Listening to young people with autism: learning from researcher experiences

ABSTRACT

This study explores the opportunities and dilemmas that have been encountered by researchers seeking the views of young people with autism. Twelve researchers were interviewed about their experiences in this field. Through exploration of the complex methodological and ethical issues that they encountered, this study aims to better understand how researchers can improve the way they listen to, and engage with, the views of children and young people with autism. This article discusses four themes that emerged from the interviews: power dynamics; building rapport; communication; and meaningful processes and outputs.

KEYWORDS:

• Autism
• young people
• children
• research methods
• ethics

Acknowledgement

The value of this article and the insights generated are indebted to the researchers’ openness and willingness to share and reflect on their experiences.

Disclosure statement

No potential conflict of interest was reported by the authors.

ORCID

Juliet Scott-Barrett http://orcid.org/0000-0003-4607-450X

Notes

1 See the use of terminology in this article as follows. This article uses person-first and identity-first language. Important works have been written explaining the rationale behind identity-first language (e.g. Bagatell 2010; Sinclair 2013); and research has been conducted into which terms are preferred among autistic individuals, their families, policy documents and practitioners (Kenny et al. 2016). The majority of the researchers interviewed in this study used person-first language in their publications about their research with young people, therefore this article uses person-first language (children with autism) when referring to children and young people, to align with the language used by the researchers in interviews and in their publications. Identity-first language is used when referring to adults in recognition of the stated preferences of the autistic researchers whose work is discussed. The term ‘children’ is used to refer to young people under the age of 18, as defined by the United Nations Convention on the Rights of the Child (UNCRC 1989). We recognize this definition is extremely broad and covers a heterogeneous group of individuals, with diverse experiences, skills and aspirations; however, it is helpful to use this term in a way that recognizes the individuality of each young person, but also that highlights the shared phenomenon among these individuals that they are likely to experience power differentials in their interactions with adults in most contexts and societies (Morrow and Richards 1996; Punch 2002).

2 Autism, British Journal of Learning Disabilities; Children & Society; Disability & Society; Educational & Child Psychology; European Journal of Special Needs Education; International Journal of Qualitative Methods; International Journal of Research and Method in Education; International Journal of Social Research Methodology: Theory & Practice; Qualitative Research.

3 This researcher was discussing a conversation he had with a reference panel of young people with a variety of long term conditions (including autism) and disabilities who were consulted about the resources and methods being used in data collection of a large-scale research project.

4 View-seeking research conducted by autistic researchers is growing, but currently the majority of researchers who have worked with children with autism are non-autistic.

5 For full definition and further explanation see Milton (2012a, 884–886).

6 The project discussed here was working with adults with Asperger’s Syndrome, but the ideas discussed were relevant and important to this study, and we discussed how these ideas may apply to younger people.

7 This researcher discussed using a computer programme ‘In My Shoes’ to facilitate and mediate (see details of the programme in Fängström et al. 2016).

8 https://participatoryautismresearch.wordpress.com/.

9 http://www.shapingautismresearch.co.uk/tagged/participation.

10 https://www.ambitiousaboutautism.org.uk/the-research.

11 RQ1: What are the opportunities or dilemmas that have arisen when researchers listen to the views of young people with autism

RQ2: What are the techniques or approaches that help researchers elicit views in ways that aim to be meaningful for both the researcher and the young person?

Additional information

Funding

This work was supported by a Principal’s Career Development Scholarship (a University of Edinburgh PhD scholarship).