Alistair was born in 1984. He was a beautiful baby, just like his older brother and sister. His birth was the most normal of all my three children. I only used gas and air for the delivery. He was very active in utero, always moving and kicking, and, once born, very hard to settle to sleep; he wanted to be carried all the time. He was always on the breast, which was sometimes the only way to keep him peaceful and he continued to breastfeed until the age of two. I just thought of him as a difficult baby. He also had very dry skin (so bad that he needed arachis oil rubbed on twice daily) and lots of bumps on the back of his arms and thighs.
A Bleak Diagnosis
When he reached the age of two years four months a dramatic and serious change began. He stopped speaking, playing and relating to people, became extremely active, always running, jumping, never still. Exhausted, I asked my health visitor to see Ali, and she agreed something was wrong. She suggested a visit from the community paediatrician, who came on a very cold January day, when our heating had packed up.
Ali refused to go near him and went under the table. This doctor
said Ali was totally unassessable and referred him to the child development
centre, where he was peered at by more doctors.
I asked 'Is it autism?'
which I had read about in a childcare book, and was told it was severe
learning difficulties with autistic tendencies. No counselling, no
help, just that bleak diagnosis.
Changes in Eating Habits
I had noticed that Ali's diet had completely changed as his behaviour changed. He no longer drank milk in any shape or form, no ice cream or custard. He became a very picky eater, demanding the same foods every day. He was hooked on Ribena, raisins and peanuts and the last two items were found undigested in his nappy. He had severe nappy rashes, his skin looked burned and there was always a strong smell of ammonia in his urine. After eating certain foods, particularly orange juice and chocolate, Ali's behaviour became terrible. I broached the possibility of foods causing behavioural problems with the local paediatrician and was met with a totally negative reaction. There can't possibly be any link. I’m afraid you are using food as an excuse as you can't accept the gravity of your son's problems.
I still thought there must be something in this food lark as the reactions he had to specific foods were so obvious: extreme hyperactivity, bright red cheeks and ears and dark circles under his eyes.
Dr Ricks & the HACSG
As well as getting in touch with the Hyperactive Children's Support
Group (www.hacsg.org.uk), who were extremely helpful and supportive,
I met another mother, who had been to see Dr Derek Ricks, at University
Hospital in London and urged me to get a referral to him. After
much aggravation, including being told I had adequate services
for Ali in Reading, we managed to see Dr Ricks. If I had not seen
this doctor, I don't know what would have happened to Ali.
Dr Ricks had found a group of about 30 children like Ali, all with sudden onset of autism at around 18 months to 2 years. Most of them
came from allergic families and had severe allergic problems (eczema, asthma or hyperactivity) which were triggered by foods.
After the consultation with Dr Ricks, we left the hospital with a sense of relief that at last someone was listening to us and would support us in the search for what was wrong with Ali. Unfortunately, this was not to be as only a week after we saw him, Dr Ricks died very suddenly. He never had the time to sign the letter of diagnosis for Ali. He was a real pioneer in the autism field and I am sure he would have done further research if he had had the chance to do so.
Research - and Dr Waring
I began to research the biological and physiological side of autism myself after this and together with the help of the HACSG, I set up a support group in 1988 for children like Ali.
In 1989, I made contact with Dr Rosemary Waring at Birmingham University, having read her article in the Sunday Times about detoxification problems in conditions such as Parkinson’s and motor neurone disease. I wondered if the same thing could be happening with Ali and certain foods.
I think she thought I was a little crazy, but agreed to test Ali.
We had to give him paracetamol and then collect his urine for eight
hours - no mean feat with Ali. I remember running round the garden
with his potty! The result came back as positive, much to the surprise
of both Dr Waring and myself.
Paracetamol and Sulphate
This meant was that Ali was unable to excrete the breakdown products of paracetamol. This is not good, as you should get rid of at least 90% of this drug once you have used it. It appeared that he was unable to add a substance called sulphate to paracetamol or to foods with a similar chemical structure (oranges, chocolate, tomatoes and cheese for example) and was therefore unable to break them down and excrete the by- products properly. These byproducts can build up in the system and cause problems in the brain and body. Physical symptoms include red face and ears and increased hyperactivity.
Dr Waring agreed to test more children, and we eventually screened over 200 autistic children almost three-quarters of whom had the same problem.
Digestive Disturbance and Autism
There can be no doubt that disturbances of the digestive system contribute to autism in a major way. Anecdotal reports indicate severe diarrhoea and/or constipation together with extreme abdominal discomfort, including pain, swollen tummy and excessive and unpleasant wind.
These individuals may be picky eaters, eating only a few foods to excess. They have erratic eating patterns and may snack all the time. Food passes undigested into stools, which can range from small pellets like rabbit droppings to very large blocks, which cannot be flushed away. Some have porridge like watery stools with many bowel movements a day.
Permeable Gut Wall and Inflammatory Reactions
Research in Italy has shown that individuals with autism do have a permeable gut, which causes large molecules from foods, including wheat and milk, to migrate through the gut wall.
This sets up an inflammatory reaction by the immune system which can occur in any part of the body, such as the lungs (leading to asthma) or the joints (leading to arthritis). Toxins that would not normally be allowed across the gut wall may get through and overload the detoxification process.
Ali does not have the severe gut problems that are seen so often in many individuals with autism. However, since he was very young he has always had constipation and still does now.
He has ‘chosen' a diet for himself and sticks to it rigidly.
I am sure he knows what foods cause him problems and so does not
eat them. If he does have wheat, we can be sure that this will trigger
off a seizure within around four days. He will now eat a bigger variety
of foods, such as rice and gluten-free spaghetti and very recently
ate toast and lemon marmalade for the very first time! He still eats
non-foods, such as paper, but this has lessened as he has become
He is now 21 years old, has a beard like his older brother and is very happy and settled at his daycare centre, where he goes three days a week, and at Thrive, a garden project, where he goes on the other two.
I hope that through more research and better understanding of autism, we can create a management of this condition, to give
better quality of life for people like Alistair and their families.
Our charity, Autism Unravelled has been set up to do just this, and I hope it will be sooner rather than later, that we can really unravel autism.
More information from Autism Unravelled tel 0845 22 66 510 www.autism-unravelled.org
Click here for more general articles on autism
First Published in 2006
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