Late diagnosis of autistic women in Spain: A participatory study

Abstract

Evidence suggests that the exponential increase in late autism diagnoses among women may be due to a lack of diagnostic tools tailored to their specific presentation, as well as to societal stigmas and biases from an early age. This study aims to give voice to a group of women to explore the reasons behind receiving an autism diagnosis in adulthood, their motivations for seeking it, and the physical, psychological, and emotional consequences of the process. The study included 30 autistic women aged 18 to 56, from Spain, with diagnostic ages ranging from 18 to 55. They participated in a semi-structured interview through different response modalities based on their preferences (e.g., in-person). This is a participatory study, with autistic individuals actively involved in all stages of the research process. Based on proportional data and a reflexive thematic analysis approach, three themes were constructed, corresponding to different stages of the process: pre-diagnosis, diagnosis, and post-diagnosis. These themes highlight the struggle to find answers and the journey toward self-validation. First-person narratives are essential to raising awareness and improving the diagnostic landscape in Spain. There is a need to develop resources for sensitive support both during and after the diagnostic journey, as well as to provide training in autism and gender perspectives for professionals, ensuring more accurate and accessible diagnoses.