The journalist starts by describing the little boy whose educational provision is being decided, and claims that the Education Minister would "melt to his giddy charms and be humbled by his brave attempts to enter a world that often seems so foreign and frustrating to him." His Parents face a possible €2m legal bill, but the boy is unaware and sits playing a computer game "with a concentration remarkable for an autistic child.
He he! Doesn't the journalist, Gemma O'Doherty, know anything about what is and isn't remarkable for an autistic child! Playing computer games well is not exactly uncommon!
He is said to be able to speak using single words, but his parents say that his speaking at all is a dream come true.The article continues;
This week, they faced what many ordinary families would consider their worst nightmare -- the prospect of losing their home to pay off a staggering legal bill accumulated in their struggle to force the State to pay for a form of education for Sean known as ABA (Applied Behavioural Analysis). But instead of dwelling on worst-case scenarios and the prospect of financial destitution, their over-riding priority in this never-ending battle with the Minister for Education is as it has always been: the future of their only son and a determination to save him from a life-time of institutional care.
Brave dad Cian says;
How dare they imply that without ABA, autistic children will face life in an institution? That is utter nonsense.
"They can take the shirts off our backs. We've already had to remortgage our home and that's all we have. We don't have off-shore bank accounts or any other assets. Of course it is a huge anxiety hanging over our heads but our focus is on getting the right education for Sean and that will always be the case.Why Cian, are you insisting on this specific form of schooling for Sean? Why does it have to be ABA? Couldn't the education budget be better spent providing excellent schools for all autistic children, with appropriate levels of staffing, well equipped with learning resources, toys and computers, with speech and occupational therapists available to work with the children? Why pay for expensive ABA training from whatever organisations offer it? It is not the best form of education for autistic children. There is no evidence to say it is.
So then we have the inevitable depiction of Sean's descent into the hell of autism (sarcasm);
During that time, they have watched their little boy slowly emerge from the shell he crawled into when he was just eight months old.
The early signs were ominous. Sean changed from the happy-go-lucky baby he had been in the first months of his life to a withdrawn toddler increasingly making strange in the world around him.
He stopped making eye contact with the people he loved, and the simplest tasks, such as getting into the car or having dinner, turned into tantrum-filled episodes that took their toll on family life.
He dreaded people touching his hair, and became aggressive, banging his head off concrete walls and glass windows. At 18 months, Sean could no longer respond when he was called. At the age of two, he was diagnosed with autism, but the help Cian and Yvonne presumed would automatically kick in never came.
So many autism cliches do these paragraphs contain, autism as a shell - check, ominous signs - check, becoming increasingly withdrawn, lack of eye contact, tantrums, toll on the family, aggressive, head banging, - checkity check.Sean was diagnosed as having "mild autism" but was sinking deeper into the autistic state, no matter how much they tried to "pull him out of it."
How much easier would it have been if instead of trying to pull him out, they had tried to meet him where he is?
Well anyway, we're informed that he "moved from having mild autism to moderate" and his parents were suckered by the claims of the ABA promoters.
While critics argue that its success is over-hyped and it places a financial strain on education budgets, ABA is internationally proven to be effective in giving autistic children the skills their peers have by teaching them everything step by step. At least one in two children with autism reaps results from ABA and many go onto mainstream school.
We learn that Sean had 5 hours a week of "autism-specific training" later increased to 15 hours, provided by the Department of Education. He then went to an ABA school which was threatened with closure due to funding problems.
Where, I wonder, is the evidence for this international proof of effectiveness. Where, in particular, is the evidence for the astonishing and new to me claim of that last sentence? Is it possible this refers to the 21 year old Lovaas paper, which relied on physical punishment?
The parents claim that ABA was responsible for all sorts of great leaps in Sean's development. They sound like exactly the changes my own son has made in the past few years; increasing abilities, able to go into supermarkets and even on holiday which would have been difficult when he was younger. How much of that can be attributed to ABA and how much to natural progression? I don't doubt that a good individualised education is crucially important, but it doesn't have to be ABA.
So the O'Cuanachains went to court in 2006;
The 68-day hearing, which was seen as a test case for future provision of education for children with autism, became the longest of its kind in the history of the State. But it produced the worst possible outcome for the O'Cuanachains.
Although the High Court awarded the family €61,000 in damages for the State's failure to diagnose and treat Sean's condition when he was a toddler, it found that the Department of Education had no obligation to continue funding ABA units but could continue to follow its own "eclectic" approach to autism, which involves a number of different techniques.
I really pity this family. They have done all this because they really believe it's the best course of action for their child, but without evidence, there is no reason for the education department to do anything else. The mother says;
"No one comes in and interferes with you about the sort of education your child needs. The Department makes it look as if this is something we want for Sean rather than something he desperately needs. It's like saying someone wants heart surgery when they need it to survive. He has been assessed by experts and they have said this is the most appropriate form of schooling for him."
No, non-disabled children do not get to choose what type of state funded education they receive. They just go to one of the local schools, or they pay for it at a private school, or like us, they home-educate. That's the ultimate way of making sure no one interferes with the kind of education your children get. And no, Sean does not need ABA in the same way a person with heart disease needs surgery. That's an unfair comparison. Who are these experts who have said ABA is most appropriate?
They say they are considering "emigrating to a country where Sean's educational needs would be better met."
Oh where could this be I wonder; Canada? - they wouldn't take them, Canada's autism "advocates" have ensured that autism in Canada is such a feared and unwanted condition, that autistic people are barred from emigrating there. Would it be the USA? They think Ireland has expensive health care, whew. The UK? There are even fewer, if any, state funded ABA schools here.The mum says she fears "that everything Sean has achieved will be taken from him."
How? He's not going to go back in time. He will keep learning as he gets older, and if they concentrate on teaching him and living with him, he'll keep gaining skills and attainments.
"If Sean was a seven-year-old in Norway, he would be getting ABA no big deal. If he lived in New York state, it would be mandatory.
"Places like that have woken up to the fact that early investment saves so much further down the line.
Oh how I hate that, 'invest now and save later' argument. It's meaningless since there's nothing to back it up with.
"We have spent almost all of Sean's life begging and pleading for services that should be his automatic right, but we have no regrets. How could you regret fighting for your child? Anyone would do it. We are no different from anyone else."
Edited to add; there's a post up at one of my favourite blogs, about the pros and cons of ABA.
They are right. He does have an automatic right to an education. But not to ABA.