NOTES ON DIET/ SUPPLEMENTS

• Bio Lab: based in Central London. Will perform urine, blood, sweat tests etc on child to assess levels of magnesium, manganese, zinc, vitamin B6, etc., with a view to establishing any deficits and correct dosage for child.  You need to pay a fee, in the region of £100 I think, although private health policies usually cover. You need a GP or Consultant referral. Tel. 0171 636-5959. Address: Bio Lab Medical Unit, 9 Weymouth Street, London WTN 3FF.

• University of Sunderland: The Autism Unit carries out urine analysis to check whether gluten/casein-free diet required. Call 0191 510 8922. There is quite a waiting list, and some parents said a recent PEACH meeting that funding might now be a problem (to the unit – the service was free to parents but now there is a charge of about £50). The unit is basically staffed by academics, from what I gather, so you have to be patient, and they take a while (several months) and have been known to lose the odd sample. The unit also now provides two excellent booklets available at a total cost of £3.00 describing how to implement the diets, and explaining the basis of their research. Paul Shattock who heads up the group recently got an award for his work with autistic children, and has a grown-up autistic son himself.

• Coeliac Sociey : get your GP to write a letter saying they support your child going on the wheat-free diet, if this is the route you decide to take. Send this with a letter from yourself explaining about your child’s autism, etc. and enclose a cheque for £3.00. They will send a booklet listing all gluten/wheat-free products available from main manufacturers in the UK. It is a bit basic, and you have to read the foot-notes and even then sometimes you might have to telephone the manufacturers directly, as products change.

• You can also ask at supermarkets for a list of gluten/wheat-free products and dietary information. Be careful though, as recipes can change overnight, so you have to read the labels. I have got excellent information and even some recipe ideas from Tesco, and Sainsburys and M&S supply a bit too.

• Health Shops and Chemists (e.g. Boots) stock or will order special dietary foods. It is worth approaching your GP to see if he or she will let the child have the products on prescription. (Ask nicely as GPs do not have to do this, although the University of Sunderland team is currently lobbying government about this.) Obtaining food on prescription saves a lot of money, since a bag of special flour costs over £7! If not, some local health stores stock the products at much lower prices than many of the bigger chains, so shop around.

• Tru-free booklets describing their special flours are available free of charge from health shops or by contacting the company directly at the address in the next bullet point. From the flours we tried this is one of the best – it is a lovely quality product and is manufactured under very rigourous conditions.

• There is a cookery book called "Bumper Bake Book" for the wheat-free diet by Rita Greer obtainable for £8. This supplements the free books available from Tru-free via health shops, etc. Write to Rita Greer, 225 Putney Bridge Road, London, SW15 2PY and enclose a cheque. The recipes are great and if you get stuck you can even write or ‘phone the author and she will help you out!

• Call Glutafin Careline for product information: 01225 711801. They will send out a pack containing a free video and samples, e.g. biscuits, pasta, bread mix.

• Call Gluten-Free Foods Ltd: 0181 952 0052.

• Be careful at first, as the child can have bad symptoms when first put on the diet, just like a junkie coming off their favourite drug. The University of Sunderland team says these symptoms could last as long as 3 weeks. This can include shaking and more severe symptoms, and the Sunderland booklets describe this aspect quite well.

• Try to be scientific about it – keep a diary of all food given and record behaviour. You might want to use headings such as sleep, self-stimulatory behaviours, language, play, or whatever is useful.

• Also, you have to be strict on a diet like this, and you have to make sure well-meaning relatives, friends or school staff do not break the diet, e.g. by giving the child normal biscuits. You also have to give the diet enough time to take effect. If toxins are in the body, they can take months to disperse, and the initial bad behaviour you sometimes see can put a parent off doing the diet. Think what you want for your child, then persevere, is the advice that we would give!

• Ask your GP for a referral to a dietician. They can help you to assess how good the diet and any supplements are for the child. You record all data on a diary, everything the child eats and drinks for one week, typically. They then input this to a computer which churns our the results, and the dietician talks you through the results and makes suggestions as to how they can help improve the diet. Not many dieticians have a clue about autistic kids, but they are usually keen to help. Even if not all their suggestions work, take the basic idea and speak to other parents with kids like ours, and they might just be able to say something that will spark an idea for your child.

• Another source of really helpful data is the Hyperactive Children’s Support Group (HACSG) who I have found offer very practical advice. HACSG can be contacted on 01903 725182.

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