‘If it helps just one other parent, then it’s worth it’: The story of my autistic sons
Irish Examiner July 2021
Author: Karen Murray
Denis Deasy is a family man working remotely in IT and living with his wife and two sons. Nothing unusual with that, but his home life is far from typical.
His eldest son, also Denis, is 30 and has Asperger’s Syndrome (a more able form of autism) while James, 25, is severely autistic and completely non verbal.
Where he finds time to write amid a life of work, care and very little sleep isn’t clear, but Denis (who lives in the UK but has roots in Cork — his parents came from Dunmanway and Bandon) has just published his third book, From This Day Forward based on a father and his autistic son Harry – a fictional work but based on Denis’s life’s experiences.
In spite of having had just an hour’s sleep (“James rarely sleeps”) Denis is remarkably cheerful as he juggles telling his life story and placating an insistent James who wants to discuss supermarket receipts.
“He’s obsessed with supermarkets — and with food generally,” Denis explains as he patiently tells his son that they will go to the shops once he’s finished on the phone.
“And when he gets something into his head, that’s it. He can ask the same question 200 times.”
He’s not exaggerating. James repeatedly interrupts his father during the interview and at one point starts to pinch him. Denis is full of unnecessary apologies as a result of the fractured conversation.
“Yes, James, that’s Sainsbury’s, and that one is Tesco,” he repeats about the receipts, gently and calmly directing James back downstairs to where his mother is, while pointing out firmly that pinching is not on.
“As you can see it’s constant,” he sighs as he returns to the interview. “We love him dearly but it’s challenging.”
Both his sons are at either end of the spectrum. Denis junior has a part-time job in a supermarket and is thriving with the responsibility that entails. James was in residential care prior to Covid but has been living at home full-time since November.
“He could have stayed there (at the home) but we wouldn’t have been able to visit and he wouldn’t have been allowed to come home at weekends – and we didn’t want that,” Denis explains.
It’s not been easy having James at home 24/7 — he is 5ft 11, strong and extremely physical.
“When he greets you, he wants to pinch, stamp and bite. It’s a physical barrage every single day but it isn’t that he’s being aggressive, it’s just part of his routine.”
It can be a challenging environment and Denis found writing offered him a release. The first installment in the trilogy was published five years ago.
“The character Harry is based on Denis and another character in the book (Niall) is based on James,” Denis explains. “I couldn’t base my main character on James because it would have been too difficult to write from the perspective of a non-verbal person.
“I wrote the books mainly because there are so many misconceptions about autism – everyone thinks of the film Rain Man and that’s just not what it’s about.
“I felt many of the books out there don’t really explain what it’s really like to live with a child who has autism.”
Denis’s first book ( Living in Harry’s World) tells the story of 12-year-old Harry who lives in the sole custody of his father David. The divorced dad has taken time off to spend with his son but struggles with his behaviour.
In spite of being happily wed to his American wife Joan Marie for many years, Denis says the book tackles the strains bringing up an autistic child puts on an adult relationship.
“Joan Marie wants me to make it clear that the character of Laura is NOT based on her,” he laughs (in the book, David’s ex-wife had a breakdown from the stress of bringing up an autistic child).
But marital problems are a real issue, he says: “I read somewhere that the divorce rate of parents with one autistic child can be up to eighty per cent – you can imagine the stress with two.”
The second book ( I’m Sorry, My son’s Autistic) moves on to adolescent Harry, now 16 with a job and even the chance of romance. But the prospect of a residential school placement is daunting and he is still obsessed with Thomas the Tank Engine DVDs.
The third part of the trilogy – From This Day Forward – has Harry hitting 30 and about to get married. However, all is not rosy in the garden with Harry’s bowel movements raising doubts about his desire to tie the knot.
“Although the subject matter could be considered quite serious, there is a lot of humour in these books,” says Denis. “It’s how I cope.”
He has plenty of anecdotes, ones that appear in the books and that actually happened in real life. James has a habit of throwing objects into the neighbour’s garden and on one occasion, Denis’s mother-in-law’s false teeth were chucked across the boundaries, never to be seen again.
On another occasion, a priest received a hefty kick on the shins during Mass. His reaction? “He winced, then said to the congregation — well, that woke you all up,” Denis recalls with a resigned chuckle.
The Deasys’ lives are not easy but they live them to the max.
“We have many friends in the autistic world who never go out, never go on holidays. But we made the decision to do everything – pubs, flights, restaurants. We didn’t want to restrict our lives.”
People’s reactions to James vary, says Denis, but there’s compassion and understanding out there as well, once you explain the situation.
He wants to continue to raise awareness and dispel some of the myths around autism.
“Writing has helped me and I’d like if my books would help others in a similar situation. I hope other parents with autistic children can relate to it. If it helps just one other parent, then it’s worth it.” Denis is very matter of fact about his role, playing down the sheer time, effort and resilience that he puts into caring for his family day in, day out.
“People say what we do is extraordinary but it’s not – it’s just what you do for your kids.”