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.

Five Months of Autistic Parenting, Part 1

Five months ago I started this blog with the question: what happens when a guy and a girl with Asperger’s Syndrome have a baby? I can answer that very simply: we have a gosh-darned gorgeous daughter. Beautiful, inquisitive, intelligent, happy and healthy. And it’s not just me that says that – health visitors, midwives, nurses, doctors, childcare specialists, social workers and swimming teachers all agree, and they have no reason to suck up to me so it must be true. Yay.

But of course, that’s only a fraction of the answer. How has our autism affected our parenting thus far? How has it affected our relationship? How have we compensated for or overcome our foibles and idiosyncrasies? What have we learned? These are the real meat of the answer, and I’ll do my best to cook them for you.

In this post, I’ll cover the small, humorous parts of autistic parenting. The next post will detail the larger, more serious problems of parenting with Asperger’s. So hang on in there if that’s what you’re looking for.

Firstly, I have to mention the mobile over Izzie’s cot because it drives me freaking insane. Why? Because you have to turn the mechanism ten-and-a-half times to wind it up fully. What kind of sadist designed that? Why can’t it be ten? Why ten-and-a-half? I’d even accept it if it went up to eleven (insert This Is Spinal Tap reference here). But leaving it with a half is plain belligerence. It’s practically warmongering. (For future designers, I would accept fifteen as well – multiples of five are always good).

This same sadist also made it run out of steam one solitary note from the end of its repetitive tune. Yes, one note. I lie awake listening to that simple tune on the baby monitor, round and round, knowing that soon it’ll stop short and leave me with a horrible sense of incompleteness. It’s like watching a firework shoot up into the sky and then splutter out without so much as a ‘fzzzzt‘.

The play mat bugs me too. All the tunes it plays are almost nursery rhymes, but not quite. Whether for copyright reasons or simple hatred of children, they’ve changed the last line of each one so you’re singing along and suddenly – boom – you can’t finish it! So Incy Wincy Spider never gets to climb up the spout again, the little boy who lives down the drain never gets his bag of black wool, and Frere Jacques doesn’t end with a ding, dang, dong. So annoying.

The monitor is a pain in the ass too. The first sound the baby makes switches it on, and then you’re treated to ten seconds of the microphone trying to pick up whatever white noise it can find. So, if the baby coughs, you don’t hear her cough – you hear the monitor come on, ten seconds of humming, buzzing static, and then it switches off again. She coughs again, the microphone comes back on. So you lie in bed listening to the monitor switching on and off without once hearing any baby noises. It drives me crazy.

But infinitely worse is when you can hear noise through it, specifically screaming. Izzie screams so loud, I imagine the neighbours wake up thinking, ‘Whose bloody baby is that?’ And when I say ‘neighbours’, I mean ‘the people in the next village’. It’s bad because I can hear Izzie screaming through the wall and I can hear her screaming in my ear through the monitor, so I get it in stereo.

And if that wasn’t bad enough, there’s a slight lag between the microphone picking up the sound and the speaker relaying it, so the screams are slightly out of sync. If you want to make a noise so unholy it could summon the devil, come to my bedroom around eight pm. Bring cake.

In truth, I’m not sure whether it’s my autism that makes these things bug me or if it would bug every parent. Certainly, my autism makes me pedantic and pernickety – I like completion, efficiency, accuracy, things working as they should and doing so logically – and whoever designs these things for babies seems to enjoy torturing parents like me. Grrrr.

Probably more directly related to autism is my dislike of slimy stuff. Autism is often accompanied by sensory issues, including a strong liking or disliking of particular textures, temperatures, smells, sights and sounds. One Easter at Sunday School when I was about eight we had to do egg-blowing, and I absolutely hated it – disgusting, squidgy raw egg dripping out the hole in the bottom of the shell. Yuck. The teacher lady, knowing I didn’t like mud, grass stains, getting dirty, told me I wasn’t like other boys – in hindsight she might have been suggesting I was gay. But she was right – I cannot stand slimy stuff.

Which means changing Izzie’s poopy nappies, especially when the crap has spilled out and soaked into her vest and top and trousers and I have to slip it off over her head and then there’s faeces in her hair, is particularly difficult. And when I get it on my hands I run to the bathroom screaming to wash my skin in scalding water with antibacterial soap and a wire brush.

Worse, though, is feeding the baby her solids. I’m not sure why they’re referred to as solids because, as everybody knows, baby food is sludge. Watery, slimy, smelly sludge that stains everything it comes into contact with.

Since babies learn about the world by watching our reactions, I’ve been told we have to act as though their food tastes lovely and there’s nothing we’d like to be doing more than feeding them this gunk, or else it might put them off. Now imagine you’re someone who is horrified by the feeling of sludge and who squeals if he gets mud on his Wellington boots. Yeah.

I spoon that gloopy, dripping, phlegm-like goo into Izzie’s mouth, force a smile onto my mouth as she dribbles it onto her hands then smears it over her face, try not to react as she grabs my forearm with her cold, slimy fingers and rubs that delightful substance into my skin. Mealtimes have become my least favourite activity by far – I’d rather clean out the cat litter, and that’s saying something.

