‘He also has the right to be who he is … ’. An exploration of how young people socially represent autism

ABSTRACT

An increasing number of young people are being confronted with the concept of autism. Some of them know someone who has been diagnosed as autistic. Others learn about the concept through different forms of media. Nevertheless, little research has been conducted into the meaning which young people give to the concept. In this study, we explored by means of focus groups how a number of young people try to understand what autism is and how they should or want to relate to it. A thematic analysis resulted in three interconnected central themes: (1) Autism is Different; (2) The Different One and the others; and (3) Watch out: the diagnosis of autism actually ‘makes’ a person Different. Although our participants represented autism as a fundamental form of being different, they also reflected on how a diagnosis does not just identify a reality, but also creates a reality. To them, autism is different, but the diagnosis of autism also makes a person different. Based on these results, attention is drawn to the risks of class or group discussions focusing exclusively on what autism is, as such discussions may reinforce the representation that someone with autism is fundamentally different, while possibly spurring exclusion.

KEYWORDS:

• Social representation
• autism
• focus groups
• thematic analysis
• Flanders

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes on contributors

Thomas Fondelli is a clinical psychologist and systemic psychotherapist working part time at the Zeepreventorium (De Haan, Belgium), a medical rehabilitation centre for children and adolescents, and part time in his private practice (Moerkerke, Belgium). He is associated as a trainer with Autisme Centraal (Ghent, Belgium) and the Interactie Academie (Antwerp, Belgium). As a doctoral student at the Doctoral School of Biomedical Sciences (KULeuven, Belgium) he worked on a research project investigating how the diagnosis of autism is socially represented.

Peter Rober is Full Professor in Clinical Psychology at the Institute for Family and Sexuality Studies, Faculty of Medicine, University of Leuven. He is responsible for Context - Centre of Marital and Family Therapy at UPC KU Leuven. He coordinates the Postgraduate Training in Marital and Family Therapy (KU Leuven). Prof. Rober’s primary research interests focus on family therapy with children, on the therapy process, and secrecy in families. Peter Rober is author of several articles in international family therapy journals and presented on numerous international conferences on family therapy with children and adolescents.