The trouble with autism-lit
A spate of new books confirms that making autism ‘fashionable’ is not making life any easier for the parents of autistic children.
Marti Leimbach, Daniel Isn’t Talking, London: Fourth Estate, 2006
Stephen Venables, Ollie: The True Story of a Brief and Courageous Life, London: Hutchinson, 2006
Richard Lathe, Autism, Brain and Environment, London: Jessica Kingsley, 2006
Michael Blastland, Joe: the only boy in the world, London: Profile, 2006
Charlotte Moore, George and Sam, London: Penguin, 2005
As the parent of an autistic boy, and as a doctor in general practice who sees children with autism and their families, I have a special interest in the purveyors of potions and therapies that promise a cure.
The mother of a young man with autism and severe learning difficulties recently recalled bitterly how, six years ago, she had spent her son’s disability living allowance for one year (more than £5000) on a course of secretin injections provided by a private doctor in Harley Street. In the late 1990s, secretin, a hormone preparation used to test the functioning of the pancreas, enjoyed a brief wave of popularity as a miracle cure for autism but was rapidly discredited. For this family, it only compounded the inevitable disappointment of misplaced hopes with financial hardship.
Secretin is history, but parents are now being seduced by a range of similar products and treatments, including heavy metal chelation therapy, exclusion diets, antibiotics and anti-fungals. The common features of these interventions are a lack of any coherent scientific rationale, a dearth of evidence of efficacy or safety, and a high cost to parents – and, potentially, an even higher cost to their children. (1) Whether these treatments are offered by Harley Street snake-oil salesmen or by true believers linked to parent groups, the consequences for families are the same: scarce energies wasted, limited funds depleted, scant reserves of hope dissipated.
From the film Rain Man, for which Dustin Hoffman won an Oscar in 1989 for his depiction of an autistic man with savant skills, to The Curious Incident of the Dog in the Night-Time, Mark Haddon’s bestselling 2004 novel about a boy with Asperger’s syndrome, autism has become a fashionable subject in contemporary culture. The vogue for identifying autism in scientists and artists of the past (Newton, Einstein, Warhol) and even among contemporary celebrities (Bill Gates) romanticises people with autism as creative and ‘interestingly different’. (2)
But autism is not simply a different – and more exotic – way of being that causes minor problems of adjustment. It is a profound disorder of development that creates enormous difficulties for effected individuals throughout their lives, even if they are among the rare few blessed with special talents. Though well intentioned, the depiction of autism as a higher form of individuality risks demeaning the suffering experienced by people with autism and their families, while downplaying their need for specialised services. The exposure of the routine abuse in care homes in Cornwall, following earlier reports of suicides and homicides among desperate parents struggling with inadequate social care provisions, confirm that cruelty and neglect coexist with sentimentality in society’s approach towards people with autism and learning difficulties. (3)
A spate of parental accounts of life with autistic children reveals how even well-off and well-educated parents struggle to cope with their autistic children and shows how their burdens are increased by the pseudoscience and quackery flourishing in the world of autism.
Stephen Venables, a distinguished mountain climber and travel writer, has written a moving tribute to his son Ollie, who was diagnosed as autistic, then developed leukaemia, from which he appeared to recover, before he succumbed to a brain tumour and died at the age of 12. Marti Leimbach’s novel Daniel tells the story of a literary American whose marriage to a stiff Brit, a former public school boy businessman, collapses under the strain of the diagnosis of their son’s autism (in interviews, Leimbach who has an autistic son, has confirmed that the novel is based on her own experiences.) These accounts reveal the impact on parents of the theory of a link between the MMR vaccine and autism, and the difficulties arising from popularity in these circles of ‘unorthodox biomedical’ treatments and intensive behavioural educational programmes.
Venables recycles the familiar themes of the campaign against MMR, notably in the condescending contrast between his wife Rosie, ‘an intelligent, responsible, educated mother’, who instinctively questions the triple vaccine, and those ‘irresponsible feckless mothers’, whom he assumes to be the target of government immunisation campaigns. Venables reproduces (without reference or acknowledgement) a slew of quotations from the notorious ‘information pack’ produced by the solicitor Richard Barr who led the anti-MMR litigation (only to abandon the campaign when the Legal Services Commission withdrew legal aid funding, leaving more than 1000 families – including the Venables – with nothing, and Barr’s firm with receipts of more than £5m). (4)
Venables’ unshakeable conviction that MMR caused Ollie’s autism is particularly strange because biopsies (taken following a private consultation with Dr Wakefield at the Royal Free Hospital) failed to confirm measles virus in the gut, as did further specimens studied following his autopsy. For Venables, ‘this did not alter our belief that the vaccine had been one important factor, amongst others, in his becoming autistic’. For Leimbach’s fictional mother Melanie, the MMR-autism link is also an article of faith, a belief to which she clings with ‘absolute certainty’ as she recalls with anguish the day she ‘held Daniel’s chubby thigh as the nurse readied the syringe’. Though the MMR-autism theory is now discredited, these accounts reveal the lingering burden of guilt borne by parents, many of whom still cling to the theory, despite the mountain of scientific evidence against it.
