‘Autistic children are now seen as a burden’

This article is republished from the December 2008 issue of the spiked review of books. View the whole issue here.

Dr Michael Fitzpatrick’s Defeating Autism: A Damaging Delusion is not only a moving personal account of the challenges faced by parents of a child with autism. It is also a powerful exposé of the damaging effects of the numerous campaigns that promise to ‘defeat autism now’ through various ‘biomedical’ treatments, such as special diets and supplements, detoxification and medication.

‘Parents are fighting the wrong battles against the wrong people at the wrong time’, Dr Fitzpatrick told me when we met in a café in Hackney, London, near his GP surgery. He believes parents are held back from doing what is best for their own children by the false promises of biomedical campaigners, whose ‘rage’ is ‘a divisive and destructive force’.

Not only are many of the so-called ‘cures’ for autism that they promote worse than useless – causing discomfort and distress to the children, and even, in very rare cases, death – but the continual drive to ‘defeat autism’ prevents parents from coming to terms with their children’s condition, and can cause them to have a rather negative view of their own children.

‘The unresolved grief of parents of children with autism is a particular problem’, writes Fitzpatrick in his book, ‘because they still have a child though perhaps not the child they anticipated’.

There has been a similar experience in my own family. The firstborn child of my youngest brother, Chris, was diagnosed with a severe form of epilepsy at the age of six months. Although there was a possibility that a combination of anti-epileptic drugs or neurosurgery might cure his epilepsy, in retrospect it was clear that his neurological disorder would very likely result in moderate or severe learning difficulties.

Facing up to the fact that your child may never develop normally or lead an independent life is very hard for any parent, and will inevitably take time. But at some stage acceptance is necessary, not just for the parents’ own peace of mind, but also for the good of their children. Otherwise, as Fitzpatrick asks, ‘what happens to the child, the human being, who is seen only as a “burden”?’ Of course, raising a child with severe learning difficulties is difficult, but it is a lot more difficult in the absence of acceptance.

Parents of children with autism who are bombarded with all kinds of promises of wonder treatments are prevented from working through their grief and reaching the stage of acceptance. All of the emphasis on ‘windows of opportunity’ and the importance of ‘early intervention’ puts an immense amount of pressure on parents of children with autism and other learning difficulties, who often end up running around desperately seeking a ‘cure’, and trying one after another; they can become obsessed with ‘fixing’ their child.

‘At best, [these “wonder cures”] divert and dissipate already over-stretched parental energies; at worst they encourage an enduring rage that is likely to compound family difficulties, to intensify isolation and lead ultimately to demoralisation’, writes Fitzpatrick in Defeating Autism.

My brother and his wife spent the first years of their son Magnus’ life trying everything they thought would help; and many of the things they tried were empirically tested treatments that had some degree of success. But there was no ‘cure’ for Magnus, and when my brother was forced to face up to this fact, his grief was intense. Soon afterwards, however, he also felt that an enormous weight had been lifted off his shoulders. As he recently told me, it is then that he was able to stop desperately hoping for a ‘recovery’, and concentrate on developing a relationship with Magnus as a son whom he could love and cherish for who he is.

Fitzpatrick touchingly describes the grief he and his wife went through while getting to terms with their son James’ autism – a profound grief that eventually led to acceptance:

‘We have come to accept that James will never lead an independent life and our efforts are devoted to ensuring that he gets the level of support he needs to maintain the highest possible quality of life. And we try to look on the bright side. We relish his enjoyment of simple pleasures, his infectious laugh, his wonderful smile, his curly red hair. We will never have to worry about his exam results or over what time he returns home from a night of clubbing’, he writes.

Having come to terms with the fact that James, who now attends a residential school, would not ‘recover’ from autism, ‘we try to do the best we can to strengthen his engagement with the world… seeking mutually enjoyable activities that foster social interaction, such as swimming or trampolining, and trips to restaurants and supermarkets’.

It is understandable that parents will try anything they think may possibly improve their children’s condition. That is why Defeating Autism: A Damaging Delusion is such an important book. Fitzpatrick shows clearly that parents need to channel their energies into strategies that will benefit their autistic child and their families, not spend all of their time and energy on trying untested, time-consuming, expensive and potentially harmful treatments.

‘I decided to write the book after seeing so many parents go down the rabbit hole, latching on to one idea after another that they believed would offer some hope of a cure’, Fitzpatrick told me.

In his book, he painstakingly analyses the available evidence for everything from the ‘wonder cure’ of secretin and detox and immune system treatments to special diets and supplements – and exposes the distinct lack of scientific evidence for their efficacy. There is no evidence that these treatments work, and worse, some of them are potentially harmful.

