Uncertain realities: The complexities of
diagnosing autism in deaf children
A qualitative study of multi-‐disciplinary professionals in the UK
Master’s Thesis, June 2014
Natassia F. Brenman Student Number: 10599835 Contact: nfbrenman@gmail.com
Supervisor: Anja Hiddinga Second Reader: Stuart Blume
MSc Medical Anthropology and Sociology Graduate School of Social Sciences
Acknowledgements
I would like to thank all the staff at the Deaf Service, where I was based for my fieldwork. I learnt a huge amount from the team there and I am grateful to the Deaf colleagues for all their cultural insights. The interpreters and the research team at the service were a great support during data collection. I am also grateful to my informants from other services who took the time to speak with me and offer their perspectives. A big thank you to Professor Barry Wright, who was my second supervisor and who facilitated the project. His advice and deep knowledge of this subject has been invaluable. Finally, thank you to my supervisor, Anja Hiddinga, who has given fantastic academic guidance and support throughout.
Abstract
Uncertainty is an enduring feature of Western medicine, particularly within the field of psychiatry, where disorder categories are never entirely stable. This study is about the clinical uncertainty surrounding the assessment and diagnosis of autism in deaf children. Although autism diagnoses are known to be complicated and are often delayed in deaf children, the social, cultural and systemic processes surrounding them remain unexplored (Mandell, Novak, & Zubritsky, 2005; Wright & Oakes, 2012). Fieldwork was conducted within NHS child and adolescent mental health services in the UK, and was based at a specialist deaf service, which adopts a cultural model of deafness. Qualitative research methods were used to investigate the practices, perceptions and attitudes of 16 multidisciplinary professionals in generic services and specialist deaf services. Findings about clinical uncertainty in this context are presented within a Critical Realist framework, which posits that reality can be understood in different domains (the Empirical, the Actual, and the Real) (Archer, Bhaskar, Collier, Lawson, & Norrie, 1998). Within these three ‘realities’, uncertainty was characterised by: an ambivalence from professionals about the act of diagnosis and its function within the health system; the
liminality of cases in which it is unclear whether behaviour should be attributed to the
construct of autism and/or deafness (including cultural Deafness); and finally, the
disruption of norms that occurs when children do not fit easily into diagnostic categories.
Within this final domain, the work of Georges Canguilhem (1943/ 1991) is drawn upon to explore why the Western diagnostic system, based on statistical norms, is problematic in this context and generates so much uncertainty. Despite being associated with problems in the diagnostic system, uncertainty in itself was accepted as an inherent by-‐product of complexity in this clinical practice.
Table of Contents
Introduction………... 4
1. Key Concepts and Theoretical Framework………. 7
Objectivity and (un)certainty 7 Normality, pathology and “alternative socialities” 9 Fallible theories of a complex reality 11 Towards an ‘anthropology of uncertainty’ 11 A supporting framework 13 2. Context………... 15
British and bilingual: An introduction to the Deaf Service 15 A cultural perspective on clinical practice 16 A (recent) historical perspective on CAMHS and autism assessment 17 A research perspective: Validating diagnoses for deaf children 19 3. Methods………. 20
Development of Research Questions 20 Access and ethics 21 Informants 22 Observational work 23 Focus group discussion and interviews 24 Analysis 25 4. The Act of Diagnosis (The Empirical)……….. 26
5. From Behaviour to Construct (The Actual)………. 34
6. Norms, Normality and Pathology (The Real)……… 43
7. Discussion and Conclusions………... 55
Connecting realities: interconnections and implications 56 Missing data 58 Missing theory? 59 Future questions 61 Conclusions 62 References……….… 64 Annexes………. 70
Introduction
This began as a study about the act of diagnosis. Whilst my empirical starting point remains within this immediate and observable realm of clinical work, it has become an investigation into something less visible. I am interested in the clinical uncertainty that permeates the many layers of a diagnostic process. This involves engaging not only with professionals’ feelings of uncertainty– the doubts and concerns they express about their clinical practice– but also the source of their uncertainty. I have grounded my exploration in a specific diagnostic practice, which, even for the most experienced clinicians, is characterised by complexity and ambiguity.
