ABA is once again being touted as an answer to the needs of autistic children, but is there consensus on this approach, asks Carl O'Brien
Every day, it seemed, Jackie Caruana's son, Denis, fell a little further out of the world. The words he learned, such as "mammy", "daddy", "goodbye", began to disappear. His singing and humming stopped. The games he'd play with his parents, such as putting his soother in his dad's mouth, vanished.
"All his playfulness and his sense of fun just faded away," recalls Caruana. "There was a voice whispering at the back of my mind, 'autism'. You'd see programmes on TV about it and you'd think, 'Please God, let it be anything but that.'" But the signs became inescapable. A turning point came when she slept alongside her son when he had a bad cold one night. He woke up in the early hours of the morning, pounding his head repeatedly into his pillow.
"I knew it wasn't normal behaviour," she says. "We realised we had to get him properly assessed." They needed help quickly, realising that early intervention was vital to prevent him slipping further away. But the waiting list to get an assessment was two years long. The speech and language therapy waiting list was six months.
Three years later, however, Denis has made remarkable progress. Children with autism were considered uneducable by education authorities until relatively recently. Yet his words have returned. He knows how to take on and off his shirt. He can take a drink from a glass, and put it back in a safe place. He tells his mother when he wants his nappy changed. Caruana has no hesitation in explaining this progress: Applied Behavioural Analysis (ABA).
"With ABA, he's learned how to indicate his needs. He tells me when he wants to go to bed, or if he wants a drink. These are phenomenal achievements," says Caruana, whose five-year-old son has been attending Barnacoyle pre-school in Co Wicklow.
"If he never got intervention, he'd still be flapping his hands, running around in circles, not able to communicate or express his needs. His life would be unbearable." It is this kind of startling progress that has quickly made ABA the most highly sought-after method of education available for children with autism.
Parents realise that, with early intervention, many children have a chance of escaping the most severe effects of the condition. For up to half of children with autism, it has proven to be extraordinarily effective, with many eventually moving on to mainstream primary schools. Because this teaching is usually carried out on a one-to-one basis, it is very expensive. However, campaigners maintain that failure to diagnose and treat autism from an early age results in even greater costs later on.
The Department of Education is more sceptical. It says ABA is just one of a number of treatment options and that there is no definitive evidence to support one approach being better than others. Privately, some senior officials have previously regarded it as a kind of voodoo science, with little to back up the ambitious claims for its success. The Department advocates an "eclectic approach" which involves a number of teaching techniques, including ABA, in schools where the pupil-teacher ratio is typically six to one.
THE RESULT IS a bitter war of attrition between parents, desperate to maximise their children's potential as soon as possible, and a Department of Education intent on retaining the power to decide what approaches should be available for special needs children.
The Ó Cuanacháin case - which grabbed the headlines this week when the High Court adjudicated on the issue of legal costs - captured just how fiercely this battle is being fought. The case, which began in the High Court in January 2006, involved a Co Wicklow couple who argued that the State had failed to meet their son's education needs by not funding an ABA programme, as recommended by an independent expert.
Over the course of seven months, different educational approaches were debated in forensic detail. Expert witnesses for both sides were brought before the courts, where they explained the various approaches in forensic detail.
Ultimately, the Ó Cuanacháin's lost the main plank of their case. While the court found that ABA was an appropriate intervention, it said the Department was free to decide what education approach should be provided for children with autism.
Adding to the parents' sense of injustice, they were directed by the court this week to pay their legal fees in a case estimated to cost a total of around €5 million, even though the judge accepted their son had been damaged by the State's delays in providing basic services for him.
As many as 150 parents who had lodged legal actions against the Department were waiting in hope for a positive ruling. For many, it was a week in which it felt as if the State had pulled down the steel shutters.
Autism was first identified more than 50 years ago, but for the most part its causes remain unknown. Those with autism usually have impaired communication and social interaction skills, often evident as early as 18 months. The condition incorporates a spectrum of disorders, from the very mild to extreme cases in which a person is not capable of independent living.
That is usually where the consensus ends. When the subject of services and programmes are addressed, there is a wide variation of opinion about the relative effectiveness of specific programmes and even whether any is truly effective.
The case for the "eclectic approach" advocated by the Government is highly controversial. It says it is an internationally recognised model, in operation in parts of the UK and US, and is also in line with the recommendations of the Government's Task Force on Autism (2001). This group concluded: "At present there is no definitive evidence that supports one approach as being better than others for all children with Autistic Spectrum Disorders, or supports a single approach for all aspects of development; nor is there evidence by which children could be matched to particular approaches."
However, there is little evidence so far for the effectiveness of this eclectic approach, and major doubts over the quality of teacher training. A recent survey by primary school principals found that 70 per cent felt their staff did not have the necessary training. The case for ABA, too, is hotly contested. However, a growing body of research seems to indicate that it can result in large, lasting improvements in cognitive, social and communication skills for some children with autism.
DR RITA HONAN, an expert from Trinity College and co-author of the Task Force report, says she is "continually stunned by the current Minister for Education's remarks that there is no 'preferred' method for teaching children with autism". In a letter to the Taoiseach, she recommended that he "respectfully advise the Minister to personally familiarise herself with published reports and scientific literature", rather than rely on inaccurate information.
But ABA is not a miracle cure. Even with early, intensive ABA intervention, half of children will continue to require intensive services into the future. It is also less suitable for high-functioning autistic children who do not need such a highly-structured form of education.
Given the lack of settled opinion in this area, and the entrenched views of the Department and parents, it is little surprise that cases have ended up in court. Yet both sides would probably agree that, even when presented with exhaustive "expert" evidence, judges are almost always poorly suited to make these decisions.
The breakdown in trust between both sides, however, means it is the courts where the battle over the future of education provision for children with autism will continue to be fought.
Meanwhile, hundreds of children like five-year-old Denis Caruana continue to try to make progress. His journey is by no means over. He still has significant problems with communication, speech, attention and social skills. But the progress he has made has been startling.
Like many other schools offering an ABA-approach to education, the long-term future of his classes in Barnacoyle pre-school in Co Wicklow are in doubt due to the lack of Government funding.
"I'm terrified of the consequences of changing what he's doing. It has been so successful. To me, for Denis to go anywhere where he would receive a less intensive education would be a disaster, because it would drastically reduce his teaching time," says his mother.
"We don't want ABA out of stubbornness. We want it because he's been diagnosed by professionals as needing it. We want to give him the best chance to be the best that he can be. It's the difference between living in an institution and living with his parents or his brothers and sisters into the future."