JAMES COOGAN, 15, loves holidays in Lanzarote, having cups of tea in bed every morning and sitting at the back of the cinema with his dad, watching action movies and feeling the sound vibrations.
Diagnosed with an Autistic Spectrum Disorder (ASD) at three, James currently attends a special unit attached to a mainstream school and can read at a sixth class level. But he hasn’t always functioned at such a high level of ability.
At a special pre-school for children with ASD, James struggled to recognise and name simple pictures. “Every day, he looked at 26 pictures of a cat or a ball or a dog, and his score was seven,” says James’s father PJ Coogan, chief reporter for Cork’s 96FM radio station.
After hearing parental reports of success with special diets, Coogan and his wife Jill decided to implement a gluten and casein free (GFCF) diet with their son, eliminating wheat and dairy products.
“I said it was mumbo jumbo and it couldn’t work, and the doctor said it made no sense, but we came to the conclusion that it couldn’t do any harm, so we did it,” says Coogan. He soon began to notice changes in James’s intellectual and social functioning.
“Six weeks after the diet started, we got a phone call from the teacher to come down to the school. In front of me, my son knew 24 out of the 26 words. Then we introduced a new set and he did 25 out of 26 words. We noticed that he began to interact more with us, talking and increasing his vocabulary. He began to interact very dramatically and to be enthusiastic about things and to love things,” says Coogan.
“James hasn’t had a melt-down since the diet. Somewhere inside there was a little boy struggling to get out and when the diet kicked in, he came out.”
Coogan acknowledges that there can be initial difficulties in adhering to a strict GFCF diet with a preschool child, including lack of local suppliers and a refusal on the part of the child to try new foods. However, the family have become experts at deciphering food labels and learn the vocabulary for the GFCF foods whenever they travel abroad.
“The diet is very hard to start and it does take a few weeks of very hard work. If your child is more than three years old, he’s going to protest when you take yoghurts or cheese away,” says Coogan.
The family now bulk-buy soy milk in the local supermarket, and consider management of the diet to be “second nature”.
Affecting one in 88 children and one in 54 boys, ASD is a neurodevelopmental disability characterised by a triad of impairments in communication, social understanding and flexibility of thought. Many parents who use GFCF diets believe that their children with ASD have a ‘leaky gut’ through which peptides from gluten and casein-containing foods can escape through into the central nervous system, effecting brain function and behaviour.
“You can fix a leaky gut with diet, probiotics, nutritional supplements and anti-fungals,” says nutritionist Noreen Cronin, who found a GFCF diet to be hugely beneficial with her son Sean, 17, who has ASD. With a PhD in chemistry and a masters degree in nutritional medicine, Cronin says gut health awareness and its link to behaviours is less common in Ireland than the rest of the world.
“If there’s inflammation in the brain, it effects speech, behaviours, understanding, concentration and sensory issues. If we start cleaning up the gut, we can see what the child can do better,” says Cronin, whose work includes re-culturing the gut by introducing good bacteria, probiotics and a nourishing diet.
Cronin acknowledges that there are barriers with this diet, and that it won’t work for every child. “It’s such a complex problem and there’s no one solution for every child. But I have no doubt that kids feel more comfortable when their gut is better,” she says.
Though there is scant scientific evidence that special diets are effective, the US-based Interactive Autism Network (IAN) online survey found that 16% of parents were using at least one special diet (including melatonin, vitamin B12 injections and probiotic supplements) with their children with autism, with GFCF diets being the most popular.
To date, success with the GFCF diet has been largely confined to small-scale scientific studies, anecdotal evidence and parent reports.
There are currently many books, websites and forums promoting complementary or alternative diets for use with children with ASD. Hollywood actress Jenny McCarthy is an advocate of the GFCF diet, citing that it helped immensely to alleviate some of her son’s autistic behaviours. The face of Generation Rescue, a US autism organisation, McCarthy has been criticised for using her celebrity status to promote what she believes to be causal factors in autism — the MMR vaccine and environmental factors. Slammed by Time and Forbes magazine for discouraging parents from getting their children vaccinated, McCarthy remains a powerful voice in the autism world, claiming that using a GFCF diet, cod liver oil and vitamins with her son Evan helped him to have better eye contact, doubled his language skills, improved repetitive movements and sleeping and decreased temper tantrums.
Despite a lack of scientific evidence to support GFCF diets, it is quite clear that gastrointestinal (GI) problems are common in children with autism. A recent ICAN study found that 79% of children with autism had presented with at least one GI symptom (nausea, abdominal pain, bloating, constipation or diarrhoea) in the preceding three months, with the most common being abdominal pain and constipation.
“Gastrointestinal problems are sometimes difficult to diagnose especially if the child is non-verbal,” says Geraldine Leader, director of the Irish Centre for Autism and Neurodevelopmental Research (ICAN) at NUI Galway.
“Our research and other research demonstrated that gastrointestinal issues may exacerbate behaviour problems and problems with sleep. It is important to remember that gastrointestinal symptoms are also common in typically developing young children.”
US-based research is currently underway on the controversial gut-brain link in children with ASD. In Canada, Dr Derrick MacFabe is studying a link between gut bacteria, proprionic acid and its ability to produce autistic-like behaviours in rats.
Closer to home, UCC scientists have discovered a link between gut bacteria and autistic behaviours. In a clinical trial using mice, researchers found that gut bacteria is essential for the development of normal social behaviours.
“Diet is one of the biggest things that is able to govern composition of gut bacteria. Changing your diet will change how you behave, no matter who you are,” says Professor John Cryan, senior author on the study and head of the Department of Anatomy & Neuroscience at UCC.
Cryan and his team compared the social behaviours of mice who were artificially raised without any bacteria in the gut, and those who had gut bacteria. The mice without bacteria exhibited similar behaviours as people with ASD, showing a lack of sociability, and had deficits in social cognition.
For example, when the mice without gut bacteria were given an option of entering either an empty cage or a cage with a mouse in it, they always opted for the empty cage. And when offered a choice of being in a cage with a strange new mouse or a mouse they already knew, they were unable to distinguish new from old friends.
They also engaged in more grooming behaviours (like autistic repetitive responses) than the typically-developing mice.
Interestingly, when the researchers re-introduced gut bacteria to these mice, they were able to reverse some of the autistic-like behaviours (including sociability and repetitive behaviours) but were unable to reverse deficits in social cognition.
But what does all of this mean for parents of children with ASD?
“We’ve shown that there’s huge potential in our gut microbiota to influence behaviour,” says Cryan. “In the autistic world, there is perhaps some link between bacteria and gut health and brain function. You need bacteria in your gut for normal behaviour. The question is which bacteria? Can we use this information and the bacteria in the gut to treat some of the symptoms of autism?”
Though the UCC research is promising, Cryan points to the need for large-scale clinical studies and also cautions that this study is based on animals, not humans.
Furthermore, a recent US National Standards Report (2009) (an initiative of the National Autism Center) which reviewed autism treatments, classed the GFCF diet as an “unestablished” treatment, due to inadequate scientific research. It suggested no educational or behavioural benefits for this diet and found studies that point to the risk of nutritional deficiencies in children who used it.
Leader cautions against the use of these diets.
“Many parents searching for a biomedical intervention that may help their children with autism have embraced the hypothesis of a ‘leaky gut’ in autism. As a result, restrictive diets and other nutritional or GI therapies, such as the gluten-free, casein-free diets have become widely popular interventions for children with autism. To date, there is no scientific evidence to support the effectiveness,” she says.
* www.generationrescue.org, www.autismspeaks.org, www.tacanow.org, www.researchautism.net
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