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Laura Foran Lewis, PhD, RN
Dr. Laura Foran Lewis is a registered nurse and an Assistant Professor at the University of Vermont. Her primary research focus is on the experiences of autistic adults and issues impacting quality of life, social relationships, and identity formation. Dr. Lewis is particularly interested in the experiences of those who discover an autism identity in adulthood as well as the intersection of queer and autistic identity for those who identify as LGBTQIA+. Dr. Lewis is an expert in qualitative methodology, and she is committed to using a participatory action approach to include autistic people as partners in her research.
In this episode, we interview Dr. Laura Foran Lewis PhD, RN about her award-winning research exploring the birth experiences of women on the autism spectrum. We talk about the importance of participatory action research, the need to broaden our idea of what is autism, universal design, birth plan redesign, birth trauma, and of course, how you can improve your communication to prevent trauma and establish trusting relationships.
Main Questions Asked
- First off, congratulations on winning the 2022 Best of The Journal of Obstetric, Gynecologic, & Neonatal Nursing (JOGNN) award for this study, we enjoyed reading about the study and will include a link to it on our website. But before we get into the study details, can you share with our listeners where the idea for this study came from?
- Can you talk more about autism and its relevance to birthing experiences?
- Can you share with us a little bit about your sample and methods?
- What were your main findings?
- What findings were you not surprised by and why?
- What findings surprised you and why?
- How do/how can your findings relate to how clinicians communicate with folks on the autism spectrum?
- What main message do you want providers to take away from your research?
- Can you tell us about universal design for healthcare and how this would improve birthing experiences for folks on the autism spectrum?
- We have a growing number of listeners who do not identify as clinicians; what would you like to share with these folks who may be neurodivergent or have autism spectrum disorders and may be giving birth?/
- Where can listeners go to learn more about supporting birthing people who are on the autism spectrum?
Welcome to the Womancentered Health Podcast. I am Dr. Nicole Loew and with me is Dr. Stephanie Edmunds. We are both PhD prepared nurses and the founders of Woman Centered Health. Join us as we talk with health professionals and researchers who can help you improve your communication with patients about sexual and reproductive health. Please visit our website to learn more and connect with us on social media by going to www womancentered health.com.
Hi, everybody, and welcome to the Woman Centered Health Podcast. Today we are speaking with Dr. Laura Foreign Lewis, a nurse, researcher, and assistant professor at the University of Vermont College of Nursing and Health Sciences, about the birth experiences of folks on the odd spectrum. We have wanted to discuss this area for quite some time, and we love speaking with Dr. Hauser, someone you also know well, Dr. Lewis. We’re very excited to talk with you today. We also want to let our listeners know that we are undergoing some strategic changes to improve our listener experience and streamline our processes. We will no longer be offering our traditional show notes and will instead include takeaways resources and transcripts directly on our website. However, we would still love and appreciate your support and you can find ways to support us on our website by going to www.womansenteredhealth.com and clicking the Support US tab.
Also, if you missed our big news, nurses can now earn ce for listening to the WCH podcast. Just check out my cehq.com or download the Cehq app, or you can visit our website again www.womencenteredhealth.com to learn more.
Hi Dr. Lewis. Thank you so much for being a guest on our podcast today. The first question we always ask our guests is if you can share with our listeners of details about your background.
Hi, thank you so much for having me. Obviously, I’m a nurse. My clinical background is actually an oncology, so very far away from what I’m researching today. But I was in a PhD program. I was actually working on research about dementia at the end of life, completely different than this. While I was in my program, I had a family member who found out they were autistic. This was an adult person, honestly, nothing like the way I envisioned autism would look. Being a researcher, I went by the literature and trying to find out more about just autistic adult experiences. If it was common, find out that you were autistic as an adult. I found almost nothing at that time. In some ways, a researcher’s dream to find an area where nothing. I switched gears completely and started researching autism in adulthood. That’s what I’ve been doing ever since.
Completely transitioned my program of research. Most of my work is qualitative, and so I look a lot at autistic people’s experiences, their lived experiences, a lot of social relationship experiences and identity formation. I also do just want to have a disclaimer on the podcast that I don’t actually work in women’s health or labor and delivery. I have no background in that area at all. I have done some research, obviously, that overlaps birthing experiences and autism.
Yes, thank you for that. The next question we always ask our guest, which is our favorite question, is what informs your perspective? In other words, why do you do what you do and what is most valuable to you?
