Elsevier

Social Science & Medicine

Volume 71, Issue 5, September 2010, Pages 950-957
Social Science & Medicine

A consideration of medicalisation: Choice, engagement and other responsibilities of parents of children with autism spectrum disorder

https://doi.org/10.1016/j.socscimed.2010.06.010Get rights and content

Abstract

Classic studies of medicalisation point to the ‘rise of the experts’ as disempowering patients and refusing to acknowledge their expertise in their own lives. More recently, medicalisation scholarship has taken a different turn, arguing that patient choice is both a responsibility imposed on patients, and a driver of medicalisation. To what extent does autism, a childhood developmental disorder in which parents are invited to take a close role, instantiate these different manifestations of medicalisation? This paper reports on a qualitative study of parents’ experience of diagnosis and treatment, conducted in four states in Australia in 2008–2009. It draws on 49 interviews with parents of young children with autism, and with early intervention service providers and clinicians. Our study shows that the importance of choice in decisions around treatment cannot be subsumed under the single category of disenfranchisement or engagement. The diverse responses of parents to the diffuse, complex field of autism treatment illustrate an admixture of consumption, advocacy and education driving contemporary medicalisation.

Introduction

Classic studies of medicalisation point to the ‘rise of the experts’ as disempowering patients and refusing to acknowledge their expertise in their own lives. In an apparent shift from medicalisation, individual choice is increasingly privileged in the delivery of health and human services. Yet how much of this choice is genuine, or desired, or democratic, is also subject to critical analysis. Whereas studies of medicalisation during the 1970s focused on the power of the medical professions, during the last two decades recent analysis points to the production and marketing of pharmaceutical drugs as an engine of medicalisation. This produces, in turn, patients as consumers of health products, to whom both ‘problems’ and ‘solutions’ can be marketed (Conrad, 2005, Conrad and Leiter, 2004). The discursive construction of patients as rational, informed consumers who select from a range of treatment options has been criticised both on the grounds of the inappropriateness of consumerist models to the provision of essential services, and on the paradoxical injunctions to expertise it imposes on patients (Jepson et al., 2007, Roberts et al., 2009). Studies of prenatal testing and genetic screening illuminate the troubling effects of choice on both patients (Kelly, 2009, Samerski, 2009) and hospital staff (Williams, Alderson, & Farsides, 2002), and the implausibility of real choice being exercised not only under current conditions of resource constraints and service rationing, but under any conditions at all. In this sense, it has been argued that patient choice is the paradigmatic contemporary instance of medicalisation and medical power: ‘the new autonomy [is] at odds with precisely those abilities once implied by the notion of self-determination inasmuch as they tend to militate against freedom of action, trust in one’s own senses, and independent judgement’ (Samerski, 2009: 736).

At the same time, descriptions of patient choice and engagement as illusory or ideological cover are also simplistic. Policies that enable people with disability to choose their own support services and modalities have been hailed as genuine advances by some of the people most affected (Lord & Hutchison, 2003). Patient activism has led to demands on clinicians and health services for more comprehensive engagement and provision of information to patient groups (Rofes, 1998, Tomes, 2007). Patient and carer groups who demand access to drugs and services make use of both social movement tactics (resource mobilisation, advocacy, argument) and consumer agency: those who can afford to purchase drugs and services in mediated or direct markets (Conrad & Leiter, 2004). These demands lead to the formation of new communities and new identities, and new ethics of care. In this sense, it has been argued that patient choice is a paradigmatic contemporary instance of citizenship, generating ‘novel forms for political debate, new questions for democracy and new styles of activism’ (Rose & Novas, 2005: 7). Patient choice therefore appears to exemplify both the dilemmas and productivity of actually existing health services in rich countries.

