by ROSALIND RYAN
Long car journeys with young children – full of endless questions, chatter and games of I Spy – leave many parents with a headache. But until recently mum Helen Bennett positively longed for her little boy to behave just like that.
Instead Tom, five, would spend all his car journeys – and most of his days – in total silence.
He was locked in his own world, unable to engage properly with life around him due to a form of autism called Asperger Syndrome.
The devastating symptoms affected almost every area of his life. At nursery as other children played he would sit alone, engrossed in his own thoughts and obsessively lining up his toys.
But in the past six months all this has changed. Despite being told by doctors that her son’s condition was incurable, Helen has found a treatment has improved Tom’s condition beyond recognition.
Here we present the story of how a new treatment has improved Tom’s Asperger Syndrome.
When their little boy was born, Helen and Paul Bennett were overjoyed.
But he was immediately put on antibiotics to protect him from a virus he had picked up in the womb and as he grew his ill health continued.
‘As a baby, he was always vomiting and seemed to pick up every virus that was going,’ says Helen, 38.
His sleeping patterns were also erratic. For the first two years of his life, he would only sleep for two or three minutes at a time before waking. When he reached the age of three, this pattern reversed and he began sleeping excessively in the afternoons. As he grew older, Helen and Paul began to notice other oddities in Tom’s behaviour. He did not seem quite like other children.
‘The most distinctive sign was that when he got excited or was concentrating on something, he would flap his arms quickly,’ says Helen.
World of His Own
Tom also became vacant at times, disappearing into a world of his own. He also began shaking involuntarily and had terrible temper tantrums over things that ‘normal’ children would not react to.
Helen’s friends, family and even her health visitor told her she should not be worried about Tom’s behaviour. It was often dismissed as a mannerism that he would grow out of, but Helen was convinced that something was not right with her son.
The first person who agreed with her was Tom’s nursery school teacher. She had worked with autistic children before and suggested that Helen take Tom to her GP to be tested for the condition.
Frustratingly for Helen and Paul, their doctor also said they should not worry about his behaviour, but at their insistence, he referred them to a specialist. After assessing Tom, the specialist made the diagnosis that Tom was suffering from Asperger Syndrome.
The condition is a form of autism, a spectrum of developmental disabilities that affects the way a person communicates and relates to the people around them.
Asperger Syndrome is on the lesser end of the spectrum. This means that sufferers have some of the symptoms of autism – such as difficulty forming relationships, problems with communication and a love of routines or set patterns – but they are not as severe as those forms on the other end of the spectrum who can also have learning disabilities.
It is not known what causes Asperger Syndrome, but there are a number of theories that it could be triggered by a physical factor – such as an illness – that affects brain development.
Although many sufferers can eventually be taught how to communicate with others Helen was told there was no known cure for the condition.
‘It was absolutely devastating,’ says Helen. ‘Nobody wants an autistic child – the word autism conjures up images of an emotionally detached child banging their head against a wall. Who wants that for their child? I felt terrible.
‘We always thought that Tom would be like us; sociable and outgoing with lots of friends, but when we were told he had Asperger Syndrome, we realised that we had a son who wouldn’t want to do that and who would never really be like us.
‘There was no history of autism in my family so I had no idea of what to expect. Doctors and specialists kept telling me it was mental illness with no cure. We just had to learn to live with it.’
Helen had to come to terms with the idea that her son would never go on to form the close relationships she herself had enjoyed as a child. She also had to accept that he might never tell her he loved her and would appear to be completely indifferent to her feelings.
Helen began doing her own research into Asperger Syndrome. The more she learnt, the angrier and more frustrated she became.
‘The child development specialist told me that Tom might get bullied when he went to school and would find it difficult to make friends,’ she says. ‘I began thinking that I didn’t want this for my son and was determined to find something that could help him.’
By chance, one of Helen’s friends happened to attend a seminar on treating Asperger Syndrome and autism through diet. The doctor giving the seminar, Dr Jean Munro, ran a clinic for treating children with behavioural disorders in the town where they lived, Hemel Hempstead.
After just one visit to see Dr Munro at the nearby Breakespear Hospital Helen felt she had found the answer to Tom’s illness.
Dr Munro believes that autism and Asperger Syndrome are caused by damage to the bowel. Her theory is that giving children antibiotics in the first year of their lives – or during pregnancy – damages the lining of the bowel, making it more porous.
This damage affects the way people with autism digest their food. Ordinarily, the body breaks down certain proteins in our food into components called peptides. These peptides are then broken down into smaller particles that can easily pass through the wall of the intestines.
But because it is thought antibiotics can cause bowels to become more porous, their intestines absorb the peptides before they have been broken down properly.
These peptides then pass through into the bloodstream, damaging the brain and causing the symptoms of autism.
Some of these peptides mimic the drug morphine, so a child suffering from autism would be expected to have high levels of this morphine-like chemical in their bloodstream.
‘Tom had been given antibiotics almost continuously for the first six months of his life so it all started to make sense to me,’ says Helen. ‘A urine test then confirmed that he had high levels of this morphine in his blood. This accounted for his high pain threshold, unusual sleep patterns and other symptoms – it felt like we had found a ‘cure’ for Tom’s condition.’
The majority of these peptides have been identified as coming from gluten, sugar and dairy, so Dr Munro recommends her patients eliminate these foods from their diet. A further sensitivity test may then be required to identify any other possible food triggers.
Helen started Tom on the gluten, dairy and sugar free diet in July this year, one month after his first visit to the clinic. In just four months, Helen has been astounded by the change in his behaviour.
She says he is becoming generally more aware of what is around him and has started taking an interest in other people – such as by asking them questions. He has also started remembering more information and can recall it more easily than before.
Another symptom of autism is dark circles under the eyes, thought to be caused by the child’s inability to absorb the proper amount of nutrients from their diet. Tom also suffered from these circles but since starting the diet, they have virtually disappeared.
The biggest change in Tom’s behaviour has been his interaction with other children. Helen says, ‘Before starting the diet I noticed that other children would be having conversations but Tom wouldn’t be joining in. He was always too involved in his own activities, such as obsessively lining up all his toys in neat rows.
‘He never used to have one special friend but now he has got a big group of friends that go round to each other’s houses for tea. He has even got a little girlfriend!’
Tom will have to follow the diet for the rest of his life to control the symptoms of his Asperger Syndrome, but this is no different to somebody with a dairy or gluten allergy who has to cut these foods out of their diet. He may also need additional sensitivity tests to identify any other foods that trigger his condition.
Since the change in Tom’s behaviour, Helen and Paul now feel they have the chance to get to know their ‘real’ son, but they are not yet making any big plans for his future life or career.
Tom’s condition has already improved by 80 per cent and Helen and Paul hold out hope that he may one day completely recover. If his behaviour continues to improve as dramatically as it has done so far, this could be a real possibility.
‘I noticed a difference after just two days on the diet and it was really dramatic,’ says Helen. ‘Normally on long car journeys Tom and I would sit in silence as he was absorbed in his own world.
‘But this time we were driving and he said ‘Look Mummy, there’s a tree’ and I almost crashed the car! It was the first time he has ever taken an interest in his surroundings like that and it has given me real hope for the future.’