I love this question, especially as a qualitative researcher. I feel like so much of who I am influences the way that I see the world and interpret data and what I choose to study. So, as I mentioned, I started researching autism after having a family member who identified as autistic. I started out trying to better understand that person in our relationship and how to connect. What I found was that studying autism actually made me better at understanding all of my relationship. It definitely made me more empathetic that are able to relate to other people better understanding of my own brain. I’m also a mom. I have three kids. They’re all under the age of five, so they are a party and a half. I think that understanding autism has just made me a better mom, made me better able to understand their needs and relate to them.
The other piece of this is that I think recognizing that I was trained as a nurse, I was trained to understand autism as a disorder. I was trained to see it as autism spectrum disorder. I was taught that the best way to help support autistic people was to find ways to help, treat and intervene. Basically most of these focus on ways to help autistic people not be autistic. Help really belongs in air quotes there. Over time, I’ve had a lot of really great teachers, especially autistic people themselves, who have helped me understand the importance of autism and other forms of neurodivergence as a really beneficial form of human diversity that we all think and feel and process things differently, we all communicate differently. I’ve definitely shifted away from that medical model approach to looking at autism and much more towards that social model of disability.
I know that you already talked about this in your podcast with Dr. Hauser, but basically looking at disability as being a mismatch between persons needs and their social and physical environment, and when we can lessen barriers in people’s environments, we can decrease disability and we can improve people’s ability to participate meaningfully in their own lives. I think one other thing I should say just along those lines, is that I do intentionally use the term autistic people instead of person with autism. This goes along with that social model of disability. There’s been a lot of research lately that shows that this language is preferred by many autistic people, and it’s the language that’s endorsed by a lot of self advocacy groups for autistic people. I know it’s not everybody’s preference, but that’s the language that I choose to use when talking about autism.
I really appreciate you saying that. Nicole and I just had this conversation before you got on because I was texting with a friend yesterday and who is a speechlanguage pathologist, but she said that people with autism is now kind of turning back and saying, yeah, it’s autistic child or autistic person. I’ve been kind of trying to use that person first language. Yeah, not everyone is really on board with that or is going a different direction. So thanks for clarifying that.
Yeah, and I think what’s really challenging is it’s not only what people prefer, it’s that they view the alternative as offensive. I’ve had people in the study say that saying person with autism to them was akin to using a racial slur. I’ve had studies that have actually been boycotted online because I’ve used person first language. People view it almost as a red flag that you’re not a good researcher for them to trust. I think the idea there is that we’re trying to separate autism from the person. That we’re trying to say you’re not just autism, you’re more than that. What people are really coming back and saying is, I’m happy to be autistic. It’s part of my identity, it’s something I embrace and I don’t want you or need you to try and separate it from who I am.
Yeah, that’s really thoughtful. I wonder too now some of our previous episodes, I mean, even just the intersex one, which I don’t even think is out yet, saying like, people with intersex traits, I haven’t personally heard that community would refer to or want people to say intersex people. I wonder about the trajectory for other communities.
Yeah. I think the autism movement has really followed, I think a lot of the deaf movement who really led the way on deaf culture and understanding this as being part of people’s identity. I think where it gets really difficult is that we also have a lot of parents who feel very strongly that we are taking something away from their child by calling them an autistic child. They feel very strongly that the identity first language is offensive. What I’ve run into is whichever language I choose to use does seem that we’re kind offending one group of stakeholders. Personally, I’ve found that I’d rather align people who have the lived experience than people who care about those people, if that makes sense.
Totally. Yeah. Thank you.
Thank you so much for that. Also just want to say that I appreciate you looping in the discussion of how we are trained. I think that was a really great point to make. So thank you for that. Okay, so as we said today, we’re going to talk about the birth experiences of folks on the autism spectrum. So let’s jump right in. First off, congratulations on winning the 2022 best of the Journal of Obstetrics Gynecologygic and Neonatal Nursing Journal award for this study. We really enjoyed reading all about the study, and we will be sure to include a link to it on our website. Before we get into the study details, can you share with our listeners where the idea for the study came from? Because it’s really interesting.
Thank you so much. I just had the pleasure of going to the auAN Convention in Colorado, and it was a blast. It said, I’ve been studying autistic people’s experiences for a while now, and one of the things that’s come from that is understanding that autism affects a lot of people’s sensory experiences. A lot of autistic people are really sensitive to things like lights or sounds or even like, patterns on a carpet. What a lot of people describe is that they take in all of the sensory information at the same time. It really overloads their brain, and it makes it really hard to take in other inputs that are coming in. So, like, someone standing in front of you talking can be hard to hear what they’re saying and process the information they’re sharing because you’re very distracted by all these other input that are coming in.
