The parents of autistic teenager Lewis O'Carolan are taking legal action against the State for failing to provide him with an appropriate education. Carl O'Brien hears why.
There is just one battered door left in the O'Carolans' small terraced home in Dublin. It hangs precariously from the few hinges still attached to the door-frame. The others have either been kicked through or torn down.
Upstairs, the beds lie flattened and smashed. There are gaping holes in all the walls through which you can see from one bedroom to the next. There is no privacy in the bathroom, where the door has long been destroyed, and the sides of the bath have been hacked away.
"He's broken all the doors, all the furniture, all the beds," says Colm O'Carolan, momentarily staring into space, as he relives life at home over the last two years. "The shower, the holes in the bath, stereos, TVs, mobile phones. Just everything that can be broken, he's broken."
As he speaks, his 14-year-old son, Lewis, paces anxiously around the house, mumbling and screaming to himself. Suddenly there is a thud of feet up the stairs, followed by the sound of vases smashing against the floor in a bedroom overhead.
Colm continues to talk, raising his voice to be heard over the din, while he stands at the doorway of the sitting-room.
"You don't really live, you just follow him about and try to supervise him," he says. "You can't watch TV, the knives and forks are gone, you have to eat your dinner out of a cup and gulp it down. All the kitchen chairs are broken. You don't have a life. I don't leave the house for a week at a time."
Lewis is autistic. He is trapped in a lonely world where he finds it almost impossible to decipher what's going on around him. Some things get through: he is obsessed with the smells from washing-up liquid, fabric softener and soap. He likes music, especially songs by Bonnie "Prince" Billy. He is acutely sensitive to some sounds. He can fly into a rage at the noise of people speaking or of a mobile-phone call. He is distressed when strangers call to the door, especially women, who he thinks are health professionals coming to assess him again.
But his biggest frustration is that he cannot communicate with those around him. He has never had the kind of specialised one-to-one education that could have helped unlock the most restricting aspects of his condition, say his parents.
His condition seemed to worsen when some health and education authorities sought to control his aggression through seeking to restrain him or prescribing anti-psychotic drugs. His local health board rejects this claim and says it has provided a range of autism-specific services to help meet his needs.
In the face of his deteriorating behaviour, his parents took him from the school he attended, St Paul's Special School, for autistic children, in Beaumont, Dublin, and have been caring for him at home for almost 18 months without any services. After they told the Northern Area Health Board (NAHB) they were going to take High Court proceedings, the Carolans were offered some music therapy and occasional home help, but they refused it in light of the pending case.
For Lewis, little has changed. The frustration keeps building up inside him, to the point where he feels the only way he can express himself is to break the things around him. His mother, Annette, delicately leafs through photographs in the family album, which show the bright and attentive eyes of a toddler.
"Looking back, he was always a little bit distracted," she recalls. "He'd play on his own, he'd rarely make eye contact, he wasn't like a normal child."
"He was our first child [ they now also have a daughter] and we had nothing to measure him against," says Colm. "We knew he was a late developer but neighbours would tell us that he'd grow out of it . . . Now it would be obvious to me."
Colm says the moment he realised something was seriously wrong was when Annette bought a school uniform for Lewis when he was three and a half.
"When I saw it, it just occurred to me that there was no way he was going to be ready to go school in three months' time," Colm says. "The uniform was put in the press and never used."
"Maybe deep down I realised there was something wrong," Annette adds, inspecting one of the photographs of Lewis on a swing, smiling at the camera.
LEWIS WAS DIAGNOSED as autistic at the age of four. While he was provided with a diagnosis, the services he needed didn't materialise, his parents say. He was offered two mornings a week of speech and language therapy. He was found to be too high-functioning for one school. Eventually, at about five years of age, he was admitted to St Paul's in Beaumont.
"His behaviour didn't get bad overnight," says Colm. "It developed because there was no proper intervention which met his needs. He lost his speech, he became destructive. He had never been like that before. All this has started to happen in the last two years or so."
Colm claims staff were not qualified to provide autism-specific tuition and that his son was left in an empty room for long periods. "Most of the teachers who taught him were qualified as primary-school teachers. There should have been proper special education services, but he didn't have anything. How can the argument be that he got what he needed, when they didn't have the staff to do that?"
