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.
Dear Sir,
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 <brenda.diver@sunday-times.co.uk>
To: <mike.stanton@dsl.pipex.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.

Yours sincerely,

Mike Wade
Ecosse Editor


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.

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14 thoughts on “Autism – where’s the debate, Sunday Times?

  1. I am one of those parents she is talking about, for sure.

    I don’t know why I bothered with 6 years of speech therapy, 6 years of OT, IEP’s and teaching Ben language by visual cues.

    I could have just given him a “good whippin” every day until it took.

    Dang!

  2. The reason I blogged this so extensively is because some journalists just pick up a story and do not think about the consequences. Katie Grant is writing about abortion today. Autism is yesterday’s news to her. But it is autism everyday for a lot of people.

  3. I told you that you could not win against the idiot journalist.

    She writes what sells, and the paper likes to sell so they want more of the same, never mind the victims.

    Thank your lucky stars she has not written an article about trotskyist infiltration of the NAS

  4. That is what blogging is all about, getting the truth out in spite of the media.

    I appreciate your concern about my political past but I outed myself to Norman ages ago :-) Oh and the Mail on Sunday went after me once for harrassing that poor defenceless blind person, what was his name? David Blunkett!

  5. Let us know if she’s able to answer those points in some way. Ms. Grant sounds like someone who’s not very familiar with autism. It’s kind of silly for her to be offering new theories. It doesn’t matter that the theories are unpopular or offensive – but if they consist only of wild and unlikely speculation, obviously they will be shot down.

    I, for one, think that the prevalence of DSM-IV autism is about 150 in 10,000. But it’s difficult to make this determination because you can always include someone who was previously ‘almost autistic’ in the ‘autistic’ group and then the prevalence magically rises.

  6. Joseph
    if you include the broader autism phenotype you are probably right. In terms of health, education and social services we need figures that can guide policy makers. So 60 in 10000 require regular spending on services and accommodations, especially in childhood. As many as 100 in 10000 may require some services, some of the time, tailing off in adulthood but then rising again with old age. And your 150 in 10000 includes all those neurodiverse folk for whom autism never presents as an issue requiring support but does have a discernable effect on their lives. What do you think?

  7. And your 150 in 10000 includes all those neurodiverse folk for whom autism never presents as an issue requiring support but does have a discernable effect on their lives. What do you think?

    I come up with 150 in 10,000 from Baron-Cohen (2001). They would meet DSM-IV criteria. It’s quite possible many of these autistics function perfectly fine despite being autistic – that’s why they haven’t been identified. Many are probably identified as ADHD.

  8. I’m pleased you followed this up, and still dismayed by the Scotsman’s general attitude – they’ve had a few articles in the last few months that heavily favoured Action Against Autism’s views, including a piece about the “increased disruption” in schools due to the mainstreaming of autistic pupils in which the only comment/quote from anyone in the “autistic community” was a guy from AAA banging on about how rather than mainstream school, autistic kids should be offered biomedical treatments.

    “Bill Welsh, the chairman of Action Against Autism, yesterday called on ministers to carry out more research into the treatment of autism, rather than encouraging parents to send autistic children to mainstream schools.
    He said: “With over 3,400 children in pre-school and primary school in Scotland with the diagnosis of autism, the problem of disruption is only going to get worse until the Scottish Executive starts seriously investigating the causes and the treatments of autistic spectrum disorder. Bio-medical treatments for autism now exist and this should be being implemented immediately to assist these unfortunate children.” ”

    This riled me so much I wrote to the Scotsman, and the AAA’s “parliamentary advisors” – Murdo Fraser and Carolyn Leckie. Both the MSP’s replied and Ms Leckie’s reply was actually quite considered pointing out that she didn’t necessarily agree most of the time with Mr Welsh (she seems to want a proper scientific blind testing and increased research proflie for autism in general) , though Mr Fraser’s reply was pretty much a contemptuous brush-off. The Scotsman remained silent, but in the weeks afterwards published a full page article on the wonderful new clinic that AAA associates have opened in Edinburgh offering various biomedical “cures”. Its obvious there’s a sympathetic ear to the AAA cause working in the Scotsman and that autism is one of those subjects that allows some journalists to emote and opine rather than look at the science and rational fact.

