Nutrition – Part of the Puzzle?
As chair of Dietitians in Autism (a subgroup of the paediatric group of the British Dietetic Association, and part of the mental health group of the BDA too), I’m often asked ‘I’m a dietitian new to working with children or adults with autism – where do I start?’ I thought it might be useful to share my typical response – partly so I can direct enquiries to here rather than typing it out again and again, and also in case it helps dietitians from other countries or indeed other health professionals.
Autism is a complex condition with lots of unknowns – we don’t really know what causes it, or why it’s becoming more common, we don’t know yet whether diet is an effective treatment, and we don’t know which approaches are best to help manage some of the problems that can occur alongside autism.
Something that is clear is that each individual on the autistic spectrum is unique and has their own needs which need to be assessed on an individual basis. As professionals we may need to alter our clinic setting to make it comfortable and safe for someone with sensory issues, we often need to set aside longer appointment times, to get help from other professionals as to ways in which to communicate effectively via visual aids, and to learn to try to see the world through an autistic lens, to get to the bottom of dietary and feeding problems.
Becoming an expert in the dietary management of autism is a steep learning curve – one which I’m still on – even after 7-ish years of working with a large number of patients on the autistic spectrum, attending autism conferences and reading all the websites and books on the subject that I can get my hands on.
This is a run down of how I would start if I were new to autism as a dietitian.
NB: I use the term autism interchangeably with autism/autistic spectrum disorder/condition (ASD/ASC) to encompass autism, PDD-NOS and Asperger’s syndrome. For more info on the different diagnostic labels look here.
NB2: It’s useful to know that the preferred terminology when referring to non-autistic people is ‘neurotypical’ (instead of ‘normal’).
1. Browse these online resources To gain an initial understanding and general overview of autism:
- NHS Education for Scotland Learning Resource on Autism Spectrum Disorders – for health professionals
- Introduction to Understanding ASC online course – by the Safeguarding Children E-Academy (costs £30)
- National Autistic Society website – key pages of interest are: General info for health professionals – Diet and supplements – Dealing with restricted diets – Dealing with overeating
2. Read these British Dietetic Association resources:
- BDA Professional Consensus Statement, 2008 Dietary Management of Autism Spectrum Disorder
- Autistic Spectrum Disorder chapter in Clinical Paediatric Dietetics (chapter written by me in 2006 – new edition being written now -by the way – I get no commission for extra sales!)
- BDA Food Fact Sheet – Diet and Autism
- Numerous diet sheets and presentations on the members only side of the BDA website under Groups –> Dietitians in Autism
3. National guidance to be aware of:
- SIGN National Clinical Guidelines 98 Assessment, diagnosis and clinical interventions for children and young people with autism spectrum disorders (2007, Scotland)
- NICE Clinical Guidance CG128, Autism: recognition, referral and diagnosis of children and young people on the autism spectrum (2011, England and Wales)
- NICE guidance: Autistic spectrum conditions: diagnosis and management of autistic spectrum conditions in adults – in development – due to be published in 2012
- NICE guidance: Autism – management of autism in children and young people – in development – due to be published in 2013
- The Autism Act 2009 (Govt – England and Wales) – legislation passed to make provision about meeting the needs of adults with autistic spectrum conditions
- Towards ‘Fulfilling and rewarding lives’: The first year delivery plan for adults with autism in England – Department of Health, 2010 – relates to fulfilling the autism act
- The National Autism Plan for Children – guidelines on identification, assessment, diagnosis and access to early interventions for pre-school and primary school age children with autism. Published in 2003 by the National Autistic Society in collaboration with the Royal College of Paediatrics and Child Health and the Royal College of Psychiatrists.
4. Read these Key professional guidelines regarding treatment of GI disorders in children:
- American Academy of Pediatrics: Evaluation, diagnosis and treatment of GI disorders in individuals with ASD: a consensus report (in Pediatrics vol 125 supp 1 p1-18, 2010, Buie et al)
- Accompanied by: Recommendations for Evaluation and Treatment of Common Gastrointestinal Problems in Children With ASDs (in Pediatrics vol 125 supp 1 p19-29, 2010 Lewis et al)
5. Read about the Common feeding problems in children with autism and strategies to help:
- The BDA professional consensus statement, and chapter in Clinical Paediatric Dietetics – as above in 2.
