The simple message is, that autistic children can have many underlying gastro-intestinal and immune issues that should be looked into and can be treated - this can lead to improvements in their behaviour and general energy and nutrition. I am absolutely no expert on any of it, and no one knows all the answers. If you were to ask my advice over a cup of coffee, based on my limited experience so far, I would tell you the following:
When I first read about the diets and treatments available, I felt urgently I needed to follow up all the ideas, but I was completely overwhelmed already. The more I read, the more confused I became – my GCSE's in science were not enough to fathom out the information I was reading! Though I tried to be sensible, my lack of understanding about the human body meant I started clumsily and inefficiently.
I would recommend the very first thing you do is join 'Treating Autism' - a charity run by parents of autistic children to give knowledge and support to those who want to investigate what treatments are available for their autistic child. Also, joining a forum group like the 'Autism-Biomedical Europe' group on yahoo means you can ask questions, or if shy - search for the answers among the other posts (links in the 'useful links' section of this website).
You need to know that when you do anything that alters the balance of the human body, it can take many weeks for the results to become apparant – so any change you make should be monitored.
Don't be too hard on yourself. Every little step you take is going in the right direction, it doesn’t matter how long it takes – however, many people treating autistic children will say that you should try the gf/cf (gluten and casein/dairy free) diet straight away.
For the first few weeks while running down your cupboard stocks you could feed your child as normal, watch and make a diary. Note sleeping and morning waking times, waking and settling times through the night, changes in mood or behaviour, things like teeth-grinding or red ears, rashes, areas of bumpy skin, frequency and details of nappies/bowel movements, constipation, diarrhoea, quality of eye contact, level of hyperactivity or times of zoning out. Also note everything that passes their lips - you may notice some foods causing problems immediately and want to take them out, just keep a note of what you stop and when, and any changes that result. This IS alot of work and information gathering, but certainly for us it paid off over and over again - things were so much clearer written down than in the day to day 'firefighting'.
Once you have some ‘evidence’ of symptoms, visit your GP and ask what support he/she can give – the level of support varies wildly from area to area, and Doctor to Doctor – some are great and supportive, some are quite obstructive and/or wary. I would concentrate on describing the symptoms and not mention gluten/casein/autism in the beginning, because you may find your treatments blocked by the ‘no proven link between diet and autism’ theory. If you stick to the symptoms you should be able to access some testing and analysis – It’s likely it’ll take a long time for the referrals to come through so leave that bubbling. Give your doctor links to the 'University of Sunderland' website, 'Treating Autism' and the 'Autism Trust' Website - all good starting points for reading around the subject (in links section of this site).
This is a good time to take an assessment. Many parents use an ATEC assessment online - http://www.healing-arts.org/children/ATEC.htm#return . This will give you a baseline to refer back to on days in the future if everything feels like hard work, it’ll remind you how far you have travelled! I put a note in my diary once a month to remind me to do these – sometimes they flag up changes (both positive and negative) you havn’t noticed in the overall scheme of things.
There are some things you can introduce straight away without the support of a Doctor. Some basics that all kids will benefit from are:
- A good quality probiotic (capsule preferably, the drinks have lots of sugar in)
- Omega supplements - EyeQ/MorEPA or similar, best to have good quality with EPA.
- A good quality A-Z vitamin and mineral (watch out for sweeteners and fillers though)
- Cutting out sugars, aspartame, msg, caffeine
You will find msg hidden in many 'crispy' foods directed towards children. The Organix website is a great source of information about the other worst offenders - http://www.organix.com, and I found lots of other really useful lists for free on the internet.
Swap as much as possible of the dairy and meat your child consumes to organic or drug free/free range - although expensive, this is one of the best switches you can make.
Trialling gluten, casein, corn, soya, eggs and other ‘main offenders’ for intolerance. Using your diary as a baseline, remove a food for AT LEAST 4 weeks, monitoring the effects. If you see absolutely no change over 12 weeks, try reintroducing the food as a small challenge, and again watch your food/behaviour diary to see if there are any effects when the food is reintroduced (sometimes the effects are so obvious you will not need to reintroduce to test the theory!). If it makes no difference coming out or going back into the diet – you can maybe assume there is currently no problem with the food - but watch for behavioural clues as well. You will need to revisit periodically to make sure – Archie became sensitive to several foods over a long period of time, and the clues were not always obvious. You can also get allergy testing done through several labs, though there is no truly reliable way of testing for intolerances except restriction and monitoring - look on the Treating Autism website for recommendations.
Consider other substances your children come into contact with through bathing, general household cleaning, clothes washing, etc. Some children have sensitivities to SLS Sodium Laureth Sulphate, or fluoride - start to experiment with SLS free and fluoride free products from health shops and online health stores until you find things that suit your family. Cleaning wise, I swapped everything to Ecover in the early days, which I found balanced the need for products that worked with the need to reduce unnecessary chemicals. There are other similar companies with natural products or every day products with natural ingredients that work really well too, and Kim and Aggie have plenty of tips for cleaning with lemons and other natural things!
In our experience the results of removing gluten were phenomenal and absolutely obvious, so there was really no question of whether or not to continue. At one point Archie accidentally ate some gluten at a party and the reverse in his improvements was immediate and lasted 48 hours. All children are different, but your personal diaries will definitely paint a clear picture for you that is personal to your child, and help you when you get to meet practitioners.
If you have read all this about removal of foods and lost the will to live(!), don't despair, an alternative route is to use digestive enzymes to help your child digest their problem foods - many parents are finding success with this, and it enables their children to eat the same as the rest of the family - also an important consideration since mealtimes are one of the best times to practice social skills. Quality of enzymes is varied, I would recommend you contact www.mandimart.com to get the right product and advice.
All mentioned above are positive steps that can be taken to improve the health of any child without spending too much. The results you get will hopefully encourage you to invest in getting the help of a nutritionist, a DAN! Physician, or someone else suitably qualified and with a specialism in ASD – autistic children are all unique, but face very similar gastro-intestinal, metabolic and other problems. There are online forums where you can ask for local recommendations.
There are many tests using hair, urine or blood that you can access to pinpoint more precisely what is happening with your child. The tests can tell you lots of interesting information, but will give you lots more questions. Don't let controversy stop you from looking at bio-medical options - there are lots of different treatments available which can help your child with their symptoms. Some of the strong views and bad press come from people who think parents 'treating' their children are not 'accepting' their children's autism - from my point of view - my son's digestion and immune systems cause him pain, discomfort and stress. As a parent I want to help him with his symptoms - I'm not desperately handing over cash in the hope for a cure, as some would have us all believe. Also, don’t panic and start throwing additional single minerals or vitamin supplements into your child because they all need to work together - get advice. Find a few trusted sources of support and info and get recommendations for a good Doctor from other parents.
There are many manufacturers now responding to the needs of our kids - producing purer and easier to administer supplements. The best place to ask about new supplements is in online forums - again, always double check any info yourself. Consider also that some manufacturers cater for fussy eaters by offering several methods for each type of supplement - different flavours, textures etc.
There are lots of books, websites and resources recommended in the 'book reviews' and 'websites and links' pages of the site. Keep an eye on Archie’s diary for more information about his journey forward, and good luck with yours!
(Please note that this information is not intended as medical advice, and we can accept no responsibility for your decisions. You must seek the services of qualified professionals to oversee the health of your child, and double check all recommendations - and I'll say it again - Joining 'Treating Autism' will be the best thing you ever did!)
If you have found this information useful, please consider making a small donation to Archie’s Learning to Live Appeal.
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