And this fakery of enjoyment leads me onto the final and most profound observation on autistic parenting in this first part of the post. As someone with Asperger’s Syndrome, my life is one giant performance. My body language, facial expressions and tone of voice are not natural, but the result of study and conscious manipulation. I project confidence, contentment and cheerfulness when in truth I am filled with hidden insecurities and neuroses, discontentment and confusion, and I spend my life battling against my thoughts with a violence that nobody could ever guess at. How does this relate to parenting?

Since our babies look to us to learn how they’re supposed to react to new situations – should they be afraid, relaxed, excited, upset? – we have to act as though we know what we’re doing and everything’s fine and dandy. Well, having had a lifetime of practice hiding (masking) my problems, I’m an expert at making Izzie feel safe and secure. I might be terrified of setting foot outside my own front door, but Izzie will never see that, so she won’t grow up infected by my fear of the outside world.

So my autism is really a double-edged sword. Without it, I probably wouldn’t be a reclusive, hysterical pillock; with it, I’m able to pretend that I’m not a reclusive, hysterical pillock. What kind of parent does this make me?

The best that I can be.

Sense of Humour Bypass

The hardest thing about looking after a baby is not a single, groundbreaking event like a giant poo or a sudden explosive scream just as you’re settling down to dinner. It’s not a night without once closing your eyes or an entire day of crying. It’s subtler than that, the accumulation of lots of little events, weeks of broken sleep, and the general running down of your energy reserves, but when it comes, it’s no less impactive than a Mike Tyson slap round the face.

One day you wake up and find that things just aren’t funny anymore.

At five this morning I came downstairs with the baby to discover the dog had, in her infinite generosity, left me some chocolatey gifts all over the kitchen. And not crisp, tempered chocolates, but some kind of squidgy, runny mousse that has somehow stained the lino black as though we’ve spilt oil on the floor. Normally I’d think, ‘Wow, what a great anecdote to add to my ever-growing pile of gross-out fun!’ Instead, I cleaned it up with about half a roll of toilet paper, disinfected my hands, and set about feeding Izzie.

How dull.

I think the funk set in yesterday. I’m particularly good at what we in the autism community call ‘masking’. This is using your intellect to compensate for your condition and thereby mask your symptoms. It was the reason it took until I was 28 to receive a diagnosis. It’s not being dishonest, simply that we’ve learnt to hide the more ‘out there’ aspects of our autism in an attempt to fit in.

Unfortunately, the more tired I become, the less capable I am of consciously suppressing my autistic behaviours. Thus, if I’m not paying really close attention, I start taking everything literally; I lose the ability to understand when someone is joking; my social filter stops working; I start being pedantic and pernickety; I become paranoid because I can’t figure out why people are behaving the way they are; my mind starts to trip over the rapid flow of thoughts; and I act out my obsessive tendencies.

Yesterday we went out for coffee with some family and family friends. Because I pay close attention to every little detail in a social interaction to know when to speak, what to talk about, I don’t miss a trick, so I noticed that every time I spoke, two of the people around the table looked at one another, made a face, and laughed. I watched them while other people spoke, and nothing. I spoke, same response – they looked at one another, made a face, and laughed.

Thinking I might be paranoid, I went to the toilet, cleared my head, returned and tried again. Same thing. They were mocking me.

I couldn’t figure out what I was doing wrong. Was I speaking too loud? Off topic? In an odd register? Was I saying things inappropriate to the context? Sure, I was discussing how Izzie seems to have a hard nugget of poo in her rectum which backs up a sausage and a tin of mushy peas, but they had asked how she was doing and nobody was eating at the time. Then I was mentioning my orthodontic treatment as a teenager, how they wanted to break my jaw, bring it forward and insert a false chin to line up my teeth, but instead I opted for an agonising headbrace. I’m not sure what’s so amusing about that. One of them said they kept all of their child’s teeth and had them in a box – I said they should make them into a bracelet, but that was considered horrible. Well, you’re the one collecting teeth like a kleptomaniac tooth fairy!

Later, I had a row with Lizzie. As she is also autistic, she can similarly struggle to see things from another’s perspective i.e. mine. I didn’t feel she was giving me my due for doing the nights and allowing her to get a full night’s sleep, every night. In fact, I turned very much into a woman. ‘You just don’t understand how hard it is,’ I said in my whiniest voice. ‘You go out with your friends and come home and just watch TV. You don’t pay me any attention anymore. I feel like a single father. I just want a little consideration, and wah, wah, self-pitying wah.’

In the ensuing argument she grew defensive and said some things she shouldn’t have, and which I should have known not to take seriously, but I did. And all I could think during the argument was, ‘Why are you saying nothink? There isn’t a k in it, the word is nothing. And stop saying miwk, it’s milk. This Estuary English is entirely inappropriate for someone born and raised in Dorset!’

We made up, but when she went out in the evening with the baby, instead of having a rest I spent three hours obsessively looking up Spanish swear words on the internet. They mostly cast aspersions on the sexual behaviour of one’s mother. But I can think of better things I could have been doing instead.

So here we stand, or rather sit, with Izzie fixing me with her creepy unblinking gaze as she has done the past few hours. If she’d only cry, I’d be able to deal with it: why the hell is she just looking at me?

I need to regain my sense of humour. You lose that, next comes misery, self-harm and suicide. Or, at the very least, socks with sandals and an interest in snooker. And I need to find it fast: nobody can survive a baby without it.