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.