Story by Sara White, UVM College of Nursing & Health Sciences
When Laura Foran Lewis explored the birth stories of 16 autistic individuals who identified as women to understand how they make sense of the experience of childbirth, accounts of poor communication, untreated pain, and sensory overload dominated the narratives.
Participants in her research expressed feelings that their concerns were minimized, their wishes were ignored, and they were left out of critical communication and education during the birth process. Many women also emphasized the struggle they experienced when their own autistic traits, such as sensory sensitivities, were out of balance with the birth environment, making it difficult for them to communicate with providers and participate in their baby’s birth.
Recruited through online autism forums, the study participants shared 19 birth stories with Lewis and her team via online asynchronous interviews. Lewis then used a method known as Burke’s approach to narrative analysis to identify specific elements within each birth story and explore the parts of the narratives where two or more elements were out of balance with each other – where tension existed.
“One thing that really stood out to me was these experiences actually mirrored traumatic birth experiences that we’ve seen in other studies about childbirth,” said Lewis, an assistant professor and registered nurse.
“A few different people talked about losing trust in their health care team,” Lewis said. One study participant said she left the hospital against medical advice. Another wrote: “I didn’t bond well with my baby because I had just been traumatized.”
The findings challenge previous conclusions of research documenting delayed bonding between autistic mothers and their babies, according to Lewis.
“In the past, we’ve just assumed that these early parenting outcomes are directly related to autism, but our study sheds new light on the severe trauma many of these women face during childbirth that may lead to detachment and postpartum depression,” said Lewis, who became interested in autism after a family member’s adult diagnosis. The realization that literature on the experiences of autistic adults was lacking set Lewis on a path to understand life from an autistic perspective.
The women in Lewis’s study also reported their pain being minimized by providers.
“One of the things that we know about autism is that people might express pain differently,” said Lewis. “Some autistic people may look very calm on the surface and may have a much more subtle expression of pain compared to what a provider might expect to see.”
“One of the first things we learn in nursing school is that pain is what the patient says it is,” Lewis adds. “But this is an area where we are still seeing bias play a role in our pain assessment.”
An aspect of the study that was less surprising to Lewis was affirmation of a trend she’s noticed from the beginning of her autism research: “I’ve learned on this journey how deeply entrenched ableism (discrimination against people with disabilities by the able-bodied) is,” she said.
“Even when neurotypical people are well intended, the way that we frame questions and the way that we approach research tends to come from a very abled lens. This is why it is so critical to include autistic representation on our research team to help shape what, why, and how we research,” Lewis says.
An estimated 5,437,988 adults, or 2.21% of the United States population, are autistic, according to a 2017 study by The Centers for Disease Control and Prevention.
And “there’s growing evidence that women are under-diagnosed,” Lewis adds, noting that of the 16 women interviewed for the study, only five knew they were autistic at the time that they gave birth; and of those, two of the five did not disclose it to their health care team. This means only three of the women even had the opportunity to discuss how autism might impact their birth experience.
Lewis said that while there is not much literature on the topic, some evidence indicates women may fear their babies could be taken away.
“They’re afraid they’re going to be seen as unfit parents,” said Lewis. “There are ableist, historical roots that lead to these fears and stereotypes.”
Melissa Houser, M.D., executive director of All Brains Belong VT and assistant clinical professor of Family Medicine in the UVM Larner College of Medicine, said she regularly witnesses the impact of these stereotypes through her work as a physician in a neuro-inclusive practice.
“I think that some huge gaps are from lack of an accurate and useful understanding of what autism is, which is a neurologically based attentional system difference that impacts someone’s entire experience of the world from sensory processing to motor coordination to social communication,” said Houser, a parent of an autistic child who received a late autism diagnosis herself, just ahead of her ten-year medical school reunion.
”Many non-autistic professionals who study or work in the realm of serving autistic patients are doing so through the lens of how they were trained – and there’s a disconnect between that paradigm and what the needs and priorities of the Autistic community are,” said Houser.
Houser says she believes that people are open and willing to learn about the needs of the Autistic community, but the challenge is that “they don’t even know that they have something to learn.”
“There’s a kind of stuckness on the 1900s narrative,” Houser adds. “The way that autism is still really thought about and trained about in health care professions education, is that this is what stereotypical stress behaviors look like. The list in the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition), for example, is essentially based on observable behaviors that are stress responses.”
A move in the direction of a paradigm shift, Houser suggests, “involves reflecting on what it means to be inclusive. It’s very trendy to talk about diversity, equity, inclusion – when we really think about what inclusion is, it’s that people perceive that they belong.”
And the simplest step toward providing culturally competent health care to autistic people with differing communication preferences, according to Houser, is to ask them how they feel.
“You may have to work harder to communicate,” she adds. “We all have different brains. I don’t talk as much about neurotypical versus neurodivergent because it’s all just a continuum.”
”You can’t just send out a survey. You can’t just ask their parents; you have to employ universal design. You have to use multimodal flexible differentiated options for engagement. And even people who are non-speaking communicators have a right to have their perceived inclusion assessed,” Houser said, noting that acknowledging neurodivergence in any of its forms – whether autism or dyslexia or attention deficit hyperactivity disorder (ADHD) – is a social justice issue.
The results of Lewis’s study urge health care providers to practice being nonjudgmental from the start when working with autistic patients, and to help improve the birth experiences of autistic women by providing thorough and nonjudgmental education about the birth process; trusting reports of pain and anxiety; and making environmental adjustments to help minimize sensory overload.
“The experts are the people with lived experience,“ said Houser. “Dr. Lewis’s lab is trying to understand the experiences of autistic adults.”
Lewis earned the 2022 Best of The Journal of Obstetric, Gynecologic, & Neonatal Nursing (JOGNN) award for “Exploring the Birth Stories of Women on the Autism Spectrum,” cowritten with University of Vermont Class of 2021 alumni Hannah Schirling, Emma Beaudoin, Hannah Scheibner, and Alexa Cestrone.
Note: This article uses identity-first language (i.e. “autistic person”) instead of person-first language (i.e. “person with autism”) to reflect the preferences of most autistic individuals.
