Failure to tackle autism epidemic is a scandal

 

SECOND OPINION:The story of autism in Ireland is one of criminally-late diagnosis followed by pathetically patched-together services, writes TISH DURKIN

WHAT KIND of Government sees clear evidence of a major epidemic, then sets about systematically stomping out all the best efforts to fight it?

An Irish government, that’s what kind.

The epidemic is autism. Indisputably on the rise throughout the developed world, autism affects, for instance, an estimated one in 110 American children, and perhaps one in 70 boys. Though there is no established cause or cure, one equation has become undeniably clear: early diagnosis plus strong intervention can add up to the difference between a productive human being who lives with autism, and a disturbingly detached dependant who dies a little every day from it.

The Government either does not know this, or does not care. Ask anyone who, like me, has a child with this brain disorder. The story of autism in Ireland is one of criminally-late diagnosis followed by pathetically patched-together services, and it’s a story demoralised parents are sick of telling each other between bouts of begging for help. If we want to keep our children from falling through the appalling cracks in our leaders’ commitment to them, it’s high time we told everyone else.

You may think that Ireland has yet to catch up with other countries in the fight against autism. Not so. Ireland is choosing, very deliberately, to run backwards. As of last Friday, the Department of Education and Skills (DES) had all but finalised its plan for our enforced national escape from the most promising form of education available to children with autism. This is Applied Behavioural Analysis (ABA). Internationally tested over a period of decades, ABA has by far the best track record for improving an autistic person’s ability to function, communicate, learn.

Initially administered one-to-one, ABA is also very expensive. Moreover, in Ireland, ABA has been poorly explained and thus widely misunderstood. Presumably all this is why, even before winning a landmark 2007 High Court case, the State had all but declared ABA the enemy – and why it is so eager to declare victory now. After three years of negotiations over the permanent status of 13 ABA schools, the DES recently gave these autism-specific education centres only about two weeks to accept or reject the terms under which it proposed to convert them into State special-needs schools.

At least in part for fear of the outright loss of their funding, boards of management at 11 of the 13 schools quickly voted to accept the deal, thus paving the way for the DES to dismantle what little serious autism education structure has been built in this country. Worse, given that most Irish children with autism – my son included – have never been near any of the ABA schools, it will kill the chance of building more.

In that landmark case, Mr Justice Michael Peart ruled that Seán O’Cuanacháin did not have a constitutional right to an exclusively ABA education. Quite properly, Mr Justice Peart refrained from addressing the question of ABA’s exact place in autism education, but the DES has made its answer clear: over in the corner, please. Already way too few and far between, ABA schools are on the brink of being “transitioned” into extinction. Originally funded as pilot programmes requiring annual renewal, these schools are about to gain permanent special-needs status – provided they agree to be stripped, albeit slowly, of their real special-needs staff.

The details are scandalous for those who understand them and tedious for those who don’t, but the net effect will be to diminish the role of educators, who have autism expertise, and elevate the role of State-school personnel, who generally do not. If autism rates were plummeting, such a process might be sensible. With autism rates climbing, it is shameful.

Thank God, then, that the most promising therapy can be done years before children even reach school age. To its credit, the Government does fund home tutoring for very young autistic children, something that most families could not dream of affording otherwise. Bizarrely, though, the DES conditions this funding on the parents’ hiring ordinary schoolteachers to do the tutoring. In other words, the Government actively pushes for autism programmes to be run by people who most often know nothing about autism. Here again, madness. It’s like the State agreeing to pay for heart transplants – provided they are performed by gynaecologists.

But hey, there’s a recession on. Isn’t everything getting cut?

Of course it is. But remember: it doesn’t cost anything to tell the truth. Even if the Government cannot fund optimal support, it ought at least to be honest about what optimal is. If intensive, one-on-one ABA education is the ideal, then more affordable steps can be identified toward that ideal. This is certainly better than replacing the gold standard with no standard and hoping that nobody notices. (Watch out, this is where the Government usually starts waxing on about how it’s best for the children to experience a rich bouquet of educational approaches, rather than being slavishly tethered to ABA. But it’s amazing how vaguely articulated those alternatives turn out to be, and how perfectly aligned with the interests of the teachers’ union.)

Enough. Parents, Government officials, and autism experts need to quit fighting and start putting their heads together to come up with realistic solutions, many of which are staring us in the face. ABA advocates need to get serious about cutting the cost of implementation. And the public needs to start paying attention as if this problem were everyone’s – because it is.


Tish Durkin is an Irish-American journalist