Our daughter Jessica was diagnosed as suffering from autism when we she was two years old after we took her to see a doctor in Britain. The local health team who had been charged with caring for her told my wife and I that Jessica could not be diagnosed and suggested we wait until she was three.
I have, however, established using the Freedom of Information Act that she had been diagnosed as being on the autistic spectrum before we travelled to the UK, but this information was kept from us. Upon returning from the UK the health team confirmed the diagnosis and our nightmare began. There was no offer of a school place and very little support from the health team, mostly due to lack of resources.
All my wife and I could do was sing to Jessica as she fell asleep as this seemed to soothe her. The singing quickly turned to tears as we watched our angel sleep and felt powerless to help her. It was clear we were not going to be listened to and our only choice was to start a legal battle with the State to provide her with the services she so desperately needed. Therefore I was delighted to read in yesterday's The Irish Times that the overall thrust of the Task Force on Autism was to underline the primary right of parents to decide on what best met the needs of their disabled children and adults.
I became concerned quickly and my concern is simple: we already have this primary right - it's in the Constitution. It has been my experience and the experience of many others that the only way to access this right is via the legal system.
Will the task force report mean parents will no longer have to pursue their children's rights through the courts?
I think the answer to this lies with the Department of Education and how they now act when dealing with parents of children with disabilities.
If, as we have seen in the past, they are prepared to ignore the Constitution, what is to stop them ignoring the task force recommendations and continue to treat disabled children and adults like second-class citizens?
From what I have seen reported about the task force, there are a lot of promising ideas being put forward that I believe would be of great assistance to parents. I await with interest how the Department of Education implements these recommendations.
On a personal note, our nightmare appears to be nearly over. Jessica started receiving the method of education (Applied Behaviour Analysis) that has been recommended by two educational psychologists after many months of campaigning on our behalf and with assistance from many others.
However has our nightmare truly gone or is it possible that it will come back to haunt us and many others? I base my concern on the text of several letters sourced via the freedom of information that were sent from the Minister of Education to the Minister for Finance.
In a letter dated October 31st, 2000, the Minister for Education stated: "Ultimately, the report of the Task Force and related work taking place in my Department will determine what role, if any, ABA and other models should have in the State's long-term response to children with autism".
Does this statement suggest that he will forgo the recommendations of educational psychologists and instead offer a method of education that he is prepared to pay for? I am not suggesting that ABA is the only model of education that works for children with autism. However, going on the numerous calls I receive from parents seeking an ABA model of education, it appears that the Department of Education is still not listening to the parents of these children and has no intention of treating them in the manner reportedly recommend by the task force.
If the Department of Education continues to ignore the wishes of parents it must expect to see increasing numbers taking cases to the courts.
The Minister also stated in his letter: "To date, where cases seeking State funding for ABA or other unconventional models have come before the High Court, the court has invariably found in favour of the plaintiffs."
This should be a clear signal to the Department of Education that they must start working with and listening to the parents of disabled children or continue to be shamed in the courts.
I also note it has been reported that the task force is suggesting some reform of the Constitution and I would welcome this.
However, the only way I can see this being done is through a referendum that would allow the people of this country remind the State how they feel about the poor treatment of the disabled community.
As part of an ongoing campaign, mounted by parents and members of the media, a public meeting was held and I was delighted to discover that approximately half of all those that attended were not affected or related to a person with a disability These citizens simply turned up to show their support. To the people who have supported us and continue to do so, I would like to offer my deepest thanks and look forward to the day Jessica can thank you for treating her as an equal member of society.
Marc de Salvo is chairman of The Saplings School, which caters specifically for children with autism