I had my own baby, I was really amazed at how my own brain responded to that experience. I found that I was processing senses really differently than the way I typically process senses. I’m not autistic that I’m aware of, but I was really intrigued by this whole experience of how our brains process sensory input, especially when we’re under this tremendous physical and emotional and all kinds of stress. After that experience, I really started to wonder, what is it like for autistic people to go through this experience where you do have all these other sensory input coming in at the same time that you’re trying to accomplish something really important? That was where the idea came from.
I also thought you had mentioned that you do have engagement with the community, and perhaps this is also something that arose from them as well.
Thank you so much for bringing that up. A lot of the work that I do is participate action research. Actually, as of January, I’ve committed that all of the work that I’m doing moving forward includes autistic people on my research team. Dr. Hauser is a person who is a fabulous contributor to a lot of the work I do and gives me a lot of feedback and guidance and support in helping shape the research that I conduct and really point out directions that we need to go. This study in particular didn’t come from the autistic community members that I work with, but certainly those have been voices that I’ve been engaged with and listening to. I do a lot of looking on social media and blogs and all kinds of things that autistic people are creating content constantly about their experiences. Definitely those are things that shape future directions for the research that I’m doing.
I think a really critical way that we decide what direction to take our research and make sure that it is impactful and meaningful to the people that we’re trying to support when we go about doing these kind of studies.
You talked already about the sensory processing and how autistic people, I don’t know, more sensitive to some of those things like lights and noises and just everything in our environment. How is that relevant to the birthing experience exactly?
I think birth is like a sensory bomb, if you will. I think you’ve got sounds and you’ve got lights and smells of you hear other people giving birth and then you’ve got all that tactile stimulation of doing exams and you’re in places that you may not be used to strangers touching. The feeling of the gown on your body temperature is a huge one. Now you’ve got, you’re often exposed and now you’ve got this temperature that you don’t have any way to regulate monitors being on your body. On top of all these external stimuli, you also have the internal sensation of a baby being in you that you’ve kind of grown accustomed to in some ways over nine months. That’s still a new sensory input that they are processing when you’re taking all of that in at the same time, for a lot of people it can be so overwhelming that they experience what people often describe as a shutdown.
This inability to process information or communicate with other people, it can also just lead to dissociation, just leaving that body behind basically as a means of trying to escape all the sensory input. The other piece is that birth is really full of social inputs as well. You have people who are coming and going in the room. When we look at defining characteristics of autism, social communication is a really big part of that. So the way that people communicate. The way that they process social interactions and prefer to engage socially and now you’ve got the space that you have no control over and you’ve got people coming in and out of that space and people who I remember my own birth anesthesiologist coming in and trying to make a joke and I was like in the zone moment where I was just trying to breathe and I’m like.
Am I supposed to laugh at this? Like go away. I had no interest in that joke. You’ve got this really overwhelming experience going on and that’s on top of a baseline where you’re hypersensitive to a lot of that input. I think the other thing to really keep in mind here is that a lot of autistic people, and especially women are really skilled at masking their autistic traits. Basically that means being able to put on a front so that other people can’t detect the ways that they’re actually thinking and processing and feeling. A lot of people describe this as a survival mechanism. So for example, making eye contact. I think providers a lot of the time think, oh, this person makes eye contact, they engage in small talk. They don’t even think about autism. In reality, just because somebody is making eye contact, just because they’re engaging in small talk has nothing to do with how they’re thinking, processing, feeling.
I think it’s really important to recognize that there may not be any outward signs that somebody is autistic. The important thing to keep in mind here is that masking behavior, it’s exhausting. It’s linked to depression, it’s linked to suicide. We know that it’s not safe or healthy for people to put on this nonautistic mask that they feel like they have to wear. What the research is showing is that there’s kind of becomes this division between the true self and the performed self that creates almost an identity crisis for people. I think recognizing that just because somebody appears a certain way, it really means nothing. The other thing totally lost my train of thought. There was another thing. The other thing is that a lot of the time when people mask and then they’re under this extreme stress, that mask comes off sometimes for the first time.
They may not really know how to be familiar with how to process any of what they’re feeling right now. It may be a really overwhelming experience for them to cope with, taking the mask off and being especially vulnerable to these strangers who are there to take care of them.
That reminded me of what am I thinking of the body dysmorphia? Is that the term? I’m thinking that trans people body dysmorphia. That’s probably body image. What am I thinking of?
Passing happens a lot. People talk about passing and masking very similarly.
Yeah, exactly. Passing and masking. Yeah, like that a lot of the depression and suicidal ideation that trans people have is from that constant having to mask or pass and having that identity crisis within themselves. That really makes a lot of sense to me when you say it like that.
I was just going to say it’s obviously a very it’s exhausting. This constant wearing something that isn’t your authentic self is harmful. I think we can all relate to the idea that would be harmful whether we personally have experienced that or not.