“But the way she communicates– it’s just so odd…” A clinical psychologist has come to consult Dr M (a child psychiatrist) at the Deaf Service: a specialised mental health centre for deaf children and their families. Both clinicians are highly qualified experts in the field of developmental disorders, including autism. Both are hearing. The psychologist has been leading a team of mental health professionals in assessing a deaf child for what they suspect to be an autistic spectrum disorder. After an extensive battery of assessments, they were still undecided about whether they should make the diagnosis. The psychologist has a “strong sense” that the girl is autistic, but she needs the team’s support and a more robust set of results to back this up. Dr M is not so sure.
What made her say the child’s behaviour was so ‘odd’? “Well its simple things, like eye contact. She doesn’t make eye contact when we try to communicate.” Dr M agrees that this is a sign of autism (in deaf as well as hearing children) but given that the child has been placed in a mainstream school with no other sign language users, it is likely that the girl would have to devote most of her visual attention to lip reading rather than eye contact. They toss questions back and forth, struggling to get beyond the first indication that the psychologist’s intuition may be leading her astray. The more they talk, the more complex the case becomes. “I think we’d better refer this one to you,” the psychologist resolves. “This child is not receiving the support she needs and the school is struggling enough with the deafness, let alone something else. We need a diagnosis, but at the moment there’s just too much doubt from our side to give one.”
It is customary to introduce an issue such as this with a ‘typical case’ but what this anecdote tells us is that diagnosing autism in a deaf child is an expressly non-‐typical practice. There is no blueprint from which to work from and whether they realise it or not, professionals cannot simply apply their existing knowledge of autism in hearing children to deaf children. Here, one of the most basic indicators that a child may be autistic (a lack of eye contact) is thrown into a very different light, not just because that child was deaf, but because of the context she had been observed in. The complexity doesn’t stop here but it is enough to illustrate what professionals in this situation are grappling with: their understanding of what is ‘normal’– even within diagnostic categories– is profoundly challenged.
Although there are studies that highlight the complicating factors associated with the presentation of autism in deaf people (Wright & Oakes, 2012, for example) the small body of scientific literature in this field leaves clinicians with very little in-‐depth understanding of the issues (Szymanski & Brice, 2008). Despite the myriad of prevalence studies on autism in the general population, there are no representative figures for deaf children1. What we do know is that there are more autism diagnoses in deaf children than
hearing children, at least in the US (ibid.); that deaf children are diagnosed later than their hearing peers (Mandell et al., 2005); and that there are many reasons why misdiagnoses in deaf children are particularly likely (Szymanski, Brice, Lam, & Hotto, 2012). This indicates that the lack of knowledge and understanding documented in the scientific discourse on this issue is likely to have very real consequences for deaf children and their journey into the mental health care system.
If we know little about the prevalence and accuracy of autism diagnoses in deaf children, we know even less about the social, cultural and organisational processes that underpin them. I have been cautious in drawing on the dearth of social science literature focusing on autism (Lester & Paulus, 2012; Solomon, 2010), or the burgeoning field of Deaf studies (Ladd, 2003) as starting points, because they are necessarily bound to one or the other category (autism or d/Deafness). This would preclude important discussions about
1 The most comprehensive and commonly quoted study on this (Jure, Rapin, & Tuchman, 1991) was taken
from a clinical sample (deaf children who had been referred for neurology consultations) which was likely to have affected the very high rates of autism they found in deaf children (Hindley, 1997)
what happens when these categories collide: when professionals encounter the “something else” that the psychologist in the above anecdote was struggling to identify. I have therefore grounded myself in the practice of psychiatric diagnosis and have let the unknowns about this particular example guide my line of enquiry. Attending to unknowns, or the ‘unknowability’ of some clinical phenomena has been a key theme in the sociological study of medical uncertainty (Fox, 2000).
