pen to accompany blog on autism

A Letter To Myself On Finding Out My Son Was Autistic

If I could write a letter to my former self, the me that has just been told by my wife that she thinks our son is autistic, this is what I would say.

Dear Jon

It’s me, it’s you. 

You won’t doubt that I’m me, but how can I prove I’m you? 

I know – think of somewhere, anywhere. The shore at Malcesine, Lake Garda (and for bonus points it’s late Summer). I’m right, aren’t I.

I want you to know two things. Everything will be alright and there’s no rush.

You think you have a lot to process, but really nothing has changed. I know what you’ll do next, you’ll go to the toilet as an excuse to compose your thoughts and Google ‘what is autism’ ‘the impact of autism’ and ‘does autism lower life expectancy?’

Don’t do that, read this letter instead (oh, and no it doesn’t impact life expectancy, there’s no reason to think he won’t have a long and healthy life).

Your son has a label now, but it is one that can be used when it is useful and ignored at other times. It doesn’t define him, but it will go some way towards you understanding how his mind works and then, wonderfully, later on for him to understand more about his own brain.

That brain is a good place to start. Autism impacts the brain, but it makes the brain different, not better or worse. He will see things in a different way to most people, but is that such a bad thing? Most people, collectively, are responsible for how the world is and it’s pretty shitty.

I don’t want to spoil what’s to come because it’s wonderful, but you will see flashes of creativity that are incredible. You will see dedication to tasks and a focus you could only dream of.

You will hear his humour, you will read his stories, you will see that he is truly loving towards his family, pets and a few, select friends and adults. 

On that, a paediatrician in a few weeks will spend some time with him and then state ‘he will never really be affectionate or show you much love’. Ignore this, he doesn’t know what he’s talking about.

You will meet experts, but you don’t need to become an expert in autism overnight. 

Your job, like that of any father, is to get close to your son and learn about him simply by playing and spending time with him. Be observant and you will learn what you need to learn. 

I could give you some clues now, but where’s the fun in that, it’s better for you to learn what he likes, what his passions are and what makes him smile.

The autism does matter though. I’m not saying ignore it. It will matter at school, it will impact what you do – and don’t do – as a family. You might want to avoid going to noisy soft play centres.

You’re thinking that this is all well and good, of course you love your son, what practical tips can I give?

I would say see autism as being something that makes your son experience everything in a magnified manner. Typically, this is seen through how an autistic child might find an environment overwhelming – too bight, too noisy, too many people to interact with.

It’s more than this though. The things he loves will be magnified, hobbies become all consuming, the TV programmes or books or food he dislikes won’t just be ignored, they will be hated.

The classic thing you might think about is how he interacts with people – and, let’s be fair here, you’re not exactly great at this. 

He will find groups a challenge, so combine a noisy environment with a group of people and you have a likely recipe for trouble (but not always – sometimes this combination will work well (group swimming for instance). You’ll learn this via trial and error).

I’ve learnt that he will not spread himself thinly. He might not have tonnes of interests, or 40 other children he calls friends, instead it will be a couple of hobbies; a couple of friends and to these he will be incredibly loyal and dedicated. 

Is that better, worse or just different?

Concerns will change. Perhaps you’re already wondering if he will find a job, or love, or independence.

Now, I ask will he find a job that is deserving of his talents because he’s insanely talented. I won’t say what in, but let’s say you will be amazed by some of the things he produces, great for any child, autistic or otherwise. 

Admittedly, in some other areas, where he’s less focussed, the work is maybe less outstanding. But, here again – is it better to be OK at lots of things but not great at any or amazing at one or two things, but disinterested in others. Does the world benefit more from experts or allrounders or does it need both?

I wonder if the world is good enough for him, never if he is good enough for the world.

If you remember one thing, remember this. You wouldn’t change a thing about him, if you could somehow remove the autism you wouldn’t because it’s a part of what makes him who he is.

And, when he gets to 10, he will say (and quite out the blue). I’m autistic, but I wouldn’t change that. It makes me who I am.

Look after him.

Jon

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