Autism spectrum disorder (ASD) is a lifelong neuro- developmental condition affecting an individual’s ability to communicate and engage in normal social interaction. There is emerging evidence that intervening early in childhood can lead to behavioural improvements.
One intervention that receives a lot of prominence in the media and amongst families of children with autism is the gluten-free and casein-free (GFCF) diet. Many parents try this diet at considerable effort to themselves and possibly cost to health care services. A recent survey conducted by the National Autistic Society indicates that approximately 50% of families with a child with autism have tried a specific diet, usually the GFCF diet (Mills and Wing, 2005).
Recent reports (MRC, 2001; Le Couteur, 2003); Charman and Clare, 2004; Christison & Ivany, 2006) and a Cochrane systematic review (Millward et al, 2008) highlight the need to investigate the success or otherwise of a GFCF diet within the context of an adequately powered and appropriately controlled trial. There is a UK wide ASD collaboration of clinical researchers that has already successfully undertaken a series of research studies in preparation for a proposed randomised control trial to investigate the impact of the GFCF diet in young children with ASD.
The success of the recruitment and retention to such a large-scale study will depend on the co-operation and commitment of parents and key child health professionals across the UK. This means that we need to know the opinions of parents and professionals from across the UK, about dietary interventions in ASD to establish whether they would be prepared to take part in a GFCF dietary trial.
Our UK ASD collaboration has been funded by Autism Speaks (an international autism charity) to undertake a UK wide survey of parents of children with ASD, and key child health professionals.
The survey questionnaire ‘Parents and Professionals Attitudes towards Dietary Interventions in ASD’ (PADIA) will focus on opinions about:
• Autism research and in particular biomedical interventions such as the GFCF diet.
• The need to expand the evidence base for biomedical interventions using large-scale evaluation research studies.
The findings from this UK survey will help us identify any likely recruitment and retention difficulties so we can modify the design of the trial. They will also be very useful in designing and carrying out other research into biomedical therapies for children with ASD.
Taking part
Participation in the PADIA survey is voluntary. Questionnaire responses are anonymous by numerical ID. We are now actively recruiting parents and key child health professionals to take part in our PADIA survey. Parents of children diagnosed with ASD up to and including 11 years old, and key health professionals with experience of working with children with ASD are invited to complete our surveys. At the end of the survey, participants have the chance to enter into a free prize draw to win a laptop computer.
Our survey can be accessed electronically through visiting www.ncl.ac.uk/cargo-ne/PADIA.html. Alternatively, a postal copy may be requested by email padia@ncl.ac.uk, or telephoning our autism research team at Newcastle University on 0191 2821379. If you have any queries about our surveys or would like more information please contact us directly. We look forward to hearing from you.
Ann Le Couteur, Professor of Child and Adolescent Psychiatry
Jenna Charlton, Autism Research Team
Elizabeth Winburn, Autism Research Team
References
1. Charman, T., & Clare, P. (2004). Mapping autism research: identifying UK priorities for the future. London: National Autistic Society
2. Christison, G. W., & Ivany, K. (2006). Elimination diets in autism spectrum disorder: Any wheat amidst the chaff? Journal of Developmental and Behavioural Pediatrics, 27, 162-171.
3. Le Couteur, A. (2003). National Autism Plan for Children. London: National Autistic Society, Royal College of Psychiatrists, Royal College of Paediatrics and Child Health, and the All Parliamentary Group on Autism.
4. Medical Research Council. (2001). MRC Review of Autism Research: Epidemiology and Causes. London: MRC. Available at: http://www.mrc.ac.uk (accessed 6th October 2008).
5. Mills, R. and Wing, L. (2005). Researching interventions in ASD and priorities for research: surveying the membership of the NAS. Available at:
http://www.nas.org.uk/content/1/c4/78/84/Saturday_RichardMills.pdf
6. Millward, C., Ferriter, M., Calver, S., & Connell-Jones, G. (2008). Gluten- and casein-free diets for autistic spectrum disorder (Cochrane Review). Cochrane Library, Issue 2. Chichester, UK: Wiley.
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