Autism Acceptance Week: Charlotte’s Story

Charlotte Ling, Group Head of Internal Communications, shines a light on her story during Autism Acceptance Week.

“My son Eric is sweet, kind and fun-loving with a great line in toilet humour! He also has autism and a range of difficulties – he’s almost 13 and alongside his diagnosis of autism, Eric is diagnosed with ADHD, language disorder, anxiety disorder and he has mild learning disability.

“Raising a child with autism takes an army of people. It’s a partnership with not only my husband (who also works full-time), but also my parents who live right next door, and the teachers at the special school he attends, one hour down the road.

“I have managed to keep my career going through it all but it hasn’t been easy at times. The fact is that parent carers who work full-time are also working a second part-time job: dealing fight for services and stress that come with supporting a child with additional needs, on top of actually being a parent. In the last seven years, I have already been to tribunal twice to get him the education he needs and deserves. The best advice someone ever gave me as we embarked on the journey of special school was ‘sharpen up your elbows you are in a fight for limited resources’. They weren’t wrong, the system is broken and the only way is through it.

“Being a parent-carer means paperwork, paperwork, paperwork. I might sign off from the working day and then be faced with the admin of the Disability Living Allowance form at 50 pages thick, or five hours of Education Health and Care Plan review paperwork on a Sunday. Or just constantly remembering to chase around the Local Authority to send the right pieces of paperwork! To get the support he needs takes a lot of effort, and on top of that, it’s emotionally draining because it’s about someone you love and reading about and documenting all the things they can’t do is often the worst bit.

“I know work-life balance for any parent is frankly hard work. Eric has a twin brother who has dysgraphia and so requires some classroom accommodations and extra lessons but is bright, socially adept and in a mainstream private school, so I have the experience of raising both of them at the same time. And for me and my family, the difference is the intensity, I hear from Eric’s school nearly every day at some point. It might be that he was upset in the taxi, or that he didn’t attend one of his interventions or there was an issue with his medication. Each one of those interactions may require a further conversation with the school or an email, or more. For my other son, I hear from his school about him directly twice a year when I receive his report card and attend parents evening. There may be some exceptions, but that is the general gist.

“I would describe parenting a child with additional needs as like parenting but with the lights up really bright. The mental load is greater and that is another impact on my family and working life. You have to be one step ahead, always, and you have to parent better. The need to plan ahead and be constantly alert, which goes for anything from going out to dinner to seeing friends to going on holiday. I spend a lot of time ‘managing Eric’. If anything, it has made me a good juggler but it’s also made me a more understanding and resilient person!

“The latest stats say there are more than 700,000 autistic people in the UK – but I don’t always feel that the places I’ve worked throughout my career have the best understanding of how to support someone living with autism, or carers for that matter. To make it better requires us all to be more open. If a colleague lives with autism, or cares for someone with additional needs, encouraging us to share our stories opens us all up for better understanding and more honest conversations. Asking questions like: What would make it easier for you? How can I educate myself on ways I can be more supportive of those with autism? That’s a great place for us all to start.

“Also, promoting the policies that are already there, for example, if you care for a child with additional needs, you can use your parental leave in blocks of a day to help you get to the incredible amount of appointments you need to attend. It’s highlighting things like that that I think all organisations can do better.

“I think things are changing but society can do more. Autism Acceptance Week is just one week in a year but my son’s needs are lifelong.”