Fitzpatrick writes: ‘Here is another paradox thrown up by the biomedical movement. Its supporters are strident in their demands for trials of the safety of vaccines [but] when it comes to biomedical treatments they reject any suggestion that these should be subjected to proper evaluation. They are outraged by the presence of infinitesimal quantities of mercury in vaccines (which prevent bacterial contamination without ever being associated with any adverse effect), yet they seem quite happy to inject children with a product like secretin, a crude extract of pig pancreas that was developed for the purpose of testing pancreatic function but has never been tested in any way for therapeutic use.’

Fitzpatrick warns that ‘plausible theories and their misguided advocates could deliver desperate parents into the hands of unscrupulous practitioners’, adding: ‘This was confirmed to me one day in [my surgery] when the mother of a boy with autism told me that she had spent the equivalent of his disability living allowance for one year on a course of secretin injections provided by a Harley street clinic. For a single parent reliant on benefits, the outcome of this encounter with a biomedical practitioner was not only disappointment when the miracle cure failed, but financial hardship for the whole family.’

Some may interpret Fitzpatrick’s message as one of resignation. But his book is far from pessimistic. Instead – by exposing the charlatans who take advantage of parents and by trying to help prevent parents from diverting their energies – it could make a big difference to families with autistic children. As Fitzpatrick told me: ‘It is not resignation to accept the current state of science in relation to autism.’ There are no ‘cures’ and most of those who claim to be able to defeat autism are preying on the grief of desperate parents.

‘My aim with this book is to encourage parents to emphasise the positive in relation to their autistic children, to pursue interventions for which there is good evidence of benefit (and some guarantee of safety) and to avoid the diversions and dead-ends offered by the perspective of “defeating autism”’, he writes in the introduction.

As Roy Richard Grinker, professor of anthropology at George Washington University and author of Unstrange Minds, says of Fitzpatrick: ‘He shows us that our children are indeed being helped tremendously, not by unscientific autism treatments that falsely promise cure or recovery, but by educators, scientists, evidence-based therapies, and new understandings of what it means to be human, and different, in the twenty-first century.’

Fitzpatrick also persuasively and eloquently demolishes the key plank of the two main vaccination panics: claims in the UK of a link between the measles, mumps and rubella (MMR) vaccine and autism, and in the USA of a link between mercury-based vaccines and autism.

When I met with Fitzpatrick back in 2004 to discuss his previous book, MMR and Autism, he stressed that any risks associated with the MMR vaccine were virtually non-existent: ‘When 500million doses of a vaccine have been given in 80 countries over more than 30 years, and serious adverse reactions are found to be extremely rare, then it is fair to describe it as “safe”’, he said. And he argued that the case for immunisation is indisputable: ‘Diseases that had caused devastating epidemics in living memory, and had produced a significant toll of death and disability into the postwar period, have virtually disappeared.’

Campaigners argue that there has been a growth in autism cases of ‘epidemic’ proportions in the Western world over the past two decades – due to everything from vaccines and antibiotics to pesticides and diet. But the increased prevalence of autism is better explained by increased awareness and improved diagnosis, along with the broadening of the concept of autism, Fitzpatrick shows.

Instead of trying to fight the ‘environmental toxicity’ of the modern world, parents should concentrate on fighting for the best possible education and social care for their children. But above all, they should interact with them, he says. Fitzpatrick argues: ‘Sometimes it is more difficult simply to spend time with our children than it is to pursue investigations and treatments.’ He explains that children with autism may retreat into their own world. They may pursue obsessional rituals and challenging behaviours. ‘The very fact that it is so difficult to engage with children with autism underlines the importance of continuing to try’, he writes.

‘[Acceptance] means parents and others accepting and loving the autistic child as another human being, and it means accepting that the quest for a miracle cure is not likely to be helpful for their autistic child, for any other children they might have, or indeed, for themselves.’

This book should be read, not only by parents of autistic children, but by policymakers, professionals and practitioners working in the field of autism, and by academics and scientists interested in the media and the public presentation of science and medicine.

Helene Guldberg is the author of Reclaiming Childhood: Freedom and Play in an Age of Fear, which will be published on 29 January 2009. (Buy this book from Amazon(UK).) The London launch of her book, organised by spiked and Routledge, will take place on 29 January in central London. See the spiked events page for full details. Visit Helene’s website here.

Defeating Autism: A Damaging Delusion, by Michael Fitzpatrick is published by Routledge. (Buy this book from Amazon(UK).)

This article is republished from the December 2008 issue of the spiked review of books. View the whole issue here.