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  Cult Med Psychiatry DOI 10.1007/s11013-017-9526-y CULTURAL CASE STUDY Intersecting Cultures in Deaf Mental Health: An Ethnographic Study of NHS Professionals Diagnosing Autism in D/deaf Children Natassia F. Brenman1 ã Anja Hiddinga2 ã Barry Wright3 Springer Science+Business Media New York 2017 Abstract Autism assessments for children who are deaf are particularly complex for a number of reasons, including overlapping cultural and clinical factors. We capture this in
  CULTURAL CASE STUDY Intersecting Cultures in Deaf Mental Health:An Ethnographic Study of NHS ProfessionalsDiagnosing Autism in D/deaf Children Natassia F. Brenman 1 ã Anja Hiddinga 2 ã Barry Wright 3   Springer Science+Business Media New York 2017 Abstract  Autism assessments for children who are deaf are particularly complexfor a number of reasons, including overlapping cultural and clinical factors. Wecapture this in an ethnographic study of National Health Service child and ado-lescent mental health services in the United Kingdom, drawing on theoreticalperspectives from transcultural psychiatry, which help to understand these servicesas a cultural system. Our objective was to analyse how mental health servicesinteract with Deaf culture, as a source of cultural-linguistic identity. We ground thestudy in the practices and perceptions of 16 professionals, who have conductedautism assessments for deaf children aged 0–18. We adopt a framework of inter-sectionality to capture the multiple, mutually enforcing factors involved in thisdiagnostic process. We observed that professionals working in specialist Deaf services, or with experience working with the Deaf community, had intersectionalunderstandings of assessments: the ways in which cultural, linguistic, sensory, andsocial factors work together to produce diagnoses. Working with a diagnosticsystem that focuses heavily on ‘norms’ based on populations from a hearing culturewas a key source of frustration for professionals. We conclude that recognising the &  Natassia F. Anja HiddingaH.J.Hiddinga@uva.nlBarry 1 Department of Health Services Research and Policy, London School of Hygiene and TropicalMedicine, 15-17 Tavistock Place, London WC1H 9SH, UK  2 Department of Anthropology, University of Amsterdam, Nieuwe Achtergracht 166,1018 WV Amsterdam, The Netherlands 3 Hull York Medical School and Leeds and York Partnership NHS Foundation Trust, Lime TreesChild, Adolescent and Family Unit, 31 Shipton Road, York YO30 5RE, UK   1 3 Cult Med PsychiatryDOI 10.1007/s11013-017-9526-y  intersectionality of mental health and Deaf culture helps professionals providesensitive diagnoses that acknowledge the multiplicity of D/deaf experiences. Keywords  Intersectionality    Deaf culture    Autism    Diagnosis   Child and adolescent mental health Introduction Clinicians and health professionals face an assembly of challenges in autismassessments, particularly when there are intersecting issues to consider such as achild’s distinct cultural and linguistic experience. The autism assessment istherefore considerably more complex when the child is deaf. For children who usesign language, social, communicative, and cultural experiences will be differentfrom their hearing peers. These experiences are relevant for a deaf person in anyclinical encounter but are perhaps especially important in relation to the construct of autism, which is intimately linked to language and social communication. Structuralfactors also play a key role in the assessment process, as an early diagnosis of autism may be helpful to enable access to education and other services (Mansell andMorris 2004; Liptak et al. 2008). These complicating factors are compounded by communication difficulties experienced between deaf people and hearing profes-sionals,  and   by symptoms of autism that impair language development (du Feu andFergusson 2003). Children with autism are also more likely to have a degree of deafness than their typically developing peers, with nearly 8% of those with autismbeing reported as having mild to moderate deafness (Rosenhall et al. 1999). Thesestructural, linguistic, and developmental issues all contribute to the disproportionatenumbers of late or mis-diagnoses in deaf children (Roper et al. 2003). This paperexplores this complex diagnostic process, taking seriously both clinical under-standings of deafness and mental health, and the Deaf community’s experiences of inhabiting a distinct cultural identity. We look at how these elements intersect in aparticular mental health context in the United Kingdom.Despite the small, and growing, body of literature on deafness and autism, verylittle is really known about the overlap and interactions between these twoconditions (Szymanski and Brice 2008; Szymanski et al. 2012). Research on both conditions is rooted in clinical data about the socio-cognitive abilities of deaf andautistic children. One well-recognised feature of autism is an inability to makeaccurate guesses about the thoughts and beliefs of another person (Baron-Cohenet al. 1985). Cognitive psychologists have termed this a child’s ‘theory of mind’: asocial cognitive ability, which guides much of our social communication andunderstanding of other people’s ‘inner worlds’. Because children with autismdevelop this social cognitive ability differently, they communicate differently totheir typically developing peers, missing out or mistaking much of this talk aboutothers’ thoughts, feelings and beliefs. Some deaf children experience delays intheory of mind development, particularly after a delayed diagnosis of deafness(Wright and Oakes 2012). This is bound up with early language development: deaf children are more likely to experience a degree of linguistic deprivation, as a Cult Med Psychiatry  1 3  majority will be born into a non-signing family. This causes delays in theory of mind for  some  deaf children, who do not have access to a rich linguisticenvironment (oral or signed). These theory of mind delays tend to disappear byadolescence, unlike a child with autism, who will have on-going difficulties for life(Peterson and Siegal 1999). Despite this difference, some of the behaviours seen arevery similar between deaf children