The elusive concept of ‘uncertainty’ in science and medicine has received a great deal of attention, particularly in relation to the field of psychiatry, which seems to be in constant pursuit of legitimacy, consensus and security (Leibing, 2009; Pickersgill, 2014; Rose, 2005). This is my theoretical starting point, and will be expounded further in Chapter 1, where I will set out the key concepts guiding this thesis. Here, I will also present a theoretical framework, which will support the exploration of uncertainty on multiple levels: Critical Realism posits that reality can be divided into 3 different domains of increasing depth (Archer, Bhaskar, Collier, Lawson, & Norrie, 1998). I have explored these multiple ‘realities’ through empirical work based in Child and Adolescent Mental Health Services (CAMHS) in the UK. In Chapter 2, I will introduce this context, with a focus on the Deaf CAMHS centre where I was based during the fieldwork. Chapter 3 lays out my overarching research questions and the methodology I used to tap into the practices, perceptions and attitudes of my informants. Chapters 4, 5 and 6 present my core findings and are divided into the three Critical Realist domains of reality: The Empirical domain, where I will focus on the act of diagnosis and the sense of ambivalence surrounding it in the health system; the Actual domain, where I will explore the often ambiguous process of attributing behaviours to the constructs of autism and/or deafness; and finally, the Real domain, where I will present a critical view on the system of assessing mental disorders. Here, I will draw on the work of Georges Canguilhem (1943/1991) to argue that the Western diagnostic system, based on statistical norms, underlies a great deal of diagnostic uncertainty. Finally, in Chapter 7, I will discuss how these three domains interlink and fit into the wider context of Western psychiatry and health systems in the UK.
1.
Key concepts and theoretical frameworkObjectivity and (un)certainty
The development of scientific medicine, then, has both uncovered and created uncertainties and risks that were not previously known or experienced
(Fox, 1980:19)
A core concept underlying the challenges of psychiatric diagnosis is clinical uncertainty. Rene Fox (1957; 1980; 2000) has traced a growing preoccupation with this notion in public, academic and medical spheres, over the second half of the 20th century. But before
exploring what we mean by clinical uncertainty, and its place within diagnostic practice, it is necessary to establish why this preoccupation exists. A logical starting point is to look first at the concept of certainty in the historical context of Western science and medicine: how it gained its significance and later defined our current fixation with that which opposes or disrupts it. Certainty is about having confidence in knowledge and rejecting the possibility of error, something that became crucial in post-‐enlightenment science (Lock & Nguyen, 2011). At this point, the method by which such certainty was achieved was paramount, giving rise to the fundamental principle of modern scientific thought:
objectivity. The principle of objectivity became an ideal within scientific (and later
medical) worlds, which guided knowledge seeking and buttressed truth claims (Porter, 1995). In the 19th century, objectivity was associated with progress, and, according to
Daston and Galison, was a response to the “crisis of anxiety and denial” triggered by the subjectivity of science in the previous era (2007: 66).
This “anxiety and denial” marks the beginnings of a systemic intolerance of uncertainty in science and medicine. Although Daston and Galison identify a further progression into an era of more interpretive scientific judgment (ibid: 309), the ebb and flow of certainty and uncertainty in the history of science is by no means linear. Instead of overcoming the uncertainty that became so undesirable in the mid 19th century, the development of
science and technology has in fact intensified our experience of it. This echoes the words (quoted above) of Fox (1980), and is striking in the medical world, which has only relatively recently adopted the standardised, objective principles of experimental science.
Lambert (2006) identifies the ‘movement’ of evidence-‐based medicine, which, from the 1960’s onwards, sought to bolster declining levels of trust in medical knowledge and practice, by adopting a “more ‘science-‐based approach’” within medicine (ibid: 2633). This held health systems accountable for keeping clinical judgements objective and free of risk. Arguably, this has simply politicised uncertainty and made it the business of public organisations, rather than just the scientific community (Power, 2004).
