How my son’s autism diagnosis changed me and my family

For many people 2 April will be just another day – but for others it’s a reminder of just how far they have come on their family’s autism journey

This week I found myself comforting a friend in our local coffee shop.

We were talking about our eldest children, her son and my daughter, and the fact that they are both carers for younger siblings with specialist needs, and wise and compassionate beyond their years.

What brought tears to my friend’s eyes was the thought that neither of them may have the chance to have a school photo taken with their younger sibling – an experience that many of their friends have enjoyed and quite rightly taken for granted. I empathised with her, but for once I was the one telling another parent of a child with additional needs that things can and will get easier.

World Autism Awareness Day is on 2 April, a fact not lost on the estimated 700,000 people with a diagnosis in the UK or their families. It’s also not lost on me because this August it will be two years since my four-year-old son Rory was diagnosed with Autistic Spectrum Disorder (ASD).

If I’m honest I’d known for months, even years, that there was something different about my beautiful blue-eyed boy, the second baby we’d struggled to have and the absolute image of his Nanna.

Rory was late hitting all of his milestones, skipping the crawling stage entirely and only taking his first wobbly steps at 19 months. Many people told me: “Don’t worry he’s a boy, they’re lazy – he’ll get there in his own time,” and I’d try to convince myself, against my own fears and better judgement, that they were right.

When my husband Geoff pointed out the way Rory lined up his toys in perfect rows, flapped his hands like a bird’s wings when he was happy or excited – a classic sign of autism – or struggled to make eye contact with us, I brushed it off and changed the subject.

But after a series of appointments with health visitors, Rory’s GP and finally a consultant specialising in social communication disorders, we were told that there was no doubt about it – our son was autistic and the future life that we’d hoped and expected for him would never look quite the same again.

In those early days after he was diagnosed, there were tears, long conversations with each other, close friends and family and actually some small relief at finally knowing what we were dealing with. But there was also the gut-wrenching panic of worrying about what this might mean for Rory. Would he ever learn to speak properly? Would he be able to make friends like his sister Immy had? Would he be bullied because of his condition? Would he be able to hold down a job in the future, and have a relationship, or live alone?

These unanswerable questions turned round and round in my mind like a tumble dryer – and then of course there was the guilt and the anger. I wanted to know why this was happening to my child, whether we could have picked up on it earlier, or whether we could have done anything different.

Sarah with her son, Rory (Sarah Welsh)

There’s a saying that goes something like: “You grieve for the child you thought you were going to have”, and I’ve never liked it because, to me, it’s like saying you want to change them.

But have I grieved sometimes for the experiences I might never get to share with Rory, and for the doors that may now be closed to him? Yes.

And are there days when I would take the autism away if I could to make simple things like eating a meal or cleaning his teeth less of an ordeal for him? Absolutely.

What I have found strength in, though, is how we’ve pulled together as a family unit, and little by little, without us even really realising it, we’ve adjusted our outlook as parents too.

Shortly after my son’s diagnosis, I found using social media incredibly difficult. A photo of a friend’s child simply smiling at the camera was a totally alien concept to Rory. A photo of a child sitting on a balance bike could reduce me to tears. But now I’ve taught myself to not compare him to other children. I still have days when I struggle, but now I’m proud to shout about Rory’s condition on Instagram and Facebook and document all his amazing achievements.

I used to worry about what I’d do if Rory’s sensory issues led to a meltdown on the school run or in the park. Now I happily chat to the parent next to me about my son and ASD, which means he can struggle to wait for his turn on the slide and that he finds it hard to share.

During a job interview where someone told me she was “very sorry” that my son was autistic, I visibly bristled and quickly told her that she shouldn’t be because Rory is doing so well.

And six months on from making the very difficult decision that Rory won’t be able to cope at mainstream school, I’m delighted that we’ve secured him a place at the local specialist primary where he’ll get one-to-one support and they couldn’t give a toss whether or not he’s cooperating with toilet training by September.

Despite only being four years old, Rory is without doubt the bravest person I know. Autism means that just leaving your house on certain days can lead to crippling anxiety, yet he’s always cheerful and has a cheeky smile. Friends, colleagues, family and his teachers have all gone out of their way to tell us that Rory brightens up their day, and that makes me feel incredibly proud.

And while I might not be able to predict what’s yet to come, for him or for us, I know that the future doesn’t frighten me half so much anymore with Rory in my corner.