Both Ollie and Daniel experienced the full rigours of ‘unorthodox biomedical’ interventions, including gluten-free/casein-free diets and multivitamin/multimineral preparations. Ollie also underwent a two-week treatment with hyperbaric oxygen and a course of mesalazine recommended by Dr Wakefield following colonoscopy. This drug, commonly used for the treatment of ulcerative colitis, produced no benefit – ‘in fact it disturbed him quite badly’. After flying Ollie to Chicago to a clinic which prescribed a ‘protocol of mineral and vitamin supplements intended to stabilise heavy metals’, the Venables were advised by a British promoter of treatments for candida and gut dysbiosis that the US doses of vitamin B6 might be the cause of his epileptic fits.
Stephen Venables was understandably left in a state of exasperation and confusion: ‘I don’t know what to think…I don’t know what we should do.’ Marti Leimbach describes a similar state of perplexity as she records the daily grind of maintaining prescribed diets of unpasteurised goat’s milk, grated courgettes and organic egg yolks and lists the specialists in the London area, mainstream and marginal, to whom Melanie brings Daniel, including ‘every whacked out practitioner of alternative medicine you can find in this city’.
Both Venables and Leimbach provide detailed breakdowns of the financial costs of all these consultations, investigations and treatments, amounting to many thousands of pounds. While both plead poverty, it is clear that, through family and personal networks, both have access to considerable resources. Venables reports an overnight stay with a family friend, a surgeon who is ‘outrageously funny, clever, successful’, features apparently common to his social circle in which there is always somebody to help out with a holiday, a car, support in a crisis. For Leimbach’s Melanie, with a house in one of London’s most exclusive neighbourhoods, things reach such a pitch that she is forced to consider selling the family’s second home, a cottage in the country. It is good that some parents can rely on support and resources of this kind – what worries me is the burden that the pursuit of these regimes imposes on families who lack any such reserves.
Not surprisingly, nobody has yet written an account of bringing up a child with autism on benefits in a poky high-rise council flat with a few feet of balcony instead of a garden. Yet, even if a father like Stephen Venables can relate celebrity-to-celebrity to leading figures in the world of autism, and be on first name terms with all Ollie’s medical specialists, he is still at the mercy of quacks. Even a mother like Melanie, with a postgraduate degree from Oxford and a husband who buys his shirts in Jermyn Street, is reduced to pleading that though all these expensive treatments ‘might have been a waste of time, but how did I know before I tried?’
These parents have become victims of an outlook that combines extreme distrust for mainstream authorities with extraordinary credulity towards alternatives. Though they are sceptical about medical science and resentful towards the medical profession, they seek to justify their beliefs in biomedical terms. At the same time, they are sympathetic towards a range of alternative health approaches. The result is an eclectic synthesis of outdated biochemical and immunological theories and combinations of medical and alternative therapies. (5)
Both theories and therapies are promoted by a loose coalition of enthusiastic amateurs (often parents), disaffected doctors and researchers who have, for one reason or another, become alienated from the mainstream, and others with a more commercial interest. It is curious that the parents never suspect that the reason why their favoured researchers have been spurned by their peers is that their research is second, even third or fourth, rate. It is also curious that, while parent groups are preoccupied with alleged conflicts of interest among supporters of the childhood immunisation programme, they seem to be oblivious to the financial benefits derived by those providing alternative treatments.
Richard Lathe’s book provides a vivid illustration of the difficulties facing parents desperately seeking some form of treatment for their autistic children. (6) Lathe was formerly a research neuroscientist, but currently holds no academic post. The book includes detailed accounts of researches into the limbic system (his former area of academic study) and surveys of genetics, endocrinology and immunology in autism.
