hand, panicked. Telling me I have to go into a stressful social situation – a dark, noisy, crowded pub at Christmas with people I don’t know very well – with barely a couple of minutes to get my head around it caused me massive unnecessary anxiety. For other people, going into a pub is probably a pleasant experience – for me, it is a torture that must be endured, and I need to mentally prepare myself for that. Unable to do so, I found it horrendous.

Unfortunately, staying at the pub over an hour, walking back to the car, driving back to the house, meant it was nearly dark by the time we got there. Then the person who said they would look after our kids had to prepare the food for dinner, thus we were unable to go to the coastal village. While I found this annoying because I’d been looking forward to it, my wife found this change of plan – the cancellation of something already arranged for no good reason – very upsetting and difficult to process.

Most of the people I know with Asperger’s suffer problems with anxiety, and changing plans tends to send our anxieties skyrocketing. Indeed, it can ruin our whole day as dealing with the psychological and emotional fallout lasts for hours. So if you must add or remove something from the schedule, make sure it’s for a good reason and not simply because of a sudden whim. A little sensitivity goes a long way to sparing your Aspie relatives a great deal of unnecessary anguish.

4. Don’t expect others to conform to your emotional standards

I lost count of the number of times I was told to cheer up, be happy, enjoy myself, join in, stop being a bah humbug, as though my emotional reactions were somehow ‘wrong’ because they differed from those of the people around me. Not only, therefore, was I expected to behave in a neurotypical manner and suppress my natural tendency towards a quiet, ordered life, I was also denied the right to feel my own perfectly normal emotions.

I was even told that, as my kids made it ‘magical’, I should feel magical. I asked precisely when an adjective had become an emotion and if such a feeling could be described to me, and therein lies the rub – people with autism often struggle to understand or appreciate their emotions. I certainly approach them from an intellectual viewpoint, and I find the concept of happiness, as it relates to me, very confusing.

To me, happiness isn’t about feeling good, it’s about not feeling bad. If I am ‘enjoying myself’ it means I feel absolutely nothing – the everpresent irritation, the tightness between my shoulder blades, that electrical storm of focused energy that buzzes around inside my head as I process, process, process, are not there. It doesn’t mean I’m smiling or jumping up and down. If I’m reading in a corner I’m quite possibly quietly content.

But like most people with Asperger’s, I won’t lie, and perhaps that’s why I stand out. I found Christmas extremely difficult, and when people asked how I was feeling, I told the truth. While everyone else was supposedly having ‘such a good time’, I spotted tears when they thought nobody was looking, heard whispered arguments from behind closed doors, noticed when formerly talkative people fell strangely silent and when couples sat beside one another without a single word passing between them beyond mildly passive-aggressive statements. So maybe I’m not so different after all.

I played with my kids and made sure they were happy, and I’m not sure why everyone was so bothered that I should display outward signs of pleasure for their own gratification. It seems to me less about making sure I’m enjoying myself and more about feeling threatened that somebody isn’t buying into the same sentimental bullshit that they are.

So don’t heap added pressure on your Aspie relatives by expecting them to feel a certain way – we’re already expected to behave in ways that don’t come naturally. Allow us our own emotions and to react exactly how we react, and we’ll do the same with you.

5. Turn off the gosh-darned music

As soon as the household arose, the radio went on. As it was rigged up throughout the house, the music would play in the kitchen, the dining room and the lounge, at quite a loud level, right up until bedtime. This was despite people coming and going, having conversations, playing games, making phone calls, watching videos on their handheld devices, and everything else that goes on in a house at Christmas.

My God, it was overwhelming. It was like a thousand tiny drills boring into your brain morning, noon and night. When you’ve heard Shane MacGowan slur his way through Fairytale of New York six times by lunch, you’re ready to agree with that line ‘Happy Christmas your arse, I pray God it’s our last.’

People with autism tend to have oddly-balanced sensory systems. Normally, we have very sensitive hearing and struggle to filter out one sound from another. Stick me in a house with fourteen other people over Christmas and I can hear three or four simultaneous conversations, making it very difficult to pay attention to my book and thus get the mental space that I need. Add music to the mix and my sensory system is utterly overwhelmed, especially when that music is loud.

So spare a thought for your autistic relatives over Christmas – a quiet space or some quiet time is certainly in keeping with the Christmas spirit of peace and goodwill to all men.

