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.

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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!

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?