Asperger’s, Parenting and Negativity

When you become a parent you make a decision: you decide you’re going to sacrifice your own needs in order to look after those of another. You commit to giving up your time, energy, sleep and even your life, if necessary, so that your child is kept healthy, happy and safe. And you swear you will do everything in your power to create a well-adjusted, confident, stable and successful human being.

When you have Asperger’s Syndrome, you have to make a further decision: I’m not going to let my autism stop me being a good parent, come what may.

There are a number of natural deficits that afflict parents with Asperger’s. We love routines and struggle to cope with change, two characteristics that don’t really lend themselves to looking after an unpredictable ball of poop and pee. Our rigid thinking and difficulties processing information impinge upon our ability to do the multitasking required for effective parenting. Problems with motor clumsiness make baby handling somewhat awkward, while sensory issues such as hypersensitive smell and hearing make nappy-changing a horrific burden. But none of these are insurmountable.

When I encounter sudden change, I grit my teeth and bear it, fight down the anxiety that rips through my insides, and recover later, after the baby has gone to bed. Since I get easily distracted and can’t multitask, all I do when watching the baby is watch the baby – I can’t watch TV, read a book, enjoy a coffee or even go to the toilet, and when we’re out and about I pay scant attention to the outside world, but that is the price I pay, and the decision I’ve made, to keep her safe. And when I change her nappy I hold down the disgust and queasiness, smile as though everything is fine, and get on with the job at hand.

More difficult for the Aspergic parent is understanding and meeting your child’s needs. Given our difficulties interpreting social communication and problems understanding how other people think and feel, we can be oblivious to our child’s emotional state and struggle to give appropriate support. Since we often have limited social needs we can fail to appreciate our child’s social needs and thanks to social phobia fail to provide for them. And because we struggle to understand our emotions we can have difficulties regulating our behaviour in front of our children.

Again, none of these problems are insurmountable. Just because we do not intuitively ‘get’ our children the way a neurotypical parent might doesn’t mean we can’t consciously learn to meet their needs. I get advice from other parents, books and the internet to understand my daughter’s developmental needs and how to meet them. I study her noises and facial expressions to work out what they might mean. I take her to social events, the fair, the park, to give her the opportunity to mix with other children. I know she’s looking to me for reassurance so I make sure I smile and act confident even though inside I’m on the verge of panic. Going forward, I will encourage her to communicate her needs and feelings in an open and honest fashion, and I will discuss them and adapt my behaviour to meet them.

My life as a parent with Asperger’s is all about lists, and study, and systems, and hard-thinking. I compensate for my natural deficits by using my intellect. Since I spent 28-years without a diagnosis masking my condition, I hide my problems from my daughter and refuse to let them stop me from being a good parent. It is hard, it is thankless, and it is painful, but it is the decision I chose to make when I had a child.

And it is working. At thirteen months my daughter is a bubbly, happy, confident, outgoing, highly sociable little girl who only wants to run around the park playing with children she’s never met and get involved in anything and everything that’s going on around her. She is in every way the very model of a healthy, successful human being despite having two parents on the autism spectrum.

So you can imagine my anger and disgust when, upon entering ‘parenting’ and ‘Asperger’s’ into a search engine, I was confronted by pages and pages of horrendous, prejudiced, discriminatory anti-Aspie bile.

There is a paper by a psychologist calling for parents with AS to be labelled with a ‘parenting disability’. There is an article saying an Aspergic parent raising a neurotypical child is ‘the definition of abuse’. Everywhere you look there are articles and opinion pieces about how bad Aspergic people are at parenting, and how all children of autistic parents suffer long-term psychological damage, depression and low self-esteem. It is inevitable, apparently, that our children will suffer lifelong difficulties as we are such failures as human beings.

