“People talk about FASD diagnosis but barely any young people are asked about it”: Diagnosis perspectives and disability identity in adolescents with FASD

Abstract

PurposeYoung people with Fetal Alcohol Spectrum Disorder (FASD) are underrepresented in research and in public/professional discourse around the diagnosis and the impact of this disability. This study explores adolescents’ views about their self and disability identity, and knowledge and attitude towards the FASD diagnosis. MethodEight adolescents aged 12–19 years with an FASD diagnosis and in education, participated in this study. Data were collected online using Photovoice methodology and analysed using Interpretative Phenomenological Analysis. ResultsAdolescents expressed positive views of their FASD diagnosis in terms of its salience for self- understanding. They provided biological and causal explanations of FASD but there were no attributes of blame or shame towards biological parents. Adolescents primarily self-identified with personality traits and interests/hobbies but acknowledged FASD as part of their identity. As the adolescents developed their disability identity, parents and peers played different roles in the provision of information, support, and disclosure of the diagnosis. ConclusionThe views expressed by adolescents with FASD about the value and impact of the FASD diagnosis, and the disability identity process, were similar to other groups of young people with different neurodevelopmental and physical conditions. Self-understanding and advocacy relating to diagnosis and disability during adolescence can enhance wellbeing, access to supports and a positive self-identity. Professionals across different services can play a proactive role to develop the positive disability identity of adolescents with FASD.