VICTORIA WHITE: Autism is in your genes and isn’t something that can be taken away

There is no ‘one size fits all’ when it comes to autism as every child has a different constellation of disabilities, writes Victora White

THEY will be queueing from midnight next Wednesday night outside St Augustine’s Special School in Blackrock, Co Dublin. All hoping to bag a place in school for their mildly intellectually disabled children.

Even as I write this, I can barely believe it. Parents are being asked to queue up outside the school and will be given numbers. Their children’s applications will be considered in the order of their parents’ numbers, or as St Augustine’s put in writing to the parents, “according to the date and time” of their application.

It doesn’t matter how suitable they are for this particular school. If their parents can’t get out of the sack in quick time they can just go somewhere else. If they only have one parent and he or she can’t get anyone to mind an intellectually disabled child overnight I guess the kid can just give up on that place too.

Oh, and if the kid has autism as well as that mild learning disability, the odds get shorter. There are only a handful of autism places next year so if the first seven or eight in the queue have kids with autism, the others are out of luck.

The only reason I know about this is because I have a kid with autism and chat to parents of intellectually disabled children at special sports events.

Last year the same thing happened. Parents talked about getting into the queue in the early morning and being surprised by the competitive atmosphere.

One mother told me she’d offered to get coffee for the queue if they kept her place and was ignored. I guess that’s what desperation does to you.

I was so stunned I rang up St Augustine’s School to investigate. I was told this enrolment process was in place when the current headmaster got his job and would not necessarily be in place again this year. But it is. I have spoken to parents who were told that a better enrolment process couldn’t be found.

I suggest that a better enrolment process would involve the painstaking evaluation of competing academic and psychological reports followed by interviews.

This was what happened some years ago when I applied for a place in St Augustine’s for my autistic son, Tom. He was refused because his autism was considered too pronounced for the school. I was devastated. But I accepted their judgement and I still do.

Tom went to a school specially for autistic kids and he needed it.

Rigour was far from the norm in the allocation of resources to disabled kids in my experience, however.

I have been offered a place in an ABA school for Tom with no prior screening.

I have been summoned to an interview at an ABA school which never contacted me or returned my calls thereafter. Tom got his place in a mixed special school of which I had heard by chance and approached with a handwritten note.

Then again, even getting a diagnosis was a matter of chance. After two years in the local state psychological clinic we had no diagnosis but autism had been ruled out. Following a tip-off by a private art therapist, I sought a private diagnosis.

The National Review of Autism Services (2012) says diagnosing autism should take about three and a half hours but if I hadn’t had money, luck, and persistence who knows if he would be diagnosed to this day.

Into this mess step any number of private services claiming to treat and even “cure” your child of his or her genetic disability. I can’t count the number of mothers who have told me of the time and money they wasted on these “cures”.

One mother told me of her pain when a practitioner at one such private clinic told her that her son did not have autism and would catch up with his peers within a couple of years.

The unfortunate mother cracked open the champagne only to find, after spending about €3,000 on the said therapy, that her child was every bit as autistic as he was.

To add insult to injury, she then spent several thousand on the “biomedical” approach, feeding her son with up to 15 different supplements every day, and excluding wheat, soy, and corn. She says he was living mostly on rice cakes. There was no change in his condition.

One fine day she woke up and dumped the entire diet. She is very happy with the progress her child is making at a small ABA school. The National Council for Special Education’s recently published Comprehensive Advice on Autism Education shows children receiving one-to-one and/or group ABA or similar behaviour therapies for 13-plus hours a day making “statistically significant gains” compared with other children.

But it makes the point that we need further research to discover the interactions between IQ, the severity of the autism, and what type of intervention is appropriate. There is no “one size fits all” when it comes to autism as every child has a different constellation of disabilities.

There is, however, no scientific basis for the idea that ABA or any other behavioural method can “cure” a child of autism. Despite a total lack of evidence the media continue to gaily present behavioural regimes as well as diets and the Lord knows what else as “cures”.

The brilliant Belfast-based blogger Sharon Fennell writes scathingly of an RTÉ Morning Edition programme two years ago in which a certain William Shaw claimed to have “reversed” autism in some children with his “biomedical” interventions.

Meanwhile the Galway-based Child Development Centre was credited with effecting a transformation in an autistic child with listening, cranio-sacral, and biomedical therapies which do not have scientific backing, according to the UK research site (www.researchautism.net) recommended in our National Council for Special Education’s Comprehensive Advice on Autism Education.

I remember feeling really depressed when multimillionaire entrepreneur Sean O’Sullivan told RTÉ’s John Murray he was leaving Cork for the US where he could avail of intensive ABA education, a regime he claimed could make half of those treated indistinguishable from their peers.

Very sadly, this finding, first published in the 1980s, is not true. It is as untrue as the claim by the originator of ABA, Dr Ole Ivar Lovaas, that he could cure “sissy boys” of their homosexuality.

Ghastly, I know. It is questionable to discuss disability and homosexuality in the same context but there is this similarity: Autism, like homosexuality, is in your genes. It isn’t something which can be taken away to reveal the real person.

In the total absence of the “clear pathway” to diagnosis and services which the HSE promised us in the Progressing Disability initiative, first articulated in 2010, and any scientific procedure to find the right education for the individual disabled child, parents are out there foraging for help with their wallets open.

And some are dusting down their sleeping bags to camp out in Blackrock, Co Dublin, to get a school place for their disabled child.


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