6. Don’t lecture from a position of ignorance

While walking towards the aforementioned (awful, awful) pub, I explained my reservations to a member of my wife’s family. ‘For me,’ I said, ‘going to a pub is the equivalent of sitting a really difficult exam. I discussed this last month with Luke Jackson, an autistic author, and we agreed that while for most neurotypical people going to the pub is relaxing, for those of us with autism it’s jolly hard work. You see, you go to work, get stressed, and then go to the pub to unwind. But while you’re unwinding, we’re becoming more and more wound up. Afterwards, you go home and go to bed because you’re relaxed. We go home more stressed than when we left, and then have to spend a few hours unwinding and de-stressing before we can be relaxed enough to go to bed, which is awfully tiring and has a knock-on effect for the following days. That’s what it is to have autism and why I’d rather we didn’t go to this pub.’

Quite clear, I thought, frank, easy to understand. So how did he respond (other than, ‘Cheer up, you miserable bugger.’)?

He said, ‘Oh, how ridiculous. No, I don’t believe that at all.’

‘Well, that’s the way it is.’

‘No, of course it’s not.’

And that’s the level of understanding I tend to get from my wife’s family. This is just one of multiple examples over the six days of me explaining to someone how my autism affects me, only to have them disagree with it. What? Why on earth would you belittle and undermine my understanding of my own condition and my own behaviour!?!

With all humility aside, I am an expert on Asperger’s Syndrome and how it affects me. I’m sought out to give speeches educating people about autism and I’ve written a well-received book about it, for Christ’s sake, one that’s sitting in the health section of every Waterstones in the UK. So why on earth would you dismiss what I say because you think you know best about a subject you have never studied, experienced or lived with?

Probably because there were some subsequent discussions about how ‘Asperger’s didn’t exist in my day,’ and how there are far too many people walking around using modern diagnoses as an excuse to cop out of life. Because that’s not condescending at all!

So if you want to keep cordial relations with your Aspie relatives, be sure to treat their expertise with the understanding and appreciation it deserves. Unless you’re a bigot, in which case we probably don’t want anything to do with you.

7. Bringing up the supposed links between MMR and autism isn’t going to win you any friends

 

I always find it strange that people dare bring this up. Without knowing very much about it, surely they know it’s a controversial conspiracy theory and therefore inappropriate to raise with people they don’t know from Adam. I don’t go up to somebody with cancer and say, ‘Hey, have you heard they have a cure for cancer, but they keep it hidden because they can make more money treating the disease than curing it?’ because that would be remarkably insensitive.

I have explained at length that MMR does not cause autism, and am armed with enough facts to shoot down any and all attempts to suggest otherwise. Unfortunately, this doesn’t stop people like my mother-in-law and various people in the house over Christmas telling me that my wife’s autism was caused by the MMR jab.

‘Andrew Wakefield was paid a hefty sum of money to find a link between MMR and autism so people could make compensation claims,’ I told them. ‘He was also marketing his own competing vaccine. This is what we call a conflict of interest and why his study has been completely discredited.’

‘He’s very popular in America.’

‘He had to go to America because he was struck off by the GMC for faking his research.’

‘Well, I still think he’s right.’

‘No, he’s not. The only study suggesting a link between MMR and autism had a sample size of twelve and was faked, whereas meta-analyses of studies featuring over 14.7 million kids – yes, 14.7 million – showed no statistically significant difference in rates of autism between those who’d had the vaccine and those who hadn’t.’

‘Well, I think that if you’re genetically predisposed towards autism, the shock of having three vaccines at once can trigger it.’

‘But where’s the evidence for that? If that was true, proportionately more people who’d had MMR would have autism than those who didn’t have the vaccine, and that’s not the case.’

‘She was different after she had the MMR. I know she was.’

And so I had to bite my tongue, or else I’d say something suitably cutting. Emotion trumps logic every time, and that’s damned annoying.

So don’t bring up this crap with your Aspie relatives during an already stressful time and then argue against facts with feelings. As I said, autism is my area of expertise, and trying to make out that you know more than me about it just makes you look ignorant.

8. And lastly, compromise is not a dirty word.

Nor are compassion, empathy or understanding. It seems odd that those of us with autism, who have clearly defined and specific needs, are the ones expected to fit in with everyone else. Yes, the ones who, because of their condition, have the least capacity to modify their behaviour to suit others are the ones who have to make the effort to adapt their behaviour to suit others. It doesn’t really strike one as fair, does it?

