Intersecting Cultures in Deaf Mental Health: An Ethnographic Study of NHS Professionals Diagnosing Autism in D/deaf Children
- 505 Downloads
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 an ethnographic study of National Health Service child and adolescent mental health services in the United Kingdom, drawing on theoretical perspectives from transcultural psychiatry, which help to understand these services as a cultural system. Our objective was to analyse how mental health services interact with Deaf culture, as a source of cultural-linguistic identity. We ground the study in the practices and perceptions of 16 professionals, who have conducted autism assessments for deaf children aged 0–18. We adopt a framework of intersectionality to capture the multiple, mutually enforcing factors involved in this diagnostic process. We observed that professionals working in specialist Deaf services, or with experience working with the Deaf community, had intersectional understandings of assessments: the ways in which cultural, linguistic, sensory, and social factors work together to produce diagnoses. Working with a diagnostic system that focuses heavily on ‘norms’ based on populations from a hearing culture was a key source of frustration for professionals. We conclude that recognising the intersectionality of mental health and Deaf culture helps professionals provide sensitive diagnoses that acknowledge the multiplicity of D/deaf experiences.
KeywordsIntersectionality Deaf culture Autism Diagnosis Child and adolescent mental health
The authors thank all the staff at the Deaf Service, who provided a base for the fieldwork. We also thank all practitioners from other services who participated, and are grateful to the sign language interpreters who assisted the data collection where necessary. The authors would like to thank the MRC for their support of a closely related project to improve autism assessments for deaf children (Grant reference: MR/K015435/1) through the Biomedical Catalyst: Developmental Pathway Funding Scheme. Finally, we would like to thank the anonymous reviewers for their care and attention in commenting on the text.
Compliance with Ethical Standards
Conflict of interest
The third author, Barry Wright, is the clinical lead of the National Deaf Child and Adolescent Mental Health Service in England. Barry Wright is also leading a Medical Research Council Research Grant to improve autism assessments in deaf children (see acknowledgments section in manuscript for further details). The first author, Natassia Brenman declares she has no conflict of interest. The second author, Anja Hiddinga, declares she has no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee (University of Amsterdam and NHS Research and Development IRAS procedures), and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
- Atkinson, Paul 1995 Medical Talk and Medical Work: The Liturgy of the Clinic. London: Sage.Google Scholar
- Baca-Garcia, Enrique, Maria M. Perez-Rodriguez, Ignacio Basurte-Villamor, Antonio L. Fernandez Del Moral, Miguel A. Jimenez-Arriero, Jose L. Gonzalez De Rivera, Jeronimo Saiz-Ruiz, and Maria A Oquendo 2007 Diagnostic Stability of Psychiatric Disorders in Clinical Practice. The British Journal of Psychiatry 190(3): 210-216.CrossRefGoogle Scholar
- Bauman, H.-Dirksen L. 2008 Open your eyes: Deaf studies talking. University of Minnesota Press, Minneapolis.Google Scholar
- Brenman, Natassia F. 2014 Uncertain Realities: The Complexities of Diagnosing Autism in Deaf Children. Master’s dissertation, University of Amsterdam.Google Scholar
- Chovaz, Cathy J. 2013 Intersectionality: Mental Health Interpreters and Clinicians or Finding the “Sweet Spot” in Therapy. International Journal of Mental Health and Deafness 3(1).Google Scholar