These chapters establish the author’s authority in these fields. What they do not do is specifically support his central and entirely speculative thesis on the role of environmental toxins in autism – and his advocacy of the full range of unorthodox biomedical interventions. The book does not declare his close links to a group in Edinburgh, which in April opened a private clinic offering unorthodox biomedical tests and therapies. The clinic’s chief scientist is Lathe’s good friend Lorene Amet, a former neuroscientist who has an autistic son, and is also co-editor (with Dr Wakefield) of the virulently anti-immunisation journal Medical Veritas. Certainly Autism, Brain and Environment could serve as a publicity brochure for the Edinburgh clinic.
Though Lathe’s book is presented (with 1400 references) as a contribution to the scientific debate, its main readership is likely to be among parents who may be taken in by its aura of scientificity. Parents’ difficulties are compounded by the fact that the book comes with an endorsement from Professor Simon Baron-Cohen, one of Britain’s leading autism authorities. (This appears alongside an endorsement by the Kentucky chemist Boyd Haley, who blames mercury for a wide range of disorders, including autism, which he dubs ‘mad child disease’.)
It seems that Professor Baron-Cohen was impressed by the book’s sections on genetics and failed to notice its comprehensive endorsement of quackery. This is worrying. Leading authorities in the field of autism played an ineffectual role in the MMR controversy. They could have spoken out more forcefully, much sooner. In the reaction to books like this, we are once again seeing a failure to draw a clear line between serious science and pseudo-science.
Another common theme in the Venables and Leimbach accounts is their pursuit of the ‘applied behaviour analysis’ (ABA) approach pioneered in California over the past 30 years by the Norwegian psychologist Ivar Lovaas. Both Ollie and Daniel experienced these intensive behavioural methods in the form of home programmes delivered by parents, volunteers and paid helpers, guided by a visiting therapist. Though Ollie seemed to make some progress, the burden rapidly proved too much for his parents and he was transferred to a residential school (an option savagely disparaged in Leimbach’s novel). The fictional Daniel too made early progress, rapidly acquiring language, but we do not learn whether this was sustained. This is largely because the focus of the author’s attention shifts from Daniel to Andy O’Connor, the Irish hunk of a therapist, with his ‘torn jeans, his chestnut hair all askew’, who soon becomes her lover (surely in defiance of all professional ethics? Thankfully, it’s fiction).
The appeal of ABA to parents rests heavily on claims made in relation to a mere eleven children: the Lovaas Nine and the Maurice Two. In a famous paper published in 1987, Lovaas reported that 47 per cent of children following his programme (9 out of 19) had advanced sufficiently to progress into mainstream education (an average overall improvement in IQ of 20 points was reported). (7) In her 1999 book Let Me Hear Your Voice, New Yorker Catherine Maurice credited ABA with returning her two children from autism to normality within two years. (8)
However, subsequent studies have not achieved the rates of improvement reported in Lovaas’ 1987 report (in which therapists used ‘aversive’ techniques which have now been abandoned). (9) Indeed, a study carried out in Britain in 2002 found that, of 66 children studied, none attained ‘normal functioning’ and, though some progress was noted in mental age, adaptive behaviour and language, there was, on average, no change in IQ scores. (10) The authors concluded that ‘the model of parent-managed ABA provision that has developed has not proved sufficient to bring about these benefits in most cases’. The hopes of rapid ‘recovery’ fostered by Maurice’s influential book have rarely, if ever, been realised. Stephen Venables, who helped to found the ABA advocacy group in Britain, reports that when he and his wife subsequently received its newsletter, they found it ‘hard not to feel bitter when we read about other children progressing’, while with Ollie it seemed to be a matter of ‘simply surviving from day to day’. The problem with Leimbach’s uncritical advocacy of ABA is that it takes no account of the experience of most parents – that of limited progress despite immense efforts and of disappointment at their failure to achieve the promised outcomes.
Though there is good evidence that behavioural techniques can be helpful for children with autism, the ABA approach has been ill-served by some of its more dogmatic advocates. As one perceptive critic has observed, ‘the whole ABA movement appears increasingly more like a cult than a science: there is a charismatic leader, a doctrine, a failure to engage with criticisms, inquisition and denunciation of any who criticise (however mildly), misrepresentation of critics, and proselytising exercises to gain more converts and spread the word’. (11) A number of adults with autism, some of whom have experienced intensive behavioural interventions as children, have repudiated ABA as a coercive technique. (12) While these critics may not be representative of all people with autism, parents should listen carefully to what they have to say, precisely because so many who have been through this process are unable to express their views in words.