You had mentioned the research, so let’s talk about your research. Can you talk more about or share with us more about the research you did, including your sample and the methods?
Absolutely. This was a study where we recruited from social media groups on Facebook and Reddit. We got permission from site moderators, obviously first, and then posted recruitment notices in those groups. We invited anybody to participate who is 18 or older, anybody who selfidentified as autistic and had experienced childbirth. Selfidentifying as autistic, I know, can be seen as maybe not being as rigorous as if we had only included people who were formally diagnosed. My own previous work, and a lot of other people’s work as well, has shown that there are a lot more people nowadays identifying as autistic in adulthood. Diagnosis is really difficult for a lot of adults to actually access. It’s financially inaccessible. There aren’t a lot of specialists who are willing to diagnose adults in the first place and then who actually understand how autism can present in autistic adults. Even for people who are able to find those specialists, there are a lot of barriers to just accessing care in general and being able to navigate the system to be able to get that diagnosis.
We decided to include anybody who selfidentified as autistic, whether or not they were formally diagnosed. We used like a surveystyle interview process. A lot of research has shown that facetoface communication can be really stressful for a lot of autistic people. That real time pressure of having to respond. As I’m asking you a question, it can basically make it people feel less control over their communication and it can decrease their comprehension of information. In this study, we chose to do Asynchronous and written communication. Basically, we sent a survey link to people that had big openended questions. We asked them to provide an email address. We didn’t communicate with them on email because of IRB and wanting to protect their security over email. What we did is we emailed them individual survey links that had follow up questions on the survey. We had something like 20 something individual survey links for our participants that we would just send them their own link to their questions.
What we asked people in the initial survey was to tell us a birth story, whatever they consider the beginning to whatever they consider the end. We got a lot of great responses. We ended up with 16 participants, told us 19 different stories, so three of them told us about two different birth stories. We analyze those using a method called narrative analysis. We specifically used an approach developed by Kenneth Burke. Basically, once we have those birth stories, we broke them into scenes of the story, almost like you would think about acts in a play. For each of those scenes, we identified five elements within the story. So Bert calls this the dramatistic pentagon. So there’s the act, that’s what’s happening. There’s the scene. That’s the background or the environment to the act. You have the agent that’s the person who’s performing the act, the agency that’s the approach to performing the act, and then the purpose or why the act occurred.
Basically the who, what, when, where, why and how the story. We took each of those elements and we juxtapose them to like, compared them to each other. We wanted to see if there were any mismatches among the elements. Anywhere there’s a mismatch, we call trouble. Basically, like, example I like to use is if you think about like, wearing a bathing suit, that’s an act. If you do that at a beach or a scene, you’re fine. If you do the same act and you wear a bathing suit and you go out, let’s say in a snowstorm as your scene, there’s obviously going to be some trouble there. It’s not really a great decision to wear a bathing suit in a snowstorm. We’re looking for areas where there was a mismatch between any two of those elements. The great part about this method is it really lets us see the whole story together.
So, for example, if there was a point of tension early on in the story, and then it caused conflict later on in the story, so like, the patient wanted something and the nurse refused, and then the patient felt that they lost trust with that nurse. Way later on in the story, they didn’t want to listen to the nurse. They didn’t trust the nurse anymore. We could pick up on how that played out throughout the story. All in all, we had, as I said, 16 participants. The average age of our participants at time of participation was 36 and a half years. Average age at the time they gave birth was about 27 years. All of our participants identified as women, most were white, were 14. Out of 16 who were white, most came from the United States, United Kingdom, New Zealand, and most talked about a first birth experience.
That was 14 of the 19 were describing their first birth and 14 of the 19 described a vaginal birth experience. One section I think was most interesting about the sample is that of the 16 participants, five of those 16 were aware that they were autistic at the time they gave birth, which means eleven of them were not. That has a lot of implications for providers who obviously provider would not know if this person is not autistic, if they don’t know themselves, and obviously aren’t disclosing that. What I think is most interesting is of the five who knew that they were autistic, two did not disclose that to the health care team. If you were to interview the providers who cared for these patients, only three of these and these 19 stories actually knew they were caring for an autistic patient.
My researcher, Solo is loving this. Nicole and I one of our mentors are, I don’t know, favorite teacher or most mindblowing teacher did narrative analysis. So we love hearing about this stuff. Just the asynchronous online interviewing, that’s super awesome because I feel like we’re always taught, like, face to face interview is, like, the gold standard, and anything else is not as rigorous. Even now, like, with COVID, like, those conversations aren’t really happening anymore. I know, like, just even me personally, I love having time to think through I call myself a slow processor, so I love time to think through my answers to things. I can really appreciate that as a great method.