I’m not saying that the neurotypical side should make all the movement, but surely we could meet somewhere in the middle? It might make Christmas a little more enjoyable for all of us.

Asperger’s, Parenting and Unexpected Change

As is well-covered in the literature of autism, people with Asperger’s have a love of routines and struggle to cope with change. What I’ve been realising lately is that this bald statement covers up the nuances of what this means in practice, particularly when you’re the parent of a seven-month old.

And it can affect two people with AS in opposite ways.

I cannot handle change in terms of things being added. I need time to process and accept things that are coming up. Ever since I was a kid, I needed plenty of notice – at least a week – to get my head around a visit from relatives, a trip out somewhere, or anything out of the ordinary. If not, I tend to moan, kick up a fuss, say some nasty things I don’t really mean, and then go along with it anyway. But I don’t have much of a problem with things being cancelled anymore – indeed, the principal emotion is relief I don’t have to go through the effort of painting on my ‘public’ face and holding onto a fake smile for however many hours. I would be a hermit if I could get away with it.

Lizzie suffers the opposite extreme: she can’t handle change when it’s things being removed. She is mostly fine with things being added to the routine, especially if she’s the one doing the adding, but if something is cancelled her first response is to throw a tantrum. I liken it to a person walking along a road and finding a brick wall blocking their path. While other people would try to find a way around it, or else turn back, Lizzie bashes her head against it until one of them gives – sometimes the wall, but most often the head. Actually, scratch that – most often the heads of those around her.

Babies, as some of you are well aware and others can easily imagine, are unpredictable. Not only that, the world becomes unpredictable when you have them. Visitors arrive with little or no notice, longheld plans need to be dropped without warning, and you have to rush off to the doctor out of the blue. It’s impossible to say which of us struggles the most with the changes having a baby has brought to our lives, but I can guarantee that I suffer the most.

Now, when I say ‘suffer’, I’m not being melodramatic. I’m not talking about the discomfort I feel at friends, relatives and healthcare professionals clamouring for our time or pitching up on our doorstep unannounced. Nor am I talking about the disruption that sudden trips to the shops for some vital knick-knack cause to my quiet, ordered life. Fact is, the baby’s needs come first. I have accepted that. My needs, as an autistic individual, are immaterial next to hers. I have made that choice.

Unfortunately, Lizzie is either unwilling or, by dint of her condition, unable to make that choice. And so I genuinely suffer.

Like before Christmas when Izzie had a cold and I hadn’t slept for two days. Sunday morning I was so tired I couldn’t see straight, my back ached, I was covered in snot and dribble, and my throat felt like I’d been swallowing razor blades. I hadn’t had the chance to drink, eat, go to the bathroom, since the night before. When Lizzie arose, well-rested, and made herself some breakfast, I asked her to please look after the baby for an hour to give me a rest. But she had planned to go shopping, and, unable to alter her plans, she toddled off for more than three hours of non-essential retail therapy. I suffered.

Or like a couple of weeks ago when I got a migraine about teatime. Lizzie had planned to go out, so out she went. I couldn’t open my eyes more than slits as the light burned, I kept seeing spots of light dancing in front of my face, and my head throbbed with every beat of my heart like somebody was burying an axe in my skull. Every time I bent forward, it felt like my brain was being forced out of my eye-sockets. But I duly bathed the baby, gritting my teeth and shouting in pain whenever it became too much; hissed as I dried the baby; roared as I dressed her in nappy and sleepsuit; cried out as I placed her as gently as I could into the cot; snarled as I sang her to sleep. And then I collapsed, nauseous, into bed. I suffered.

Or the other week in the storms – our village turns into an island during heavy rain, and three years back I wrote off my car by driving into floodwaters (the single-most butt-puckering moment of my life!). So although we’d planned to take the baby to town, I refused point blank to expose her to the risk of getting stuck down some country lane surrounded by cows pretending to be ducks. The sensible thing. Unless you have autism and can’t change plans, in which case you kick off like a wild animal, say some truly awful things, and then go out anyway sans partner and baby. It was only later she admitted I was right, it had been too wet and downright risky to go out in that weather, with or without the baby.

Now, as this is mostly a positive, light-hearted blog, I’d like to say that whenever this happens I smile wryly, roll my eyes, say, ‘That’s Lizzie!’ to hoots of canned laughter, accept that it’s just her autism, and forgive and forget.

