Children with autism become adults with autism

There is a deductive argument so straightforward and sound that all intelligent, educated, free-thinking people should be able to grasp it with ease. It’s so patently obvious that I shouldn’t even need to write it down because we all just know it to be true. I will, however, because it is necessary for what follows.

  1. Autism is incurable.
  2. Children grow up.
  3. Therefore, children with autism become adults with autism.

I mean, it couldn’t get much simpler than that. You’d have to be a philosophical contortionist to somehow argue against it.

And yet, looking at the way that autism is treated, represented, categorised, theorised and mythologised, you’d be forgiven for thinking autism is a childhood disorder that disappears on your eighteenth birthday. You step up to your birthday cake a person with autism, and as you blow out the candles, lo and behold, you’re neurotypical! Hallelujah!

It strikes me as bizarre that even though we all know that children with autism become adults with autism, the latter group is virtually invisible. From the services available, to funding, to treatment, to research, to specialists, to TV programmes, to books, to websites, to expertise, it’s all heavily skewed towards children with the condition. Much of it simply vanishes as soon as a person reaches their majority, as though nobody realised that these children with needs would one day become adults with those same needs that are now, sadly, unsupported.

Go look at 100 books on autism, you’ll find that around 99 of them have children or childlike images on the cover, and contain chapters dealing with school and adolescence and how you can help your child make friends. Research the statistics on autism and you’ll find statements like, ‘1 in 88 children has autism’, when surely they mean 1 in 88 people has autism? Then try and find academic studies on autism and sex or on parents with autism and you’ll find it pretty damned hard, because the experts don’t seem to realise that autism extends beyond the first eighteen years.

When, as an adult, I spent a decade seeing psychiatrists and psychologists under the Mental Health Team, not one of them ever brought up the possibility I might have autism. When I asked to be seen by an autism specialist, I discovered there was one person qualified to diagnose adults in the whole of Dorset – a county with a population of almost 800,000 people – and she could only devote one day a week to this. When I was finally diagnosed with autism at 28 (and immediately discharged by the Mental Health Team because ‘autism isn’t a mental illness’), I went to the Learning Disabilities Team, to be told that all of their support services were for children with autism, and they had neither the funding nor the expertise to cater to adults. So that was that.

But the greatest irony, and to me the greatest illustration of this very real problem, is the book I had published last month. Now, I am incredibly grateful that it has been published and I’m gratified to learn it is helping people, but I wrote it specifically to address a shortfall in the autism literature, namely, people diagnosed with autism as adults. The book is entitled An Adult With an Autism Diagnosis. It is written for adults with autism, about adults with autism by an adult with autism. So where does it appear on Amazon?

Here’s the directory information: Health, Family & Lifestyle > Pregnancy & Childcare > Children’s Health & Nutrition.

Ever get the feeling you don’t exist?

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Parenting and writing: more similar than you might think

Having had my first book published last month, I can now call myself a writer. Of course, I could have called myself a writer at any point over the past twenty-five years, since that’s how long I’ve been at it, but it always felt a little pretentious, given I have barely made a penny from it. It would be like a postman, upon being asked what he does, saying, ‘I’m a fisherman,’ because at weekends he takes a rod and some maggots to his local river and casts about for fish. While he might want to be known for doing that, it’s not exactly an accurate answer, is it?

And yet, throughout my writing life, I have met no end of people who proudly introduce themselves as writers, authors, novelists, poets and even philosophers, despite never having had anything in print. On top of this, there is a really weird thing that many of the writers I’ve met have in common: none of them actually write.

I’m always amazed by how many people pack up their laptop and go to a busy cafe, park or pub in order to write in a loud, bustling and incredibly public place. I’ve had long conversations with writers about their writing, their ideas, their characters, their themes, the depths of their literary ambitions, and how if only someone took a chance on them, they’d shake up the publishing world – all without ever having written anything. I even had a tutor on a creative writing course I was taking tell me she wanted to write a novel one day. I didn’t have the heart to tell her I’d already written eight. What’s stopping you?

It seems to me that while many writers love being writers, they don’t particularly like doing writing.