Autistic parents, so says the rhetoric, are inhuman unfeeling monsters who are incapable of expressing love or meeting any of their child’s needs; we should have our children closely monitored and/or removed for their own welfare; and we place a massive burden on child services and mental health teams. And even if we think we’re doing a good job, we’re actually not – we simply don’t have the insight or self-awareness to realise we’re crap, abusive, emotionally neglectful parents. While it is rarely explicitly expressed, it’s hard not to get the impression that a lot of people out there think that people such as myself should not be allowed to procreate. As parents, people with AS are the proverbial lepers.

As a parent with Asperger’s, it’s hard not to be affected by such bigoted negativity. It’s hard not to let that negativity seep inside and colour your parenting experience. But the fact is, they’re wrong, so, so wrong.

True, some people with Asperger’s Syndrome will make terrible parents, just as many neurotypical parents shouldn’t have a dog, let alone a child. But because I know I have Asperger’s Syndrome, it makes me a better parent because I am constantly assessing and evaluating my behaviour and consciously adapting it to better meet my daughter’s needs. Knowing kids need to feel love and Aspergic people are rarely demonstrative, I make sure to express my love in demonstrative ways. Knowing children need to develop their self-esteem and Aspergic people are too honest, when she brings home a picture from school that I think is rubbish I will tell her how good it is and put it on the fridge. I will study, and sacrifice, and tirelessly toil to be the best damned parent I can possibly be because that is the choice I have made.

And I will fight for the rights of any other Aspergic parent who makes the same choice, because saying that people with AS are incapable of being good parents is the real ‘definition of abuse’. 

AS, Parenting and Mental Exhaustion

Now that Izzie is crawling, standing, climbing and talking (albeit gibberish), people keep telling me how this is the best, most exciting, and most rewarding time of raising a baby. Those first months where she slept and cuddled and needed, needed, needed were boring, challenging, the hardest slog, but now that she’s interactive and starting to give something back, you can enjoy it. Now it gets interesting.

I have to admit, I feel the opposite.

It’s my belief that Asperger’s Syndrome is at root a problem with information processing. We have no problem taking in vast quantities of information, but our brains are so structured that we compartmentalize this data. It’s in trying to interpret it – to work out how it relates to everything else and what it all means – that we struggle.

I can explain it much better using an orange.

Imagine that each piece of information that goes into making a concept, activity or understanding about the world is a single segment of an orange. A neurotypical person only needs to see one segment, or at the very most two or three, in order to realise they’re parts of an orange, and since they know what an orange looks like, they can construct the orange – the concept, the understanding – without needing to find the rest of the segments or even really thinking about it.

Not so if you have Asperger’s.

You get a piece of information – a segment – and you store it in one part of your mind. Then you find another piece, and even though it relates to the first and is part of the same orange, you don’t have the faculties to realise this, so you store it in a totally different part of your mind. And you keep going like that, and even when you have all the pieces, and you’ve seen an orange before, you can’t work out what it’s meant to look like, so you cram these segments together, trying to work out how they fit, and throwing some things out, and adding bits that aren’t supposed to be there, and ultimately making something you’re happy with but that, to anybody else, looks nothing like an orange.

Thus, in order to compensate for our deficits and function on a daily basis, people with Asperger’s Syndrome have to expend huge amounts of mental energy. What comes naturally to so many neurotypical people, we have to consciously process, and like a computer, we only have a limited amount of processing power.

This is why socialising is so exhausting. Interpreting what people are saying, how they’re saying it, what they mean, in what way they mean it, what you should say, what you shouldn’t say, when you should say it, is your voice too loud, too quiet, do they understand you, are you standing too close, are you making too much eye-contact or not enough, what’s the relationship between this person and that person, how are you coming across, and what does it all mean, while trying not to get distracted by music, other conversations, traffic noise, light bulbs, their deodorant, the way the sun is reflecting off someone’s forehead, and the fact their DVD collection isn’t alphabetized, is excruciating. It’s no wonder we so often become overwhelmed and suffer burnout. And why we need extended down time to recover.

So how does this relate to being a dad?

