Stupid autism article in the Independent, and Research Autism are not helping

We were surprised to seeing the Independent running a story by Rob Sharp which can be summed up as ‘autistic child develops as she gets older (while parents invest lots of time and money in dubious treatments)’. This may be shocking to Independent journalists, but autism is a developmental difference, not developmental stasis. While it is always nice to see children developing, this ‘story’ is no more news than ‘pope revealed to be Catholic’ would be. Despite or because of an apparent lack of competent research, though, the story does find space to plug Defeat Autism Now and the Sewell Foundation: both organisations promoting dubious ‘treatments’ and ‘cures’ for autism.

More worrying, though, is what Richard Mills – quoted as research director for the charities Research Autism and the National Autistic Society – had to say about the dietary changes tried by the family. Research Autism is gratifyingly clear on Gluten Free Casein Free (GFCF) diets:

The theory behind this diet is weak and unproven. And there is limited evidence as to whether GFCF diets are actually effective.

Reviewers have found the evidence to be inconclusive. Despite this lack of evidence many people embark on a GFCF diet with high expectations that there will be beneficial effects.

However, these diets can involve significant inconvenience and cost, as well as significant limitations on what the individual can eat.

Because of this, we cannot recommend the use of such diets.

However we do strongly recommend that that further large scale, high quality research is needed.

However, what Mills said to the Independent was rather different:

“A number of parents have recorded improvements with dietary interventions, especially those that remove dairy products or wheat. But they don’t seem to impact on the autism, more on the behaviour. Similarly, the behavioural interventions are well researched in terms of reducing the symptoms of autism and, importantly, the child’s level of functioning? [but] even then, not across the board.” Mills says such treatments suit some parents better than others…

“Lots of people are doing the dietary intervention,” Mills continues. “I would never advise anyone against doing anything that might be helpful. While there are parents who record improvement, there is very little scientific support. That’s not the same as saying it doesn’t work. We need to do the study…There are strong feelings on both sides of the divide. Supporters argue passionately that [such intervention] is helpful. In equal measure, people oppose them as being a waste of time or money, or say that autism is not an illness and therefore isn’t something that is curable anyway. It does attract polarised views.”

This statement is not backed up by the evidence. As Research Autism make clear, the theory behind GFCF diets is weak and – although lots of people may be following such a diet – there is not good evidence of efficacy. There are also risks involved with withdrawing what are often staple, nutritious food from a child’s diet.

‘Strong feelings’ or not, it is not helpful to look at this in terms of equal ‘sides’. One ‘side’ – with the likes of Defeat Autism Now on it – either fails to understand or does not care about the evidence-base for particular interventions, and thus continues to promote dubious treatments for autism: even after they are shown to be useless and/or harmful. This position is wrong, and dangerous. Pointing this out – calling for an appropriate assessment of the evidence, and for careful consideration of what treatments are and are not appropriate for vulnerable children – does not just constitute taking a ‘side’. It is simply the correct, ethical position to take in this situation.

Research Autism do – by and large – a good job of assessing the evidence for particular interventions. This makes it especially disappointing that the Mills quotes in the Independent do such a bad job of explaining the evidence on GFCF diets and other interventions. We do appreciate that parents may be worried – even desperate – about the development of their children, and the often-inadequate support on offer in the UK. However, giving parents inaccurate or misleading information about treatments is not a helpful approach. Families can waste vast amounts of money and time on dubious treatments (the family discussed in the Independent were reported as having spent over £100,000). As Mills himself told the Mail

Parents often tell us they weren’t made aware of possible negative effects and many spend thousands, running up bills on credit cards, on treatments that don’t work…Many of the practitioners who sell these treatments are no better than snake-oil salesmen.

Hopefully Research Autism and the National Autistic Society will be having a word with Mills as to how he could more appropriately represent them, if he is allowed to play a similar media role in the future. By way of a start, I would suggest that Mills pays more attention to the information on the Research Autism site.

Thanks to Gimpy for forwarding us the link to the Independent story.

