'You don't live, really, you just survive'
Luca (11) has autism but has received no therapy for the past six months
The photographs are stark and disturbing.
In one, half of the 10-year-old boy’s hair is missing. He has ripped it from the side of his head. In another, his ear is torn. There is bright purple bruising to his arms. Yet another shows a drooping, black eye.
“When I saw his injuries at first, I was in tears,” says Gayle Murphy, who lives with her son Luca near Carpenterstown in west Dublin. “He was extremely stressed. All I could see was that he was suffering and losing his potential. This was his only way of expressing himself.”
Luca, now 11, is autistic and has attention deficit disorder. He finds it hard to express himself – he has only a few words – and is acutely sensitive to smells and sounds.
Appropriate education and therapies are vital at this age. Research shows the right kind of early intervention can help reverse the most disabling effects of autism.
But for the past six months, Luca has not received any intervention or therapy of any kind. It is more than two years since he received appropriate or effective education input from the State, his mother says.
While he was given day service in a respite house at a Daughters of Charity centre, the programme did not work out. That was when he began self-harming and regressing, says Murphy. “He needed qualified tutors, appropriate education and support – but he didn’t get it. It’s a service that is traditionally for intellectually disabled children . . . the staff might mean well, but he was being placed in the wrong service.”
Prisoner in home
The only option Murphy has been given by health authorities is for Luca to return to the same service. She has refused, insisting Luca needs an autism-specific intervention that meets his needs. In the meantime, she says she feels like a prisoner in her own home, caring for Luca 24 hours a day.
“You don’t live, really, you just survive. Every moment is taken up with him,” Murphy says. “It damages your relationships . . . But there’s no appropriate service out there that is available to him.”
It is official Government policy that all children with autism have access to an education appropriate to their needs, preferably in school settings.
“This facilitates access to individualised education programmes, fully qualified professional teachers who may draw from a range of autism-specific interventions, special needs assistants, and the appropriate school curriculum,” according to a statement from the Department of Education.