But nor is this a fairy tale.

There is a lingering resentment bubbling away under the surface as my needs, and Izzie’s needs, repeatedly come second to Lizzie’s inability to alter her plans for the greater good. Whether she can help it or not doesn’t matter – the resentment is there.

I have heard it said before that partnering a person with Asperger’s Syndrome is a form of abuse – not for the Aspie but the poor neurotypical saddled with their unreasonable behaviour. As someone with AS, I disagree with that, but let me be clear – people with Asperger’s can be cold, insensitive, selfish pricks at times. That’s the reality hiding behind the innocuous words, ‘people with Asperger’s have a love of routines and struggle to cope with change’.

Travels With Baby, Part 2: The Experience

If you imagine going on holiday with a baby is horrendously difficult, you’d be absolutely right. You’d also be quite spectacularly wrong. So work that one out.

By way of introduction, we went glamping on the Isle of Wight from Monday to Friday. Of course, you can call it glamping all you want, but a ‘canvas cottage’ is still a tent in a field buffeted by September winds and rattled by the first rains of autumn. Once your clothes are wet, they stay wet, the bed is made of foam on the floor, and at night the temperature drops to around twelve degrees.

I'm happy in my hat, daddy!
That’s okay, I’m warm enough, daddy!

As I have mentioned in a previous post (Out and About With Baby), the anxiety that goes hand-in-hand with Asperger’s Syndrome means just going to the shops by myself is a major ordeal. However, this doesn’t preclude the possibility of going away – since going out’s already so stressful, the anxiety from a holiday is a difference of kind rather than intensity, and if you’re going to struggle anyway, it makes a pleasant change doing it somewhere other than home.

For a similar reason, since looking after a baby is already so difficult, holidaying with one isn’t that much harder. At home your life revolves around sterilising bottles, making up feeds, changing nappies, and ensuring the little one is wearing clean clothes, is the right temperature, and you have enough spares of everything to stock your own branch of Mothercare. On holiday, the same applies. The main difference is that instead of popping to the supermarket, attending mother-and-baby groups, walking the dog or heading into town for a coffee, on holiday you’re visiting a stately home, taking part in an axe-throwing competition, playing crazy golf or searching for somewhere that does gluten-free cream teas (not common, I can tell you!).

Of course, there are other difficulties specific to travelling with a three-month-old. You leave home with the car piled up to the roof because you don’t know what the weather’s going to be like or how the baby will develop – one day she’s happy with the carry cot/pram, but the next she spends the whole day doing stomach crunches as she tries to sit up and you need to use the pushchair instead, or else she’ll have abs to die for. In addition to the travel system base unit, carry cot, pushchair and car seat, sunhoods and raincovers, parasol and umbrella, you have to add the steriliser, bottle warmer, changing bag, extras with which to refill the changing bag, baby’s suitcase containing warm weather and cold weather outfits, your partner’s suitcase, your backpack, a couple of rucksacks of food, drink, formula, a paperback (like you’ll ever find time to read it!), 6-way adapter plug, phone charger, Glo-egg. I have no idea how people can go away with two kids because we maxed out the available space with one.

Then there’s the fact you’re out and about for most of the day. When we go away, Lizzie and I tend to burn the candle at both ends, so to speak – Monday to Friday, and we checked out Alum Bay, Freshwater Bay and Ventnor, played crazy golf at Shanklin, enjoyed the arcades at Sandown, explored the WWII ruins at Culver Down, saw the windmill at Bembridge, walked the beaches at Whitecliff Bay and Ryde, visited Osborne House, East Cowes and Cowes, scoffed tasters at the Garlic Farm, shopped at Arreton Barns and Newport, navigated a hedge maze in Godshill, and still found time to go swimming twice with the baby, win a pub quiz and have a meal out. Such a heavy schedule means you need your sleep at night, and if the baby sleeps through as she started doing a few days before she went, then all is good.

Except the baby doesn’t sleep through. Because the routine has been altered, she alters with it. She knows things are different so she behaves differently. She doesn’t get tired when she usually does, doesn’t want to miss things, becomes overstimulated by all the sights and sounds and smells – ‘look, daddy, Queen Victoria’s bed, and a gold chandelier, and what sort of wax are they using to clean these marvellous wooden floors?’ So she keeps going, gets over-tired and grumpy, crashes suddenly early evening, and wakes at two am and five am. So holidaying with a baby means you’re horribly tired, and when you get home you really need another holiday.