This second wave of struggle against uncertainty was particularly strong in the field of psychiatry in the aftermath of the antipsychiatry movement and on-‐going contention about psychiatric diagnosis in the late 20th century (Pilgrim, 2007). This shift towards
objectivity in psychiatry bore out most obviously in the third edition of the Diagnostic Statistical Manual of Mental Disorders (DSM) in the United States. This provided a classificatory system that moved away from the implicit knowledge base of psychiatrists, to a more prescriptive classificatory system, aiming at objectivity and universal applicability. Since its publication in 1980, it has enabled the field of psychiatry to maintain huge authority over how mental disorders are understood and treated throughout the Western world2, whilst at the same time being a huge source of
controversy and contention (Strand, 2011). One fundamental difficulty in creating a ‘universal’ diagnostic manual has been that it is impossible to discount the huge diversity of cultures that affect its applicability. In the words of Good (1996: 128) “there can be no 'God's eye point of view,' free of culture, from which to assess a person suffering a mental illness”. Failure to acknowledge this can result in uncertainties such as the Category Fallacy (Kleinman, 1988), where DSM categories may obscure cultural differences in the way that distress is experienced. Ultimately, these examples indicate that our appeals to objectivity and standardisation propagate, rather than eliminate uncertainty. It seems Pickersgill’s final analysis of psychiatry in the UK since the 1950’s, rings true throughout the biomedical world: that ultimately, “uncertainty endures.” (Pickersgill, 2014: 166).
2 The ICD-‐10 system of the WHO maintains its own parallel system for classifying mental disorders, in order
to ensure all member countries must approve it. However, the organizations collaborate closely and the two have diverged significantly. The DSM IV (currently in use but soon to be replaced) and ICD-‐10 criteria for autism are identical. The latter are adopted in this research context in the UK.
Normality, pathology and “alternative socialities”
As well as propagating uncertainty, the rise of objectivity quantified the world of science, medicine and public health (Porter, 1995). A Foucauldian reading of this “avalanche of numbers” is that it gave the concept of the ‘norm’ huge weight in society and was used as an instrument of social control (Hacking, 1982: 279). The former point (on the concept of norms) will lead to a central theme in this thesis, whilst the latter (on social control) takes us outside of the scope of this theoretical framework. We will, then, take a step back and use the less well-‐trodden, but highly influential, theoretical path of Foucault’s predecessor and supervisor, Georges Canguilhem. In the Normal and the Pathological (1991, first published in France, 1943), Canguilem brought the history of science away from the “heights” of physic and mathematics, to the:
“Middle regions, where knowledge is much less deductive, much more dependent on external processes… and tied much longer to the marvels of the imagination”
(Foucault, in Canguilhem, 1943/1991:13).
In this domain of medicine and the life sciences, such inductive and imaginative practices underlie Canguilhem’s core argument: that what is deemed normal or pathological in a clinical setting is not an objective fact. It is situated in context, challenging the appropriateness of statistics to determine the norm for a living being’s functional activity
outside the laboratory (ibid: 145). He proposes an alternative way of conceptualising the
normal, which foregrounds the individual’s ability to adapt to their environment and is by nature “imprecise” (ibid: 182). We will return to this in more detail in chapter 6, but it is important to establish now that (just as certainty defines uncertainty) it is important to address the ‘normal’ before exploring the abnormal and the pathological.
Davis (1995) takes a historically situated concept of ‘normalcy’ as a starting point for his critical examination of how we have come to see deafness and disability within the Western world. This remains central to his aims to “reverse the hegemony of the normal and institute new ways of thinking about the abnormal” (ibid: 49): to bring disability and deafness into progressive cultural studies such as feminism and multiculturalism. This de-‐medicalisation of deafness in particular, has been hugely influential in establishing it
as a minority culture (Deaf culture with a capital ‘D’). As an activist and academic within the Deaf community, Paddy Ladd (2003: 213) has located the marginalisation of deaf people in a theoretical framework, which also draws on Gramsci’s concept of hegemony. He uses this to illuminate the invisible (but powerful) assumption that the norm amongst the majority ‘oral’ culture is right and healthy. The minority culture of Deaf signers fall outside of this, paving the way for being oppressed or dragged closer to the norm by the ‘specialists’ of the oral culture (ibid: 215). It is essential to be sensitive to the Deaf community’s “healthy mistrust” of mainstream (mental) health professionals that ensued from a history of abuse in healthcare and psychiatric settings (Williams & Abeles, 2004; Padden, 2005).
