This research seeks to find and analyse data describing health and healthcare disparities affecting women on the autism spectrum in the Netherlands, in order to better understand any issues found by analyzing the results in partnership with autistic women acting as experts by experience. Disparities found in previous research outside the Netherlands include differences between men and women with autism as regards access to timely autism diagnosis and access to, duration and success of autism-specific therapies. Other researchers have also found disparities in health and healthcare for people with autism and non-autistic people in areas ranging from care for common comorbid disorders, such as epilepsy, and for everyday health concerns, including provision of gynecological care. However, researchers have generally not taken an intersectional approach, so differences have been ascribed only to the impact of natal sex or presence of an autism diagnosis. This research will consider the extent to which sex, gender identity and (older) age may interact, and because it includes a qualitative element will also be able to capture information about other aspects of personal or ascribed identity that may have an impact. It will be the first study to take an intersectional approach to healthcare disparities affecting women with autism worldwide, as well as the first in the Netherlands.
The work will be carried out by an expert team based in the Athena Institute at Vrije Universiteit Amsterdam. Data from the Nationale Autisme Registry (NAR) database will be used as the basis for the study. The NAR database currently holds 5 years of wide-ranging, longitudinal data about approximately 1000 adults with autism, almost evenly divided between male and female respondents. The researchers will examine data on a variety of health- and healthcare-related questions, including but not limited to delay time between first concern and diagnosis, treatments offered, treatment success, comorbid conditions, treatment for comorbid conditions, and overall satisfaction with healthcare. Queries will be structured to look at differences between individual within-group categories (for example, men and women) and also differences found when categories are combined (for example, older women and younger women, or older women who express variant gender identities).
These results will then be shared in an accessible format with experts by experience—women with autism—who will assist us in understanding and sharing our findings. Through semi-structured exploratory interviews and carefully structured and managed focus groups, we will uncover the stories behind the numbers, developing greater clarity about the issues, problems and solutions. In contrast to previous research in this subject area, every effort will be made to understand women with autism as having intersectional identities that cannot be solely defined by natal sex or an autism diagnosis.
Results will be communicated to clinicians in the form of a ‘roadmap’ showing areas where sex-, gender-, and/or age-related issues commonly arise in healthcare for women with autism, and a ‘Best Practices Guide’ that will provide practical steps that can be taken to help. Additional academic and community outputs will be prepared and delivered to ensure wide distribution.