Once more on Autism in Scotland

"Some ‘autistic’ children aren’t ill, they’re just badly behaved" according to the Sunday Times. Following on from the silly scare story in the Scotsman (see my previous post) they try and restore a sense of balance. Let us disregard for the moment their error in regarding autism as an illness. By trying to debunk the autism epidemic nonsense put out by Action Against Autism they finished up arguing that many of us are faking it to excuse bad behaviour and get access to welfare benefits! I kid you not. Well done Bill Welsh and the mercury mafia in Scotland. You really did us proud this time. Here is my letter to the Sunday Times.

Dear Sir,
regarding Katie Grant's article on autism in Scotland (May 14, 2006) I wish to make the following points.

The figures quoted are based on a misreading of the statistics issued by the Scottish Executive. The record clearly states that, "It should be noted that prior to and including 2001 the data was based on pupils with Records of Needs only. From 2002 onwards the data includes pupils with Records of Needs and/or Individualised Educational Programmes."

So figures from 1999 to 2001 were collected according to much narrower administrative criteria than those from 2002 to 2005. If you view the figures on the Scottish Parliament's website http://www.scottish.parliament.uk/business/pqa/wa-06/wa0508.htm it is clear that the change in criteria for data collection caused an apparent doubling of autism in Scottish Schools between 2001 and 2002

But after allowing for the artificial boost that accompanied the change in data collection methods, percentage increases of 52% and 99% respectively between 2002 and 2005 continue to suggest a steady increase in numbers year on year.

The increases are significant and merit further investigation. But to argue for six-fold and four-fold increases based on these statistics, as happened in the original article in the Scotsman (9 May 2006), is wrong.

It is a shame that the Sunday Times took the original report at face value without checking the facts. But I find the spin that your reporter put on the story to be even more disturbing.

The best available epidemiological research in the UK, endorsed by the Medical Research Council, suggests that 1 in 166 people in the UK have an autism spectrum disorder (ASD). Scotland is probably better than than most parts of the UK in diagnosing and recording autism. But the figures in your report still fall far short of 1 in 166 for Scottish school children.

While I welcome Katie Grant's dismissal of the alarmist scaremongering that accompanied these statistics I must take issue with her interpretation that the statistics actually represent the adoption of the diagnosis by parents who find it a fashionable way to explain away their children's misbehaviour.

My son was diagnosed in 1997 at the age of 12 after a two year battle to get referred to a specialist. Diagnosis was low because very few people where qualified to give a diagnosis. Things are improving and the rate of diagnosis is increasing. This is not because parents are adopting the label. This is because NHS consultants are saying that these children meet the diagnostic criteria.

Nor is autism an easy way out for kids with behaviour problems. Pupils with an ASD are more likely to be bullied. They are more likely to be excluded and they are more likely to self harm or attempt suicide than pupils without an ASD.

Regarding access to benefits, autistic children are frequently refused disability living allowance because the system does not recognize the disabling aspects of autism in apparently healthy children. The costs to families in terms of additional expenses incurred and loss of earnings because you have to stay at home with your autistic child far outweigh any possible gains from the benefits system. To imply that we seek diagnosis for financial gain is deeply wounding and unworthy of you.

And while you may argue that your comments do not apply to the real autistic children, the fact remains that all the children identified in the figures from Scotland are "real autistic children" and there are many more who have not yet been diagnosed who suffer equally from ignorance, prejudice and misunderstanding. Your efforts to resist the damage caused by the anti vaccine fanatics in Action Against Autism have only served to compound that damage.