    Keep up the good work Mike.

  9. To Mike Stanton. I have forwrded the followijng letter to Katie Grant:

    Letter From Sickened Mother

    Dear Katie,
    Congratulations on your excellent and most poignant work of fiction! ‘Some autistic children aren’t ill, they’re just badly behaved’. Well done! You have convinced us all and proven without a doubt, it is blatantly obvious you know very little on the subject you irritatingly refer to as an illness.
    As the mother of a five year old son, diagnosed at the age of three with core autism, I am still coming to terms with this diagnosis, and the realisation of its life long implications for my son and my family as a whole. Every aspect of his daily life is profoundly affected by this condition, causing great distress and anxiety, and placing considerable limitations on our families’ quality of life.
    Months after reading your article, I am still reeling from your obvious cynicism, and venomous accusations aimed at parents of autistic children, you would have us believe, have managed to obtain a false diagnosis of ‘autism’ for spurious reasons such as: “an excuse for their child’s bad behaviour”, for monetary gain in order to claim DLA and carers allowance, and most ridiculously, to be trendy or fashionable. Hundreds of parents of severe or profoundly autistic children are being turned down for the level of DLA they rightfully deserve and need, facing appeals, intimidating tribunal appearances and the exhausting task of ‘gathering evidence’ to support their claim, when they could be spending this valuable time and energy on their children.
    Without reference to any research, statistics or professional opinion, you are like a bull in a china shop, launching into an unsupported endless onslaught of extreme, ill considered and offensive statements. To state that children “showered with isms,” who are doing badly at school, or are unable to communicate, is nine times out of ten due to “family breakdown, community paralysis and hopeless parenting” is absurd, and based on nothing more than your own dubious speculation. You should take your own advice and take great care before brandishing about, “this worst kind of inflammatory sensationalism”.
    My heart sank when I read your statement: “It must surely be the worst kind of damage to label your child with an ‘ism’.” You must understand that parents cannot and do not wish to label their child with an ‘ism’. When your child is labelled with an ‘ism’, they have been diagnosed with a very real and serious condition, needing early intervention, provision and help in enabling them to reach their full potential.
    Autism is not diagnosed lightly, as your article implies, and children are not being showered with ‘isms’. This is a fact. Anxious parents are placed on long waiting lists and left in limbo for up to three years, before a thorough and comprehensive assessment is done to establish whether or not their child meets the diagnostic criteria in order to ascertain a diagnosis of ASD. Parents are then often left with little or no support in gaining access to the services and provision their child is in dire and immediate need of, at the same time going through a grieving process for the child they had so many aspirations for and took for granted to be ‘normal’, who they have effectively lost.
    Children cannot ‘fake’ autism. Any parents you are suggesting would seek a diagnosis of autism for suspect reasons would not get past their GP or health visitor and a misdiagnosis of autism is highly unlikely. I am sickened by your cynicism and angered by your extreme views, and although you attempt to balance these views with expressions of empathy for “those parents whose children really are on the autistic spectrum”, I am not convinced.
    I believe you MUST be well aware of the negative impact your article will have on the public perception of autism, and that the damage you have caused to the plight of families struggling to cope with the demands of their autistic child, in the face of a system that is failing them, cannot be undone.