- Book – Can’t Eat, Won’t Eat: Dietary Difficulties and Autistic Spectrum Disorders: Dietary Difficulties and the Autism Spectrum. Legge B (2002) Jessica Kingsley Publishers – a book written by a parent of a child with ASD and feeding problems, collating a survey she carried out of other parents and also tips from professionals.
- Book – Eating for Autism: The 10-step Nutrition Plan to Help Treat Your Child’s Autism, Asperger’s, or ADHD. Strickland E (2009) Perseus Books – written by a US dietitian (website www.asdpuzzle.com)
- Autism and Feeding Problems: Strategies to Help Children with Autism Expand Their Diet – 2 hour downladable audio training course by Elizabeth Strickland, US RD, based on her book above $60
- Some of the resources I have written previously in conjunction with Dietitians in Autism are here. They are a few years old now though, and due to be updated.
6. Read about sensory processing difficulties, which often contribute to eating problems in autism:
7. Get familiar with different behavioural and educational techniques:
- Visual supports – individuals with autism often find oral communication alone confusing. Visual supports vary from written timetables to picture cards for communication to using a kitchen timer to count down to an activity finishing. Effective use of visual supports can often make profound changes to an individual’s behaviour, and reduce their anxiety.
- Social stories – individualised stories written in a specific way that can be used to help overcome anxiety around different situations and therefore indirectly to improve eating and feeding behaviours – particularly powerly for some children and adults with autism and also used for neurotypical children too.
- ABA / Lovaas – applied behavioural analysis – often incorporated into behavioural management and educational programmes
- TEACCH – another behavioural approach aimed at reducing undesirable behaviours
- Son-rise – an approach based on a loving and accepting attitude, and intensive interaction with a child. Son-rise also advocates GFCF diet and different supplements.
- Earlybird – the National Autistic society course for newly diagnosed pre-school children covering different aspects of behavioural management – generally very well received.
- The NAS list of all the different potential interventions – there are many – from horse riding and dolphin therapy to coloured lenses in glasses.
8. Get familiar with Popular diet-related ‘treatments’ for autism and some of the books and organisations that support them
NB The inclusion of any book or website or resource here does not mean I recommend or agree with the approach – but it is useful to be aware of them, keep an open mind, and use your own professional judgement as to where you stand on their use (general UK dietetic consensus is very conservative).
Also please be aware that the notion that autism is in any way treatable or curable is unacceptable to many who see it as a natural part of our neurodiversity. Some draw parallels to the now completely abhorrent viewpoint in the past that homosexuality was a ‘disorder’ that could be cured. For this reason many also prefer the term autism spectrum condition (instead of disorder).
Gluten free and casein free diet advocates and resources:
- ESPA – Education and Services for People with Autism – previously the Autism Research Unit attached to Sunderland university – home to researchers Paul Whiteley and Paul Shattock, who research into gluten and casein free diets and urine peptides.
- Book – Diet Intervention and Autism: Implementing the Gluten Free and Casein Free Diet for Autistic Children and Adults – A Practical Guide for Parents. Le Breton M (2001) Jessica Kingsley Publishers
- Book – Eating for Autism: The 10-step Nutrition Plan to Help Treat Your Child’s Autism, Asperger’s, or ADHD. Strickland E (2009) Perseus Books (written by a US dietitian – as above)
- Defeat Autism Now! (DAN!) was the ‘biomedical’ approach to ‘treating’ autism, developed, marketed and delivered by the US organisation Autism Research Institute. The ARI held conferences and after attendance at 1-4 day trainings doctors, alternative health practitioners and nutritionists could be on the DAN! register. DAN! and its register has recently been disbanded – read more here. The DAN! approach included GFCF diet, multiple supplements, allergy testing and chelation to remove toxic metals. ARI states that thousands of children have ‘recovered’ from autism using the DAN! approach.
Advocates and resources for more extensively restricted diets:
- Book – Gut and Psychology Syndrome. Natural Treatment for Autism, ADD/ADHD, Dyslexia, Dyspraxia, Depression, Schizophrenia – by Campbell-McBride (2004) Medinform Publishing. ISBN 0-9548520-0-1 and the author’s accompanying website . The author is a Russian-trained doctor who has run a nutrition clinic in Cambridge since 1998. The GAPS diet is low in many carbs and includes fermented foods, with the aim of healing the gut.
