Roadblocks to Earlier Identification of Autism in Girls and Women from the Perspectives of Autistic Girls and Women and Parents

Background: Earlier recognition of autism in girls and women offers opportunities to provide support and care that are tailored to their health, education and social care needs. Research suggests that autism is often overlooked, misdiagnosed or diagnosed later for girls and women by health and education professionals. Many are not considered or referred for autism assessments, even when they have approached health or education services for help. Earlier recognition can open opportunities for referrals to diagnostic services and to health, education and social services that can promote mental health and wellbeing and participation in daily life activities.

Objectives: Our objectives were: 1) to engage directly with autistic girls and women, and parents to guide our research questions, methods and analytic interpretations; 2) to identify the service experiences that led to girls and women being identified or diagnosed with autism; and, 3) to examine the ‘roadblocks’ in these service experiences that prevented earlier recognition and diagnosis from the perspectives of autistic girls and women, and parents.

Methods: We partnered with a local autism association to create a project advisory of autistic women and parents that provided: 1) guidance on autism-friendly data collection strategies; 2) interpretations of key themes; and, 3) recommendations for applying and mobilizing the results. A qualitative design was used to map and generate data about the service pathways experienced by girls and women that led to recognition and diagnosis of autism. Data collection methods included individual and focus group interviews with three groups of participants: autistic girls (age 12 to 18 years) and women (age 19 years and older), and parents of an autistic girl or woman. Thematic analysis methods proposed by Braun and Clarke (2006) were used to identify patterns in the data related to service pathways and factors associated with missed opportunities for recognition of autism on these pathways.

Results: Six focus groups and 20 individual interviews were conducted, involving 23 girls and women diagnosed clinically with autism and four self-diagnosed women (age range 12 to 71 years), and 21 parents. The age of diagnosis ranged from 2 to 63 years. Participants experienced a range of service pathways leading to diagnosis, including early referrals for autism assessments by service providers, referrals related to mental health and/or stressful life events, and self-referrals after gaining information about autism from online resources. Several ‘roadblocks’ that prevented earlier recognition were identified, including lack of service provider training on ‘female presentations’ of autism, masking of autistic characteristics by girls and women, and autism not being considered when participants experienced challenges with social roles and demands at different life stages.

Conclusions: We identified a number of service pathways and roadblocks to recognition of autism in girls and women. This effort provides new opportunities to improve access to autism assessment services and supports at an earlier stage on the service pathway. Recommendations for interventions (e.g., training of front line service providers, refining screening and diagnostic practices) were identified.