Anthropological Research on Autism. Reflections from the Field

Keywords: Autism Spectrum Disorders (ASD), disability, fieldwork, ethnographic observation, communication, empathy, ethics, research responsibility

Abstract

For a long time, people on the autistic spectrum were doomed to social marginalisation. They often spent their entire lives kept in homes or were sent to closed institutions where they were treated like passive objects of custodial care. Their developmental potential and creative possibilities were generally questioned. Since the 1950s, this has slowly been changing. Individuals with autistic syndrome and their relatives have obtained access to a variety of forms of aid. A network of specialist institutions supporting them through early diagnosis, therapy, care and education have been expanding as well. One such facility, located in Łódź, became for two years my research field. Stepping over the threshold of this institution I was not a novice since I had already met autistic people in the context of my private life. Still, I had never met such an abundant and diversified group of individuals on this spectrum (in terms of symptom level and age). During the course of my research, a number of issues needed to be addressed such as issues related to research method, my behaviour towards people with autism, some organisational matters as well as professional and ethical dilemmas, all of which will be written about in this article.

Downloads

Download data is not yet available.

Author Biography

Aleksandra Rzepkowska, Department of Social Pedagogy, Faculty of Educational Sciences at the University of Łódź

PhD

References

Abberley P. 1987. The concept of oppression and the development of a social theory of disability. Disability, Handicap and Society 2 (1), 5–19.
Andreoli V. 2004. I miei matti. Ricordi e storie di un medico della mente. Milano.
Arditti J. A., Joest K. S., Lambert-Shute J., Walker L. 2010. The role of emotions in fieldwork: a self-study of family research in a corrections setting. The Qualitative Report 15 (6), 1387–1414.
Barnes C. 1997. A legacy of oppression: a history of disability in western culture. In L. Barton and M. Oliver (eds.), Disability studies: past, present and future. Leeds, 3–25.
Barnes C. and Mercer G. 2003. Disability. Cambridge.
Bielska B. 2016. Praktyki ukrywania. O pułapkach, pokusach i pożytkach z badań niejawnych. Przegląd Socjologii Jakościowej 12 (3), 70–87.
Boucher J. 2012. Research review: structural language in autistic spectrum disorder – characteristics and causes. Journal of Child Psychology and Psychiatry 53 (3), 219–233.
Bourne J. 2005. Researchers experience emotions too. In R. S. Barbour and G. Huby (eds.), Meddling with mythology. AIDS and the social construction of knowledge. London, New York, 89–102.
Buchowski M. 2012. Etnologia polska: historie i powinowactwa. Poznań.
Brown I. and Radford J. P. 2015. Growth and decline of institutions for people with developmental disabilities in Ontario: 1876–2009. Journal of Developmental Disabilities 21 (2), 7–27.
Buliński T. and Kairski M. (eds.) 2010. Teren w antropologii. Praktyka badawcza we współczesnej antropologii kulturowej. Poznań.
Byrne M. 2005. Conducting research as a visiting scientist in a women’s prison. Journal of Professional Nursing 21, 223–230.
Chojnicka I. and Płoski R. 2012. Polska wersja wywiadu do diagnozowania autyzmu ADI-R (Autism Diagnostic Interview – Revised). Psychiatria Polska 46 (2), 249–259.
Cymbrowski B. and Rancew-Sikora D. 2016. Dylematy etyczne i ryzyko w badaniach terenowych. Przegląd Socjologii Jakościowej 12 (3), 6–21.
Dykens E. M. and Lense M. 2011. Intellectual disabilities and autism spectrum disorders: a cautionary note. In G. Dawson and D. Geschwind (eds.), Autism Spectrum Disorders. New York, 261–269.
Eigsti I.-M., de Marchena A. B., Schuh J. M., Kelley E. 2011. Language acquisition in autism spectrum disorders: a developmental review. Research in Autism Spectrum Disorders 5 (2), 681–691.
Gałkowski T. 1997. Nowe podejścia do niepełnosprawności. Uporządkowania terminologiczne. Audiofonologia 10, 159–164.
Geisler N. L. 2007. Christian ethics: contemporary option and issues. Grand Rapids.
Goffman E. 1961. Asylums: essays on the social situations of mental patients and other inmates. Garden City, New York.
Goldberg Edelson M. 2006. Are the majority of children with autism mentally retarded? A systematic evaluation of the data. Focus on Autism and Other Developmental Disabilities 21 (2), 66–83.
Harris J. 1996. An ethnographic account of participant observation in a residential home for deaf people. Deaf Worlds 12 (1), 12–16.
Harris J. 1997. Surviving ethnography: coping with isolation, violence, and anger. The Qualitative Report 3 (1), 1–13.