Then there are the smaller practical considerations. Playing crazy golf, for example, is exceedingly awkward when you keep having to move the pushchair down staircases, over speed bumps and around lighthouses and windmills. You can’t play air hockey in an arcade with just the two of you, and nobody to watch the baby. Every time you get out of the car you have to debate whether to use the carry cot, pushchair, car seat or sling. And all the while, the clock is ticking between feeds, so you keep part of your brain focused on where you’ll be and whether there will be a cafe there where you can warm the bottle.

I think one of the hardest things about holidaying with a baby is that when she’s having an unsettled day, you’re stuck with her. At home you’d put her in her Moses Basket, rock her to sleep, perhaps go for a walk, put on some music or the television, and when all else fails you can take turns with your partner, allowing one of you a few moments of respite. On the last day we left the campsite at half ten and the ferry wasn’t until after seven. Izzie spent the whole day grizzling, crying, having mini-tantrums and demanding constant stimulation. This culminated in an utter refusal to sit in her car seat, and endless screaming when she did. Every time I tried to put her in the car seat she would straighten out and go stiff as a board, so I’d have to try and get her to bend at the waist, force her bottom into the seat, and hold her there with one hand while I attempted to put her straps on with the other. She might only be three months old but she knows what she wants and what she doesn’t, and boy is she strong!

But it’s not all bad. Going away with a baby didn’t stop us from doing most of the things we’d normally have done without her, and her smiles and chuckles made up for just about all the tears and screaming and inconveniences. Her fascination with every trivial, insignificant detail is a wonder to see and makes you look at things with new eyes. And you get to feel like a proper grown-up.

But not too adult to pass up a sundae that's bigger than your head!
But not too grown-up to pass on a sundae that’s bigger than your head!

All in all, going on holiday with a baby is hard work, but so is everything when you have a baby. It’s a slightly different experience from holidaying as a couple – you’re more focused on the baby and her welfare than on the things you’re actually doing – but by taking you away from the everyday grind, you can enjoy one another’s company and bond as a family without the usual stresses of home. That said, I’m in no hurry to repeat the experience unless it comes with a guarantee of four nights of uninterrupted sleep!

On Bodily Functions

The procedure for looking after a baby is nowhere near as difficult as you imagine. So long as you’re putting stuff in one end and clearing it up as it comes out the other, the rest mostly takes care of itself. I’ve stopped feeling for Izzie’s pulse every thirty seconds, and I sometimes go a whole hour without checking she’s still breathing. Providing she’s fed, winded and in a clean nappy, there’s not a lot that can go wrong.

So far, so simple. You’d think.

But putting stuff in one end and clearing it up as it comes out the other can be a friggin’ minefield. And when stuff comes out the end it’s meant to be going in, and stops coming out the other, it throws everything out of sync.

We were following a wonderfully modern, touchy-feely thing called ‘demand feeding’. It is exactly as it sounds: you feed the baby when she demands to be fed. Because babies aren’t machines. Sometimes they want a light snack, sometimes a five course dinner followed by an all-you-can-eat buffet. And sometimes they want to take it in their mouth just so they can spit it back out.

I think it’s a fundamentally decent principle. On my travels I met a dreadlocked German girl in a hostel/hippy commune above the ocean who lived by the rhythms of her body. She ate when she was hungry, slept when she was tired, and spent the rest of the time knitting beanie hats, as far as I could tell. She told me to get rid of my watch, listen to my body, because my body knew best and would never steer me wrong. She seemed so in tune with the vibrations of the world I thought I’d give it a try.

I lasted around three hours. Despite what Lizzie might tell you, my body doesn’t talk much, or perhaps I’ve lost that connection with my instinctive animal nature. So I’m all for Izzie keeping in touch with her body’s desires.

Her natural inclination is to cluster feed. That’s where, instead of leaving a few hours between feeds, she wants to feed, feed, feed, with only fifteen or twenty minutes between, and then sleep for five hours, before waking to feed again. Left to her own devices she’d cluster feed all morning, sleep all afternoon, cluster feed again from tea time to early evening, then settle into more regular feeds overnight. It might not be ideal for everyone, but it worked, and other than some griping in the evening, we had a very contented baby.

