Simone Sewell still shudders at the memory of the moment she was told her two-year-old daughter, Sienna, was autistic.
She and her husband, Geoff, sat in shock as the paediatrician spelt out the bleak future that awaited their first-born.
‘The doctor said Sienna would never fall in love, marry or have an independent life,’ recalls Simone. ‘With no hope of a cure, we were more or less told to live with it.’
Yet three years on and this grim future seems unlikely, given the great improvements in Sienna’s behaviour. Indeed, her parents believe Sienna, now five, is on her way to being cured.
It’s a staggering claim, not least because mainstream medicine insists autism – which affects nearly 600,000 UK children and adults – is a life-long condition.
Yet Simone offers countless anecdotes as proof of her daughter’s improvement. ‘For instance, like many autistic children, Sienna always hated noise, people and busy places,’ says Simone.
‘She would scream, have a tantrum or cry because she was so overwhelmed. Now I can go shopping to a supermarket with Sienna holding one hand, and her sister Olivia, who is three, holding my other without worrying whether Sienna will stay by my side or create a scene. This is how I know she is getting better.’
This progress has been achieved at a cost – the couple have invested £100,000 in behavioural and dietary therapies, and Geoff, who was in the pop opera group Amici Forever, has given up his singing career to help with Sienna.
She would line up her toys obsessively
It is not known what causes autism but it affects a child’s ability to communicate and relate to others. They are often withdrawn, mute, unable to make eye contact and prone to disturbed sleep and tantrums. Many never take part in mainstream education and some require full-time care.
Milder cases may struggle with communication, but be able to live a fairly independent-life. But even then, as the paediatrician told the Sewells, it was unlikely Sienna would have a truly self-sufficient future.
‘We were devastated,’ recalls Simone, 35. ‘Afterwards we just walked round a local park, bawling our eyes out, hardly able to speak. But I refused to write off my daughter. I felt there had to be something that would help her.’
Simone and Geoff, also 35, who live in Hampstead, North London, didn’t realise Sienna had a problem until a few months before her diagnosis. It’s only with hindsight they realised the ‘red flags’ were there.
For the first two years of Sienna’s life, she travelled with her parents as her father toured with Amici Forever.
‘She had tantrums, slept badly and would line up her toys obsessively,’ recalls Simone, ‘but I just thought she had a strong personality. As she started to talk, she didn’t use conversational language, but there were no other children around to compare her with so we didn’t realise anything was wrong.
‘But her behaviour deteriorated as she got older,’ Simone says. ‘Eventually, she would be awake for seven hours a night. She was very much in her own world, and wasn’t interested in other people.
‘Autism was the last thing on our minds. We were so naive. In fact it was only at her assessment that we realised something was wrong. The speech therapist said at her age she should have had about 50 words in her vocabulary. Sienna didn’t have anything like that.’
I refused to write off my daughter
An agonising six months of tests assessments followed before Sienna was formally diagnosed.
After the shock Simone spent hours searching the internet, desperate for possible leads to a cure, overwhelmed at the vast amount of opinion and advice.
Then fate intervened. Geoff decided to abandon his singing career so the family could have a more stable home life (they now run an entertainment agency). A farewell concert in his native New Zealand was arranged.
Hearing of their situation, Dr Debbie Fewtrell approached the couple. She believes autism is linked to an inflamed gut.
While the cause of this inflammation is not clear, it means autistic children can’t digest proteins found in foods such as bread and milk. As a result, tiny proteins leak into the bloodstream and act like opiates which turn off part of the brain and also cause or aggravate the symptoms of autism.
Blood and urine tests suggested Sienna’s gut was indeed inflamed, and she was placed on a gluten and dairy-free diet. ‘Within a couple of days, Sienna said “water” and pointed to the tap – something she’d never done before,’ says her mother. Though they cannot prove this was linked to a change in diet, it seemed more than coincidence.
The next step was a ‘specific carbohydrate diet’ – a regime avoiding complex carbohydrates such as bread, cereal and pasta to rid the gut of harmful bacteria and reduce inflammation.
Her behaviour improved within days of the special diet
Some may suggest the family’s peripatetic lifestyle was largely to blame for Sienna’s behaviour, but the Sewells say the diet is what has transformed her. ‘It made the most amazing difference,’ says Simone. ‘After about a month Sienna started to do imaginative play – something I’d never dreamt she could do.
‘Normally she would just line up her dolls but I came in one day to find her sitting with them on a little table and telling them: “We’re going on holiday to Crete.” I was flabbergasted. It was then I dared to believe we were actually getting somewhere and making progress.’
The Sewells also started giving her supplements such as zinc, selenium and Vitamin B6 injections – which some studies claim improves the behaviour of autistic children – and ‘detoxified’ their home to limit Sienna’s exposure to materials such as household chemicals that could be aggravating her condition.
Dr Fewtrell also recommended applied behavioural analysis (ABA). This involves teaching linguistic, cognitive, social and selfhelp skills to autistic children by breaking these down into small, repetitive tasks.
For example, if a child was attempting to learn to match pictures up, the therapist would initially direct the child to match the pictures by putting their hand over the child’s and directing them. Once the child has done this several times, the therapist may tap their elbow to prompt them instead. Eventually, the child should do it without prompting.
As well as only being available privately, it is also time-consuming. Simone found a practitioner in London, and Sienna, then three, began working with her for 12 hours a week. This has gradually increased to 33.
The Sewells believe they will confound the paediatrician’s bleak prognosis. ‘Sienna gave us cause to hope,’ says Simone. ‘Within a few days of starting the ABA therapy, she called out “Mummy” to me, just as a normal child would do as a sign of affection.
‘Her speech began to improve and she began to use connectives such as “but” in a sentence. Her reading and writing skills have developed rapidly in the past year.’
Sienna is at mainstream school, with her ABA helper in tow for part of the week. She is, says her mother, popular with her peer group and does ‘imitation’ play with her sister – who is not autistic – copying everything Olivia does.
Without evidence to prove the link between diet and autism, the medical establishment remains sceptical and maintains autism cannot be cured, only positively managed at best.
‘There is evidence early intervention can help a child cope with their condition,’ says Caroline Hattersley, of the National Autistic Society. She says while the NAS understands parents’ need to find something that will help, there are a lot of interventions, including ABA, ‘which may or may not help’.
She adds: ‘The bottom line is that, unfortunately, there is still no cure for autism.’
The Sewells are far more hopeful. ‘The future is so exciting and I visualise Sienna well, graduating, sitting round the family table telling us her news,’ says Simone.
‘By healing Sienna’s body from within and teaching her how to connect, I’m sure we can beat it.’