With the numbers of autistic children rising so rapidly, it is time to provide the specialised care they need, writes Carl O'Brien.
Even though experts suggest that more than one in 500 families are affected by autism, there is still widespread ignorance about the condition. People with autism are characterised by a "triad of impairments" relating to social, communication and imaginative functioning.
A person with autism may appear able, verbal, but socially withdrawn or "odd". Or they may remain locked in their own world, speechless, self-mutilating or incontinent.
There are many theories about the dramatic increase in the condition's prevalence, which has seen the number of people diagnosed in many western countries rise almost tenfold over the last decade. Some say it is down to better diagnosis, others blame genetics or environmental factors, while some claim that vaccines have played a role.
What is clear, however, is that while the autistic spectrum may be broad, most children with the condition share the need for an education tailor-made to their way of learning. Most experts agree that these children benefit from a highly structured environment, and that placing autistic children in schools for those with severe learning disabilities is not suitable.
Demand among parents of autistic children for appropriate education services has grown in recent years due to increasing awareness that, with early intervention, many children can be rescued from the worst effects of the condition or have their diagnosis changed. Parents and support groups say that, even with some improvements and funding increases in recent years, the delivery of services is woefully incomplete and inconsistent.
The Government counters that, since 1997, it has provided additional funding amounting to €643 million in support services for people with intellectual, physical and sensory disabilities and those with autism.
The question of what constitutes appropriate education for an autistic child is still a hotly contested one, despite the findings of a special Government task force report in 2001. The report suggested that parents could either opt for the TEACCH system, which typically involves a six-to-one pupil-teacher ratio, or for Applied Behaviour Analysis (ABA), a more intensive one-to-one form of tuition which costs the State more to provide. In practice, many schools in which ABA is taught have been established following court battles or on foot of strong lobbying by parents.
"If the department is pushed hard enough, it may give money for this kind of home tuition," says Cormac Rennick, of the Irish Autism Alliance. "But there are still kids out there who are misdiagnosed or on waiting lists. There is nothing cohesive about the services and I can't see how they are planning for the future when there are no secondary school places for autistic children. It all seems to be a fire-fighting exercise."
The Department of Education points to the Education for Persons with Special Educational Needs Bill (2003), which provides a statutory guarantee of education services for people with a disability. It provides for individual assessment and specific education plans for children with special needs, which the Government says will help ensure the delivery of appropriate support services.
The gap between what parents want for their children and what the State is providing, however, is reflected in the number of court cases being brought against the State.
The Department of Education has confirmed it is facing 110 High Court cases in which parents claim that their children's inability to access appropriate education is an infringement of their rights. It has settled almost 130 cases since 1996.
The Minister for Education, Mary Hanafin, has said she is concerned that such legal cases are diverting money from the provision of services for children with special educational needs. In the last six years, the Government has spent at least €10 million contesting court claims in relation to services for disabled people. This figure does not include cases settled by the department before going to court or the full cost incurred by the Chief State Solicitor's Office.
"I feel it is important to highlight to solicitors that unjustified claims are an abuse of the legal process and will be at their own expense and not that of the State," Hanafin said, following a case last month in which an 18-year-old with Attention Deficit Hyperactivity Disorder failed in a case against the department for not providing appropriate education services.
However, disability groups and teachers' unions say the majority of the legal cases could be avoided if the State put enough resources into the area of special-needs education.
Support groups also say that taking a case to court is the last option for parents desperate to get the right education for their child before time runs out. "These are parents at their wits' end," says Rennick. "No one should think a parent is in any way frivolous taking these cases. It represents pure desperation."