The establishment of the cultural model of Deafness has been a unique social and academic movement, although it does “overlap nicely” with the history of disability studies (Padden, 2005: 508). This is perhaps an oversimplification of what has been a nebulous issue between these disciplines, and within this thesis I will honour the strong view of some of my informants that d/Deafness is not a disability. It will certainty not be conflated with the mental disability of autism. At a conceptual level, however, it is useful to experiment with applying similar principles to both: can a mental disability also be recast as difference (or even culture), rather than pathology? Ginsburg and Rapp (2013: 61) make this link between the constructions of deafness and autism, calling them both “alternative socialities” in their anthropological review of disability studies. Similarly, Malloy and Vasil (2002) suggest that Asperger’s Syndrome3 is a neurological difference
that has been socially constructed as pathology. Although they speak of social constructivism, the authors are not strong constructivists: they do not question the existence (ontology) of the condition. One thing we have learnt from the turbulent debates around the Social Model of disability (Oliver, 1996) is that physical and mental differences are real, enduring and ‘embodied’ (Hughes & Paterson, 1997; Mulvany, 2000). In the case of autism, it is important to acknowledge that, yes, the behaviour and neurology associated with it need not be considered pathological, but there is no uncertainty that these differences exist.
3 This is a hotly debated subcategory of autism, which has been removed from the DSM V since Molloy and
Vasil’s (2002) publication.
Fallible theories of a complex reality
Uncertainty, then, lies not in reality itself but in our theories about reality. This is a central tenet of Critical Realism: a theoretical framework that has provided a ‘third way’ between positivism and relativism in mental health theorising and offered an integrative agenda for disability studies (Pilgrim & Rogers, 1999; Bhaskar & Danermark, 2006). This is made possible by its capacity to embrace the complexity of reality. It posits a shared ontology and epistemology for the natural and social sciences by spanning multiple domains of reality (Bergin, Wells, & Owen, 2008: 170). This will be expounded throughout the coming chapters, but our first concern is how it can help us to understand the uncertainty involved in clinical mental health practice.
Bentall and Pilgrim’s in-‐depth case study of the development of the depression as a diagnostic category (the “medicalization of misery”) takes a critical realist stance. They argue that there is a reality beyond our knowledge (such as the experience of misery) but that our theories about reality (such as the category of depression) are constructed and therefore fallible. This is fertile ground for a discussion of how neurological disorders such as autism are diagnosed, because it encompasses both the biomedical model of a disorder and the many ‘confounding’ social and cultural factors that help to shape it. As there are no biological markers for autism, scientific theories and clinical judgements about it are never purely objective, despite the aforementioned trend towards making all clinical practice evidence-‐based (Lambert, 2006). This leads to a “profound epistemological uncertainty” surrounding this type of psychiatric diagnosis (Fox, 2000, cited in Rafalovich, 2005: 306).
Towards an ‘anthropology of uncertainty’
This ‘epistemological uncertainty’ that Fox refers to, and which Rafalovich (2005) identifies in his study of clinical uncertainty in ADHD diagnosis, is concerned with the
actual ‘unknowability’ of clinical phenomena. This is apparent in the academic and
scientific discourse about autism (Nadesan, 2013; Singh, 2002). However, from an anthropological perspective, it is important to ground this in the practices and experiences of clinicians: to examine the “enactment of uncertainty” as well as the
articulation of it (Leibing, 2009: 184). This ethnographic work, combined with her analysis of scientific discourse, allows Leibling to build on what she describes as an ‘anthropology of uncertainty’.
Paul Atkinson urges researchers to pay close attention to the “talk and work” of medical professionals, in order to pick apart the many facets of uncertainty in clinical practice (1995). This approach is also vital for anchoring findings to their context: not necessarily the broader historical context discussed above, but the particularities of the immediate clinical context. Finally, an anthropology of clinical uncertainty will need to attend to the personal experiences of practitioners: their perceived uncertainty. This is pertinent to contexts in which diagnoses are particularly challenging for the clinician, such as in those made in trans-‐cultural psychiatric work. Kirmayer (2013) draws on the work of Rene Fox to explore the destabilising effect of uncertainty on practitioners, something that must be managed on a very personal level.