That’s understandable – writing is hard. All the other aspects of the craft – planning, plotting, themes, character biographies, working out the front cover and the blurb, giving imaginary interviews in front of the mirror and picturing your book at the top of the bestseller list – those are the easy parts, the fun parts, the parts you can do with an audience. The hard part is sitting down and actually writing, day after day, week after week, churning out tens of thousands of words, editing, rewriting, reworking. Most of that stuff you can’t do in public – you do it in private, in loneliness, in blood, sweat and tears. The only publicity is the book itself, because nobody is meant to see the struggle that goes into it.

The fact is, writers write. They don’t sit around pontificating about their ‘art’ all day, worrying about which jacket makes them look the most writer-ly, or which is the best place to write where they’ll be seen and acknowledged. They knuckle down and work. They don’t wait for inspiration to hit them. They cram it in whenever and wherever they can. Some days it’s easy, some days it’s hard. Some days you have no idea if you’re doing it right and if you’re wasting your life. But you persevere. You keep going in the faith that you’re on the right path and that tomorrow it’ll all click. You keep going not because you want to, but because you need to, because it’s in you and it’s who you are.

In this way, it’s a lot like being a parent.

It’s very easy to get caught up in the superficial aspects of parenting. You take the little one to a cafe and she sits there all well-behaved and you play a game and she laughs and an old couple comes over and tells you what a great parent you are – I love that stuff. It happens to me quite often, in fact – I can’t go a week without a stranger coming up to me and telling me how awesome I am, which makes me walk around all day with a massive head, going, ‘Oh yeah, I’m the shiznit.’

Trouble is, sitting in a cafe playing with a well-behaved child as you bask in the adoration of the public is not all that different from the writer who sits in the pub and delights in telling people about the books he intends to write when his writing credits to date total zero. You’re wallowing in the glory of being a parent, without actually doing any parenting. Because parenting, like writing, can be bloody difficult.

A good parent, just like the good writer, does most of their work unseen. They do it day in, day out, and all through the night, despite the aching spine, the headaches and the tiredness. They face the monotony, the boredom and the isolation with stoic fortitude. They work, work, work, because they have no choice but to do so. They get pushed to the edge but keep their cool somehow; cuddle a kicking, screaming toddler at two in the morning when all they want to do is stay in bed; and endure the torture of a hundred mealtimes in a row that involve more tears and thrown food than spoonfuls successfully swallowed.

Sometimes they’re driven to tears themselves. Sometimes it seems utterly hopeless, and they don’t know how they can possibly get through it all. Sometimes nothing seems to work. But they still get up and do it, because it’s the only thing they can do.

The mark of a good parent is not measured by being good when everything is going well – it’s how you do when your precocious twenty-two month old is driving you up the wall by testing you, pressuring you, challenging you, from dawn to dusk each day and then again from dusk till dawn. It’s measured by what you do when you’re in a cafe and your little one is screaming bloody murder, by how you react when they’re not behaving themselves, by whether you can remain calm when everyone’s looking at you and judging you for the behaviour of your child.

Nobody sees the work that goes into a book, just as nobody sees the work that goes into a child. By the time it is ready to be released into the world, you have poured far more of your heart into it than you even thought you had in you to give. But when all is said and done, you’re only assessed on the finished product, not the work that went into creating it. So you just have to press on in the faith that one day it’ll all come good. And then maybe your kid will write that bestseller that eluded you so long!

A Toddler’s Social Understanding

The first eighteen-odd months of a child’s life, their social skills are fairly simple, given that they revolve around another person’s ability to meet their needs: ‘feed me or I’ll scream, too late, waaaaaahhhhhhh!’

Their first hand gestures – pointing – are merely to make it easier for you to meet those needs. ‘I want that. No, not that: that! What are you, a moron?’ At this stage, it’s difficult to argue that kids are social beings at all, given that they’re self-centred hedonists who think other people exist solely to satisfy their desires, and they only acquire social skills as a cynical ploy to better manipulate those around them. If they were bigger, we’d call them psychopaths, or perhaps ‘rock stars’. It’s a good thing they’re small.