Autism spectrum disorder, described hereafter as autism, is also subject to increasing analysis from the social sciences (Baker, 2006, Chamak, 2008, Hacking, 2009, Leiter, 2007, Poltorak et al., 2005), but little of this analysis focuses on the pervasive, and sometimes invidious, effects of choice. In part, this is because autism is so dense with meaning in other respects. The best known of these is the controversy over the (now discredited) association of the measles–mumps–rubella triple antigen with the onset of autism (The Editors of The Lancet, 2010). These and other controversies around aetiology emerged in the context of an apparent epidemic of autism, a disability once considered rare and now recognised as affecting significant numbers. An Australian report based on prevalence data in 2006 suggested a prevalence rate of 62.5 per 10,000: this compares to the first epidemiologic study of autism, conducted in England in 1966, which yielded a prevalence rate of 4–5 per 10,000 (MacDermott, Williams, Ridley, Glasson, & Wray, 2006). The numbers of affected people, and the rapid increase in these numbers, are also recognised as deserving a significant policy response. The Australian Government has committed $190 million for the Helping Children with Autism Package to help address the need for support and services for children with autism spectrum disorder. The package is being delivered by the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA); the Department of Education, Employment and Workplace Relations, and the Department of Health and Ageing. It includes funding for early intervention services, autism advisors to provide information on treatment and funding eligibility, autism-specific playgroups, six Autism-Specific Early Learning and Care Centres and a website. It also includes funding for the implementation of new Medicare items and for the training of teachers. These policy responses do not, of themselves, answer the epidemiological question of why numbers of people with autism are increasing. Within the clinical literature, there are three hypotheses for this increase: first, a ‘true increase’, or an increasing number of people with identical symptoms; second, ascertainment, or better detection and diagnosis; and, third, classification, or a change in the more symptoms classified as autism (Rutter, 2005). The literature suggests that some combination of the second and third of these hypotheses, which suggests in turn a ‘looping effect’ of policy, diagnosis, service provision and individual experience. This loop can be schematically described as follows. Throughout the 1980s and 1990s clinicians and families became aware that autism is both more heterogeneous and more widely spread than was previously thought (Newschaffer et al., 2007). Over that time and subsequently, policies and services have been improved as a consequence of activism by patients’ families and peak bodies. Brigette Charmak’s (2008) account of autism activism in France presents it as a genuine social movement, whereby parents of children with autism mobilised to broaden the clinical criteria for diagnosis of autism in line with other countries, and change the availability of services for children. The provision of services and support has, in turn, led to increased awareness of the condition among parents, teachers, early childhood workers and medical practitioners. That eligibility for these services is contingent on a diagnosis for autism leads to ethical dilemmas for diagnosing clinicians, who do not want to deny a child who is slightly outside the diagnostic criteria (or too young to be subject of a reliable diagnosis, or not yet manifesting behaviours which would lead to an unambiguous diagnosis), which are in any case diffuse and subject to constant re-evaluation (Skellern et al., 2005, Williams et al., 2008). These dilemmas and re-evaluations lead to more children being diagnosed with autism, leading to the need for better policies and services, and so on. Note that this loop does not describe ‘over-diagnosis’, or the false attribution of a syndrome to a child who does not have it. Such an attribution of over-diagnosis depends on fixing the symptoms of autism at a specific time and place, and allowing no change in the way the syndrome is recognised in clinical or experiential terms over time. The recent history of autism indicates a different account, which is that both people and classifications change. The interactions of clinical, policy and experiential knowledge in the arena of autism have led to changes in the way the syndrome is understood, experienced and treated.

The term ‘looping effect’ is Ian Hacking, 1995, Hacking, 2002, who uses it to describe the way that classifications of people change over time, as people themselves change as a result of classifications and subsequent investigation. Hacking also writes about autism, but in a different register, arguing that the neurocognitive characteristics of some people with autism illuminate differences between people that have hitherto not been recognised, that the ‘common bedrock’ of humanity is not what we thought it was (Hacking, 2009). This is part of a third strand of scholarship on autism, in addition to responses to the MMR controversy and its apparent epidemic proportions: the meanings of autism. Hacking argues that autism is relevant not only to clinicians but to analytic philosophy, because as our knowledge of severe autism grows it raises the question of whether ‘the concepts that have evolved over millennia for the description of neurotypicals are apt for the autistic life’ (Hacking, 2009: 55). Other studies of autism locate it in a broader biomedicalisation of problem behaviour among children, especially boys (Singh, 2004, Timimi, 2002). These studies both draw on and inform an emergent social movement amongst some adults with autism who use the repertoires of other social movements, especially the social model of disability (Baker, 2006, Chamak, 2008, Landsman, 2005), to argue that autism should be regarded as difference, not defect. The neurodiversity movement, as Hacking (2009: 45) writes, strives to enable autistic people to live more comfortably among those who are not autistic, and precisely not to ‘cure’ autism.

