Living on the spectrum: My journey raising an autistic child

This week is World Autism Awareness Week, a time where people all around the world take steps to increase understanding, recognition and acceptance of those with autistic spectrum disorders (ASD) such as autism and Asperger syndrome. Helping those who are autistic is something very important to us here at TalkTalk - we work closely with charity partner Ambitious about Autism to support their worthy cause and our employee network TalkNeurodiversity is a safe place for people to ask questions, share advice and feel supported.

Autistic children or those with ASD don’t see the world in the same way as most people, and while this poses challenges for them, it’s also difficult for their parents or carers. And as a parent of an autistic son, I know the struggles better than most.

Ben’s 13 now and, since he was born, our family has been on a real journey together. At times, we’ve not felt as supported as perhaps we should have been, due to gaps in the healthcare and education systems.

Ben has always been unique. He was a wonderful baby, but when he hit that toddler stage, it was very challenging.

My husband, Darren, and I noticed some differences in Ben’s behaviour compared to his elder sister, Eleanor, and other children his age. By the time he was at nursery, his speech was significantly delayed, and he was very sensory-focused. He relied on physical contact with the other children and, although it was his way of interacting, sometimes they didn’t respond well to it. I also saw early on that when Ben didn’t have a routine - he struggled.

When he was three, we took Ben to the doctor but were told he was too young to be diagnosed. If Ben had been diagnosed earlier, his time in infant school would have been much different. In fact, it wasn’t until Ben turned seven that he was finally diagnosed with autism. Initially, we were told: ‘He’s a boy, boys develop differently to girls’, but looking back we should have been more forceful. Those four years were so hard because we didn’t know exactly what was going on with Ben.

Without the right support structures in place, we feared that Ben wasn’t going to be happy in school and that proved to be the case.

In the end, we took Ben for a private diagnosis and, once it was confirmed that he was autistic, we were able to get an EHCP (education, health and care plan). This extra support was life-changing for us, however not every parent is in this fortunate situation.

With access to autism specialists, we could better understand. These professionals were brilliant and showed us the right way to interact with Ben and we learnt how to manage our professional and home lives more effectively around him.

Previously, we’d been treating Ben the same way as his older sister, Eleanor. But because of how Ben sees the world, this approach didn’t work. With guidance from experts, we realised the importance of routine and reassurance to Ben, and how by changing our parenting approach to accommodate his unique needs, we’d be able to mitigate his tendencies towards anxiety.

As Ben reaches his teenage years, we’re facing new challenges.

These days, he doesn’t open up to us as much but fortunately he has a fantastic relationship with his sister. They are really close and, as well as helping him with schoolwork, she’s a great communicator. So, when Darren and I might struggle to explain things to Ben, Eleanor can take to it down to a level he’ll understand.

Ben went to a mainstream school originally, but now he goes to a SEND School (Special Educational Needs & Disability) which provides the structure and support he needs. However, the pandemic meant that the last year hasn’t been a productive period for him. Despite the school’s best efforts, conducting remote lessons over video just didn’t work.

Ben was already has behind where he should be for his age and lost a year in his education.

Ben actually really enjoyed lockdown because it meant he could have more fun with his beloved model steam trains, research classic cars (another passion of his), as well as spend more time with his family. But now that lockdown’s coming to an end, I’m going to be returning to the office more regularly which means a significant disruption to his routine. And he doesn’t understand why I need to go back to work. This transition back to normal life is going to be hard.

Routine and communication will be critical. Ben can deal with change as long as he knows in advance and knows what to expect. The knowledge we’ve built up and the techniques we’ve acquired over the years will help us manage. But at the beginning of our journey, without that knowledge and support, we really struggled.

Our lack of awareness about autism made our lives harder than it had to be when Ben was younger. This is what drove me to learn more about autism and the education system - so that I could make a positive difference. I became the Chair of Governors at Ben’s previous school, an ambassador for Ambitious about Autism and Vice Chair at Green Corridor (a charity aimed at creating opportunities for those with special education needs). Since I started working with charities, it’s helped me understand the challenges that people in similar situations to me face.

I’d urge any parents in a similar situation to me, to build a tight relationship with their school, so you can stay close to what’s going on with your child’s education. In my eyes, there just isn’t enough support through conventional channels for parents of autistic children, so the onus is on you to go the extra mile.

I know first-hand, how daunting it can be for parents. Raising a child with autism, the problems you face can be extreme – especially if you don’t understand the circumstances fully and don’t have the techniques to handle them. But until things change, and there are more resources widely available, and more tangible support structures in place, then these fantastic charities will be left to fill the gaps.

And that’s why I will continue my work in this area: to make life better not only for Ben and my own family, but for other families living on the spectrum too.

To discover more about World Autism Awareness Week, you can go here or if you’d like to find out more about Green Corridor, click here.

Ruth Kennedy – Group Fibre Development Director, TalkTalk