A supporting framework
Given the many levels on which uncertainty can operate, the critical realist framework provides a useful structure in which to present and explicate the coming findings. I will take advantage of its multidimensional view of reality and explore the clinical uncertainty that emerged from my data within the three domains defined by Baskar et al. (Archer, 1998; Bhaskar & Danermark, 2006): the domain of the Empirical, the domain of the Actual and the domain of the Real. The Empirical is the observable world, the world of that we (directly or indirectly) experience (Bergin et al., 2008). This is the platform for my informants’ attitudes and experiences of ‘diagnosis’: the act of naming disorders, and how this is perceived within a specific healthcare system. The Actual is the realm of events and actions, whether or not they are perceived by people. This is a springboard from which to understand the ‘actual’ uncertainty surrounding the categorisation of
observable behaviours 4. The Real is the deepest level of reality and is where invisible
social and cultural structures exist, as well as human potential that has not yet been activated (Sayer, 2000). It is where actual and observed mechanisms ‘emerge’ from (Bhaskar, 1989). This will encompass the more fundamental mechanisms underlying clinical judgement: not just what a disorder ‘is’, but whether it can or should be considered a disorder at all.
The concept of ‘emergence’ helps us to understand that these realities do not exist independently. The mechanisms in the deep level of the real influence those in higher levels, meaning that underlying social or cultural structures can play an active role in generating observable events. Gorski (2013) argues that this is an important idea for social scientists to grasp because it forces us to look at change, caused not just by human action, but also through structures. Underlying notions about health and illness, embedded within a biomedical structure, play just as big a role in generating diagnoses as the practitioners involved in an assessment. This facilitates a more dynamic understanding of the factors involved in generating diagnoses and diagnostic uncertainty
4 I have described this is a ‘springboard’, because any discussion of the Actual, will inevitably bleed into
other domains: any event within this data set will of course have been at some point perceived, and is bound to be affected by the social and cultural structures of the Real.
than the conventional distinction between the ‘micro and macro,’ processes (ibid.: 659), which was employed by Rafalovich for this purpose (Rafalovich, 2005)
It should be made clear that this framework is a supporting theory for understanding a complex, multi-‐disciplinary context (Bhaskar & Danermark, 2006). This means that my methods and analysis will not be restricted to this single theoretical lens: throughout the coming chapters, there will be times where it will be necessary to draw on additional ideas relating to the range of theory I have introduced in this conceptual framework.
Figure 1: A critical realist framework for investigating clinical uncertainty in psychiatric diagnosis
2.
ContextBritish and bilingual: An introduction to the Deaf Service
The Deaf Children, Young People and Family Service for child and adolescent mental health is located a little way away from the main hospital, where the adult mental health services are based. Despite the telltale signs of the pale blue NHS furnishings and official lanyards swinging around the necks of its staff, there is something distinctly un-‐clinical about this setting. Unlike the neurology or audiology units I would go on to visit later on in my research, there are no white coats or long winding hospital corridors to be seen here.
Work begins early at the service, as mornings are an important time for the team to convene before starting clinical work, the vast majority of which takes place off-‐site through home and school visits. It is often simply not feasible for families to get to the Deaf Service clinic. Unlike mainstream mental health services, which can be reached through local health centres or hospitals, the Deaf Service is the only one of its kind across several counties. By 8.30 in the morning, the small car park is packed, and for a lot of clinicians, much of the day will be spent on the road, trying to reduce the barriers deaf children and families face when trying to access appropriate mental health services.
Inside the service, it is also getting busy. The team of psychologists, psychiatrists mental health nurses and specialist deaf outreach workers are preparing for a team meeting although (as usual) the full team of around 10 has dwindled to about half due to commitments to generic services or more pressing clinical issues. A steady stream of strong English tea is being brewed and brought through into the meeting room, as the clinicians chat away and complain about this morning’s traffic. This almost quintessentially white, British scene is not what would immediately come to mind if you were to envisage an ‘intercultural healthcare setting’. Unless you knew that, with the support of two interpreters, two entirely different languages were in constant parallel use: one spoken and one entirely visual. The whole team is bilingual to varying degrees (depending on lip reading and hearing levels of Deaf staff and the signing skills of hearing staff) and their casual communication slips between English and British Sign Language (BSL). The
seamlessness of communication is both beautiful and highly functional; it is not surprising that the interpreters are held in such high esteem here.
