'You don't live, really, you just survive'

Mon, Jan 21, 2013, 00:00

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.

In the case of Luca, however, advocates and professionals have expressed shock at the official response to the boy’s needs.

“This is a case of the most shocking abandonment of a child’s needs I have seen in a long time,” wrote Dr David Carey, a psychologist with 25 years’ experience in education settings, in a recent assessment report.

“Luca has been severely damaged by a failure to provide appropriate services to meet his needs. His mother is doing the best she can to provide for him in a loving and supportive environment . . . A gross insensitivity to her situation appears to characterise the relationship of those in a position to provide care for Luca. Clearly she is stressed to an inhuman level of endurance.”

Luca was diagnosed with autism when he was three. While he progressed well at a preschool that specialised in teaching autistic children between ages three and seven, Murphy maintains he has only received sporadic provision of appropriate education since.

Sensory problems

His placements in two schools broke down. She says he required therapy to help him deal with his sensory problems but this did not happen. Then, in early 2011, his diagnosis was amended by a HSE official to include a mild to moderate intellectual disability. This meant he was eligible for disability services – and excluded from some of the more mainstream education providers, Murphy says.

“To me it was a way of moving him into another service, just because it was available.”

Self-harm

When Luca moved to the respite centre run by the Daughters of Charity, it was supposed to be a temporary solution to help transition him towards going to school. But instead of progressing, his mother says, he slipped further backwards.

“He began self-harming and was getting extremely stressed and anxious. He was arriving home in bloodstained clothes. I can’t understand how this could happen, when he was under the supervision of adults at all times.”

The prescription of drugs to control his behaviour – including anti-psychotic drugs – seemed to exacerbate rather than improve him, she says.

In a statement, the HSE said it did not comment in detail on individual cases. But it said the Daughters of Charity provided services on its behalf to people with both autism and moderate intellectual disability. “The HSE is continuing to offer a range of services and supports to this family,” it added.

The Daughters of Charity declined to comment on the case, although one source familiar with the case said staff had the family’s best interest at heart.

Murphy says things came to a head in May last year, when she was asked to sign a consent form for staff to use a type of restraint known as therapeutic management of aggression and violence. She refused. Luca has not been in any service since.

Autism: 'Lots of Lucas out there'

Luca’s case isn’t an isolated one, says Kieran Kennedy of the autism charity, Shine. “There are lots of Lucas out there . . . They’ve typically fallen out of the system and they might get a few hours of home tuition or respite for the parents . . . their constitutional rights are being ignored.”

Irish Autism Action’s chief executive Kevin Whelan says access to good education or therapeutic services depends to an extent on where you live. “Some people are lucky,” he says, “but if you live close to the traditional service providers who have worked in the area of disability, it’s likely that’s what you’ll be offered.

“Their experience had been with intellectually disabled children. Now they’re being asked to provide services for people with autism. It can be very difficult to do both.”

At the Murphy family home, life continues as it has for months. From 6.30am to 1am, Luca’s mother’s every waking moment revolves around keeping her son occupied.

“I feel like we’re living in a prison,” she says. “It’s destroyed our lives. We don’t have a network of wide support. I’m here on my my own. My twin sons, aged 20, broke under the strain of it all. They can’t live here any more.”

Luca has improved significantly under her care, she says, and doesn’t injure himself any more. She has also managed to coax him outside for quick trips to the shops each day. But it isn’t sustainable, she says. If separated from her for more than a few moments, he grows anxious. The only option Luca has been given is to return to the Daughters of Charity. The HSE says it has been unable to find anywhere else. Luca’s mother, though, says her son needs autism-specific services and supports that are appropriate to his needs. “There was only one reason he was hurting himself so badly. He’s frustrated and he’s stressed. He’s never received the kind of education or therapeutic intervention he needs,” says Murphy. “He needs to be taught a form of communication – but look at how late they’ve left it . . . He’s being abandoned – and no one is interested.”

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