Thank you. I think what’s been really cool for me to see is now working with Autistic Partners as Poresearchers. One thing that they’re really pushing for us to start doing as we move forward is multimodal interviewing. So offering options. You know, I think, Dr. Howes, we talked a lot about not having a default and having options. Looking at ways that people can choose to participate in a face to face or a zoom interview, or they can do it in writing, or we can have those declarative type statements so they can respond, not just to open ended questions, which can be really overwhelming for a lot of people to process and respond to. I think it is a newer direction that I’m personally hoping to see my own research go, and I’d love to see others do that too. There’s kind of that battle between does it take away from the research because you’re doing things not consistently across the board and in other ways, are you adding to the research by triangulating your data collection?
I think there are definitely pros and cons to consider with any approach. For me, thinking it through any way that we can better engage with the participants and get them to share a response in a way that is best for them, I think it’s a win. Yeah.
I mean, going back to what you said about rigorous and that argument, I think whatever is the most rigorous is the way that you can get the best data from your research participant, and that is from how they decide they want to give you that data, in my opinion. Now, let’s talk about what you found in your research. Can you share with us some of the findings?
I think the main finding by far was that most of the areas where we found this trouble or the mismatch between two elements in the story, they came from a mismatch between the act so what was happening and the agency or how that act happening. I think we do a lot of things in healthcare in general, and sometimes we do them in a way that’s perceived as uncaring, or if people don’t know why we’re doing them, or if they don’t have all the information, they can be perceived as almost abusive, I would say. What we found in this study was that a lot of people were talking about acts that they perceive as uncaring. I would bet a lot of money that if we interviewed people who are caring for them, that they were not uncaring people, that they were not trying to come across as uncaring, that they were using things that they’ve been trained to do as being therapeutic.
The way that those actions and the way that they were carried out were perceived was really troubling and traumatic for the participants in this study. Overall, people felt that their concerns were often minimized. They felt their wishes were ignored, and they felt they didn’t receive adequate information about what was happening to them, to their bodies, to their babies. This was especially a dominant theme when people talked about their pain. I have a quote from a participant here. She said, no one but my partner believed because I didn’t scream and cry. I did keep explaining to the surgeon and anesthesia exactly what I could feel happening, but they kept insisting that it was all in my imagination and if I could really feel it, I wouldn’t be able to lay there talking to them. I’d be screaming. They kept insisting that until my blood pressure started to go through the roof, I passed out from the pain.
When I came to, they were panicking and had a mask over my face, giving me a general anesthetic. A lot of participants shared really similar stories to this. One of the things that I think was interesting that came out of this is that when these individuals described themselves, they could almost backtrack and say, well, I guess part of it was that I have a really flat affect when I’m in pain or I don’t normally scream when I’m in pain, or I don’t normally cry. Because they’re what we consider the objective signs of pain were missing, we are trained as providers to measure those signs, to look for those things. These individuals didn’t have them, they really weren’t believed. I think it’s really critical for anyone, caring for anybody, whether they’re neurodivergent or not, that we really need to believe people’s reports of pain, which feels like, day one of nursing school, that pain is what the patient says it is.
I think when it comes to practically carrying that out, sometimes we miss the boat . Recognizing that physical signs of pain might not be a good indicator, especially in this population, a lot of people also talked about not being assessed when they ask to be checked. They talked about being touched without warning, having procedures like membrane sweeps or rupture of membranes without their consent. Some also shared that their health care team made jokes that were perceived as rule or. Inappropriate for the situation many described. They used the words violated and powerless as how they felt in their birth experiences. As a result of this, the kind of downstream effect is that later on in their stories, many of them refused medically indicated procedures and left the hospital against medical advice. Obviously these things have bigger impacts than just how that person felt or how they just walked away and perceived their birth experience.
You know, these pretty big picture things. Another major finding was an imbalance between the scene so the environment and the agent so in this case, the birthing person so that the environment was poorly matched to their needs. Many described that sensory stuff we had already talked about dissociation during childbirth is really common. A lot felt that they just weren’t able to communicate with their team because they were so sensory overloaded. Others felt that they had these. Part of that masking picture, a coping mechanism that a lot of people do, is they’ll rehearse these kind of common phrases that we use a lot of the time and so they can kind of spit them out without thinking. A lot of these participants talked about following the script or just trying to say the right thing at the right time. They described just spitting out these lines to try and answer questions.
