The parents of a six-year-old autistic boy are bewildered at this week's court ruling on their son's education, they tell Carl O'Brien
They were just five simple words but, for Seán Ó Cuanacháin's parents, it was the moment of hope they had been praying for. Experts had told them their son might never speak. Autism had robbed him of the most basic skills to communicate and decipher the world around him. Other specialists speculated that his prospects were bleak, predicting a life-time of institutional care.
Then, in the car on a summer afternoon last year, he spoke up from the back seat of the car. "I'd like an ice-cream, please," the six-year-old said, as his mother drove past a shop near their home in Arklow, Co Wicklow. Tears welled up in her eyes as he spoke. After years of seeing him lose some of his most basic skills to autism, here was a powerful sign of the progress he was making. He was finally on the path to reaching his full potential.
"It might seem like a small step to many parents, but it was a massive breakthrough," says Seán's father, Cian. "He's now able to ask for things. He can say he's tired or hungry or that he wants to play on the computer." The key to his remarkable progress, they say, is an intensive form of education he has been receiving since the age of three, known as Applied Behavioural Analysis (ABA).
It's a form of teaching in which a particular action is broken down into simple steps which are repeated and learned. For up to half of children with autism, it has proven to be extraordinarily effective, with many eventually moving on to mainstream primary schools.
"It's not a cure for autism," says Cian, "but it gives him a way of expressing himself which he didn't have before. It has changed his life."
Yet, despite the progress he has made, the family has no guarantee he will continue to receive this form of one-to-one education beyond the end of the current school year following a High Court ruling this week.
What started out as largely unremarkable High Court case in which the Ó Cuanacháins sought continued State funding for an ABA placement for their son turned into the longest running hearing of its kind.
For 68 days the family and the Department of Education argued about whether the State should be obliged to provide funding for such ABA units in what many saw as a test case for future provision of autism-specific education.
Following a High Court ruling this week, the Department won the central plank of the case: it now has no obligation to fund such units.
While the court found ABA was an appropriate intervention, it allowed the department to pursue its own cheaper "eclectic" approach, which incorporates a number of teaching techniques, including ABA, in mainstream and special schools. It says this is an internationally recognised approach adopted in countries such as the US and UK.
The court awarded the Ó Cuanacháins almost €61,000 in damages against the Health Service Executive (HSE) because of delays in diagnosing his condition and not providing appropriate therapies.
However, it has left the family bewildered at a ruling which endorses the form of education he was receiving, but which says the State is not obliged to continue providing it in its current form.
Meanwhile, campaigners say the ruling is likely to have devastating implications for hundreds of children with autism on waiting lists around the country who are seeking access to ABA.
"The saddest part of all this is that I'm still meeting the children damaged by being forced into educational placements that don't meet their professionally assessed needs," says Marc de Salvo of Irish Autism Action. "They range from kids being dragged off the roofs of buildings to children biting their arms to the point of bleeding or just sitting crying and rocking because they cannot understand what the teacher wants them to do. All this because the department believes it knows best and wants to maintain the status quo."
FROM THE AGE of about eight months, Seán had begun the slow retreat into the lonely world of a child with autism.
He stopped being able to decipher the world around him. He became more and more withdrawn. He stopped making eye contact with his family.
He became acutely sensitive to touch, not allowing anyone to touch his hair or cut his fingernails. Trying to dress him in the mornings became a mammoth ordeal.
But the biggest frustration was not being able to communicate with those around him. Unable to express himself, or ask for the simplest things, he started to become aggressive, banging his head off the wall and injuring himself.
Despite getting a diagnosis for him as autistic at the age of two, no meaningful therapeutic services were available.
"I was ringing up service providers in tears, asking could someone please help us," says his mother, Yvonne. "We had no service for him and no one would tell us when he was going to get one. I knew he needed intervention and there was hope if he got it,. But after a year without anything, he had moved from mild to moderately autistic.
"You keep hearing that the first five years are crucial, yet we were being left at home with a child while time was running out."
In the absence of a school place, they eventually secured a home tuition grant from the Department of Education which allowed them to get a teacher who provided autism-specific education for five hours a week.
After finding out that other parents were getting up to 20 hours a week, this was increased to 10 and then to 15 hours almost a year later. The key to his progress, they say, began when they started an ABA home programme and, later, when he got a place at St Catherine's pre-school in Barnacoyle in Co Wicklow - part-funded by the department - which provides ABA education.
"He had been making progress with us at home," says Cian, "but with the help of professionals, he was making the kind of progress in one day that would take us weeks to achieve." The school, however, was under the constant threat of closure due to the lack of any guarantee of State funding. It was this lack of certainty, they say, which ultimately led the Ó Cuanacháins to take legal action in order to secure provision of appropriate education for their son.
The case took a massive emotional and financial toll on the family. They didn't realise initially that they were embarking on a legal journey which would take almost four years to complete and involve a High Court case where they would be subjected to the most rigorous and forensic forms of questioning.
"It was very traumatic," recalls Cian. "Yvonne was eight months pregnant at the time, while I had to take the time off work to be able to attend the case. We were effectively dragged through the courts. It was a deliberate and conscious act on their [ the department's] part."
"You were made to feel as if you were some kind of criminal in the way they treated you," says Yvonne. "Our only explanation is they were doing this as a warning to other parents. They were effectively saying to anyone who was thinking of going to court to vindicate their children's rights that this is what you'll face, so you'd better think twice about it."
About 130 other parents have cases lodged over the right to education for children with special needs. It is not now known how many of these will progress to full hearings.
The Ó Cuanacháins, meanwhile, are determined to provide whatever form of education their son needs in order to reach his full potential. His prospects, they say, are growing brighter by the year.
"The prospect of a child living in institutional care or living an independent life are largely dictated by the decisions made by education officials," says Cian. "We want to make sure he gets as far along the road of independent living, wherever that may be. Perhaps one day he'll be able to do his Leaving Cert. And if doesn't, that's fine too. We just want to give him every possible chance in life."