For parents of autistic children, Lewis O'Carolan's story encapsulates the poor planning and crisis management that has characterised the State's approach to autism education, writes Carl O'Brien
The photographs are haunting. They are images frozen in time of a happy, curious, bright child, with a life's possibilities ahead of him. In one of them Lewis O'Carolan stands in his garden, smiling at the camera. In another he sits at the kitchen table, grinning widely as he plays.
"I remember at that stage, when he was around five years of age, making a chair from some pieces of wood," says his father, Colm O'Carolan. "It wasn't much, it was a bockety old thing, but he came up to me and said, 'look, a chair'. You could see even at that stage the skills and potential he had."
And then, one by one, his skills began to disappear. He became more withdrawn. He stopped making eye contact, stopped smiling, and lost his speech. Autism began to rob Lewis of his most basic skills to the point where he had difficulty deciphering the world around him.
Today he lives in a lonely world where contact, such as a hug, can be intolerable. He is acutely sensitive to some sounds and can fly into a rage at the noise of a mobile phone ringing. He is obsessed about some things, such as running water and the smells from washing-up liquid, fabric softener and soap. His biggest frustration, however, 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.
It has resulted in him developing severe behavioural problems: smashing doors, punching holes in walls, ripping pipes from the walls. It is one of the few ways he feels he can express himself.
"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."
This week was the culmination of a two-year battle in which Lewis's parents, Colm and Annette, have tried to secure appropriate education for their son to help him fulfil his potential. Having taken Lewis out of a special school in Beaumont in Dublin, where his behaviour deteriorated dramatically, he has spent the last two years at home without education or therapies. They feared that, given the lack of autism-specific education and the deterioration in his condition, he would end up in a psychiatric hospital.
"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.
Since court proceedings began, a number of proposals have been put forward by the Health Service Executive (Northern Area) and the Department of Education. The first offer included swimming lessons, music therapy and a home help; followed by education and therapy at a sports hall in Cabra; and now the final offer at Woodlawn in Lusk, Co Dublin, where a care and education programme for Lewis will be established by the State.
The plans were rejected by the family. They say the education programme is overseen by psychiatric experts and fear that medication and restraint will form a part in his treatment. Instead they sought a form of education known as Applied Behaviour Analysis (ABA), a highly structured form of one-to-one teaching, along with therapies to tackle his behaviour.
"We're not looking for the best service or a state-of-the-art one. We just want a basic autism service that will meet his needs," says Annette.
These types of services are available in Britain at residential centres that specialise in helping autistic children with challenging behaviour. A number of autism-specific centres in Britain offered places for Lewis. As the legal process continued, and in the face of the refusal of health authorities to fund these placements, the offers were withdrawn.
IN A STATEMENT yesterday, the HSE said that Woodlawn is an integrated educational and health support service with experience of managing clients with a dual diagnosis of intellectual disability and autism, together with challenging behaviour. The facility is attached to the St Joseph's Intellectual Disability Service - located on the campus of St Ita's psychiatric hospital in Portrane - and cares for four young people and provides respite care for up to 10 young people on a regular basis throughout the year.
With reference to allegations of its psychiatric approach, the HSE said all major intellectual disability services in the country employed consultant psychiatrists with a special interest in intellectual disability and multi-disciplinary support teams. "To meet Lewis O'Carolan's specific needs the Department of Education will fund an appropriately trained tutor and an appropriately trained special needs assistant," the HSE added.
On Wednesday a High Court judge decided the State had advanced an "objectively adequate" and "constitutionally appropriate" proposal for the care and education in a unit in Co Dublin.
For parents of autistic children, the O'Carolan case encapsulates the poor planning and crisis management of the State's approach to autism education. Demand among parents of autistic children for appropriate education services has grown in recent years due to increasing awareness that, with early intervention, many children can be rescued from the worst effects of the condition or have their diagnosis changed.
Department funding for autism education has increased significantly in recent years, while a number of ABA schools have been established, primarily on foot of lobbying or High Court actions.
"If the Department of Education is pushed hard enough, it may give money for this kind of home tuition," says Cormac Rennick of the Irish Autism Alliance. "There are still kids out there who are misdiagnosed or on waiting lists. There is nothing cohesive about the services; I can't see how they are planning for the future when there are no secondary school places for autistic children. It all seems to be a fire-fighting exercise."
While there are some progressive steps being taken, psychiatric hospitals are still being used to detain intellectually disabled or autistic people. Given their psychiatric approach, many campaigners said residents often end up being prescribed anti-psychotic drugs to control their behaviour.
OFFICIAL FIGURES SHOW there are around 470 intellectually disabled people inappropriately detained in psychiatric hospitals. While the numbers have fallen dramatically in recent years, The Irish Times has established that the practice of admitting intellectually disabled people to these settings continues, despite Government pledges to end it.
"There is nowhere else for them to go," says the mother of an intellectually disabled daughter admitted to a psychiatric hospital this year, who wishes to remain anonymous. "They don't have the specialised facilities they need and this is all we have."
The Government says all inappropriately detained people will be moved to more therapeutic settings by the end of next year. However, at the current rate of progress, it could take anything up to a decade to achieve this, say campaigners.
Colm O'Carolan, meanwhile, talks regularly about moving to a jurisdiction where things are done differently. Leafing through the High Court ruling, he grows angry at what he sees as the indifference of authorities to his son's needs.
"He's approaching 15, he only has three years left before he reaches 18, when the State has no obligation to provide anything for him," he says . "The ruling talks about all parties putting the past behind them and letting Lewis reach his full potential. We've had experts from England, Scotland and Wales to the house who say they are shocked at the state of Lewis and the lack of intervention.
"We just want what's normal by international standards, nothing else," he adds. "This is about allowing him to improve and fulfil his potential."