    In you follow up article, ‘Autism, we need a debate’, in defence of your views on autism you say you are “sorry for the pain, but not for raising the issue”. Yet you did far more than raise the issue of rising autism statistics. The weight of your article was focused on your intent to convince your readers, on a very personal and critical level, that the “autism epidemic” is due to such things as, hopeless parenting, family breakdown, and most controversial of all, your assumption as fact, that there are unscrupulous families who are able to obtain a diagnosis of autism for monetary gain, while you yourself are ‘profiting’ from autism, by being paid for airing your grossly inaccurate and damaging views!
    This is not a debate. This is your own callous and contemptuous opinion, aimed at discrediting families with a diagnosis of autism, who you have insulted and alienated, and it is this you should be deeply sorry for.
    It is a responsible and concerned parent who seeks out a reason why their child, at the age of two has not learned to say mammy or daddy, and it is an irresponsible and damaging individual who seeks to persuade the public that there are families who are able to exploit this serious condition for all it’s worth. By casting doubt over the validity of every diagnosis of autism, you have by default, undermined the motives and validity of every family whose child has a diagnosis of autism. Including those you concede to be ‘genuine’.
    You refer to your concerns regarding those families with “genuinely autistic” children, who would benefit greatly from ridding the system of opportunistic parents obtaining a false diagnosis of autism, and suggest that “families faced with autism every day,” would want nothing more than to have these people removed from “any list”. Wake up Katie! As a parent of a ‘genuinely autistic’ child, “faced with autism every day,” why would I have any interest in weeding out ‘fictitious families’ I do not believe exist? You are inciting a ‘witch hunt’, serving the system with an excuse to ‘crack down’ further on all DLA claims involving autism.
    Are you able to concede to the possibility that you may be guilty of an insidious form of discrimination, against a disability which cannot easily be recognised as such, but can express itself by resembling ‘bad behaviour’?
    It has not gone unnoticed, that in your article, ‘Previous convictions,’ where you talk about your experience of meeting and interviewing a man who had devoted his life to the “mentally handicapped,” Jean Vanier. You openly profess to your insuppressible feelings of nervousness, squeamishness and disconcertion towards the ‘mentally handicapped’. Ending your article, with reference to your ideas about perfection having been subtly altered, you state, “I still find mental handicap disconcerting but, after having met Vanier, I no longer wish it was not there”. I cannot help but speculate as to what your ‘previous convictions’ were, and ask myself why you should be trusted to be objective on the subject of autism, when you have such questionable disconcerting feelings towards the ‘mentally handicapped’.
    I am not surprised you have become something of a hate figure. I thank those people who are not prepared to concede to your offensive views, individuals who suggest they should not have been published, and lobby groups that call into question your motives for writing your article. Those who live with autism can only be helped by “shouting down” those with extremist views such as yours, that only serve to damage and distract from the call for a much needed debate on the rising autism statistics.
    I am afraid to say that your “desire to question the reliability of statistical analysis in Scotland,” has been completely over shadowed and distracted from by your sickening views and determined desire to undermine these statistics, at the cost of maligning thousands of families affected by autism.
    I call for another debate. The debate needed on how any newspaper can be allowed to publish your own brand of “pulpit thumping” propaganda on autism. Newspapers should not ‘hide behind’ their journalists, and the Sunday Times Scotland must be held ultimately responsible for the inevitable and irrevocable damage and distress evoked by your ‘article’.
    You have supplied the bullets, Ms Grant, and they have fired the gun. Straight into the hearts of every family affected by autism, and without any concession of a public apology and retraction of your article, you should hang your hard-boiled head in shame.

