'We are our children's voices'

Spending money on services for people with autism now will save more in the long run. So why are families still waiting for the courts to determine their eligibility, asks John Downes

Every day, James McNabb leaves his son Colum at his Galway school safe in the knowledge that he has done everything in his power to insure he gets the education he deserves.

The trip from his home in Moycullen to the Abalta school in Knocknacarra, which takes about 20 minutes by car, is nothing compared with the battles he has fought to get to this stage. McNabb has had to use every means possible to secure the necessary supports for his son, who has autism.

This culminated in a High Court case two years ago - and a settlement whereby the Government agreed to fully fund the school until the Government found a viable alternative.

But McNabb's case is hardly an isolated incident. According to Department of Education figures, it is facing another 65 court cases involving the provision of education for autistic children. This is on top of 121 cases that have been settled since 1996 alone.

In addition, a recent high-profile case involving the O'Hara family in Co Meath, led the family's four autistic children to be temporarily placed in State care - against the wishes of their parents, Pádraig and Mary. The couple had previously given media interviews highlighting the lack of State support for their children and claimed at the time that they were being "punished" for doing so.

In truth, the issue of what constitutes an appropriate education for autistic children remains the subject of some debate. As individuals suffer from a range of impairments, each has different needs.

A Government task force report in 2001 suggested parents could either opt for a system involving a typical pupil-teacher ratio of six to one, or for Applied Behaviour Analysis (ABA), a more intensive one-to-one form of tuition. Crucially, the latter costs the State more to provide.

The Department of Education points out that it currently makes provision for the educational needs of autistic children in a variety of settings.

These include placements in special classes for children with autism, integration into mainstream school, as well as places for 151 children in eight ABA units - with another three units catering to 24 children funded as home programmes. ABA units are frequently established as a result of lobbying by parents or High Court proceedings.

Not every autistic child needs a place at an ABA unit. But Marc De Salvo of the Irish Autism Alliance says the fact that there are extensive waiting lists for places in ABA schools belies the commitment of the Government to providing the most appropriate education for children with autism.

Autism is a "spectrum of disorders", he says, with each individual displaying different levels and types of symptoms. These include verbal and non-verbal problems, delayed cognitive skills, repetitive behaviour and problems with social interaction.

"The example I always give people is that nobody ever taught you to shake hands. It is a skill you can learn from your environment - from watching and copying others," he says. "But children with autism need to be taught each skill."

If you can diagnose autism in a child as young as two years old, it is sometimes possible to reduce the level of traits which they display so that that they are indistinguishable from their peers, he points out.

Indeed, many children who start out in ABA units eventually succeed in making the transition to mainstream schools. While this does not mean they are "cured" of autism, it does indicate the successes which adequately-resourced support services can provide.

This could also end up saving the State significant amounts of money in the future, as not only do the children improve, but their future reliance on resource-intensive supports is decreased, he points out.

The number of incidences of autism here has risen dramatically in recent years, partly as a result of increased diagnosis, De Salvo underlines. So while Government spending has increased significantly in recent years, the fact is that this needs to increase "by a factor of 10" when compared with previous years, he believes.

Significantly, if an autistic child is not treated correctly, not only do they not improve, but frequently their symptoms get worse. "It is quite simple - if you invest in a young child with autism, you will see the benefits," he says. "What we should do is, every child who is diagnosed with autism should go into a specialised unit. The key is how long they have to spend there," says De Salvo.

For its part, the Department of Education says its inspectorate is currently finalising a review of the services of being provided in ABA units as part of a wider review of educational provision for children with autism. When complete, it will inform policy in the area in the future. It is also exploring how the resourcing of such units might be done on a more systematic basis.

The Department is also spending in the region of €300 million on special education provision this year, and is continuing to develop the network of special educational provision for children with autism.

It also points out that significant progress has been made since 1998, when autism was first recognised as a distinct educational need.

Meanhwile, McNabb is under few illusions as to what his court battle has meant for his son, who is now seven years old.

Colum is making real progress within the Abalta school, and is able to communicate his needs in a more appropriate way. Where before he might have thrown a temper tantrum, this is no longer necessarily the case.

But it is "ridiculous" that so many parents have to go down the legal route to make sure they do not have to sit and watch as their child not only fails to develop, but actually regresses.

"It was extremely gruelling to have to go through that," McNabb says. "But at a deeper moral level, we had to do it. We are the voice for our kids. If we don't do it, then who will?"