Parents of young children who are diagnosed with autism therefore find themselves in an enormously complex, often distressing, network of information and service provision. This paper discusses the burden of choice and responsibility with which parents are often presented, and the strategies used by practitioners and policy-makers to engage parents as decision-makers while also trying to minimise that burden. Parents of newly diagnosed children are presented with an array of treatments, and a bewildering amount of information about them. In common with prenatal testing or genetic screening, I argue, the process of diagnosis enjoins parents to make decisions whether they feel capable or not, and moreover does not allow them the option of opting out of decision-making. In this, parenting a child with autism can be seen to be similar to the disenfranchisement of women described in contemporary critiques of medicalisation (Samerski, 2009). Rather than self-determination and user-led treatment advancing the interests of parents and children, the contemporary era of consumerist models and choice is retrograde. This is only one type of several experiences, however, and different parents have different experiences—indeed, the same parents have different experiences over time. In common with AIDS activism and the disability movement, the process of diagnosis also mobilises parents to become very active. In some cases this involves becoming very engaged in their child’s treatment, to the point of becoming research literate and undergoing training to become a therapist themselves. Parents may also become engaged in the public arena, in advocating for better services and setting up support groups. However, any apparent distinction between passivity and choice, or indeed between engagement, consumption and activism, is blurred by the nature of autism and its treatment. To an unusual extent, advice on autism treatment emphasises intensity: the more, the better. Autism treatments are health services, but they are also purchased in mediated or private markets, so parents are advised to become active participants in their child’s treatment by purchasing as much treatment as they can. Parents are then faced with a choice of consumption (purchasing services), education (learning about evidence, training to become therapists), public advocacy (for services, or treatment), or all or none of these.

Section snippets

Background to the study

Autism is usually diagnosed around the age of three, and characterised by impairments in three domains: social interaction, communication and fixedness, or a lack of flexibility in thinking or behaviour. Children with severe autism may have no language, no interaction with their parents or caregivers, and no engagement in the imaginative and symbolic play typical for their age. They may be intensely distressed by changes to routine, engage in fixed or preoccupied behaviour and make repetitive,

Methods and sample

This paper is based on 49 in-depth, semi-structured interviews conducted between August 2008 and May 2009 for a research project entitled ‘Post-diagnosis support for people with Autism Spectrum Disorder, their families and carers’ conducted by researchers at the Social Policy Research Centre, University of New South Wales (Valentine, Rajkovic, Dinning, & Thompson, 2009). For this paper, data was analysed to investigate the effects, enabling or otherwise, of choice for parents, in an environment

‘Choice’ as obligation

Consistent with previous research (Gray, 1993), interview participants reported that the experience of diagnosis is distressing for parents. This is in part due to the nature of autism, which is known to be extremely socially debilitating and requiring life-long care in many cases, and in part due to parents’ expectations that effective specialist treatments will be immediately available. These expectations are often disappointed because of the very limited availability for these treatments.

Conclusion

Our research supports much of the burgeoning literature on the tensions inherent in treating patients as consumers, and the confusion and anxiety experienced by patients who are obliged to make decisions for which they fell ill-equipped. Our research also supports the growing literature describing new forms of activity and identity-formation by patients and service users. This activity is often challenging if not aggrieved, and in response to shortfalls in resources, but none the less effective

Acknowledgments

Other researchers on this project are Marianne Rajkovic, Brooke Dinning and Denise Thompson. Thanks to staff of the Autism Spectrum Disorders branch of FaHCSIA, who provided feedback on draft reports, and to SSM reviewers and editors. The opinions, comments and/or analysis expressed in this document are those of the author and do not necessarily represent the views of the Minister for Families, Housing, Community Services and Indigenous Affairs, or the Australian Government Department of

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