Ignoring autism: a great Irish shame

Annette and Colm O'Carolan see no point in replacing their rotting kitchen ceiling, because if they did, it would only be a short time before it would have to replaced again and the bathroom floor above too. For now, it's just going to have to stay like that while Lewis, their autistic, 14-year-old son is denied the educational services he needs. Filling up the bath with water and flooding the bathroom repetitively is all that there is at home to keep him calm and occupied this past two-and-a-half years.

If you have come to this column looking for a laugh this week, I'm sorry I have to disappoint you. I haven't found a lot to laugh at, even sardonically, since I met and talked with Annette O'Carolan. Mostly, I have spent the time since trying to remind myself that this is the 21st century. We have all the accessories and technology to prove it, but I am not convinced. Because here, in one of the wealthiest nations in Europe our treatment of autistic children with development disabilities resembles something closer to the dark ages than that of a modern, educated society.

The O'Carolans lost their court case last month to compel the State to provide appropriate care and educational services for Lewis. The court found that the proposal cobbled together at the 11th hour by the Departments of Health and Education, the Attorney General and the Northern Area Health Board (as it was at that time) met the criteria of "objectively adequate" education. This involves placing Lewis in Woodlawn, a unit attached to Portrane pyschiatric hospital. The Woodlawn facility, normally used as a respite facility for, amongst others, Alzheimer patients, is staffed by psychiatric personnel. Lewis does not have a psychiatric condition. At four years old, he was diagnosed as having moderate autism. In the years since, appropriate, autistic-specific services have not been available in Ireland and Lewis' condition has deteriorated. He is now considered to have severe autism and a profound learning disability. The Irish State did that to Lewis. Its neglect of a young child, its refusal to meet its responsibilities under Article 42 of the Constitution to provide appropriate education for all children, has left Lewis more profoundly disabled now than when his life started. And he is not the only one.

The O'Carolans will never allow Lewis to go to Woodlawn, a psychiatric facility lodged between a paving stone factory and an industrial plant, where it is required that they sign a waiver to allow Lewis to be medicated as the staff there see fit. Medication means anti-convulsant drugs. Lewis has never suffered from convulsions, but the drugs slow down his brain activity, short-circuiting the need to deal with his challenging behaviour.

The State's proposal for Lewis also includes an "appropriately-trained tutor". That element of the State's proposal did not sit well with David Braybrook, who submitted an affidavit on behalf of the O'Carolans. Mr Braybrook, a member of the UK Ministerial Committee for Care Standards in Special Needs Schools, stated: "a one-year distance learning Certificate in Autism is not sufficient in itself to devise, co-ordinate and deliver an appropriate programme of education for Lewis."

The O'Carolans were seeking, through the courts, to force the State to pay for Lewis to attend the Bangor Centre, a specialist autistic education facility in Wales. After years of desperate searching, they found a centre dedicated to the needs of children like Lewis. The Bangor Centre was developed by the School of Psychology at the University of Wales in Bangor. Half of all the UK's accredited behavioural analysts are based at the University of Wales. It is unique in its approach to the care, educational and behavioural support of young people with development disabilities and challenging behaviour. It is exactly what Lewis needs. It is exactly what he deserves.

Given the determination of Lewis' parents, community campaigners and allies, he will never be incarcerated in Portrane. He may even get to the Bangor Centre, in spite the State. But there will be another Lewis, and another, and another and another. They are out there now, all the Lewis O'Carolans, some quite literally beating their heads off the wall, some sitting sedated in mental institutions, lost and invisible to all, except those who love them and yearn daily for something resembling hope to be offered to their children by this State. All the vulnerable children and young people this Government and preceding governments vowed to cherish and to educate.

David Braybrook told the court in his affidavit: "Lewis is not a mental patient, but a child with autism who is entitled to an appropriate education." This Government disagrees. They have even elevated their disagreement to the status of legislation in the forthcoming Disability Bill. Shame on them. Shame on them.

If you would like to support Lewis attending The Bangor Centre, donations can be sent to: Lewis O'Carolan Appropriate Education Fund, Bank of Ireland, a/c 938613; Sort: 902979