How we're fighting our child’s autism
Geoff Sewell and Simone Lanham were devastated when doctors told them their daughter’s condition was incurable. But after three years of research and treatments costing £100,000, they are seeing surprising results. Rob Sharp reports
Tuesday 24 February 2009
It’s hard to be a parent at the best of times – but when one of your children is struggling to cope with autism, every day is a challenge. Most parents of autistic children set about learning to adapt their lives and their thinking to the condition of their child, but Geoff Sewell and Simone Lanham are not content simply to learn to cope with their daughter Sienna’s autism.
Since Sienna, five, was diagnosed, they have fought her condition, using a combination of behavioural therapy and changes in diet. And the couple – who both work in the entertainment business – feel that they are winning, although they are paying a financial as well as an emotional price; the treatment has so far cost them in excess of £100,000.
“When we got the diagnosis, we were not given any advice on how to treat autism at all,” Simone says. “We were just told that it was a lifelong condition and was not treatable. Since then, we have been trying to send out the opposite message – that autism is treatable, and some children improve so markedly that they lose their diagnosis altogether.”
The couple were told about Sienna’s condition in 2005 by a team that included a paediatrician, a speech and language therapist and a psychologist. “We were completely devastated by the news,” Geoff says. “And we were very shocked by the diagnosis. It took a team of experts around two months after being seen through the NHS, and then we sat there and tried to take it all in. I think Simone broke down after they said they did not advise that our daughter should get married when she was older. And then I asked the question of whether she would be teased in the playground. They didn’t really answer that. That’s when I broke down. After that we went to Regent’s Park and just bawled for four hours.”
The changes Geoff and Simone saw in Sienna’s behaviour came gradually. “We were travelling the world with Geoff, who is a musician, and we were not really in an environment to compare Sienna with other kids,” Simone says. “So maybe we had our heads in the sand for longer than we should have. And when the health visitor advised how many functional words Sienna should have, I realised that she didn’t really say ‘hello’ or ‘bye bye’. We went through a process of assessment that lasted several months. When I explained to the doctors about Sienna’s behaviour, they just nodded their heads. I realised that, OK, this must be bad.”
Simone now sees, in retrospect, that Sienna displayed many of the characteristic signs of autism in her early life. Her daughter rocked back and forth, showed poor evidence of eye contact – except with her parents – and had erratic sleep-patterns. She screamed frequently and banged her head, beyond the expected tantrums of the “terrible twos”. “Her behaviour deteriorated as she got older,” Simone says. “Eventually, she would be awake for seven hours a night. There were a lot of indicators when we looked back. She was very much in her own world, really. She wasn’t interested in other children or other adults. That’s what we had to deal with.”
After the pair returned home from tour, they began researching autism on the internet. Simone discovered the Defeat Autism Now (DAN) network, an organisation for those dealing with autism on a day-to-day basis. DAN advocates a biomedical approach.
Feeling that this was a better approach than that offered by her doctors, Simone began testing Sienna for dietary deficiencies: if certain vitamins or minerals were lacking in her diet, for example, they would be increased. “The first thing we did was to take dairy and gluten out of her diet. And as soon as we took her off her bottle of milk, she said her first functional word, which was ‘water’,” Geoff says.
This approach is complemented by the work of a behavioural therapist. “Sienna doesn’t develop lots of normal life skills to fill in the picture,” Simone says. “She goes to mainstream school and she went to mainstream nursery, but she has a ‘shadow’ – someone who’s a bridge between her and the outside world, giving her the skills to fill in those gaps that don’t develop normally.” This “shadow” is employed by the family, at some expense, but they feel it is worth it.
The pair are confident that their approach to dealing with Sienna’s condition is yielding results, and that she will “graduate” from the programme she’s being treated with. Then, it is hoped, she will be able lead a much more normal life than would otherwise have been possible. In order to help other families, they have set up The Sewell Foundation, a charity, with the controversial slogan “Autism is treatable. Recovery is possible”.
Last month, it was announced that it may soon be possible to screen unborn children for autism using amniocentesis (although parents would not know how severely their child might be affected). “The earlier you know that your child has autism, the more you can do about it,” Simone says. “However, the important thing to remember is that more help needs to come from government, and funding so that families can deal powerfully and positively with autism now. Would it have made a difference to us if we had screened? I can’t answer that. I don’t look back, I look forward. I do know that both my children are amazing – and how could I live without them?”
The couple are keen to stress that autism should be addressed early, whatever course of action is taken (although they were adamant that they did not want their daughter treated using conventional medicines or drugs). In any case, parents should not give up hope. “We are positive people anyway,” Geoff says. “We were pretty depressed at the start. So [what is it like for] people who are not that way inclined? They will listen to the doctors, and think they have no hope.
“It is also a revelation having our other daughter, Olivia, around, because we can see how she develops normally,” he says. “If I am mowing the lawn, Olivia will come and copy me. Or if I say something, she will parrot it. Sienna will not do that. She has to be taught everything through incidental learning. There are a lot of cynics out there who will criticise behavioural therapy, but there are lots of different kinds. From our experience of talking to other mothers, you need to find the best approach for your child. Sienna does learn now. She does copy her peers. If we hadn’t acted, she wouldn’t have done.”
However, the medical profession is sceptical about the couple’s approach. “In a diagnosis of autism, there is very little evidence of interventions being curative,” says Richard Mills, research director for the charities Research Autism and the National Autistic Society. “A number of parents have recorded improvements with dietary interventions, especially those that remove dairy products or wheat. But they don’t seem to impact on the autism, more on the behaviour. Similarly, the behavioural interventions are well researched in terms of reducing the symptoms of autism and, importantly, the child’s level of functioning… [but] even then, not across the board.” Mills says such treatments suit some parents better than others.
So far, the medical profession has been unable to secure funding for a major study of the link between diet and autism, and remains adamant that research is the only way to tell whether such methods are of any use. “Lots of people are doing the dietary intervention,” Mills continues. “I would never advise anyone against doing anything that might be helpful. While there are parents who record improvement, there is very little scientific support. That’s not the same as saying it doesn’t work. We need to do the study.
“There are strong feelings on both sides of the divide. Supporters argue passionately that [such intervention] is helpful. In equal measure, people oppose them as being a waste of time or money, or say that autism is not an illness and therefore isn’t something that is curable anyway. It does attract polarised views.”
But Sienna’s parents’ views are unchanged. “We are grateful it has happened to us; even we are healthier as a result,” says Simone, who, like her daughter, has adjusted her diet to reduce its gluten content. “You appreciate going to one of Sienna’s friends’ birthday parties with more enthusiasm because Sienna now gets excited and wants to go. She doesn’t freak out when she sits on a swing, and those milestones are things to appreciate. Now, you can ask her what she did at school – and she can answer.”
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