State failing children with autism

There is a group of families in this country who care little about how the Taoiseach bought his house, who gave him money or …

There is a group of families in this country who care little about how the Taoiseach bought his house, who gave him money or where he kept it. They deal daily with the reality that the State chooses to squander millions of euro fighting them in court rather than provide their children with a proper education.

During the first five years of this century, the Department of Education spent at least €20 million on legal costs associated with defending its refusal to provide a specific type of education, Applied Behavioural Analysis (ABA) for children with autism.

Eoin Dempsey from Co Meath celebrated his seventh birthday yesterday. His family is one of many who are convinced that the State's approach to their autistic children's education is causing actual damage.

As a result of a process of trial and error, Eoin's parents are now certain that their son desperately needs access to ABA. Their local GP and an independent psychologist agree wholeheartedly that Eoin urgently requires this kind of one-on-one educational therapy.

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The Department of Education, however, disagrees. All that is available for Eoin is a placement in a special unit attached to a mainstream national school. This is what Minister for Education Mary Hanafin calls the "eclectic" approach to catering for children with autism.

But for Eoin, and for many hundreds of children like him, it simply did not work. He became severely distressed earlier this year when faced with the prospect of returning to school. He suffered a series of epileptic fits which were diagnosed as stress-related.

His parents had previously managed to get him a few months of ABA treatment during the summer holidays, and Eoin had thrived. They were now confronted with a deeply unhappy little boy, who was deteriorating in front of their eyes as each day passed in his school placement.

Gráinne Dempsey, Eoin's mother, is herself a primary school teacher. She could clearly see the system was failing her son and causing him acute misery because of his inability to deal with or even understand what was expected of him.

The tragedy of this kind of experience for many children with autism is that it can lock them into a pattern of profoundly disturbed behaviour, sometimes for life.

Eoin's parents have now withdrawn him from school on medical grounds. They are providing him with a home-based ABA programme and he is making excellent progress. Despite this, the Department of Education has refused to assist the family with funding.

It is impossible to fathom why the State has such difficulty responding to the clear needs of families like the Dempseys. All they seek is an effective and appropriate education for their son. They tried what the department told them would work. When it failed, the State simply turned its back on them. The Department of Education's hostility towards the provision of ABA for children with autism is equally inexplicable. The Government's own Task Force on Autism (2001) recommended its use. TCD lecturer Dr Rita Honan, a member of the Task Force, wrote last week to Taoiseach Bertie Ahern pointing out its findings that ABA was "by far superior to other approaches".

In this context, she wrote, she was "continually stunned by the current Minister for Education's remarks that there is no 'preferred' method for teaching children with autism". She further recommended that the Taoiseach "respectfully advise the Minister for Education to personally familiarise herself with published reports and scientific literature, particularly around best practices for educating pre-school aged children with autism, rather than rely on information that is inaccurate, which is currently the case."

It is clear that the ignorance of both the Minister and her department is costing the taxpayer dearly. Even more seriously, though, it is condemning hundreds of children to a future which, as Rita Honan puts it, "denies the children their best chance at increasing their learning capacity, their IQ and future potential, and decreasing their autistic traits".

The current election manifestos hold scant comfort for these children or their parents. Fianna Fáil and the PDs trot out meaningless platitudes supporting the provision of "appropriate" education for children with special needs. Autism is not even mentioned. Fine Gael is also disgracefully vague, with again no reference to ABA. Only two parties, Labour and the Greens, deal with the issue at all, both committing themselves to the provision of ABA for children who need it.

The image of Yvonne Ó Cuanacháin weeping outside the Four Courts last month remains vivid in the public mind. She and her husband had just lost the marathon legal case they had taken on behalf of their autistic six-year-old son Seán, to secure him ABA therapy.

"The light of learning," Yvonne said at the time, "has been all but extinguished for Seán today." Come election day, voters should remember her words.