AS, Children and Play

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Advertisements

AS, Anxiety and Baby Safety

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

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

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

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

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

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

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

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

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

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

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

Going Out

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

Right, I’m ready to go.

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

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

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

I don’t have a choice. I have a baby.

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

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

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

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

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

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

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

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

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

But you’d never know it.

Now where did I put my keys?