The meeting will begin with a summary of all new referrals. The service never refuses a referral, but is adamant that they must come from a professional, and not family or community members. This is to control their finely balanced caseload as a ‘highly specialised service’: enough to justify NHS funding but not enough to impede on response times. If they receive a referral for an autism assessment today, the child will be seen within a few weeks. If this were a generic child and adolescent mental health team, it would be 6 months to a year. Interestingly, however, few referrals come from generic teams, who often work in parallel to the Deaf Service, rather than referring a deaf child on. Even if they are aware of the service, often they feel that (when a child has only mild hearing loss or a cochlear implant) the child is only “a little bit deaf” so need not have a specialised assessment. They may not even work with an interpreter, if the child signs but is able to communicate orally.
These issues are not easy to solve, given the limited capacity of the Deaf Service to take over all cases. Some advocate developing deaf-‐friendly assessment tools and improving interpreter quality within generic services, whilst others feel strongly that the only way forward is to train more deaf clinicians and increase the reach of the Deaf Service to all deaf and hearing-‐impaired children. The service constantly tosses these priorities to and fro during meetings such as this one, never quite solving them but using the tension to fuel progress in reaching more immediate goals.
A cultural perspective on clinical practice
The Deaf Service’s bilingual, bicultural model is of course highly specific to the purpose of this team: to provide a multi-‐disciplinary mental health service to deaf children and their families. The Deaf service adopts a cultural-‐linguistic model of deafness (Wright et al., 2012), despite being embedded in the NHS, which is of course predominantly hearing and oral. From an anthropological perspective, a word should be said about how I have understood this cultural milieu through the lens of my research. Within this research project, I was exposed to a very limited picture of the Deaf community, given that they
were all research or clinical employees of the NHS, and that my main focus was on the practices of hearing professionals. My understanding of Deaf culture came partly from Deaf colleagues but primarily from the reported experiences of hearing professionals interacting with the deaf children and the Deaf community. This means that my cultural perspective was focused more on the ‘culture’ of child and adolescent mental health services, within a predominantly hearing health system. As such, my understanding of Deaf culture was mostly constructed through the lens of an organisation with its own cultural norms, perspectives and understandings.
It is important, then, to locate the service I was working in in its wider organisational culture. Although the Deaf Service is highly culturally sensitive to the Deaf community, it exists in a system, which is notoriously insensitive to this linguistic and cultural group (Alexander, Ladd, & Powell, 2012). During the fieldwork period there was a lot of public and professional debate about this after news story came out revealing serious problems with the way deaf people had been treated in York Hospital, under the same NHS trust I was working in (York Press, 2014). A watchdog had pointed to the risks of misdiagnosis and mistreatment due to a lack of interpreters and sensitivity in generic services: something I feel it is vital to keep in mind, despite the mostly positive intercultural experiences reported by my informants.
A (recent) historical perspective on CAMHS and autism assessment
Having established that the Deaf Service should be seen as part of a broader system of healthcare provision, we must now turn our attention to the context of child and adolescent mental health services in the UK. More specifically, the way autism has been, and is, assessed and diagnosed within this system. More than one of the more senior clinicians I interviewed remarked on how this had changed since they had started practicing. Twenty years ago, there were only 2 or 3 children in the NHS Trust’s catchment area who had been diagnosed with autism by a consultant psychiatrist. Today there are well over a hundred, with each diagnosis involving a number of agencies and range of possible professionals. Broadly speaking, this is the story of autism prevalence
throughout the Western world5, and there are a plethora of different reasons for this
(Grinker, 2008). However, I would like to pick out two particular developments that contributed to this in the UK, and shaped the system for assessing autism that I studied in this piece of research in 2014.
The first was the NHS strategy called Together We Stand, laid out in 1995 to improve mental health services for children young people and their families (Williams, Richardson and Bates, 1995). A key principle of the strategy was to provide multi-‐disciplinary approaches, in order to broaden the scope of expertise available to each service user and to move away from the model where the focal point of all referrals was a single psychiatrist. Another was improved accountability, forcing child and adolescent mental health teams (hereafter, CAMHS) to take responsibility for the outcomes of their work (Wright & Richardson, 2011). Both of these improved the capacity of CAMHS teams to accept more referrals and mobilised the use of teamwork to manage them. Trusting a single medical professional to make diagnoses come to be seen as irresponsible, particularly in the case of autism, which is so multifaceted and often so contentious. In a climate of high responsibility and low levels of trust in (mental) healthcare professionals (Hardey, 1999; Warner, 2006), the multi-‐disciplinary model is now indispensible for CAMHS professionals involved in assessing children for autism. This was one element of the organisational structure that the professionals I interviewed passionately believed in.
