Autism Jersey staff were my voice of reason
Caroline Costello, a trustee of Autism Jersey, is mum to Adam, who was diagnosed with Asperger’s Syndrome and ADHD when he was nine
Caroline is the first to admit that being a parent of a child on the autism spectrum is exhaustingly hard work on a daily basis.
‘You need to think ten steps ahead for every scenario, and you just can’t do it. So sometimes if I get through a day in one piece, I feel relieved,’ she says.
It’s been two years since Adam, who has recently started secondary school, was diagnosed with Asperger’s Syndrome and ADHD. ‘He didn’t have many friends at school, he didn’t get invited to any birthday parties, he didn’t like loud noises or crowded places, he was very impulsive and had no sense of danger,’ Caroline explained. ‘But it was only when his sister came along that I realised that either she was very bright or there was something wrong. He was very rigid and structured, with routine, too. He has huge amounts of anxiety, and can become aggressive at any moment.’
Adam was always more fascinated with grown-up things, like cleaning products, kitchen knives and garden hoses, rather than toys and games. ‘I do sometimes say it’s like having an 11-year-old toddler, because I am always thinking “where is he?” and “what’s he doing?”. If he thinks he wants to do something, it’s like he is wearing blinkers.’
He has found the transition to secondary school quite difficult. ‘It’s incredibly tough,’ Caroline says. ‘And it’s upsetting to watch him struggle so much and not be able to make it better for him.’
Caroline often has to plan ahead. ‘He thrives on routine, and needs to know exactly what the structure of each day is. If he doesn’t, or something unexpected happens, he could have a major meltdown, wherever he is.
He is not naughty, he is just having the day from hell
‘I feel like everyone is looking when he is shouting and swearing loudly, or lashing out at me in public. I feel mortified. And I feel for him as well.’
And what would she say to those people who raise eyebrows and stare?
‘Walk a day in my shoes. People stare, and you think, you wouldn’t be looking at me like that if I had a child in a wheelchair, or a child with a broken arm, and make your judgments. You feel that people are thinking “control your naughty child”. He’s not naughty, he is just suffering extreme anxiety with sensory overload and having the day from hell.
‘Trying to stay calm through all of that is incredibly stressful and mentally exhausting.’
Caroline, an accountant at the Royal Bank of Canada, says she became a trustee to give something back to the charity that helped her when she needed it most. ‘I knew nothing about autism so I phoned Autism Jersey straight away.
‘They were my voice of reason. They were just there, non-judgmental, offering lots of help, lots of practical advice on where to get help and support. And so I wanted to do something to say thank you for all the support I was given.’
Adam now has access to Autism Jersey’s Short Breaks Service. ‘It’s been a bit of a lifeline for Adam,’ Caroline says. ‘He enjoys going out with the lads who support him. They play football or pool, go for a walk on the beach, play on the PlayStation, all normal “boy” stuff. He thinks they’re his best mates and he has so much fun with them.
‘They teach him important life skills, like going to the shops, budgeting with money, road safety, finding out what’s appropriate, and what’s not, from people he looks up to.
‘And it means I can spend some quality time with his younger sister.’
When he’s not anxious, Adam can be very funny, says Caroline. ‘He’s got the most amazing laugh, he’s very mischievous. He can also be very affectionate, caring and super-helpful.’
She laughs as she recalls the time they were in a store, looking for some flowers. ‘He said: “What are you looking for, Mummy?” I said: “I don’t know really. I think I just need some inspiration.” So she watched him disappear off to a member of staff and say: “Excuse me, do you sell inspiration?”
‘Sometimes his interpretation of things makes me question my own thinking. He’s so logical and literal. I’d love to be in his brain sometimes.’
*If you are inspired by Adam’s story, please support us so that we can continue to support adults and children on the autism spectrum.