UVM researcher explores birth stories of women on autism spectrum

Published: Apr. 21, 2022 at 5:18 PM EDT
Email This Link
Share on Pinterest
Share on LinkedIn

BURLINGTON, Vt. (WCAX) - Childbirth can be both mentally and physically traumatic, but for autistic women, it can be overwhelming. Research shows autistic individuals tend to experience pain and sensory stimulation much differently than neurotypical people. But a local nurse is working to make sure health care professionals can better support those individuals who need it.

For two years, Laura Foran Lewis and four undergraduate nursing students explored 19 intimate childbirth stories of 16 autistic women. The 10-page report published online in September illustrates a troubling trend.

“They really felt that their needs weren’t heard, their needs weren’t understood or supported,” Lewis said.

The mother, RN, and assistant professor of nursing at the University of Vermont says many of the anecdotes are disturbing and disappointing. The narratives were dominated by accounts of poor communication, sensory overload, and untreated pain.

“They were saying, ‘I was telling people that I was in a lot of pain, but my facial expressions weren’t matching what they expected to see.’ That they looked calm and they weren’t having these dramatic pain responses and so they felt that their pain was minimized or ignored,” Lewis said.

Unmet needs that Lewis says are likely connected to a lack of education about how autism presents in female adults. The traits are often less evident than in males, which commonly leads to misdiagnosis. Lewis stresses that stereotypes and stigma pose additional challenges.

“In 11 of these cases, the providers and the nurses in the health care team really had no idea that the person in front of them was autistic,” Lewis said.

Of the 16 study participants, only five formally identified as autistic at the time of giving birth, and two of those five didn’t tell their doctor.

Reporter Christina Guessferd: Why did they feel like they couldn’t disclose that they were autistic -- for those who had been diagnosed?

Laura Foran Lewis: I think it really comes down to fear and feeling that it’s not a safe place for disclosure.

Lewis says some research finds autistic individuals worry they’ll be deemed unfit parents.

Reporter Christina Guessferd: What small adjustments can health care professionals make right now?

Laura Foran Lewis: It’s really a matter of treating each person as they are presenting in front of us and what their unique needs are. I think it’s that non-judgemental approach that nursing tends to be so good at, and I think it’s really leaning into that as a form of inclusivity and accessibility, looking at ways that we can promote universal design for health care.

Lewis’s article “Exploring the Birth Stories of Women on the Spectrum” received the 2022 Best of the Journal of Obstetric, Gynecologic, and Neonatal Nursing Award.

Copyright 2022 WCAX. All rights reserved.