Grant: CIHR Fellowship

Autism Spectrum Disorder (ASD) is reported to be four to five times more common in boys than in girls. The methods and criteria for diagnosing ASD, however, are largely based on studies with boys, which recent research suggests may overlook girls and women who present differently. Indeed, girls and women with ASD are at a greater risk of being identified at a later age and, as a result, often miss critical opportunities to access early interventions and timely supports. Many women report that they go undiagnosed or are misdiagnosed with other psychiatric conditions (e.g., psychosis, anxiety, personality disorders) before receiving their ASD diagnosis; however, no research to date has systematically examined this issue. The proposed study aims to better understand why girls and women with ASD are often under-recognized, as well as their associated healthcare needs. To do this, I will conduct a two-phase mixed methods study. First, I will use Ontario health administrative and billing data to examine the diagnostic pathways (i.e., the "routes" leading to diagnosis) of women who received their ASD diagnoses as adults. Next, I will compare the health outcomes (e.g., clinical profiles and service use patterns) of women with ASD who received their diagnosis as children with a) women with ASD who received their diagnosis as adults; b) equivalent groups of men with ASD; c) women and men without ASD. Finally, to help contextualize the quantitative results, I will conduct qualitative interviews with front line primary care providers (e.g., family physicians, paediatricians) as well as referral-based specialists (e.g., psychiatrists, developmental paediatricians) concerning current ASD assessment and care practices for females. This research will generate much-needed information to reduce sex/gender diagnostic and care biases and will assist in creating training materials to help clinicians better identify and care for girls and women with ASD.