They didn’t reflect how they honestly were experiencing their childbirth. Kind of trying to appease people instead of being authentic as just a response. I have kind of a longer quote here, but I think it really captures this whole idea of the sensory experience. This is an individual who was she described her birth as traumatizing and she experienced this Assyrian section. She said if you can imagine the most frightening, dreadful and absolutely helpless feeling of being pinned to a small cold table while you watch a group of people you’ve never met before assist your doctor in cutting open your flesh and watching them peel back your muscle and fat and continue to cut further past the uterine lining. I watched the whole procedure like a movie and a large mirrored light that hung from the ceiling above my head. I couldn’t look away. I was frigid, freezing and slipping in and out of consciousness.
I remember holding a nurse’s hand on my right and my boyfriend’s on my left. I remember aggressively forcing back the vomit and tried and failed to form words and ask for a barf pail. I think the perception and lived experience of my son’s birth was definitely made worse by autism. Specifically sensory processing difficulties. The cut of the scalpel, the touch of the doctor’s cold hands, the noises I kept hearing. In short, it was like a no good, worst case version of what every day is like living on the autism spectrum with ridiculous sensory sensitivities. If I can just add more to what she had to say at the end of her story, she said, when I think back to the memories of this birth, it almost ripped my heart out. Because after I’d been stitched up and sent out of the recovery area, I distinctly remember not wanting touch, hold or even look at my baby.
Not because I didn’t love him or want to hold him, but I was so disgusted at the events just played out in the room.
I’m going to get on my little nursing research so bot for a minute and I am just so in love with everything you’re saying. Because as nurses, we should be responding to the needs of our community and our community should be who dictates the research that we are doing and how we are doing it. I love that what you’re doing is challenging this. Like, oh, you should do a double blinded RCT is the gold standard or in person is the gold standard. It’s like, when do we recognize that maybe the gold standard is actually crippling what our knowledge and what we know and what we are gaining from these and so snaps all around to you for challenging that and really embracing and including the community. I think all nursing needs to do this direction. And that’s my soapbox. Thank you.
That’s heartbreaking. Wow. Yeah. To know on top of that, she is not the only one by far who feels that way. We know just from other birthing stories that traumatic births are common in all populations. To understand you have the sensory processing hypersensitivity, how that just adds an additional big additional layer onto it and it’s just really devastating, especially for that new mom and that new baby.
I think one of the things that really I think surprised me about these findings is that previous research that has looked at autistic parenting, there’s not a lot out there, but what we have looked at, we’ve basically found that this detachment between the birthing person and the baby is we’ve just decided that part of the autism picture. I think one of the big AHA moments for me was it is parallel with what we see in traumatic childbirth of anybody who gives birth. Are we probably, I think, just looking at a situation where we have a population who is way at high risk of being traumatized during their delivery and then looking at aftermath is actually aftermath trauma. Instead we’re saying, well, look at this. This autistic parents and this baby, they haven’t bonded well, when really I’m wondering at the end of the study of what we’re seeing are effects of trauma and not related to autism at all.
Are you planning another study on that? That would be fascinating.
I would love to. It’s not on the radar at the moment, but it’s definitely in the back of my mind as kind of a next step from this study.
Well, let me just ask you on the side. You kind of told us that you were surprised by that finding, the childbirth and the detachment and then how that might relate to or be associated with child rearing. Are there any other findings that surprised you and why?
I think when we’re looking at the outcomes and what we should be doing specifically for these autistic patients, the reality is most of them don’t know that they’re autistic during that childbirth experience in many cases. Any approach that we can use across the board that reduces trauma is going to improve care for everybody, especially since we can’t just pinpoint these particular patients and say, this is how we should do it. I think it’s part of that universal design that traumainformed care, the ways that we need to handle every patient every time. I think the biggest surprise was it was the level of trauma, I think. So I’ve done some previous research. I don’t know if you’re familiar with Dr. Sheryl Beck and her work at all. Her work is mostly on posttraumatic stress among people after they give birth. She’s looked a lot of postpartum depression, but a lot of posttraumatic stress.
When I was a graduate student, she was my advisor, so I happened to work on some of her research even though it was outside of my area. I had read stories of traumatic childbirth before, and I found that a lot of these stories I was hearing were familiar with stories I had read before from people’s experiences with traumatic childbirth, autistic or not. I think what really surprised me here was that piece about the downstream impacts of the physical care. I think I was more familiar with parenting and postpartum depression and cognitive fog and these kind of things that we see, in early parenting stage. I wasn’t expecting to see people who refuse to have their membranes ruptured when providers said it was necessary. I wasn’t expecting people to take their baby and leave immediately after having the baby. I think those are the things that more surprised me, was the level of the trauma experience and the immediate impact of that trauma.
