“I Was Exhausted Trying to Figure It out”: The Experiences of Females Receiving an Autism Diagnosis in Middle Adulthood

Background: Females often receive Autism Spectrum Condition (ASC) diagnoses later than males, and their experience may differ in a number of ways as a result of this and gender related issues. Whilst the prevalence of autism diagnosis in females in middle adulthood is increasing there is little understanding of their lived experiences.

Objectives: To investigate the lived experiences of female adults diagnosed with an ASC in middle adulthood.

Methods: Participants were females (n=11) who received an ASC diagnosis in the UK, over the age of 40 years. Participant mean age at diagnosis was 47 years (range 40-62 years); mean current age was 51 years (range 43-64 years). In-depth semi-structured interviews with each participant were analysed using Interpretative Phenomenological Analysis (IPA).

Results: Four super-ordinate themes emerged: The hidden nature of ASC in females (pretending to be normal and fitting in; mental health and mislabelling); the process of acceptance (initial reactions and search for understanding; re-living life through a new lens; grief and reflections on the past); the impact of others post-diagnosis (initial reactions; stereotyped assumptions); a new identity on the autism spectrum (negotiating relationships, connections and community; changing well-being and views of the self; the meaning of diagnosis).

Conclusions: Several common factors affect the experience of late diagnosis in females, including the widespread limited understanding of others. The process of diagnosis tended to be experienced as facilitating transition from being self-critical to self-compassionate. Participants experienced a change in identity that enabled greater acceptance and understanding of the self. However, this was painful to adjust to at such a late stage. Recommendations to practitioners are that strategies to conceal features of ASC should be considered at assessment; autistic-led training of service providers to support earlier recognition is needed; females should be assessed by skilled clinicians who are able to approach the diagnostic process critically.