As the National Autistic Society‘s Autism Hour event continues (5 – 12 October), Christine McGuinness spoke with editor, Lorne about raising autistic children and the importance of awareness.
Raising three children, Christine McGuinness and her husband Paddy are just like any other parents: striving for their children to flourish. But, at the age of three the future looked uncertain for twins, Penelope and Leo, who were diagnosed as autistic.
“To be honest, we weren’t expecting it,” explains Christine, who hadn’t considered her children were on the autism spectrum.
Sensitive to noise and walking on their tiptoes, although the signs were evident, Christine and her husband didn’t know that it symbolised autism.
She continues: “It came to the point where we were both told the twins were autistic, and we were just so shocked.
“We had absolutely no idea what autism was and what it meant for us as a family. We didn’t know what the future would hold; at that point we didn’t know if they would ever speak.”
After the initial diagnosis, the family went through some challenges adapting to the news. Unfortunately, it is not uncommon to receive negative stories or experiences of raising autistic children, and this affected how both Christine and Paddy learned about the condition.
However, now an advocate for autism awareness, Christine was determined to research all she could.
“I instantly wanted to know everything and become an expert,” says Christine. “I wanted to do all the courses and research because I wanted to know everything I could about my children.”
And now, Christine has taken her experiences to share the realities of raising autistic children. After all, knowledge is power.
“What I have found which will help them in the future is everyone else understanding. Now, we can’t go and educate the whole world – as much as I would love to – but I’m certainly going to try,” Christine enthuses passionately.
“If I can teach one person about autism I certainly will try. I would rather people come and ask me about the children, instead of stopping to stare, because that won’t get us anywhere. If we talk about autism and discuss it, we can change attitudes.
“As a parent, it is difficult, when you know people are staring and assuming your kids are naughty,” she continues.
“It’s hard because you want to stop them and explain what is going on; explain that you can’t stop a child from being overwhelmed or anxious – and that’s normally what autistic children feel.”
Using her platform, Christine regularly posts across her social media channels with personal insights into her life with Penelope, Leo and Felicity – who has not been diagnosed as autistic, but the traits are there.
“I get messages everyday thanking me for being open about the children, but it helps me more than anybody else, and I do it for my children,” explains Christine.
“We’ve got a platform and we can talk about it and raise awareness in ways maybe other people can’t. From all the research I’ve done there is no magic wand, pill, medicine, no treatments that will ever get rid of this condition – our children will be autistic adults one day.”
This transparency is integral for others raising autistic children, or other children with disabilities, all the way to raising the profile of disability. Learning your child has a disability can illicit dark times, as Christine and her husband faced.
Reaching out to charities such as the National Autistic Society – who support families after an initial diagnosis all the way to assisting in finding the right school – and interacting with families in similar situations has helped the couple. As has enjoying the moments when Penelope and Leo thrive.
Through the hardship and challenges, when the twins do reach a milestone the rewards make everything worthwhile.
Christine enthuses proudly: “It took a while to get our heads around the fact that, yes, they are autistic but they’re still perfect, fabulous and amazing.
“This doesn’t mean they can’t do the same as other children, everything is going to take that much longer and that bit more effort. It was difficult at the time but when you get your head around it you do find ways to cope.
“The rewards, when they happen, make it all so worthwhile. Our milestones, for example, when they speak or try a new food – you want to do cartwheels. Others may take this for granted.”
And after six years of planning, the family went away on their first trip together. What would be seen as run of the mill for many other families, going on a plane for the first time took dedicated planning – but it was worth the wait.
“Years ago I thought that was never going to happen because the children never wanted to leave the house, that was their comfort zone,” continues Christine. Having returned from Southampton after visiting Peppa Pig World, it’s a holiday the family will cherish.
And looking back, it was a moment that Christine and Paddy never thought possible. “I wish, back then when we were really quite down, I believed that things would get better,” says Christine.
For other families learning about a diagnosis, or adapting to a new life as a parent of a disabled child Christine advises: “Take it one day at a time. It will get easier.
“It might not feel like it now, but it will. Everything now that seems really, really difficult will become part of your normal day and part of your normal life. Every single day they amaze me. I feel lucky that they’re mine.”