Another short quote here. Somebody was describing why they refused a medical procedure, and they said, I did not want these people who clearly were not taking me seriously touch me and violate my space because I did not trust them at this point to listen to me if I became uncomfortable. I think that idea of these kind of early on pieces that would seem innocuous and. You know. I haven’t been a labor and delivery nurse. I’ve been a nurse in other settings. I know how things can go and how sometimes you’re busy and sometimes you feel that the patient’s request is unreasonable. Sometimes you make a joke that you’re just trying to lighten the mood and you realize that wasn’t really a right joke for that moment or those kinds of things can happen. I think to see how those things that we perceive sometimes as being so small really built up for these women in these stories and really had these really powerful clinical implications downstream.
That was what surprised me, I think. One story that stood out to me since I read it. This was in one of Cheryl Beck’s studies that I was reading and it was a story where they were using a vacuum do a vacuum extraction and the vacuum came off the baby’s head and somebody in the room said it came off and the mother heard the pop and she felt the pop and she’d perceived that her baby’s head had come off.
Oh my gosh.
That’s like it’s a nothing line to the provider who’s they’re just talking amongst themselves and about the situation but I can’t imagine being the person in the bed who has no other information then pop it came off and I mean could see the trauma building there that would not be easy to get over. I think so much of it is just that checking ourselves and that any line set in the room is to the patient too, that we need to remember that patient is an audience to anything we say. Whether it’s a joke or comment about our weekend or just a comment about how delivery is going. They can hear it all.
Yeah, I am feeling a little gut punched and shattered over here.
Yeah, I think this is reminds me of a lot of the conversations that we’ve been having already is that we really don’t know when the learner a divergent either because they don’t tell us or because they themselves don’t know. We estimate that one in five people is neurodivergent. When we look at the fact that in this study five new and two of the five that’s 40% of the people who knew didn’t disclose it, that’s a lot. I know that’s a small number but that says a lot. Previous research does show that autistic people are afraid of being seen as on parents if they disclose this information. Stigma and discrimination are alive and well. I think really creating that nonjudgmental safe space for people to tell us this information, ensuring them that they will be safe in sharing this with us is really important. I think the other thing to consider is universal screening for these kinds of things.
Particularly because we know that we may not be picking up on these outward signs that we need to be asking people if they selfidentify, whether they selfidentify or they formally diagnose or whatever that picture looks like. I think it’s bigger than just autism. It’s really getting at how we can tailor their birth experience to their preferences and to their needs from a sensory perspective, from an emotional perspective, from a physical perspective, but really asking those questions and getting that information. I also think about, I think the key takeaways here are really they’re pretty obvious, I think be nonjudgmental and listen. Ask people before you touch them, ask people what their preferences are and then do that. If you can’t for some reason explain why you can’t do that to them. I think most of all is believe people. Like when they’re telling us something, listen.
Those sound like the basics of care for anybody, but I think those are the kind of little things that actually can make a really significant clinical impact.
Listen, but also inform. If you just do those things, your patients will be much happier and less traumatized. You kind of have those key takeaways that we just went over. Do you want to share a main message from your research that you want providers to take away from?
Yeah, I actually thinking about this. I think my main takeaway that I want people to take is not actually even from this study, but it’s the idea that in general, I think we need to shift the way that we think about autism. I think we need to get away from this really stereotype picture of autism that we kind of are trained to recognize and we kind of ignore anything outside of that. I think realizing that autism often doesn’t look the way we think it does. Something that always stands out to me is like I like to think of an example of how we came to understand heart attacks. We first were looking at heart attacks, were looking at things like chest pain and left arm pain and were really looking at very stereotypical male symptoms of a heart attack. We came to realize all these other things like GI upset and things that women are more likely to experience when they’re having a heart attack.
I think we’re going through and I kind of hope we’re going through something similar in autism where we’ve really stereotyped a picture and we’ve missed a huge piece of it. I think broadening our understanding opens up people to really understand themselves better and I think it helps us understand our patients better. I think the other key thing is really just trusting our patients as experts on their own bodies and taking their concerns seriously. Be the difference between patients accepting treatment and refusing treatment. Whether we take the time to listen and explain and validate and .
To the whole time you’re talking and this may be fresh in my mind. I was just working on the transcripts this morning. Traumainformed care and so much of what you’re saying consent or lack of consent for every contact? If you had consent for every contact, if you believe what the birthing person was saying, all these central tenants of trauma formed care, how much that could have changed these experiences and how that is just really a lens that we should be using for everyone as well. I mean, I’m thinking about my own experience, my own Csection. I mean, there was stuff you were saying, I was like, yes, that is how that felt. It’s terrifying when you go into those emerged situations to have no control and yes to all of that.
