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.

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15 thoughts on “Once more on Autism in Scotland

  1. Hi Mike
    I really think that an analysis considering the changes in vaccination schedule in Scotland, if the data can be considered trustable the last 6 years, could give some clues about the susceptible children.In UK, Meningococal C conjugate was included in 1999, Pneumococal conjugate in 2001 and in 2004 the DTaP/IPV/HiB vaccine, besides all the other stablished vaccines.
    Do you know of some study about the effect- if any- of this?
    TIA
    María Luján

  2. None María. I understand the incidence of autism in the U.K. has been stable for a while now.

    I was hoping someone would address that article. It’s a serious charge to say that some autistic children are not really autistic. There’s no easy way to prove or disprove this, but clearly the author was just spouting conjecture.

  3. Hi Joseph
    This work

    http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=533883

    presents a study in the period 1998-2001 with the known problems of changes in diagnosis and impact of broadening criteria.
    What is interesting for me is when changes in slope of data took place, even when I accept that these data probably have the same problems that the educational data in USA.
    I also think that when a child has a behavioral problem is different than autism and doctors are very aware of this situation. I can consider a situation of overdiagnosis in the case of ADHD, but I do not think that this is similar to the ASD. I do not consider that ASD can be overdiagnosed, broadening in criteria seems a fact, but this is not a condition to overdiagnose if the DSMIV is used properly as a tool.
    María Luján

  4. Maria,
    there are no reliable figures for autism in the UK. Nobody was collecting the data til recently and now they are only collecting administrative data on school children. The one in 166 figure is based on Fombonne’s studies which showed rates to be high but stable.

    There is no known connection between vaccines and autism and no reasion to look for one. If there are biological triggers there are plenty of other toxins and pollutants out there that should be investigated first.

  5. I do not consider that ASD can be overdiagnosed, broadening in criteria seems a fact, but this is not a condition to overdiagnose if the DSMIV is used properly as a tool.

    In the absence of an objective medical test for autism, the boundary for the disorder does not exist. It can expand endlessly. There’s nothing to stop psychiatrists from saying, for example, that the bottom 5% of the population in socio-linguistic skills are brain disordered. With ADHD it’s already the top 10% in hypoattentiveness and hyperactivity.

  6. I think NTism is overdiagnosed,

    Unfortunately it is becoming another myth that there are always simple binaries, dichotomies, opposites, as if NT is to Autistic as black is to white (not that black to white is actually as most people would conceptualise it in this sort of semantic syllogism)

    No NT is a bit of a fiction really, no one is typical, there are just large waves of averages out there, but there are many other people, who suffer the same kind of societal oppression, opprobrium, denigration, and sometimes denial as autistics, there are many out there who are equally concerned to prove there is no dylexia, else dyslexia is caused by something that snake oil can cure.

    Goes for all the neurodiversities. Yesterday (figuratively speaking) this kind of article was being written about ADHD, Breggin was the folk hero, talking back to Ritalin, it will be something else tommorow.

    What remains is the two kinds of extremist thinking that yo yo here, panic exageration with its talk of epidemics, and extreme rebuttalls life of Brian style (he’s not the messiah he’s just a naughty boy)

  7. Thank you, Laurentius.

    I don’t like the term “NT” because the most non-autistic of my son’s grandparents had severe epilepsy as a girl and young adult, and that’s hardly “neurotypical”, now, is it?

    (But that’s me.)

  8. Indeed epileptic is not NT at all, I facilitate a neurodiversity group and that includes much beyond this trap of autism for there is no broader phenotype of autism that does not cross into many other territories to use the landscape analogy.

    The boundaries of Autism are political not geographical.

    If I had never been diagnosed with an ASD I could tell you about the diversity and richness of dyslexia, and how “we” invented picture thinking before Temple ate her first beef steak :)

  9. You are right Larry
    We could spend a lot of time unpicking the fallacies in her follow up piece. She is clearly on the defensive using arguments about free speech and opening up the debate.

    The fact is that Katie Grant did not check her facts. The 600% increase is a deliberate distortion of the truth by Bill Welsh. And, if we accept Fombonne’s figures from his West Midlands studies, prevalence is stable at around 60 in 10000. The figures for Scottish schools are still not there. Primary age is 44 in 10000 and secondary age is 26 in 10000. so there should continue to be an increase in numbers with primary age levelling off before the secondary age figures.

    I am going to push for a retraction based on irredeemable errors in the original piece. Not sure how to do it yet.

  10. I’m glad you’ve blogged about this, written to the Sunday Times, and will push for a retraction. Living in Los Angeles, however, I must ask: WHO is Katie Grant and WHAT is her claim to fame?

  11. Rupert Murdoch who owns the Sunday times and Fox News is probably the most powerful media mogul on erth. Gutter journalists are his specialty even in so called quality papers like the Times and Sunday Times, whose “quality” and intellectual integrity has suffered much in the Murdoch years.

    The UK has relatively speaking been a bastion of sanity in autism reporting compared to the mercury hype in the US.

    The NAS as the predominant National Association does not indulge in whipping up public frenzy over epidemics, and stays neutral on “medical” theries unlike the equivalents in the US pushing the bio-medical model.

    In Scotland this sanity is being undone by a vociferos lobby that has got a toe hold in the devolved Parliament.

    The extreme cure/epidemic lobby is gaining ground with a lot of finance behind them, and it seems the poison is spreading fastest in Scotland where a conference similar to the uninformative snake oil fests familiar from Autism One etc, was recently convened there

  12. Katie Grant is a children’s author – historical fiction, and an established journalist who writes for the Scotsman and the Sunday Times as a freelance. She is a Roman Catholic, supports traditional family values and the Conservative Party.

  13. Although the dust may have settled on this matter, my anger and dismay has not.
    I Have forwarded the following to both Ms Grant and the Sunday Times Scotland.
    It is currently being, ‘considered for publication’.

    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.

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