In his account of his autistic son Joe, broadcaster Michael Blastland also describes his experiences of ABA. Though Joe made some progress – learning, for example, how to use prepositions – the usefulness of any such advances was limited by the familiar difficulty of generalising what he learnt in his lessons to any wider context. After several years of pursuing a ‘relentless and exhausting’ home programme, at the age of nine, Joe too moved to a residential school.
Though Blastland tells the story of Joe with journalistic flair and with warmth and humour, this book is much more than another parent’s tale of life with an autistic child. Joe is a profound reflection on the human condition prompted by the author’s intimate engagement with a child who appears to lack ‘almost all the philosophers’ traditional definitions of what it is to be human’. Joe, like many autistic children, appears to have limited self-consciousness, little sense of history or culture, only rudimentary language and no real sense of morality. ‘Is he still one of us?’ is the question his father bravely asks and, with reference to philosophers and historians, anthropologists and psychologists, and even a theologian, boldly tries to answer.
‘Yes’ is Blastland’s triumphant conclusion. Joe has the potential to be like us, even though that potential has been frustrated by ‘bad luck’, by some inscrutable biological process. More importantly, though Joe may not think so, he needs human society. He is not defined by biology (as Blastland poignantly observes of the science of autism, ‘biology has proved useless, so far’) but by relationships. Joe’s humanity depends on his acceptance by others – as his father concedes, ‘an alarming obligation’ for him and for us. Yet, confronting the ‘mind-blindness’ of autism can enable us to understand the richness of our own consciousness and how it works. As Blastland concludes, ‘I once flattered myself that I was self-aware, before I knew Joe, but I had scant awareness of the way I understood others’.
‘Acceptance is all’ writes Charlotte Moore, whose account of her two autistic sons George and Sam has recently been republished in paperback. Perhaps this is why that, of all the parental accounts, hers is the one in which the children themselves emerge most vividly as personalities, as children with autism rather than as the autistic children of parents preoccupied with their own predicament. Acceptance does not mean falsely celebrating the different individuality of the autistic child, nor does it mean adopting a fatalistic posture that nothing can be done. But it does mean 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 (Ollie and Daniel, like Joe and George and Sam, and my son, all have long-suffering siblings), or for themselves.
Parents feel sadness and anger when their child is diagnosed as autistic, but in time they usually stop railing at the world and direct their energies into strategies that will benefit their child and their families. Campaigns that channel parents’ energies into the pursuit of wonder cures, or into futile confrontations with doctors, scientists or other professionals, or into litigation over vaccines, offer illusory hopes – and targets for blame and recrimination. At best they divert and dissipate already overstretched parental energies. At worst they encourage an enduring rage that is likely to compound family difficulties, to intensify isolation and lead ultimately to demoralisation.
(2) Jennifer Elder, Different Like Me: My Book of Autism Heroes, London: Jessica Kingsley, 2006
(3) Alison Benjamin, ‘Horror Stories’, Guardian, 5 July 2006
(4) Barr R, Limb K. Measles, mumps and rubella vaccines (MMR or MR): information pack, London: Hodge, Jones and Allen (solicitors), 1998. See ‘The campaign against MMR’, Chapter 7, Michael Fitzpatrick, MMR and Autism: what parents need to know, London: Routledge, 2004
(5) See ‘Alternative Autism’, Chapter 6, Michael Fitzpatrick, MMR and Autism: what parents need to know, London: Routledge, 2004
(6) See the review of Autism, Brain and Environment, by Michael Fitzpatrick, British Medical Journal, 22 July 2006
(7) Lovaas, IA,. Behavioural treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 1987: 55, 3-9
(8) Catherine Maurice, Let Me Hear Your Voice: One Family’s Triumph Over Autism, Hale, 1993
(9) Victoria Shea, A perspective on the research literature related to early intensive behavioural intervention (Lovaas) for young people with autism, Autism 2004; 8(4): 349-367
(10) Peter Bibby, Svein Eikeseth, Neil T Martin, Oliver C Mudford, David Reeves, Progress and outcomes for children with autism receiving parent-managed intensive interventions, Research in Developmental Disabilities 23 (2002) 81-104
(11) Rita Jordan, Review of Parents’ Education as Autism Therapists: Applied Behaviour Analysis in Context, by M Keenan, K Kerr, K Dillenburger, London: Jessica Kingsley, 2000, in Journal of Child Psychology and Psychiatry 2001;42 (3):421
(12) Michelle Dawson, The misbehaviour of behaviourists: ethical challenges to the autism-ABA industry, 2004
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