    Susan Lord
    E-mail: susan-lord@blueyonder.co.uk

  10. As a concerned parent, I am writing with my concerns regarding the author and columnist, Katie Grant. (again).
    Most of us will be aware of her article –“Some autistic children aren’t ill they’re just badly behaved”, where in her role as a freelance columnist, she expresses her controversial views on the rising autism statistics in Scotland.

    The weight of her article was focussed on questioning statistics on autism by denying the validity of diagnosis, dismissing an “autism epidemic” by accusing parents of seeking a false diagnosis of autism for monetary gain via DLA and carers allowance, and stating that nine out of ten cases can be put down to family breakdown, community paralysis, and hopeless parenting etc.

    This is just a taste of Ms Grants’ insulting and hurtful article, which does her no justice by revealing her complete ignorance on the subject of autism.
    Needless to say, her article caused considerable offence to hundreds if not thousands of families affected by autism, evoking a huge response of complaints and rebukes from individuals, groups and professionals alike. Calling into question her motives for writing such an ill considered and extremely offensive article.

    As the mother of a five year old autistic son I feel very strongly on this matter, and was dismayed to discover that this woman with such cynical views on children diagnosed with developmental disabilities, is an author of children’s books!
    The possibility that the very people she is undermining could be lining her pockets by buying her books is a sad irony.

  11. I have received a response to my “Letter From Sickened Mother” from Les Snowdon, Sunday Times Scotland editor, via Colin Gray, beginning, “Thankyou for your letter, which is being considered for publication”.
    Although I am grateful for the acknowledgement, hopeful that my letter will be published , and appreciate ‘some judicious editing may be necessary’, I am dubious as to why they would consider resurrecting this contentious issue, ‘just as the dust seems to have settled’.

    You may be interested to know, I have expanded on my comments, and forwarded the following letter to the Publicity Department of Katie Grants’ publishers: Puffin.

    To Adele Minchin,

    Re: Katie Grant. Columnist and author of children’s books’.

    As a concerned parent, I am writing with my concerns regarding the author and columnist, Katie Grant.
    As the publisher of her books, you and your publicity department are probably aware of her article, “Some autistic children aren’t ill they’re just badly behaved”, (Sunday Times Scotland May 14th), where in her role as a freelance columnist, she expresses her sceptical and controversial views on the rising autism statistics in Scotland.

    Rather than taking the trouble to check or research any of these statistics, she resorts to using the default option of laying the blame at the feet of the parents.

    The weight of her article was focussed on questioning the rising statistics on autism by casting doubt over the vast majority of diagnosis. Accusing parents of seeking and obtaining a misdiagnosis of autism for monetary gain, via Disability Living Allowance and Carers Allowance, stating that, “what we should really be doing in the face of the “autism epidemic” is not showering “isms” on children, but finding out the true reasons they are doing badly at school and are unable to communicate. Nine times out of ten it will be family breakdown, community paralysis, hopeless parenting,” etc.

    Ms Grant also states that, “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”.

    While this could not be further from the truth, she then goes on to say, “Children unused to staring at anything static, or making conversation that does not consist of grunts, are bound to appear strange”.
    Given Ms Grants’ own concession that there are, “children who really do suffer from neurological disorders”, and the fact that there are many unfortunate autistic children unable to speak, let alone “cry abuse”, I find her reference to ‘grunts’ particularly cruel and disturbing.
    .
    This is just a taste of Ms Grants’ insulting and hurtful article, which does her no justice, by revealing her complete ignorance on the subject of autism, and callous disregard for the feelings of families who live and struggle with this condition everyday.

    Needless to say, her views caused considerable offence to thousands of families affected by autism, evoking a huge response of complaints and rebukes from individuals, groups and professionals alike. Calling into question her motives for writing such an ill considered and extremely offensive article.

    As the mother of a five year old son with autism, I feel very strongly on this matter, and was dismayed to discover that this woman with such cynical views towards children diagnosed with developmental disabilities, is an author of children’s books!
    The possibility that the very people she is undermining could be unwittingly, lining her pockets by buying her books, is a sad irony which churns my stomach.

    Although I have no doubt Ms Grant has already damaged her credibility, reputation and book sales, this is more than a question of possible ‘bad publicity’.

    While Ms Grant herself, considers she has become something of a hate figure, you must consider your own reputation as respected publishers, and I would urge you to inspect her article, consider it’s implications for the families of autistic children she has automatically undermined by casting doubt over the validity of autism diagnosis, and ask yourselves whether it is morally ethical for her to continue to profit from the sale of children’s books, while she holds such dubious and disconcerting views towards one particular group of disabled children.

    Regards,

    Susan Lord

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