The ghost of the ‘refrigerator mother’

In the foreword to Louder Than Words: A Mother’s Journey Into Healing Autism, Jenny McCarthy is described as the ‘polar opposite’ of the ‘refrigerator mom’, the quasi-demonic figure blamed by a generation of postwar American psychotherapists for causing autism.

Yet the concept of the ‘warrior mom’, as McCarthy presents herself in her latest book, is not so much the polar opposite of the ‘refrigerator mother’ as a distorted mirror image. The ‘warrior mom’ is yet another reflection of the culture of mother-blaming and a manifestation of the burden of guilt carried by parents as a result of the influence of pseudoscientific speculations about the causes of autism.

A former model, actress and author of popular books about pregnancy and childbirth, Jenny McCarthy has become a major force in autism controversies in the US. In Louder Than Words, she describes how her son Evan was diagnosed with epilepsy and autism, how she retrospectively came to blame vaccines (especially MMR), and how she ‘recovered’ him from autism through the regime of diet, vitamins, supplements and medications promoted by the Defeat Autism Now! (DAN!) network of ‘unorthodox biomedical’ practitioners.

The (unconvincing) evidence of Evan’s ‘recovery’ is an observation by a visiting ‘woman from the State department’ that ‘this isn’t autism anymore’. McCarthy’s book seethes with rage – against the medical professionals (who vaccinated Evan, treated his epilepsy, diagnosed his autism), against her husband (who soon disappears from the scene), against mothers (‘woe-is-me-moms’) who do not accept her strident advocacy of quack treatments. With her distinctive combination of profanity and religiosity, she tells how she believes God has chosen her to become the voice for mothers of children with autism.

In Mother Warriors, McCarthy’s collection of stories and essays that was a hurriedly published sequel to Louder Than Words, we learn that since divorcing Evan’s father, McCarthy has linked up with film star Jim Carrey who now provides celebrity endorsement for her increasingly high-profile, anti-vaccine campaign. Though Mother Warriors provides no further information about Evan, McCarthy’s personal story is complemented by the stories of several more mothers (and one father) of their children’s alleged vaccine damage and claimed biomedical recovery. The common themes are of guilt over giving vaccines, anger against doctors and of faith and hope in alternative therapies.

Though she claims extensive research at the ‘University of Google’, McCarthy provides no evidence that vaccines cause autism or that the treatments she recommends are either effective or safe. They are certainly expensive. According to Coral Bergmann, writing in Mother Warriors, these cost the ‘average family’ pursuing biomedical therapies between $30,000 and $70,000 a year (the median household income in the USA in 2007 was $50,000). While promoting DAN! as ‘an organisation of doctors and scientists who are the medical leaders in healing children with autism’, she does not acknowledge that this leading role is not recognised by any legitimate scientific or medical authority (or that DAN! doctors are the major beneficiaries of the parental quest for a cure for autism).

A number of common themes link McCarthy’s ‘warrior moms’ with the spectre of the ‘refrigerator mother’ popularised by the child psychotherapist and author Bruno Bettelheim and others in the 1950s and 1960s. First, there is a common belief that autism has some environmental cause. Then it was toxic parents; today it is alleged environmental toxins (such as vaccines containing traces of mercury or MMR) to which parents have exposed their children. These theories also have the common features that they are entirely speculative and lacking in scientific support.

Second, both concepts are linked to ‘conversion narratives’, quasi-religious experiences of personal transformation or redemption with deep roots in evangelical Christianity (see James T Fisher’s piece ‘No Search, No Subject? Autism and the American Conversion Narrative’, in Mark Osteen’s collection of essays, Autism and Representation). Then, cure was achieved through the intervention of a charismatic psychotherapist. Today, recovery is also the result of the ministry of another charismatic therapist, in the form of a DAN! practitioner prescribing biomedical therapies.

Third, there is a striking persistence of military metaphors. The Empty Fortress was the title of Bettelheim’s book and his characterisation of the imprisoned self of the autistic child (notoriously compared with a prisoner in a concentration camp) that had to be liberated through psychotherapy. ‘My son is trapped inside this label called autism, and I’m gonna get him out’, declares McCarthy in Mother Warriors. Endorsing key aspects of McCarthy’s campaign in a recent speech in London, Bob Wright, founder of Autism Speaks and grandfather of an autistic boy, talked of his ‘crusade’ against autism.