and children with autism, meaning that socioemotional developmental delay can ‘‘masquerade’’ as autism (Wright and Oakes2012).The above described research has provided valuable clinical insights into howand why these diagnoses are so complex, but it does not offer a cultural perspectiveon the process of assessing deaf children in a mental health context. We take adifferent approach to the existing literature on this assessment process, focusing noton the population of deaf children as our analytical focus, but on the culturalsystems that surround them. More specifically, we focus on the multidisciplinaryprofessionals who come into contact with these children and their families, and whodeal with these issues in their clinical practice. We carried out ethnographic researchin England’s National Deaf Child and Adolescent Mental Health Service (NationalDeaf CAMHS, hereafter referred to as the Deaf Service) and the equivalent genericservices operating parallel to this. All of this work took place within the NationalHealth Service (NHS). The Emergence of a Cultural Model of Deafness In the last few decades, the idea that deafness should be perceived from a culturalperspective has gained recognition, and support for deaf people’s struggle for socialrights has made its appearance on the agendae of political parties (see for example,the websites of the European Union of the Deaf, and the World Federation of theDeaf). Deaf culture is difficult to define, but is a vital part of what it means to be partof the ‘Deaf community’: a group defined by Deaf activist-scholars as ‘‘those deaf and hard of hearing individuals who share a common language, commonexperiences and values, and a common way of interacting with each other, andwith hearing people’’ (Baker and Padden 1978, cited by Ladd 2003, p. 41). The useof a capital ‘D’ for Deaf denotes a cultural linguistic model of being deaf, ratherthan a medical one (Napier 2002). The Deaf community is international, speaksmany sign languages, and intersects with (sub)cultures across the world. Theemergence of the cultural model of Deafness has been a unique social and academicmovement. The model challenges the medical approach to understanding deafness,favouring instead one defined by language and community (Padden and Humphries2005; Ladd 2003), which exists within a larger discourse about social and medical models of disability (Snodden and Underwood 2014)’’.In the field of Deaf studies scholars explore deaf people’s social life from varioussocial scientific perspectives. A cluster of features have been brought forward todefine cultural Deafness, such as its language, social norms, historical roots, andinternational links across communities (Ladd 2003; Bauman 2008). The extent to which deaf people draw on such shared characteristics for their cultural identity,falls along a broad spectrum. As this ethnographic work and other researchers have Cult Med Psychiatry  1 3  found, it is therefore sometimes hard to categorise someone as Deaf, ‘with a capitalD’ (Friedner 2010), with deaf identities taking different trajectories (Bat-Chava2000). This is particularly true for deaf children, as the majority are born to hearingparents. Developing a Deaf identity takes place over a long period of time. Duringthe early stage of a deaf person’s life, other cultural identities (likely to be definedby spoken languages, geography or nationality) may well also play a key role in thisdevelopmental process. Ahmad et al. (2002) have explored young people’snegotiation of ‘‘ being deaf and being other things ’’ in depth, finding little supportfor notions of singular or primary identities amongst the young South Asian menand women they spoke to in the United Kingdom. Although our findings do notdelve further into such experiences of cultures-within-cultures, such research hasinformed our conceptual framing of the issue of cultural identity. In line with thisthinking, we have found it useful to adopt Deaf activist and scholar, Paddy Ladd’snotion of ‘‘Deafhood’’ as an identity that deaf children and adults may discover to agreater or lesser degree, rather than a single category that they do or do not fall into(Ladd 2003). In this sense, identity becomes an evolving, developmental processshaped by the huge variability in human experiences. The Deaf Community and Mainstream Mental Healthcare In line with the notion of a  D eaf cultural identity implied in such a perspective,bilingual, bicultural models of deafness have been discussed in fields such aseducation and health care. In the United Kingdom for example, specialised servicesfor deaf patients like the Deaf Service have, since 2004 when it was first pilotedwithin the NHS, adopted a cultural-linguistic model of deafness (Ladd 2003; Wrightet al. 2012). The establishment of this service has been an important and progressivemove within the NHS, as the relationship between the medical world and the Deaf community has historically been a difficult and contentious one (Padden andHumphries 2005; Alexander et al. 2012). Attending to historical accounts of  mainstream health systems failing to recognise Deaf culture and language, respondsto calls within medical anthropology to consider the culture of medicine itself, aswell as the culture of the ‘other’ in clinical contexts (Kirmayer 2005; Fox 2005; Lock and Nguyen 2011). (Deaf) Cultural Identity and Diagnostic Systems Awareness of the importance of a person’s cultural background is also part andparcel of professional practice (Kleinman 1988; Jenkins et al. 2004; Carpenter-Song et al. 2007; Canino and Alegrı´a 2008). In any given diagnostic setting, deaf patientswill almost always encounter hearing professionals, meaning the latter have toassess someone with a different language and cultural background. The growingnumber of studies in transcultural psychiatry demonstrates how much thesesituations challenge western psychiatry’s existing assumptions and practices (Lopezand Guarnaccia 2000; Kirmayer 2005). These contributions usually analyse situations where cultural difference is connected with the ethnicity of peopleencountering the biomedical system. However, cultural differences are also Cult Med Psychiatry  1 3
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