Autistic Adults and other Stakeholders Engage Together (AASET) is a Patient-Centered Outcomes Research Institute engagement project that aims to create a group of community stakeholders and researchers. Our group has anticipated in developing a common agenda to address the most pressing issues facing autistic adults. In that process, the project asked stakeholders how, when, and why they would want to be engaged in research.
In this project, we have learned that one very important priority is to address the needs of hundreds of thousands of women on the autism spectrum, often who have gone undiagnosed until adulthood. These women responded to our requests to collaborate and shared their stories about their health, healthcare they have encountered, and challenges of navigating the system via an online survey and through in-person focus groups.
Most important to these women was that the medical and research community recognized autism in women. Specifically, women acknowledged that the identifying features may be different in men than in women, but few medical or other professionals understood that. Additionally, once women were diagnosed and shared this with providers, they experienced disbelief or dismissal of their diagnosis due to the expectations of what ‘autism’ is. Improved diagnosis and recognition of autism in women was a top priority of many people we asked.
Second, women reported on the phenomenon of ‘masking’, often describing negative impacts on mental health. The feeling of needing to keep their experience of being autistic from friends or employers was shared frequently. Women on the spectrum described the exhaustion and mental energy it took to engage in neurotypical activities such as small talk, and discussed how better recognition and acceptance would mitigate some of these negative experiences.
Lastly, and also important, was the need to recognize that receiving medical care was often traumatic, resulting in the desire to never receive gynecological or women’s health care again. Medical professionals recognize the importance of preventive care including Pap smears, regular mammograms, and other procedures for women, but those procedures often involve discomfort. Women in our focus groups shared that their experiences with this care felt intrusive, and expressed that sensory differences, prior history of sexual assault and/or abuse, and difficulty expressing need for care contributed to challenges receiving preventive procedures.
AASET continues to explore the priorities of the autistic adult population, both women and men alike, and we are committed to sharing what we have learned with funders, researchers, the medical community and others. We cannot do this work alone—we are relying on collaborations with the autism and research communities, and hope that greater and more open communication about priorities will result in meaningful research that can benefit quality of life.
Want to join us? We have just started, but you can follow us on Facebook: www.facebook.com/autistichealth
You can also contribute to the project- our survey of autistic adults is still open at: www.tinyurl.com/aasetsurvey
If you are in the Washington, DC (U.S.) area, join us at a free meeting where we will discuss what we’ve learned and develop an action plan on Saturday November 10th, 2018: www.tinyurl.com/autisticmeeting