Autism – where’s the debate, Sunday Times?
Two weeks ago Katie Grant, writing in the Ecosse section of the Sunday Times, questioned the validity of recent statistics that charted the growth of autism in Scottish schools. She did not believe the headline figure of 600% as reported in the Scotsman and objected to the way it was being used by anti vaccine pressure group Action Against Autism, for "scaremongering in the most sensational way."
I share her disbelief and her objection to Action Against Autism. I am not a journalist. But when I read something that I find hard to believe I try and check the facts. In this case I checked the source and discovered that it did not support the 600% figure. If Ms Grant had done the same she could have used her column to expose Action Against Autism's dishonest use of the figures for "scaremongering in the most sensational way."
But Ms Grant did not check her facts. Instead she replied with her own brand of scaremongering, thus.
To the great distress of parents whose children really are on the autistic spectrum, the condition has been adopted by many other parents on behalf of children who are not ill, just badly behaved. If a child is described as “autistic”, nobody can be angry if he or, more rarely, she throws a tantrum at school or consistently irritates the neighbours.
Children know that if they suffer from some kind of behaviour “ism”, good things result: reduced expectation, indulgence instead of punishment, safety from even the gentlest rebuke. At the first sign of a teacher’s impatience, the child can rush home and cry “abuse”. Autism, a serious condition when real, is being exploited by others for all it’s worth.
And it’s worth quite a lot. A diagnosis of some kind of behaviour “ism” might result in £80 a week disability living allowance. If a parent has to become a carer, it is worth even more. I stress again that there are families who absolutely need and deserve the state’s help with children who really do suffer from neurological disorders, but there are also families whose children are not ill and therefore deserve no such help.
Ms Grant offered no evidence to support this accusation. And parents of really autistic children were angered and distressed. The Sunday Times was overwhelmed with letters and complaints. I wrote a letter pointing out that the statistics were wrong and rebutting her unfounded accusations. My letter was not published. But I am in good company. The Sunday Times also ignored letters from the National Autistic Society's chief executive and NAS branch officers from Scotland.
However Ms Grant did write a follow up piece the week after in which she posed as the injured party! Apparently we were all guilty of trying to shoot the messenger because we did not like the message.
I have become something of a hate figure for those who are not even prepared to concede that this matter should be debated.
If sceptics about official statistics are shouted down, there can be no debate.
Those who live with autism can only be helped by opening up the debate. Shouting down those with unpopular views will do them no favours at all.
Ms Grant wants a debate. I offered her one in another letter.
on May 14 you published an article by Katie Grant in your Scottish edition in response to reports that autism in Scottish schools had grown by 600% since 1999. Naturally your journalist was sceptical and suggested that the increase could be explained by misdiagnosis because "Some ‘autistic’ children aren’t ill, they’re just badly behaved."
Ms Grant did not cite any evidence to support her claim which attracted a largely hostile postbag. I posted a letter pointing out that the six fold increase was the result of a change in recording procedures. I apologize for repeating myself but I wonder if anyone apart from the auto-responder actually read my email, which contained this.
"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."
I was surprised to read Ms Grant's follow-up this Sunday (May 21) in which she claimed that "My desire was — and still is — to question the reliability of the most recent statistical analysis of autism in Scotland." Has she read my email? Has she taken the elementary step of checking the sources for the alleged 600% per cent increase? Obviously not as she still writes "If sceptics about official statistics are shouted down, there can be no debate."
Let me repeat once again that the official statistics do not support the headline figure of a sixfold increase in autism. This is a straw man erected by the anti vaccine pressure group, Action Against Autism, which was reported uncritically by the Scotsman and accepted by Ms Grant.
Ms Grant cites Tom Berney in support of her claim that there is over diagnosis of autism. I have read Tom Berney's original paper. In it he welcomes, "the development of effective and internationally recognized research instruments for autism [like] the Autism Diagnostic Interview."(ADI) A revised version of the ADI was used by Professor Eric Fombonne in his epidemiological study of autism in Staffordshire between July 1998 and June 1999. He found a prevalence rate for autism of 62.6 in 10000. A follow up study in 2002 found a rate of 58.7 in 10000. The Medical Research Council has adopted a figure of 60 in 10000, splitting the difference.
The alleged epidemic in Scotland's schools fall far short of these figures. The statistics show that 44 in 10000 primary pupils are diagnosed autistic and the figure falls to 26 in 10000 for secondary pupils. So the real story is that, despite improvements, a significant number of autistic children in Scottish schools are still being missed.
So, these two articles by Katie Grant have no basis in fact and would have to be retracted if the Sunday Times was a peer reviewed scientific journal. Ironically, last week's edition of the Sunday Times includes a piece by Brian Deer decrying the falling standards of medical journals.
I do not expect you to publish a retraction. But I would welcome the opportunity to publish a reply to Ms Grant. Her most recent piece was entitled, "Autism: we need a debate." She has proposed and seconded her motion. I respectfully request the opportunity to oppose.
This drew forth the following attempt to patronize me.
——– Original Message ——–
Date: Tue, 23 May 2006 14:55:59 +0100
From: Diver, Brenda <email@example.com>
Dear Mr Stanton,
Thank you for writing to the Sunday Times. I am sorry you have been upset by Katie Grant's article about autism statistics in Scotland. Opinion pieces such as this are designed to be challenging, but when they touch on such emotive or controversial subjects inevitably some readers can find them hard to bear.
I would, however, defend Katie's efforts. She wished to express her genuine scepticism about the huge rise in reported cases of autistic spectrum disorder in Scotland. But in doing so she went to some lengths to distinguish between parents whose children "really are on the autistic spectrum" and those whose children were not, yet who might be included in the latest figures. Her sympathy for the parents of autistic children was apparent in the piece, and I know from talking to her that she regrets any distress which has been caused.
You might be interested to know that we have received a number of other letters on this subject. We hope to feature some of them in our features section this Sunday.
So, no debate then. And no answer to my last letter which read
Dear Ms Diver
I was not upset by Katie Grant's article. Nor was I challenged. Neither did I find the article hard to bear. I do find it hard to understand why nobody at the Sunday Times is able to respond to my specific points.
1. The premise for Ms Grant's article is that the official statistics indicate a 600 percent increase in autism diagnoses among secondary school children in Scotland. This premise is not supported by the facts.
If Ms Grant cares to check the statistical source for that claim, as I did, she will find that 600 percent is a gross exaggeration and a deliberate distortion of the figures by a tiny pressure group funded by Bill Welsh. His group, which was called Action Against Autism and is now the Autism Treatment Trust, claims that there is an autism epidemic caused by vaccines. Like Ms Grant I reject their claims. Unlike Ms Grant I also reject their maths.
2. Ms Grant has suggested that the increase in reported cases includes children who are not autistic. She offers her own theory to explain this but offers no evidence at all to support her hypothesis. My point is that the hypothesis is not necessary. There is general agreement among professionals that autism is under diagnosed. Scotland probably has the best record for diagnosis in the world and its figures still fall short of the internationally accepted figure of 60 in 10000.
3. I do not doubt Ms Grant's sympathy for parents of children who "really are on the autistic spectrum" I just want to point out that until she can provide evidence to the contrary, that includes all of the children in the official statistics plus a lot more who are currently being missed by the system.
I am posting a link to this blog to the Sunday Times. I am opening up the debate. Ms Grant, Ms Diver, Mr Wade and anyone else at the Sunday Times is welcome to join in.