Dr Michael Fitzpatrick’s new book
published by Routledge

The ‘refrigerator mother’ and the ‘warrior mom’ are linked through the decades by feelings of guilt, anger and blame. In Mother Warriors, McCarthy tells of a cathartic moment when her therapist tells her that ‘you have never dealt with the fact that you feel guilty for Evan’s autism’. Though she at first disputes this – ‘No, Evan’s paediatrician is guilty for his autism’ – when Jim later agrees with her therapist she bursts into tears, crying for hours, even days. When the guilt subsides, the rage takes over. Drying her tears, as she puts it, ‘I decided I had to go and kick some ass in the paediatric world’. Blaming themselves, blaming their doctors, blaming the world, ‘warrior moms’ carry the burden of both causing and curing their children’s autism.

A review of the Bettelheim story offers some insights that may be of value in assessing the new generation of autism healers. Consider the essay ‘Bruno Bettelheim, Autism, and the Rhetoric of Scientific Authority’ by Catherine Demaria Severson, James Arnt Aune and Denise Jodloswski in Osteen’s Autism and Representation. The authors record the now familiar facts that Bettelheim’s psychotherapeutic qualifications and experience were fraudulent, as were his claims that his techniques were successful in ‘curing’ children with autism. They seek to explain Bettelheim’s influence in the context of ‘postwar fascination with Freud and the Holocaust’, his ‘careful management of public image’ and ‘careful attention to writing for a popular audience’, and ‘a generalised anxiety about the family in 1950s and 1960s America’.

Though his ‘science was shoddy, his rhetorical strategies were clever’ – above all he succeeded in promoting ‘the image of the “Good Doctor”’. If the ‘warrior moms’ have inherited the legacy of the ‘refrigerator mother’, today’s DAN! doctors (taking advantage of a culture in which the authority of biomedicine has triumphed over psychoanalysis and anxieties about the family are even greater) are readily identified as the descendents of Bettelheim.

Families of Adults with Autism, edited by Jane Johnson and Anne Van Rensselaer, is dedicated to the memory of Bernard Rimland, who died in 2006. A California psychologist whose son Mark was diagnosed with autism in the late 1950s, Rimland became a pioneering parent activist who challenged Bettelheim’s parent-blaming theories. It is ironic that Rimland subsequently became an advocate of unorthodox biomedical interventions in autism and founded the Defeat Autism Now! network that has done much to restore the burden of guilt now carried by a new generation of parents like Jenny McCarthy. Johnson and Van Rensselaer have brought together ‘stories and advice for the next generation’, from parents and siblings of around 30 adults, now in their thirties, forties, even fifties, who were diagnosed as autistic in the days before Rain Man made autism a familiar concept.

These stories – some sad, some poignant, some inspiring – provide a history of the rapidly changing character of provisions for people with autism over recent decades and of the struggles of parents and parent organisations to establish them. In the postwar decades, children with autism (in common with people with mental handicap or mental illness) were often consigned to residential hospital-type institutions. In the 1970s and 1980s these gave way to ‘group homes’, often in rural environments. More recently, supported living schemes have become fashionable, in the UK as in the USA.

A striking contrast is immediately apparent between these stories and those in the Warrior Mothers collection: whereas McCarthy focuses on tales of ‘recovery’ in young children, none of the accounts in Families of Adults with Autism tells of a diagnosis of autism ‘lost’ or withdrawn. Indeed, none of these adults is living independently and some accounts describe major enduring problems of self-injury or other challenging behaviours. This may be a result of selection – these stories largely come from parents of adults with high levels of need. It may also be a result of the inaccurate reporting of ‘recovery’ in the McCarthy cases. It is also striking that, although many of the contributors pay tribute to Rimland’s role as a campaigner, few give more than a token acknowledgement to the benefits of his biomedical treatments (such as Vitamin B6 and Magnesium, Dimethylglycine and Secretin) and none claims that such interventions have resulted in ‘recovery’.

The advice to the next generation that emerges from Families of Adults with Autism emphasises the importance of ensuring the best possible educational input to maximise the potential of people with autism while providing the appropriate level of resources and expertise, in terms of housing and social services, to support affected families and individuals.

