HOW would you react if you were sitting in a bar with friends and an unknown 5’10” adult man lunged in, grabbed your drink and took a huge gulp?
Denis Deasy says it doesn’t normally go down too well when his son James does it. James is 21 and suffers from severe autism: he’s non-verbal and has a range of OCD and other behaviours that make bringing him out in public a challenge.
“The look on the person’s face is utter astonishment; here’s this 5’10” guy coming up and taking a gulp out of his lager,” Denis says.
“It can be stressful, because there’ll be an incident almost every single time we go out, but sometimes when you look back on it, it’s also quite funny.”
Denis is father to two autistic sons. James is the younger and Denis, now 27, has a milder form of autism, Asperger’s syndrome.
Denis junior still lives at home with his dad and his mum, Joanne, and has been working a part-time job at a supermarket. But Denis senior says his vulnerability is a risk.
“He wants to be more and more independent, so now he goes on local trains on his own,” Denis says.
“But he talks out loud to himself all the time, and that makes him very vulnerable. Gangs of kids will pick up on that sort of thing and I worry for his safety.”
The Deasys live in Surrey, on the outskirts of London, but Denis has deep connections to Cork; his father was from Dunmanway and his mother from Bandon, and he returns often to visit relatives, most recently to celebrate his 60th birthday, last year.
Denis believes that the challenges of raising autistic children are poorly understood by wider society: “When you say to people ‘I have two autistic children’, they always ask you what they can do; they think they’re going to be able to draw maps of the world or solve complex mathematical equations. There’s been a misperception of autism, and the media buy into that.”
To share his own experiences of the real, day-to-day life of parenting autistic children, Denis has written a book, Living In Harry’s World, published by Grosvenor House.
Harry is aged 12, autistic, and has ADHD. His father, David, has sole custody of Harry: David’s ex-wife, Laura, had a breakdown due to the stress of bringing him up. David takes time off work, but struggles to cope with Harry’s behaviour. To add to their anxiety, Harry will be singing at the Royal Festival Hall as part of a special needs group, even though he hates singing and people clapping too loud. Will he be able to hold it together in front an audience of 2,500 people?
A thinly-veiled autobiographical work, it’s written in the form of a diary, with each chapter representing a day spent with the titular Harry, who is closely modelled on Denis’s elder son, while another boy in the book, Niall, is based on his younger son, James.
As it’s a work of fiction, in the book the characters of the parents are separated, although in real life Denis and his wife Joanne are happily married. But he wanted to highlight the tremendous strain parenting autistic children places on a relationship.
“A lot of the other parents we know are separated,” he says. “I’m very lucky to be married to Joanne for 31 years and we’re very supportive of each other.
“Sleep deprivation puts you on edge though; bringing up a normal child is hard enough, but you can multiply that by 100 when you have two special needs kids.”
The Deasys’ home environment can be pretty chaotic and, as Denis puts it, “non-stop. You don’t really get so much time to yourself.” As a result, Denis penned most of his first novel while commuting to work on the train.
“I’d write on the train and then type it up in my lunchbreaks,” he says.
“It’s a painful process, and not straightforward, but I found it very cathartic. Every time I re-read it when I was finishing it, I felt very emotional. And there was a huge sense of achievement getting the first batch of physical copies delivered.”
With the writing bug having bitten, Denis is now two-thirds of the way through a sequel to Living In Harry’s World.
On Amazon, Denis has received some excellent reviews for his book, and even though he’s delighted to receive feedback from other parents of autistic children — who say they identify with Denis’s account of the day-to-day struggles, some stressful but some comedic, faced by his character — he’s also keen that the book be read by people who don’t have autistic children.
“People who’ve read it who don’t have autistic kids have said it’s a real eye-opener,” he says.
“A number of people said they found it very depressing, because it can be quite stark, the life that we lead. It is an eye-opener for people without the experience.”
Living in Harry’s World is available on amazon.co.uk