Imagine you have a child who's due to start school, but all the local schools are refusing to take her. Sounds improbable? Don't bet on it. For a lot of children with special needs, starting primary school is a case of no room at the inn. Their parents are left with nowhere to turn for help. Yes, the situation is improving and more money and extra resources have been allocated to special needs education, but parents continue to struggle.
Take autism, for example. The sad fact is that as far as autism is concerned, this State has been in denial - for decades. Indeed, autism was only officially recognised as a special-needs category by the Department of Education and Science two years ago. Despite the establishment of a task force on autism and a string of announcements about improved educational provision for autistic children, parents are still forced to go to court to seek an appropriate education for their offspring. It's reckoned that there are almost 200 legal actions being taken by parents throughout the State.
Groups of parents are finding that the only way they can obtain an appropriate education for their children is by building their own classrooms and employing and training teachers. Parents are also forced to arrange their own teacher-training and information workshops. Talk to the parents of autistic children and inevitably they'll tell you how reluctant the authorities are to give a diagnosis. "The problem is if they diagnose autism then they have to do something, so they delay as long as they can," says one parent.
"It's a scandal that the Department is spending millions on court cases, instead of doing the honourable thing, and helping these children," says Colm Fulham, the parent of an autistic son and founder of ICANDO (The Irish Children's Autism Network for Developmental Opportunities). "The Department has lost the plot," he says. Fulham's six-year-old son was diagnosed with autism at the age of three. "We were given no support and no information, not even a phone number," he recalls. "You're just left alone to deal with things as best you can."
Fulham, however, was left in no doubt that the long term outlook for his son - institutional care - was dire. He decided to take action.
He says that it was only thanks to the Internet that he was able to get any information on autism. There, he discovered the science of applied behavioural analysis (ABA) - which research shows is the most effective method of education for autistic children - and an Enniskillen-based practitioner, Dr Ken Kerr. Fulham located three other autistic children, built a special classroom behind his house and employed teachers, who were trained by Kerr. The school, which opened in May 1999, was assessed after six months by an independent psychologist, who rated it highly. For Colm Fulham, the change in his son, Oisin, is startling. "When he started at the school he had no eye contact. Now his eye contact is perfect. He hardly had any speech, now he can talk. He had severe behavioural problems, now he can sit in McDonald's and say what he wants. He can pick up a book, read it and understand it."
The school is costing £1,000 a week to run, and for the first 18 months was funded by the parents. Fulham is currently taking a High Court action against the Department, and has received interim funding to keep the school open while the case is pending. Colm Fulham argues forcibly that the ABA method of education, which is based on one-to-one tuition and repetitive behaviour, should be available to autistic children throughout the State. The fact that it is possible for them to make huge advances should mean that this type of education is an entitlement, he says. Meanwhile, down in Wexford, Susan Murphy, mother of five-yearold Evan, who is autistic, is at her wits' end. When he was 19 months old, Murphy was told that there was a problem with Evan. By the time he was three she was desperate. "Nobody would confirm what was wrong and we didn't get any support," she says.
Murphy says she has had to fight all the way for Evan's rights. Her life, she says, revolves around the struggle for Evan. Murphy has even been forced to give up her evening cleaning job to care for him. What she has achieved so far is very little, she says. An a special ABA unit in a local school is what she most wants for her son. As it is, he now attends a special-needs class locally and gets 30 minutes of speech therapy - "not autistic specific" - each week. Evan's main problem - compulsive behaviour, which dominates family life - is not being addressed. Murphy has become so frustrated that she, too, has decided to take court action.
"Autism," she says, "is a black hole with no sign posts and parents have been sucked into the void."
Parents argue that the reason the Department of Education is dragging its heels on introducing ABA methodology into special-needs classrooms is its cost. One-to-one tuition is expensive and the TEACCH method, which is used in Irish schools catering for autistic children, is preferred. Under new initiatives first announced in 1998, autistic children were promised special dedicated classes with a pupil teacher ratio of six to one. Parents, though, are fighting for specialised one-to-one tuition. TEACCH, says Kerr, offers cradle-to-grave support for autistic people. Done well, it can be excellent. However, research on ABA in the US shows better results: "47 per cent of autistic children can become socially and academically indistinguishable from their peers."
Kerr suggests that the two methodologies can work together. For young children, one-to-one tuition is essential, he says. "They won't have the skills to flourish in group learning. Once they acquire the pre-requisite skills, they can move into groups."
But what about the cost? Far less than the cost of a lifetime of care and supervision, he says. "If we can mainstream 47 per cent of special needs children - think of the savings in that."
Kerr is involved in a number of initiatives involving ABA, including a primary school in Co Kildare and a pre-school in Buncrana, Co Donegal. According to Kerr, autistic children need to start programmes as early as possible to avoid years of inappropriate behaviour.