Hart C. B. 1995. A primer in prison research. Journal of Contemporary Criminal Justice 11, 165–176.
Hendry J. 1999. The paradox of friendship in the field. Analysis of a long-term Anglo-Japanese relationship. In J. Okely and H. Callaway (eds.), Anthropology and autobiography. London, New York, 163–174.
Jagiełło E. A. and Modnicka N. 2011. Pułapki Sieci – o etycznym wymiarze badań antropologicznych w Internecie. Lud 95, 105–125.
Johnson N. 2009. The role of self and emotion within qualitative sensitive research: a reflective account. Enquire 2 (2), 191–214.
Kaczmarek Ł. 2016. Między survey research a obserwacją uczestniczącą: rozdarcia metodologiczno-tożsamościowe w polskiej etnologii/antropologii kulturowej w XXI wieku. Etnografia. Praktyki, Teorie, Doświadczenia 2, 123–136.
Kafar M. 2013. W świecie wygnańców, wdów i sierot. O pewnym wariancie antropologii zaangażowanej. Łódź.
Kika M. 2014. Intellectual disability in children with Autism Spectrum Disorders. International Journal of Humanities, Social Sciences and Education 1 (10), 1–4.
Kleinman S. 1991. Field worker’s feelings: what we feel, who we are, how we analyse. In W. B. Shaffir and R. A. Stebbins (eds.), Experiencing fieldwork: an inside view of qualitative research. London, 184–195.
Kleinman S. and Copp M. 1993. Emotions and fieldwork. Thousand Oaks, California.
Kliś M. 1994. Deficyt kontaktów wzrokowych w interakcjach społecznych dzieci autystycznych. In W. Dykcik (ed.), Autyzm: kontrowersje i wyzwania. Poznań, 69–79.
Kominek A. 2014. Mówi się trudno… O rodzajach kompetencji językowej (i komunikacyjnej) osób z autyzmem. Studia Filologiczne 27, 161–171.
Lalor J. G., Begley C. M., Devane D. 2006. Exploring painful experiences: impact of emotional narratives on members of a qualitative research team. Journal of Advanced Nursing 56 (6), 607–616.
Mahrer A. R. and Nadler W. P. 1986. Good moments in psychotherapy: a preliminary review, a list, and some promising research avenues. Consulting and Clinical Psychology 54 (1), 10–16.
Malinowski B. 1922. Argonauts of the Western Pacific. London.
Mead M. 1977. Letters from the field 1925–1975. New York.
Męcfal S. 2016. Badacz zjawisk trudno dostępnych w terenie – kwestie etyczne, praktyczne i metodologiczne. Przegląd Socjologii Jakościowej 12 (3), 88–100.
Minczakiewicz E. 1994. Z badań nad rozwojem mowy dzieci autystycznych. In W. Dykcik (ed.), Autyzm: kontrowersje i wyzwania. Poznań, 91–106.
Pużyński S., Rybakowski J., Wciórka J. 2010. Psychiatria. Tom 1. Podstawy psychiatrii. Wrocław.
Quina K., Garis A. V., Stevenson J., Garrido M., Brown J., Richman R., Renzi J., Fox J., Mitchell K. 2007. Through the bullet-proof glass: conducting research in prison settings. Journal of Trauma and Dissociation 8 (2), 123–139.
Ray-Subramanian C. E. and Ellis Weismer S. 2012. Receptive and expressive language as predictors of restricted and repetitive behaviours in young children with autism spectrum disorders. Journal of Autism and Developmental Disorders 42 (10), 2113–2120.
Sikora S. 2015. Przedwczesne pożegnanie. Etnografia. Praktyki, Teorie, Doświadczenia 1, 174–176.
Sośnicka J. and Dobrołowicz J. (eds.) 2011. Troska o Innego. Szkice humanistyczne. Kielce.
Vicker B. 2009. Social communication and language characteristics associated with high functioning, verbal children and adults with autism spectrum disorder. Bloomington.
Wax R. H. 1971. Doing fieldwork. Warnings and advice. Chicago.
Wierciński H. 2016. Etnograf w szpitalu. Uwagi na temat kłopotów z biomedycyną. Zeszyty Etnologii Wrocławskiej 2 (25), 71–92.
Wind G. 2004. Negotiated interactive observation. Doing fieldwork in hospital settings. Anthropology and Medicine 15 (2), 79–89.
Woodill G. 1992. Controlling the sexuality of developmentally disabled persons: historical perspectives. Journal of Developmental Disorders 1 (1), 1–14.
Wroniszewski M. 1993. Autystyczny świat. Światło i Cienie 1–2, 11–13.
Zakrzewska-Manterys E. 2015. A history of the exclusion of the mentally handicapped. Przegląd Socjologii Jakościowej 11 (3), 14–24.
Zakrzewska-Manterys E. 2017. Upośledzeni umysłowo jako „odmieńcy”. In A. Rzepkowska (ed.), Odmienność w kulturze. Toruń, 291–304.
Żerkowski M. 2015. Pożegnanie z terenem. Esej antropologiczny. Etnografia. Praktyki, Teorie, Doświadczenia 1, 156–173.
Żuraw H. 2016. Ewolucja podejścia do niepełnosprawności w kulturze Zachodu – perspektywa antropologii. Pogranicze. Studia Społeczne 28, 27–47.
Internet sites:
https://psychology.wikia.org/wiki/Intraception, access: 10.11.2019
https://www.stephenwiltshire.co.uk/, access: 11.07.2019.
Published
2019-12-15
How to Cite
Rzepkowska, A. (2019). Anthropological Research on Autism. Reflections from the Field. Ethnologia Polona, 40, 109-123. Retrieved from http://journals.iaepan.pl/ethp/article/view/27