I wrote the piece below at about 4:30am one morning in October 2023, with no plans to do anything with it. I was ‘venting’ and trying to regulate my emotions whilst staying awake. But then my wife and I met with our son’s Social Worker and SENCO; I mentioned having written What If? and they asked to read it. Fast forward to last week: our Social Worker is returning to her original team, so we were having a final meeting. At this session, she asked for permission to share this work with her colleagues. I said ‘yes’ and now I’m sharing it here too.

What if?

Two tiny words, but probably the biggest question in English. Those eight characters (I’m counting the space and the question mark) are loaded with grief, longing, sometimes even anger. They hint at lives not lived, potential unfulfilled, opportunities missed.

What if I wasn’t autistic?

This is the kind of rude, unwelcome question which sits in your brain at 4:00am, as you try to persuade your (also autistic) child that no, it isn’t bath time and yes, you should get out of the fucking bath immediately. If you weren’t autistic, he might not be autistic, your brain tells you, mockingly. As you wearily hand the child some sort of electronic babysitter so that you might get two minutes for some basic ablutions, you wonder how differently things might have turned out? Perhaps, there’s a non-autistic version of yourself in a parallel universe who is a globally feted sports writer. Or a wildly successful author. Hell, why couldn’t he be both? He could emigrate to Australia and New Zealand, says your brain. Not like you, Auti Boy.

All this is perfectly true. But, you say to your brain, without football as their deepest and most enduring special interest,  how would Allistic Me become a sports writer? Isn’t it much more likely that he’s still working for Sainsbury’s, or some other retail firm? Sure, he’d probably be a store manager by now, but I reckon the zigzagging I’ve done as I attempted to navigate through life makes for a more interesting journey. I’ve made memories, changed careers and generally achieved a lot of the things I most wanted to as a kid. Plus, I have a beautiful wife and a wonderful family.

Ah yes, says my brain, which is particularly malevolent in the early hours. The kids! Well then, answer me this:

What if my boy could talk to me?

This is the ultimate ‘what if’ question. My son is autistic. He probably has ADHD. I couldn’t care less. I’m autistic and probably have ADHD. I know that being neurodivergent can bring new skills to the fore, just as it can present deficits in some areas. But our son also has Global Development Delay, which means his speech is far below the level you might expect from a child his age. He uses echolalia a lot, and has a few phrases we work with but hasn’t yet unlocked the functional language skills that can unlock his world.

Thinking about this is what triggers the mourning for the ‘child we didn’t get’, the unfulfilled potential, the lost independence. Global Development Delay is holding our boy back. If we can find a way past it, help him develop his speech, he could be anything. That’s what I tell myself. And we keep working on it, with Makaton and breaking things down into a couple of words, lots of praise, plenty of encouragement.

You can’t help but rage against the universe, especially at 4:00am on a Monday when the boy’s brain has decided he has had more than enough sleep, thank you very much, so lights must be switched on and gadgets demanded. Your brain demands it. Needs you to rage, to grieve, to wish. You wish that Global Development Delay wasn’t part of the package, that your kid could just tell you what he needs, when he needs it.

But, say that he could tell you. Imagine, for a moment, that the child could form sentences and advocate for himself in the same way as a ‘typical’ eight year old. Would he still be him, or would removing one neurological condition affect his personality in other ways? Would the supermarket-managing, allistic version of me be a good dad? Would he be career-obsessed and childless or worse, a father who saw their child irregularly, when work and the arrangements with his ex-wife allowed?

An hour ticks by. Two. The boy plays with his magnets on the living room floor. You get a moment to yourself and grab coffee, a flapjack and your heart medication. The brain calms down a bit and concedes well, ‘what if’ is fine as far as it goes, but you’ll never know, will you? You marvel at the elaborate colourful pattern covering the laminate flooring and suppress the guilt you feel at knowing you’ll tidy it all up in a few hours. He’ll tip the magnets out when he gets home, make something new.

Yes, more sleep would be very welcome, as would a proper conversation with the boy. But, for all his challenges and the stress that trying to keep him safe and well can cause, you couldn’t be prouder of your son. You admire the fierce determination and intelligence he expresses in your own way and are grateful to him for helping you understand your own brain. And as soon as you acknowledge your gratitude, your brain wants to play again.

What if I’d been diagnosed earlier?

Now this is the great unknowable. The 1980s, when you were Ben’s age, were not exactly a ‘Golden Age’ of Autism research. Would you have been shunted into a special school, just because of your diagnosis and despite the potential all your teachers talked about? Would the bullying you lived through as an adolescent have been worse because you were autistic and not just a boffin?

Perhaps it might have been helpful in some ways; helped Mum to understand you a little more. Perhaps you wouldn’t have had to drop out of the University of Central Lancashire if you’d gone there with a diagnosis. You might have got a grant.

But, if you had known then what you know now, would you have had children? You might have decided against it; concluded that it wasn’t fair to bring a new life into the world knowing it would struggle to fit in everywhere it went, would be stressed out by incidents as minor as a slight change to their regular bus route and spend twice as long as everyone else trying to find a safe meal on a night out.

What if you’d never had kids? Your brain wants to play again, but this last ‘what if’ is the one which snaps you out of this doom loop. You consider your children your greatest achievement, so even contemplating a world without them is enough to bring you back to yourself.

You wish it wasn’t part of the human condition for people to second-guess themselves like this. You remind yourself that you are who you are and that you have a family you adore and who love you dearly too. Then you take a bite out of your flapjack, followed by a large gulp of coffee.