Specifically, Colm says his son should have received Applied Behaviour Analysis, an intensive and tailor-made form of one-to-one tuition which breaks down learning into small steps.
The NAHB says that, while it does not comment on individual cases, it takes issue with more general claims about St Paul's. It says it provides the full range of multi-disciplinary services provided by qualified staff for children attending the school. Colm says he took his son out of the school because of the deterioration in his behaviour and out of fear of where he would end up after reaching 18, when the State's obligation to provide appropriate education ceases.
"I remember asking one education official where he was going to end up, and she said Portrane [ a psychiatric hospital]. I had suspected that. I wasn't surprised, but I was shocked that I was right. I said: 'Not over my dead body he will.' I said I'd give him an overdose rather than have him spend 50 years on medication, sitting in a plastic chair in a psychiatric hospital," Colm says angrily.
"His behaviour has got so bad, we had to take him out of school. I felt like we didn't have a choice. He's feeling total pent-up misery and torment. There are some days when he's literally writhing around on the floor in agony because he's so frustrated."
Lewis has been at home for the best part of 18 months, with no outreach services, no education and no social worker.
"If he was a healthy child, we'd have education authorities calling to the door to demand that he be brought to school," Annette says. "Because he's autistic, no one seems to care."
The O'Carolans have re-mortgaged their three-bedroom house in Phibsboro, taken out loans, and been forced to give up work in order to look after Lewis.
Colm worked in landscaping but had been looking after Lewis full-time for the past two years. Annette works for the Civil Service, but has been on leave of absence for several months to help out at home. Their loans have been used to try to find alternative education or therapy, or to bring professionals over from England to assess their son.
"When they [ education staff from England] saw him they immediately said they could do something for him. They couldn't believe he was being left on a bus for two hours [ daily transport to and from school], or that he didn't have certain services, or that no social worker was calling to check to see if he was alive. They couldn't fathom it."
A school in Kisimul, Lincolnshire, which specialises in providing education for children with learning difficulties and challenging behaviour, says it has a place for Lewis if the NAHB is willing to fund it. "We've literally begged them to keep it open since they told us about it last March. We'll take whatever meets his needs, whether that's in Ireland or England. But there is an alternative for him and they have a place."
The NAHB says it currently has one child receiving care outside the State in relation to Autistic Spectrum Disorder.
The O'Carolans are haunted by what they see as Lewis's lost opportunities, but they still see much potential in their son if he is given the right chance.
"He's brighter than a lot of other kids with autism. He had speech before. If he had got intervention, he'd have an awful lot more now, he'd be able to go places, we'd be able to live. He wouldn't have the absolute frustration he has."
IN THE BACKGROUND Lewis is beginning to scream again and to put his hands around his ears. Banging comes from the kitchen, where he is kicking the presses.
"What you are seeing now with Lewis is nothing," Colm says, on his way out to try and calm Lewis again. "Get this and multiply by six, when it's literally a war zone. But this is constant, this is how we spend our day. This is not makey-up. This is reality. I'm only able to leave the house twice a week. Just to be able to walk down the street, to put on my coat and walk out the door, that would be magical to me. I go out twice a week. When I come back, even after half an hour, it's a case of 'what has he broken'."
Colm and Annette have decided to take the State to the High Court in an effort to provide what they say should be an appropriate education for Lewis. The case is being robustly defended by the State, which rejects allegations that it failed in its duty to provide Lewis with an appropriate education.
The argument made by the Minister for Education, Mary Hanafin, last month, that unjustified claims are draining the State of resources for special needs education, doesn't wash with the O'Carolans.
"He's never got anything he needed. Any minister, I'll invite them here. Let them spend an evening here. Even half an hour. They have the services we're looking for in places like America, England, Holland. They have the knowledge. There is no reason not to provide it. If that means paying a little extra in taxes or whatever, so what?"
The frustration gets Colm down, although a resolute determination that their son will not end up in a psychiatric institution keeps him and Annette going.
"I have often thought of suicide. I've even worked out a way to do it. That's how bad it gets," he says. "There is nothing else for him except Portrane; that's what the State appear to have in mind. I want him in a service that is already up and running and where he has specialists. He doesn't have more time, he needs to go to a school now. He only has four years left, the least they can do is provide that. When he reaches 18, then he's entitled to nothing except the mental home."