- Specific Carbohydrate Diet – similar to the GAPS diet it involves restriction of many carbohydrates and has been used as an alternative treatment for gut problems. It is sometimes used by families of children with autism.
- The Western A Price Foundation believes in the importance of traditional foods in the diet – including raw milk and fermented foods, and lots of animal products. Their approach is popular in some families of children with autism. It sits well with the GAPS diet.
- Treating Autism – is a parent-led charity that is very pro- biomedical approaches including Western A Price, GAPS, and multiple supplements. They run regular conferences in London, that are interesting to attend.
- Also note that research has been done into the use of the ketogenic diet in autism.
Nutritional therapy clinics in the UK that ‘treat’ autism – some names that I come across regularly:
- Cauldwell Children is a charity who offers funding to families to access nutritional therapy for autism – often up to £2000.
- The Autism Clinic – a nutritionist’s clinic, run by Jonathon Tommey, a leading name in nutritionists advocating biomedical interventions.
- Brakespear Medical Group – a private practice of doctors and nutritionists in Hemel Hempstead who specialise in the treatment of the treatment of allergy and environmental illness, and see lots of children with autism.
- Jean Muscroft, nutritional therapist in North West England
Functional medicine is becoming increasingly popular in the mainstream in North America – resources to learn more are below:
- Dr Amy Yasko is a US-based doctor who uses nutrigenomic testing to guide biomedical treatment for autism – she aims for ‘recovery’ from autism. She shares in-depth presentations on her approach here. Books, DVDs and a discussion forum are also available.
- Judy Converse is a US dietitian who uses functional medicine and DAN! approaches in her practice. She has a number of books and a training course for dietitians and doctors here.
- NutritionGeeks – UK arm of the US Metametrix Clinical Laboratory. Carry out functional medicine or integrative medicine laboratory tests privately for doctors and nutrition practitioners, and offers training courses on these approaches
- Genova Diagnostics – another laboratory carrying out functional tests. See here for their info about autism
- The US Institute for Functional Medicine
- Dietitians in Integrative and Functional Medicine is part of the American Dietetic Association
- The British Society for Ecological Medicine is probably the UK’s best fit for a functional medicine organisation
Some other popular biomedical – related treatments include:
Systematic reviews of the evidence behind some of these approaches include:
- The BDA Professional Consensus Statement – as in number 2 above.
- Cochrane Database of Systematic Reviews: Gluten- and casein-free diets for autistic spectrum disorder. 2008 issue 2, Millward et al
- Cochrane Database of Systematic Reviews: Combined vitamin B6-magnesium treatment in autism spectrum disorder. 2005 issue 4, Nye C, Brice A.
- Research Autism ( www.researchautism.net ) impartial reviews of evidence for and against different autism interventions – this website is an offshoot of the National Autistic Society. This page lists all the treatments they are reviewing and their current grading.
- A few resorces I wrote for patients to help make an educated choice are on this page of my site – they are a few years old now, though, and due for updating.
9. Ongoing CPD opportunities
- Consider joining Dietitians in Autism – its free – to be eligible to join you should be a member of either or both the paediatric or mental health groups of the BDA. We meet 3 times a year and encompass research, adult, paediatric, NHS and private dietitians all over the UK. We have some honorary members from Ireland too. We often discuss difficult issues or cases by email and aim to support each other as best we can. To join email firstname.lastname@example.org
- Colleagues are often the best learning resources – see if you can spend time shadowing or working with OTs, SLTs, nurses, support workers, doctors, psychologists, portage and education support workers and in schools or nurseries or residential homes for your target working group. Observation and experience are the best teachers.
- Sign up to the About.com series on autism for weekly emails on all different topics
- Sign up to the rss feed or email alerts for the blog of Paul Whiteley – a researcher into diet and autism who posts regularly on new diet-related research
- There are a number of MSc level courses in autism – eg at Birmingham University or The Open University
- The National Autistic Society lists courses for professionals here.
- Audio (pay per listen) downloads on lots of different aspects of autism from the US site PESI
- Subscribe to The Autism File magazine
- Consider joining your local arm of the National Autistic Society, or a similar support group, and help out lobbying for improvement in local services, or just to become more aware of the multitude of challenges faced by those on the spectrum and their families.
There are many more things I could add to this page. If you have any suggestions, please do make them in the comments below or email me. I hope you enjoy learning more about this enigmatic condition as much as I do.