Except for the constipation. We give her laxatives morning and evening, but still her belly goes rock solid, she lifts her legs, sticks out her tongue and turns purple as she strains to squeeze out a thumb-sized nugget. It’s horrendous to watch, actually, and no matter how many times I put her on her back and do bicycle movements with her legs, it doesn’t seem to help.

The Health Visitor came a few days ago and told us that as we’re no longer breastfeeding, we shouldn’t be demand feeding anymore. Instead, we need to get her into more of a routine, feeding her three or four ounces of formula every three hours. She’ll feel more secure and it’ll help with the constipation too.

Pardon my French, but what utter, total bull-plop!

The last couple of days Izzie’s morphed into a wild beast that claws at our necks, rips glasses from faces, breaks necklaces and grabs collars while screaming at the top of her lungs, and she hasn’t pooped once. Because she doesn’t want to feed every three hours. Between each feed she’s unsettled and agitated. And at night she’s inconsolable.

Friday I fed her at ten and it took until one in the morning to settle her. She woke up three minutes later as it was time for her next feed. Afterwards, she was so unhappy it took till half-two and skin-to-skin for her to stop screaming, whereupon she burped and threw up the whole of the last feed over my bare chest. And because she’d vomited, she was now insatiably hungry again. Showering sticky milk vomit out of your armpits at three in the morning is sure to put you in a bad mood, especially when she’s up at five screaming again!

Last night was just as bad. I’m averaging three hours of broken sleep a night, and perhaps an hour during the day. They say you reach a point where if someone offered you £1000 or a full night’s sleep you’d take the sleep. There’s no contest: I’d take the money and use it to hire a nanny for a whole week of nights.

Since making this change to feeding, Izzie is miserable, Lizzie’s confidence has taken a massive leap backwards, and I’m on the verge of hallucinating about fluffy white pillows and bed linen. Perhaps, in the long term, getting Izzie into a routine is a good thing, but from where I’m sitting, the ‘chaos’ of her natural bodily rhythms was far easier than the vomit and tears of this artificial routine.

Early Empty Nest Crisis

I’m pretty sure I’ve lost myself somewhere along the way. I forget where I read it, but the Roman approach to parenting was to fit your life into the baby’s for the first year, and fit the baby’s life into yours thereafter. Actually, I might have made that up. The Romans don’t strike me as the most enlightened of parents: they didn’t even give girls first names.

Wherever it comes from, the idea sounds rather good in principle. However, I’m starting to realise that it’s neither practical nor particularly healthy.

Before the arrival of Izzie, Lizzie went to her dad’s farm every Monday and Friday evening for a meal. This is a routine she’s done for years and one that suits us all – she gets to return to her childhood home for a nice roast, her and her dad get special family time, and I get a few hours to myself to unwind. And having Asperger’s Syndrome, downtime to unwind is very important.

Using your intellect to compensate for your social deficits is, frankly, exhausting. What neurotypical people pick up intuitively as they grow up we have to consciously process and learn. Like a lot of people with AS, my behaviour is not natural but the result of careful study of books, imitation of the people around me, and endless practice conversations I carry out in my head every night when I go to bed. So whenever I meet up with people, I’m also thinking about how much eye contact I’m making, the volume and tone of my voice, the possible alternate interpretations of the words I’m using, and trying to decipher their body language and paralanguage and verbal language to make sure I’m understanding correctly, as well as whatever we happen to be doing, from eating a meal to playing crazy golf. One-on-one is okay, but the bigger the group, the more I have to work to keep functioning.

Trouble is, people rarely act in ways I’ve prepared for, so social situations can be incredibly stressful, before, during and after. For people with Asperger’s Syndrome, doing something that requires a close attention to detail enables us to relax, switch off the social part of our brain, and recharge our cognitive batteries for the next encounter. So after spending a couple of hours socialising, I need five or six hours to mentally recover. Otherwise I start to get a little irritable and I’m unable to effectively process all the information I’m picking up on.

Living with Lizzie, and now Izzie, I am constantly ‘on’. While for neurotypical people, sitting chatting with a guest over a cup of coffee might be relaxing, for me it is hard work, and there have been more guests to the house of late than in the past three years. So when Lizzie took Izzie to her dad’s this past Friday and Monday night, I should have seen it as a welcome chance to recover.

‘What a gift,’ people have said. ‘A night off: how lucky are you?’

Except, I don’t feel lucky. Normally I would do a jigsaw puzzle, build a model, make a list of all the bands I can think of starting with each letter of the alphabet, from Alice In Chains, Bush and Cold through to X-ecutioners, Yellowcard and Zwan (it gets harder down towards the tail end).

