A NEW Milton mother has penned a heartfelt account of the challenges of caring for her autistic son over more than 40 years.
The book, entitled The Phantom Killer and Her Autistic Son, is by Grace Venters (67) who has lived in New Milton with her husband Nigel for the last three years, having previously lived in Argentina to look after her elderly parents.
She hopes that by telling her story she can raise awareness of the often misunderstood condition, and give hope to other parents who find themselves in a similar situation.
Son William (41), who lives in sheltered accommodation, has many behavioural traits resulting from his condition including a lack of social skills, repetitive activities such as switch-flicking and closing doors, and a tendency to self-harm during periods of severe stress.
However, he can also calculate on which day of the week any date in history fell and recall world time zones instantly.
Grace said: “William can be very sweet and lovable or really horrible. I always describe life with him a bit like a rollercoaster – you laugh when you are going up and scream when you are coming down.”
She added: “When your child behaves in a way not expected or approved by society, you feel like you are drowning in a sea of uncertainty and you are at a loss as to how to keep afloat.
“I hope I can comfort parents by reassuring them that they are not alone on their own journey.”
The book’s title was inspired by a family joke about her “killing off” various fictional inventors who William had asked her to commission to solve problems in his life.
Grace explained: “William doesn’t always grasp reality so he comes up with some pretty fantastical ideas to solve various issues.
“When we were living in Argentina he was at a school two hours from our home and he wanted to be able to come home every evening, so he kept asking me to find someone who would build a runway to fly him home.”
In the end Grace agreed to find a fictitious builder for the runway and later explained to William that he had been run over while buying bricks in Rio, and was unable to complete the project.
Grace, who has spent her life living between the UK and her native Argentina, said: “I will remain in England now as I want to stay close to William.
“When we lived in Argentina I spent a month in England every June so that I could spend time with William and take him out, but it wasn’t enough and now I can see him every week.”
In the often emotional book, Grace recalls doctors suggested William might be autistic when he was three years old.
She said: “At the time, autism was not a well understood condition and was often regarded as a consequence of ‘a mother’s coldness’.
“When my doctor suggested that William might be autistic, I went to the local library and borrowed three books written by parents of autistic children as I had no knowledge of what that meant.
“When I read the parents’ accounts I was able to diagnose William immediately. Although all autistic children are different, their behaviour follows a pattern and all affected children share certain traits.
“Now William is 41 and he has many issues with daily life. I would like to share my life’s journey with those in similar situations, but also wider society and shed light on what is still a relatively misunderstood condition.”
Autism is a lifelong developmental disability which affects how people communicate and interact. One in 100 people are on the autism spectrum and there are around 700,000 autistic adults and children in the UK.
Grace is currently working on a Spanish translation of the book. The Phantom Killer and Her Autistic Son is available on Amazon as a paperback for £8.99.