Then things get a little less selfish. They start to understand the pleasures of giving and receiving affection, by kissing and hugging and asking to be held. Around the same time they discover it can be fun to share their enjoyment with others – playing basic games, singing interactive songs, dancing, joking and imitating the behaviours of others (making pretend phone calls, cuddling pretend babies, preparing pretend cups of tea). They start to make friends, or have people they prefer to be with and those they wish to avoid. And they even learn a few key words (hello, goodbye, please, ta) to facilitate their entry into the social world. So far, so simple.

And then, after about eighteen-months, their level of social understanding mushrooms so quickly you struggle to recognise the increasingly complex creature that you share your home with.

My daughter is at this stage, and it is a daily dose of crazy.

For example, she has discovered hierarchy. A month ago, the dog was just another person around the house – albeit a hairy, smelly, waggy-tailed person. Now my daughter has realised that the dog is a non-human animal, and thus lower in status in the household than she is. And that means she is in charge, and can tell the dog to ‘shush!’ and ‘down!’ and ‘g’way!’ And woe betide if the dog doesn’t do as he’s told. It’s like having a pint-sized drill sergeant wandering around the lounge, demanding obedience at every turn. ‘Sir, yes, sir!’ cries the dog. Poor thing. She’ll be shaving his head next.

My daughter has also discovered the joys of storytelling, which is incredibly cute and incredibly confusing given her lack of spoken language. The other day I asked her what she did at her grandfather’s.

‘Izza da bed, bong da whoosh!’ she said, swinging her arms around and spinning on one foot.

‘You did what?’

‘Da bed. Dee bosh tan dum bin bed. Da whoosh da bed, an bed, sa bed, whoosh.’

‘What about the bed?’

‘Inda ban bed,’ she said, bewildered that I couldn’t understand. ‘Da bed, whoosh, bong ta bed. Whoosh. Da bed ta whoosh!’

Nope. Ten minutes of this. Something about a bed, that’s all I got.

A phone call to her grandfather established that what she’d been trying to explain was that she had been jumping up and down on the bed all afternoon. So obvious (not)!

Now, storytelling is a complex skill involving careful selection and omission – knowing what to include and what to leave out. My daughter will spend ages talking about something that lasted two seconds, and the rest of the day won’t even get a mention. She also has a weird predilection for the more morbid aspects of a toddler’s experience.

It doesn’t matter what she’s done, where she’s been or for how long – ask her what she did and she’ll tell you how she hurt herself. You went to the beach today? She’ll rub her eyes to show she got sand in them. What did you do at the park? She’ll point to a graze on her knee. Did you see your aunt? She’ll indicate where she banged her head on the table. You do not want to babysit my little girl – you make the slightest mistake, she’ll act it out and tell me all about it.

And that’s another complex social skill she’s developed lately – the concept of blame. After I put her to bed the other night, I came downstairs with the monitor and started to write. After a while, I started to hear giggling through the speakers – child and adult. This went on for around fifteen minutes until I popped upstairs to see what was happening. My wife had climbed into the little one’s cot and they were playing peekaboo. Nice.

I stood and watched for a moment, such a lovely scene of innocent joy – and then my daughter saw me.

The change was instantaneous. The smile vanished, her face fell and she pointed at my wife. ‘Mummy! Mummy!’ she shouted, as though saying, ‘It was her, daddy, it was her!’ She then gestured over the side of the cot. ‘Mummy, bed, da bed, mummy,’ she said, which I interpreted as, ‘I told her to get out, daddy, but she wouldn’t go, it’s her fault, I didn’t want to, she made me, it wasn’t me!’ Forgetting, of course, that I’d stood there and watched her, and she was in every way an active participant in the game.

Scary how quickly she’d sell out her mother. Scary that she’s already developed a concept of behaviour and consequence. Even scarier that she sees my wife as a playmate and me as the lawmaker who’ll tell them off for messing about after lights out. I guess that answers the question of how she sees the hierarchy between her parents.

For the next few nights, every time I walked past her room I could hear fake snoring as she pretended to be asleep. At 21-months! What a devious little sod. And what a socially-complex kid compared to a couple of months ago.

You have to watch out for these toddlers. One day they’re crying for a bottle of milk; the next, they’re planting evidence to frame others for their misdeeds. If your kid is approaching eighteen-months of age, watch out: the next few months are going to be interesting!