I liken it to the old people’s home I used to work in. Those upstairs were frail and grumpy, but were compos mentis and had simple needs – toileting, bathing, dressing, eating and sleeping. After working seventeen straight hours without a break, I’d be physically exhausted but mentally quite alert. Other than latent old-fashioned racism (‘That dark girl has stolen my pearls.’ ‘You’re wearing them, Gladys.’), it was a breeze.

Downstairs, behind code-locked doors, were the Alzheimer’s and dementia residents. Most of them were able-bodied, and so working with them wasn’t nearly as physically tiring as working upstairs. Mentally, however, it was like being hit with a crowbar.

You’d have a suddenly-naked ninety-year-old man charge at you with his willy in his hand, turn around to find a woman trying to remove non-existent make-up with cutlery. You’d try to console a former naval officer sobbing over a cat that had been dead for fifty years, before bathing a woman who screamed at the top of her lungs all day long. You ever tried shaving a man who’s spitting at you? Fighting off the advances of a woman who thinks you’re her long lost lover back from the dead?

I’d go home after a shift downstairs and my back wouldn’t ache, my feet wouldn’t hurt, and I’d be capable of running a marathon, but good golly, my brain would be mush. Trying to process the assault of noise, colour, emotion, attempts at communication – it left me useless for the whole night and into the next day.

And that’s how it is with Izzie.

When she was little, it was physically demanding but mentally easy – she spent half the time asleep and the rest of it feeding or pooping. Her needs were simple, her sounds were few and explicable, it was easy to know what she wanted and to cater to that. It was like she was an extension of myself and I loved it, because I was good at it and it worked.

Now, however, she has morphed into a person, entire of herself and completely separate from me. Since my problems revolve around interactivity, having a suddenly very interactive child is something I’m struggling with. She’s become incredibly complicated. It’s like I’m behind those code-locked doors again, downstairs in the dark.

These days, Izzie is in near-constant motion from six in the morning till gone seven at night. Instead of cuddles and sleep, she’s climbing on the furniture, chasing after the dog, throwing tantrums if you take the TV remote off her, fighting you when you change her nappy. Mealtimes are complicated affairs where you try to get enough nutrients and fluid into her while getting it spat and flung back into your face. You can’t take your eyes off her for thirty seconds or she’s unplugging the telephone or ripping the pages out of your favourite book. And no matter what you do, it seems to be wrong.

She’s learning at an astronomical rate, discovering new textures, tastes, sounds, skills, vocalizations, facial expressions. She laughs, she shouts, she reaches for you, she pulls your hair, and you spend all day right there with her, trying to keep up. And every new texture, taste, sound, skill, vocalization and facial expression, I’m trying to interpret it, trying to process it, trying not to get left behind. Am I doing it right, how do I keep her safe, what does she want, what does she need, why’s she doing that, is this right, what should I do, has she eaten enough, I’ve got to catch her if she falls, what rules should I make for this, and that, and the other, and what does it all mean?

And that’s before we factor in visits from family and friends, health visitors, nursery nurses, social workers, care coordinators and support workers, and the everyday trivia of shopping, cooking, cleaning, writing, working, which create a whole bunch of processing issues of their own.

Mentally, I’m mush.

This interactive stage, before babies can express themselves but after they have a need to do so, is by far the hardest part of parenting I’ve experienced. Lizzie is loving it, but I can’t help counting down the hours until Izzie goes to bed, and that’s making me feel like a crap dad, especially as I keep being told that this is meant to be such an amazing period. By the time I’ve got Izzie down, I’m not fit for anything in the evening but staring numbly into space, my brain trying to make oranges out of everything I’ve seen and done. Throw in a touch of SAD and I can feel the Black Dog circling ever closer to me again.

I have an adorable daughter and I seem to be doing a good job of raising her. Physically, it’s easier than ever. But oh my gosh I’m finding it mentally exhausting at the moment.

Perhaps this is just something I’ll have to get used to.