- Cohen, C.B. 2004. Psychotherapy with deaf and hard of hearing individuals: Perceptions of the consumer. Journal of Social Work in Disability and Rehabilitation 2(2-3): 23-46.Google Scholar
- Crenshaw, Kimberle 1989 Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics. University of Chicago Legal Forum, 139–167.Google Scholar
- Crossley, Nick 2006 Contesting Psychiatry: Social Movements in Mental Health. Psychology Press, Abingdon.Google Scholar
- Davis, Lennard J 1995 Enforcing normalcy: Disability, deafness, and the body. Verso, London.Google Scholar
- European Union of the Deaf Alternative report on the UN CRPD. Retrieved July 10, 2015, from http://www.eud.eu/EDF_Alternative_Report_on_the_UN_CRPD-i-841.html
- Jenkins, Janis H, and Robert J Barrett 2004 Schizophrenia, Culture, and Subjectivity: The Edge of Experience. Cambridge University Press, Cambridge.Google Scholar
- Kleinman, Arthur 1988 Rethinking Psychiatry: From Cultural Category to Personal Experience. New York; London: Free Press.Google Scholar
- Ladd, Paddy 2003 Understanding Deaf Culture: In Search of Deafhood. Clevedon etc.: Multilingual Matters.Google Scholar
- Liptak Gregory S, Lauren B Benzoni, Daniel W Mruzek, Karen W Nolan, Melissa A Thingvoll, Christine M Wade and G Edgar Fryer 2008 Disparities in Diagnosis and Access to Health Services for Children with Autism: Data from the National Survey of Children’s Health. Journal of Developmental and Behavioral Pediatrics 29(3): 152-160.CrossRefGoogle Scholar
- Lock Margaret, Vinh-Kim Nguyen 2011 An Anthropology of Biomedicine. Wiley, New York.Google Scholar
- Lord, Catherine, Michael Rutter, Pamela C Dilavore, Susan Risi, Bernadette Rogé, Eric Fombonne, Jeanne Fremolle-Kruck, Evelyne Arti 2008 ADOS: Autism Diagnostic Observation Schedule. Western Psychological Services, Los Angeles.Google Scholar
- Messent, Philip. 2003 From Postmen to Makers of Meaning: A Model for Collaborative Work between Clinicians and Interpreters. Working with Interpreters in Mental Health, pp. 135–150.Google Scholar
- Moore, Kate, Barry Wright, Danielle Moore, Richard Ogden, and Katie Rogers 2013 Overcoming the Challenges of Translating Mental Health Instruments into Signed Languages. International Journal on Mental Health and Deafness 3(1): 20-29.Google Scholar
- Padden Carol, Tom Humphries 2005 Inside Deaf Culture. Harvard University Press, Cambridge, MA.Google Scholar
- Rogers, Katherine D., Alys Young, Karina Lovell, Malcolm Campbell, Paul R Scott, and Sarah Kendal 2013 The British Sign Language Versions of the Patient Health Questionnaire, the Generalized Anxiety Disorder 7-Item Scale, and the Work and Social Adjustment Scale. Journal of Deaf Studies and Deaf Education 18(1): 110-122.CrossRefGoogle Scholar
- Rutter Michael, Ann Le Couteur, Catherine Lord, and Raffaella Faggioli 2005 ADI-R: Autism Diagnostic Interview-Revised: Manual. OS, Organizzazioni speciali.Google Scholar
- Skuse, David, Richard Warrington, Dorothy Bishop, Uttom Chowdhury, Jennifer Lau, William Mandy, and Maurice Place 2004 The Developmental, Dimensional and Diagnostic Interview (3di): A Novel Computerized Assessment for Autism Spectrum Disorders. Journal of the American Academy of Child and Adolescent Psychiatry 43(5): 548-558.CrossRefGoogle Scholar
- Szymanski Christen, Patrick J Brice 2008 When Autism and Deafness Coexist in Children: What We Know Now. Odyssey 9(1): 10-15.Google Scholar
- Tribe, Rachel, and Jean Morrissey 2004 Good Practice Issues in Working with Interpreters in Mental Health. Intervention 2(2): 129-142.Google Scholar
- Tribe Rachel, Hitesh Raval 2003 Working with Interpreters in Mental Health. Routledge, London.Google Scholar
- World Federation of the Deaf Human Rights. Retrieved July 10, 2015, from http://wfdeaf.org/human-rights
- Wright, Barry, and Peter Oakes 2012 Does Socio-Emotional Developmental Delay Masquerade as Autism in some Deaf Children? International Journal on Mental Health and Deafness 2(1): 45-51.Google Scholar