The truth about life with an autistic child
Mel Hunter explains how watching BBC drama series The A Word gave her family the answers they had desperately been looking for
The early morning is my favourite time – when I wake with my arms wrapped around my six-year-old son, his thumb clamped in his mouth, muttering gently as he snuggles closer. Asleep like this, having climbed into bed between us, his mind and body are calm; free from the challenges that mark his waking hours.
Like Joe, the young character in popular BBC drama The A Word, which returned for a second series earlier this month, Sam is one of the 700,000 people in the UK with autism. And for my husband, Graham, and I – along with many families affected by the condition – watching the programme is both unsettling and comforting.
Of course, Joe’s story is not the same as Sam’s. As everyone touched by autism will tell you, no two people are the same. Those with Autism Spectrum Condition (ASC) are as unique as anyone else on the planet, and for our outgoing boy – who also has a separate developmental language disorder – the ASC diagnosis, which came when he turned four, is only one piece of his jigsaw.
But there are parallels: Sam is around the same age as Joe and, like the fictional character, struggles to make himself understood. And like Joe, he was in mainstream education until his language needs made it impossible for him to keep up, and we made the hard decision to find a specialist school.
The similarities that have really made us sit up and watch, however, are those of Joe’s mum and dad, Alison and Paul. Because the programme has blown the lid off what it is like to parent an autistic child.
They may live near the Cumbrian lakes, while we’re in the London suburbs, but there are moments when it feels as if writer Peter Bowker has eavesdropped on our family life, and crunched it into a script. That life is not bad, I should add, or at least not as bad as lazy reporting of autism would have you
‘When you have a child with extra needs, life gets lonelier’
believe. It can be exhausting and maddeningly unpredictable. Joyous one minute – when Sam tells a joke (“cows like moo-vies!”) or surprises us with a perfect sentence – but challenging the next, especially in closed spaces like shops, which are baffling to his sensitive mind, and where anxiety can take over. Sometimes it feels like the autism has a bit part in our lives, other days it’s running the show.
I put on my brave face whenever I walk out of the front door, no matter how chaotic the getting-ready-forschool routine has been (if I’m wearing dark glasses, you know it’s been bad). Even my closest friends rarely see me cry or complain. But in the character of Alison – a fierce tiger mother, wobbling just under the surface with the constant weight of emotion – I see myself laid bare.
Like her, I don’t care what others think about the different way my son does things; the waving arms or repetitive questions. Until they say something clumsy or thoughtless, and then I pounce, with anger in my voice and tears in my eyes. Such as the time a father had a go at me in front of a room full of parents, after Sam had become boisterous at a play group, and my emotions got the better of me – unravelling as he ignorantly talked over my calm explanation.
But we have seen so much understanding, too. While I felt for Shane Stephenson – whose Facebook post criticising his friends for not inviting his autistic son, Reilly, to their children’s birthdays went viral earlier this month – we have been
‘We have every hope that our bright boy has a future to look forward to’
lucky that Sam’s diary is packed. He has a loyal group of mates, whose parents go out of their way to include him. Yet there is only so far on the journey that they can come with us. When you have a child with extra needs, life gets a lot lonelier.
Watching The A Word, we felt like we had finally found some answers; ones we didn’t even know we had been searching for. Dropped from a height by Sam’s diagnosis in 2015 (we were given a National Autistic Society leaflet, and sent on our way), we knew no one else struggling in this unfamiliar world. The series has exposed much of what my husband and I think and say to each other behind closed doors, but which we rarely share with the wider world. Whether we’re fretting about the future or dissecting a bad day, we can’t expect everyone to understand. Kind as people are, Sam is our worry, not theirs.
It is hard enough for us get to grips with what autism means, let alone help others – or, indeed, Sam himself – understand his place in the world. The agony is our impotence. We can support, comfort, find the right school and therapies, but we will never be able to solve this puzzle for him. We just hope that we can equip him to make sense of it himself.
We must also be careful not to push the needs of our daughter, Isla, to the bottom of the pile. She is protective of Sam, but gets frustrated, struggling with the fact that her brother stands out from her friends’ younger siblings. It can be hard for her nine-year-old brain to make allowances for him, and she thinks it is deeply unfair when we, her parents, do just that.
Our marriage has been pushed and pulled; me resentful of how much the emotional and practical burden falls on my shoulders, Graham struggling with his inability to make things “right”. But it has also turned us from a good team into a great one. Faced with big decisions, we’ve backed each other to the hilt. When one of us is wobbling, the other steps up. Because – far from being a continuum of bleakness – autism is a spectrum of light and shade, something The A Word does a great job in conveying. But there are things it doesn’t capture, probably because they don’t make great entertainment.
The terrifying freefall postdiagnosis is one. With little support, and Sam’s autism far from textbook, it took a long time for reality to sink in. Neither has the series tackled how little help is available from the NHS; how hard it is to get support from specialists and therapists, and how the stretched charity sector is a lifeline for parents who often feel the state is seeming to close doors, rather than holding them open. I am yet to see Alison labouring over piles of paperwork, desperately filling in endless local authority forms to get her son the help he needs.
We have fought hard for Sam, determined that our bright boy will have every chance to fulfil his potential. Less than a third of autistic adults are currently employed – only 16per cent full time – but public understanding is changing fast, and we have every hope that he has a future to look forward to.
But you certainly don’t need to have autism in your life to watch The A
Word, because what it also does is make us laugh – something we still do a lot in our family. When Sam is happy, his favourite phrase is “It’s amazing!” – applicable to everything from bacon to fireworks. That’s our family’s “A word”, and we will do everything we can to make sure it stays that way.