‘Closer to my world’: Children with autism spectrum disorder tell their stories through photovoice

ABSTRACT

One of the challenges in doing research with individuals with autism spectrum disorder (ASD) is the difficulty in communication. This study employed a modified form of photovoice with a group of young people with ASD in Hanoi, Vietnam, to provide a means of meaningful participation in research about their lives, experiences, and needs. We describe the process of conducting photovoice with nine children with ASD from June 2011 to May 2012, many of whom had limited verbal communication skills. More than 2100 photos were taken by children. Undertaking photovoice with children with ASD required some modification of the method. In particular we consider the difficulties in analysing and interpreting the photographs produced by children with ASD. Due to the ambiguities of the visual images produced we found content analysis of photographs alone was inadequate. There was a discrepancy between our initial interpretations of the photographs and our understandings derived from information from interviews with children, parents, carers, and our own observations. Our study points to the need to understand context through multiple methods and the potential of photovoice as a means to mediate communication and participation in research for groups with communication difficulties.

KEYWORDS:

• Visual methods
• photovoice
• autism spectrum disorder
• children
• Vietnam

Acknowledgements

We also thank Paul Zeter for his guidance on photovoice, colleagues at the Center for Creative Initiatives in Health and Population (CCIHP), and Hanoi Club of parents of children with ASD for their support during fieldwork, Maxine Whittaker and Sylvia Rodger for their advice and inputs. Most of all, we thank the children with ASD in Hanoi and their parents for their invaluable contribution in this project. The observations and conclusions herein are those of the authors and do not represent CCIHP, the University of Queensland or the Organization for Autism Research.

Disclosure statement

No potential conflict of interest was reported by the authors.

ORCID

Andrea Whittaker http://orcid.org/0000-0002-2616-9651

Notes

1. Originally the criteria for inclusion of children with ASD in this study were those who received official diagnosis of ASD from paediatricians or psychologists. However, because the diagnosis of ASD only began in the early 2000s in Vietnam, many teenagers have never received a formal diagnosis of ASD by paediatricians. In our study, three teenagers had not received a formal diagnosis, but have been considered autistic by international experts who have come to Vietnam and met them, as well as by and their parents.

2. What do you See here? What is really Happening? How does this relate to Our lives? Why does this problem or strength exist? What can we Do about it?

Additional information

Funding

This research received support from the Australian government through International Postgraduate Research Scholarships, the University of Queensland through UQadvance, and the Organization for Autism Research through Graduate Student Grants.