Understanding the Female Experience of ASD based on Interviews with Females with ASD or Their Caregivers
Milner, V., McIntosh, H., Colvert, E., & Happé, F. (2019). A qualitative exploration of the female experience of Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 49, 2389-2402. doi:10.1007/s10803-019-03906-4
Background
Males are more often diagnosed with ASD than females, which may be representative of the over-emphasis on males in research about ASD. If more research is conducted with males, then information known about ASD to be used for clinical diagnoses becomes male-centric. Research examining both gender profiles has suggested that females with ASD can present with different behavioral profiles than males. Specifically, females are more likely have fewer socio-communication difficulties, more social motivation, and “special interests” that are more similar in content to typically developing peers. Sensory symptoms also appear to be longer term than males, lasting longer across the lifespan. Also, compared to male counterparts, females with ASD are more likely to purposely mask symptoms (i.e., ‘camouflage’), perceive greater aggression within their friendships, and experience greater psychological distress related to the demands of social interactions. The purpose of this study was to obtain first-hand report of the experience of females with ASD (either diagnosed or self-suspected) via interviews so as not to rely on symptom measures and checklists from prior research that were created based on samples of males with ASD.
Who was involved?
Sixteen females with ASD, two females self-diagnosed as having ASD, and four mothers of girls with ASD were included in the study. All participants were invited to partake in either a group or individual discussion regarding experiences of females with ASD. Questions during the discussions covered three overarching topics: diagnostic process, the impact of ASD on their lives, and strategies for coping. Discussions were conducted either live or via phone.
What was the outcome?
Results indicated five major themes emerged across discussions:
- Stressors in fitting in with the norm (friendships, challenges of a neurotypical world, concept of gender, and coping strategies)
- Obstacles specific to autistic women and girls (much harder to obtain a diagnosis, lack of appropriate support – both a factor of not having access to trained professionals who know what to look for)
- Negative aspects of ASD – comorbid conditions (anxiety, etc.), sensory sensitivities, meltdowns/shutdowns, dependence/vulnerability, feeling difference, puberty and sexual awareness
- Perspectives of others – stigma and parent attitudes of grief and loss with diagnosis
- Positive aspects of ASD – benefits of ASD, accepting ASD and why you’re different, and strong sense of justice
What are the strengths and limitations of the study?
Strengths: In light of many previous studies focusing on males, this study focused specifically on females with ASD. Females self-identifying as having ASD were included to increase inclusiveness and avoid omitting undiagnosed women who likely had profiles that fit a camouflaging approach. Questions during the discussions covered both positive and negative experiences.
Limitations: Participant perspectives were not compared to male counterparts with ASD or typically-developing females, limiting conclusions regarding the degree to which the perspective of females with ASD differs from clinical and non-clinical comparison groups.
What are the implications?
Females with ASD appear to have particular challenges related to navigating social and intimate relationship situations, coping with psychological distress and sensory sensitivities, and obtaining a diagnosis as well as having others understand their diagnosis and how it affects their life.
