by Jessica Rast, PhD and Molly Sadowsky, MPH
This blog is about pregnancy and autistic people. To be clear, we mean pregnant autistic people. Autistic people have reproductive organs and have sex.
People often assume we mean pregnancy in people who have an autistic child. Or, once we clarify, they assume this is not a common occurrence. To that we say, “Thank you for the setup on the importance of the work!” Far too little attention is paid to this topic, resulting in health disparities in autistic people and their offspring.
In the U.S., there has been very little research on sexual and reproductive health in autistic people. The healthcare system itself highlights the importance of researching the health care experiences autistic people have during pregnancy. The system, it appears, is inadequately prepared to serve autistic patients.
Our perceptions were confirmed by recent experiences at a conference. The attendees were mostly OBGYNs and other people providing maternal and fetal health care. We were there to present preliminary findings about pregnancy and delivery care in autistic people because we thought raising awareness about this population among clinical professionals was an important endeavor.
We had just finished giving an attendee an elevator pitch on the importance of this topic when they asked, “Don’t those patients have somewhere else they go for their care?”
The question is telling. How do we expect to provide accessible, adequate care, if no one feels responsible for providing such care?
The question came from a third-year medical student who likely hadn’t completed any clinical practice. However, they did have the benefit of the most recent medical curriculum that is available. .
It turns out our reasoning for presenting at that conference was well founded – that healthcare professionals learn little to nothing about patients on the autism spectrum. General knowledge about autism is very low among OBGYNs. Compared to other provider types, including mental health providers, primary care providers, and physicians of other health specialties, OBGYNs have the lowest knowledge about autism and the least confidence in treating autistic patients.1 But we know that autistic people get pregnant. Many of them. Maybe even at rates similar to non-autistic people.
So, do autistic people “have somewhere else to go” for reproductive health care? No.
We must work to improve the care autistic people receive from available systems and providers. Ensuring accessible care, asserting reproductive rights, and increasing knowledge of how best to care for autistic patients are some important steps to moving forward.
Our team is relatively new to investigating pregnancy in autistic people, as are most people who do research or seek to understand this space. But, do you know who isn’t new to this space? Autistic people who have been pregnant.
Their experiences have been invaluable in identifying what’s important to understand and improve. Moving forward, any efforts to seek improvement in health care for autistic birthing people must be informed by autistic people who have used these services. This is the best way to build a research base that can address real world needs and inform policy.
Stay tuned for our forthcoming policy brief about autism and pregnancy. You’ll find facts and recommendations that can help your advocacy work. Potential audience includes: autisitc self-advocates, healthcare providers, and policymakers.