The introduction of the multi-‐disciplinary model explains the growth in the amount of professionals involved in each case, and the increased capacity of CAMHS as a result of the whole strategy meant that the system could handle the growth in autism diagnoses. However, it does not explain the actual increase in autism diagnoses made during the same period that the together we stand strategy was introduced. One might expect that the introduction of multiple perspectives would mean that diagnoses would be more dispersed producing more differential diagnoses. In fact, the opposite happened, as just prior the rolling out of this strategy, the ICD-‐10 diagnostic guidelines had been adopted by all CAMH services in the area. What psychiatrists and paediatricians had seen as a
5 ASD prevalence studies have shown an increase since the 1960s when it was approximately 4/10,000. By
the early 2000s it had risen to 46/10 000 in the UK (Wing & Potter, 2002). However we must be cautious in extrapolating this to a deaf population for which there are currently no representative figures.
range of non-‐specific learning disabilities could now be subsumed under the ICD-‐10’s diagnostic criteria for autism (World Health Organization, 1992). As well as increasing the recognition of Autistic Spectrum Disorders (ASDs), the adoption of the ICD-‐10
standardised the diagnostic process. Whilst diagnostic responsibility had been taken
away from individual psychiatrists, it was not simply diffused amongst team members. Any decision would relate to a single overarching set of criteria, and follow guidelines for assessing these criteria.
A research perspective: Validating diagnoses for deaf children
What then, does this mean for the diagnosis of autism in deaf children within this system? This is a question I will explore within the coming chapters, but is one that is already being asked from within the services and applied research community surrounding them. Despite its goal of universal applicability, the ICD-‐10, and diagnostic tools based in it, is in many ways inappropriate to use with deaf children. Being written in oral English, there are serious cultural and linguistic issues associated with the tools, and there are currently no valid translations into BSL. This will be discussed in further detail with the support of my empirical findings later, but it something that CAMHS professionals (both in the Deaf Service and generic services) have been struggling with for years. Finally, last year (in 2013), research council funding was granted to a 4-‐year project to address these issues and produce adapted, scientifically validated tools for assessing deaf children for ASDs. A research team affiliated to the Deaf Service is currently carrying out this project.
The findings presented in this thesis will feed into this broader project, offering a qualitative perspective on the problems professionals face using the current diagnostic system. However essentially, this is an independent project. In an applied sense, it has very different aims to the research council project, which focuses on adapting the tools of the existing system. Instead, I consider this to be a complimentary piece of work, concerned with way professionals perceive and rise to the challenges that this system brings.
3.
Research Questions and MethodologyDevelopment of Research Questions
The research questions that guided the data collection were based around the central theme of clinical uncertainty, but were adapted in several ways throughout the course of the fieldwork. The only literature available on assessing deaf children for psychiatric disorders is focused on prevalence and clinical presentations, meaning that a first step was to move the unit of analysis away from the child (or the population of children) and towards the actors and systems surrounding this process. Initially, I aimed to identify relatively superficial social processes, such as the dynamics of the multi-‐disciplinary assessment team. However, as I gained more of an understanding of the field through exposure to the practices of the Deaf service, I was able to incorporate more applied issues into my more theoretical research questions. Ultimately, this meant that my research questions were more focused on the content of the issues I was exploring. The core research question became:
What do the practices, perceptions, and attitudes of professionals involved in autism assessments for deaf children tell us about the clinical uncertainty surrounding this diagnostic process?
Rather than being a distraction from the theoretical issues, this more practice-‐based question drew out deeper issues, which underpinned the clinical uncertainty that may or may not be expressed personally by informants. A series of sub questions stemmed from this central question, which approach it from several different angles:
-‐ Do the mental health professionals involved in this piece of research experience or
perceive clinical uncertainty in the assessment of autism in deaf children? If so, what are the main challenges that cause this?