‘No one – either autistic or non-autistic – speaks for everyone in the autism community’, writes Mark Osteen in the conclusion to his excellent edited collection Autism and Representation, the outcome of a collaboration of academics from a variety of disciplines, including several, like Osteen himself, with autistic family members. Osteen counsels wisely that it is ‘essential to attend to a range of voices, not just the loudest ones, and with a scepticism tempered by tolerance, weed out the facts from the fictions’. This book includes a range of voices well worth attending to, with contributions already cited from James Fisher and Katherine DeMaria Severson and others, as well as chapters from sociologist Majia Holmer Nadeson and literary critic Stuart Murray (which fortunately are more readily accessible in their own books than in this expensive hardback edition).

Murray provides a survey of representations of autism in literature and culture, from the figure of ‘the idiot’ in nineteenth-century literature to the cult of the savant, popularised in numerous books and films and TV features over the past two decades. In his ‘comprehensive introduction’ to Autism and Representation, Osteen focuses on contemporary writing, offering astute and sensitive appraisals of a wide range of novels, parental accounts and autobiographies. Cultural representations of autism are considered within the framework of ‘two overriding concepts’, defined by Murray as the recognition that to discuss autism is ‘necessarily to discuss the condition of being human’, and that ‘any attempt to account for the place of autism in the world needs to deal with the fact of autistic presence’.

While acknowledging the increasing subtlety of portrayals of autism – notably in Mark Haddon’s best-selling The Curious Incident of the Dog in the Night-Time – both authors are concerned at the persistence of sentimental and voyeuristic accounts. Autism seems to offer endless scope as a metaphor, as ‘a prop, a prosthetic device’, for the discussion of contemporary anxieties about masculinity, fatherhood, the family. Reflecting on the ‘outlandish, offensive misrepresentation of autism’ in Bruce Beresford’s Silent Fall and other films, Murray concludes that ‘overall, it is debatable how much progress has been made in cinematic depictions of autism since the foundational success of Rain Man’.

For Murray, there is a danger that ‘autism as metaphor’ floats free from the condition itself and the concept becomes so diffuse as to be meaningless. He links this metaphoric inflation of autism to the quest for environmental causes and the popular resonance of speculative notions such as that of an autism epidemic attributable to vaccines: ‘Possibly what unites all these scenarios is an idea of toxins, of the problem being some form of poison, be it physical and somatic or environmental.’ As he presciently observes, ‘at times, we seem to worry that we cause autism by living the wrong way’.

In his concluding chapter, ‘Towards an empathetic scholarship’, Osteen focuses on the recurrent theme that emerges from representations of autism in popular culture: ‘the persistence of parent-blaming’ and the need to ‘banish the shade of Bettelheim’. As though anticipating McCarthy’s latest book, he warns of the way in which parental self-blame is linked to the ‘myth of the super-competent parent’, and ‘is easily transformed into a penchant to blame whatever scapegoat seems handy’. He notes how guilt makes parents ‘easy marks for unscrupulous or careless practitioners’. For Osteen, the ‘first step toward genuine empathy and community’ is to ‘move beyond discourses of blame that divide us and preserve outdated and damaging views about autistic people and their families’. While sharing Osteen’s ‘aversion to conversion’ (and his outlook on the delusional character of the quest for ‘recovery’), I would readily say ‘Amen’ to that.

Dr Michael Fitzpatrick is author of the new book Defeating Autism: A Damaging Delusion, published by Routledge. It is being launched at the Science Media Centre at the Royal Institution, on Albemarle Street in London W1, at 6.30pm on Tuesday 25 November. (Buy this book from Amazon(UK) or Amazon(USA).)

Books discussed in this essay:

Mother Warriors: A Nation of Parents Healing Autism Against All Odds, Jenny McCarthy, Dutton, 2008
Louder Than Words: A Mother’s Journey Into Healing Autism, Jenny McCarthy, Dutton, 2007
Families of Adults with Autism: Stories and Advice for the Next Generation, Jane Johnson, Anne Van Rensselaer (eds), Jessica Kingsley, 2008
Representing Autism: Culture, Narrative, Fascination, Stuart Murray, Liverpool University Press, 2008
Autism and Representation, Mark Osteen (ed), Routledge 2008
Constructing Autism: Unravelling the Truth and Understanding the Social, Majia Holmer Nadeson, Routledge, 2005