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”.