I stared at the wall for three hours.

My identity has become so bound up with being a dad that when I do get time to myself I have no idea what to do with it. I’m having an empty nest crisis after four weeks!

If, as the Romans (might have) said, you need to fit the baby into your life after a year, you need to have a life to fit it into. So I need to find myself again, and fast, because who knows how much harder it’ll be to remember who I am after twelve months of this?

Bursting the Baby Bubble

Despite my best efforts to forestall it – ignoring my diary, avoiding the newspaper and keeping the calendar on last month – time is marching inexorably onwards. Izzie has been registered and is now a member of a wider community to which I must soon return, and although I’m still swimming against the current, I can’t delay the inevitable much longer.

For the past week I’ve lived a wonderfully wholesome routine. I rise around 7.30 and prepare a bottle, and while Lizzie feeds Izzie I feed the animals, make breakfast, and have my sacred first coffee of the day. Then I load up the car and take Izzie and Ozzie for a walk in the forest. When I return, I sort out a few things, have lunch, deal with visitors, have a nap, and then all of us go for a walk around the village, which is the closest thing to heaven I can imagine.

After dinner I prepare the night feeds, Lizzie has a bath and goes to bed, I work on this blog or watch something while cuddling the baby, and head upstairs around 22.30. It generally takes till midnight to settle Izzie, with a couple of nappy changes and feeds overnight lasting around an hour each. This is my routine, and I love it.

People with Asperger’s Syndrome live by routines and struggle to cope with change. This is to be expected, given our rigid thinking and the difficulties we have processing new information, but Temple Grandin has an alternate theory. A remarkable woman with autism who designs slaughter houses, she believes that those of us on the spectrum are like prey animals with an overactive nervous system no longer useful in modern life. If a cow hears a sudden noise, it could be natural but it could be a predator, so it reacts. If it sees something new, it could be nothing or it could be the cause of its death, so it avoids it. The cow is happiest doing its usual thing of chewing cud and pooping pats because that keeps it safe.

People with autism are those cows. When we encounter anything new, different, unexpected, it sets off a fight or flight response disproportionate to the reality. Our bodies are flooded with adrenalin, increasing our stress levels and making it even more difficult to think clearly and cope with the situation. Hence we structure our lives to keep the unknown to a minimum and avoid stressful encounters.

Unfortunately, people with AS are also highly susceptible to forming obsessions, and when these combine with our love of routines and aversion to change, we can lose ourselves in a ‘perfect storm’ of self-imposed dissociative isolation.

I am in a baby bubble and I don’t want to come out.

Ten years ago I was part of a crew of fifty that sailed a tall ship across the Atlantic from the Canary Islands to the Caribbean. Those four weeks were some of the best of my life. Not because I was popular – I was unanimously voted the person most likely to be thrown overboard and they even printed me out a certificate that said as much – but because time was divided into a rigid, unchanging rotation of the watch system and the whole world existed in a space less than two-hundred feet long and thirty feet wide. I knew where I was meant to be, what I was meant to do, and who I was meant to do it with. I ate, worked, slept, in a fixed, tireless routine. And it suited me just fine.

As we neared our goal, after eighteen days with nothing between us and the horizon but whales, dolphins, flying fish and the occasional distant tanker, the rest of the crew looked forward to seeing land again. But I was so happy in my perfect bubble i wished there was no such thing as land and we could keep sailing forever. That first sight of Barbados, an ugly smudge between sea and sky, broke my heart.

The past three weeks my life has revolved around being the best dad and partner I can be. Even as I write this, Izzie is asleep in my arms with her mouth wide open, ‘catching flies’. The outside world has ceased to exist. I haven’t worked, paid any bills or checked my bank balance; I haven’t opened my post or returned my library books, and my emails remain unanswered. My life has become routine and obsession.

But there are smudges appearing on the horizon. If you lock the world out it has an insistent way of banging on the door until you have to let it in. I’m lucky in that I’m a (starving) writer so can work from home; if I had a regular job I’d have been back last week. But I can’t bring myself to send off another chapter to the publisher, another article to a magazine, write something that isn’t about Izzie and Lizzie and me. Not yet.

My baby bubble is going to burst and the real world is going to come flooding back in. But for today, at least, I have all that I need right here.

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I mean, why would I want anything other than these two darlings?