We have also discussed the GFCF diet, concluding that:

Some nutritionists might wish to persuade parents of children with ASD that there is strong scientific support for their dietary and other recommendations; however, there is no unequivocal support or even a preponderance of persuasive evidence of acceptable quality. Despite the claims for “mounting evidence”, there are substantial reasons to question both the leaky gut and opioid peptide hypotheses that underpin the GFCF diet for ASD. Similarly, despite assertions to the contrary, there is no substantial clinical support for the value of a GFCF diet in “reducing autistic behaviour and improving social and communication skills”.

BPSDB

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9 Comments

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9 responses to “Stupid autism article in the Independent, and Research Autism are not helping

  1. gimpy

    From The Independent

    Geoff Sewell and Simone Lanham were devastated when doctors told them their daughter’s condition was incurable. But after three years of research and treatments costing £100,000, they are seeing surprising results. Rob Sharp reports

    Surely this is a case for a consumer watchdog programme, £100,000! If you spent that much money on a treatment you would desperately be looking for evidence it worked so as not to feel a fool.

  2. The Milligan

    The more this garbage makes it to the public, the more we respond with truth and evidence – but we just don’t address the same number of people as the original sources of misinformation.

    What the scientific perspective needs is a method of addressing mass-media that is, at least, as effective as that of the pseudoscientific.

    I was under the impression that “the media” were required, by law, to present a balanced argument. Where is the balanced argument?

    I can’t help but feel that we should be consistently, and large numbers, pressing the mouthpieces for this kind of dangerous ignorance, to be issuing retractions in an equally public forum.

    Even if the retractions aren’t made (and we all know it’s unlikely that they would be), at least we’re letting the media know that they cannot simply present this kind of garbage without some form of reaction.

    Am I being naive? If I am, I think it’s a naivety we could all use a bit of – what do other people think?

  3. Unfortunately, I think the PCC is rather toothless – there’s a nice analysis of the organisation in Flat Earth News.

    There must be a better way of doing things – just not quite sure what that is at the moment.

  4. Kingkong

    “although lots of people may be following such a diet – there is not good evidence of efficacy”, I beg to differ. I have a duaghter who is autistic and I know what a difference the diet has made on her behaviour. This is no small matter. This diet is well praciticed in the US, and until we are given scientific sanctity in this country- we are willing to see how much damage it might do. This might be the point of view of an emotionally charged person, but you wouldn’t beleive the amount of parents who have tried this diet on their children and had amazing results. I hardly think thats insignificant, in terms of research. Futhermore I’m really surprised at the number of comments made about how HARD and EXPENSIVE the diet is. Unless youre a complete moron- its really not that hard and it really isn’t that expensive….

  5. Lizzie

    I would beg to differ on the thinking that diet does nothing. Many parents — and I’m one — think changing the diet makes a huge difference. An expert on this topic, Julie Matthews, also agrees. She’s written a fabulous book on “Nourishing Hope.” It’s been invaluable for me, and another autism mom told me that it saved her son’s life. Julie Matthews is an autism nutrition specialist like no other.

    Admin edit: links removed as the DAN! stuff triggered the filter.

    Might have given you the benefit of the doubt if you had included any evidence rather than anecdote but that is par for the course when shilling for DAN! – eh?

  6. It’s interesting to note that there have been previous examples of interventions that many families (and DAN!) claimed were strikingly effective for treating autism, but were demonstrated to be ineffective when good research was carried out. Secretin is a particularly striking example of this: it was hailed as an autism treatment with remarkable effects, but subsequently failed to show benefit when trialled.

  7. Jeannine Olson

    Hundreds of thousands of parents are applying autism diets with great effect — children are finding relief from autism symptoms. The top autism physicians in the US and abroad are recommending autism diets, supplementation, enzymes, probiotics and more — they are having profoundly helped many, many children. I would encourage you to visit ThoughtfulHouse.com and see their presentations on the site — see the digestive system of a child before and after diet application. These children are physically sick inside their bodies — have food allergies, holes in their digestive systems. Before you spout — research both sides. Most importantly, speak to parents with children on the spectrum — they are the experts!

    • Before you criticise us further for our alleged acts of omission, and in line with the candid nature of your own criticism although not as discourteously expressed, perhaps it might befit you to actually read more of the blog before commenting?

      We are au fait with the claims of Thoughtful House and the scientific rigour of their findings and pay it heed in due measure with its merits.

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