Great, thank you. So I know Dr. Hauser already talked about this a bit on your previous podcast, but really when we’re thinking about universal design for healthcare, we’re thinking about having no default. Instead of there being that we normally do it this way, but if you need it that way, we can do it that way, instead you say we can do it this way or that way, which would you prefer? Treating every situation with those options whenever they’re available and trying to really identify the times that we have a default but don’t recognize that we have a default. I’m thinking about my own birth experiences. I would not have wanted somebody to come in and ask me every time they were touch me. I didn’t want to communicate. I wanted to block out everything and you can do whatever you want to my body. I don’t want to talk to you right now.
A lot of other people have the exact opposite experience where please don’t touch me. You need to ask that. That’s just how it is. I think coming in and saying, we can do it this way or we can do it that way, which do you prefer? With every step in that process can be a really helpful approach. Another one that comes to mind is something like looking at different birthing positions. My perception is that we have kind of the standard and then if you request something else, you can do something else. Universal design for healthcare would be to take away the standard and just ask people, what is your preferred birthing position? Instead of do you have a different position? You like so kind of the idea of taking away that special request and making it just be the norm that people can choose what option meets their needs best.
I think this can sound really burdensome when you think about practically implementing it when you’re busy enough as you are. I think it’s time for us to start getting creative about the ways that we ask these questions and gather this information and then share this information really broadly with anybody who’s going to be interacting with that patient. Like having a standardized form that asks about these kinds of preferences and then posting that in the patient’s room where anybody who’s walking in can quickly scan and see these are the preferences. This is how to work with this patient within their needs at this time. Obviously, being in the hospital, giving birth, things are stressful enough without having strangers coming in with no idea how you prefer to interact.
That’s going to get me on the bandwagon. I feel like we haven’t talked about this in a long time, but the birth plan and so a lot of that, I think like the traditional birth plan is like things like, I want an epidural or I don’t, or I want maybe birthing positions, but I want the cord clamped or I want it to wait 1 minute or to stop beating. We kind of think about those things. I think that is a powerful thing to be able to help patients put those kind of things, like your preferred birthing position, lighting, how do you want me to talk to you? And that’s a birth plan. We as clinicians have this kind of nasty stigma around people with a birth plan. I’m just going to say that we need to be open minded about this birth plan. We need to share the birth plan, we need to get everybody on the team with the birth plan.
Well, and I think as nurses, too often we take our own knowledge for granted and we kind of make these shortcuts where we say, oh, you’re a new mom, there’s no way you’re progressing that fast, those types of things. I know when you had talked about not feeling like they had enough education about what was happening, the only reason I had the education of what was happening was, one, I was a nurse, but two, I had spent some time doing labor and delivery, nursing, and so I, too was taking things for granted. With my third one, he was having late Dcells. They’re using that language like there’s some late declaration getting concerned. My husband doesn’t know what late D cells mean and what that could indicate. I, as the person in labor, is explaining to my husband what late Dcells mean and what could be causing that.
I think a lot of times as nurses, we do need to check ourselves. Although we take this information for granted, really, this is not stuff that the average individual just knows.
That was actually what I was we’re like on the same wavelength. Here my question to you. I don’t work in labor and delivery. When I think about a birth plan, I think about like, somebody wrote a novel and they’re bringing it in and handing it to you at a time when they need care right now. You’re like, well, great, I’ll sit down and read this and then care. I’m thinking this again, not my area, but I’m picturing if we could have like a form that’s pretty quick of like boxes, that it’s not just that it’s quick to fill out, it’s that it’s quick to read, that you walk in the room and you can see these preferences real clear and then you’re done with it. That would be more helpful than what I thought about as a birth plan, but I might just not know what a regular birth plan looks like.
It’s been a long time and I never worked delivery. I worked on the Ambulatory side. I would often explain to patients, like, what to put into a birth plan and then I would hear from the LND nurses, oh, that’s not what we want in a birth plan. The patient would bring in a birth plan and then nobody would like it. So I do appreciate that too. It is for the patient, but it needs to be feasible for the clinicians to be able to act on it just partly like making it somewhat succinct and that kind of thing. And I think it’s like that’s. The other thing is, I don’t think there’s like a universal design of a birth plan. Like everybody’s just kind of putting in their own things. Like, you can look up online, but you could also write a novel, you.
Could have a checklist.
Everybody kind of does a different thing or they don’t have one at all. Let’s talk to maybe our listeners who don’t identify as clinicians, especially maybe we have some folks who are neurodivergent or are autistic. What would you like to share with those folks about giving birth?
Glad to have this question because I know a lot of this has focused on really negative experiences. The last thing that I would want this study to do would be to scare neurodivergent folks away from having kids who are thinking about having kids. I really appreciate the opportunity to highlight some of the things that folks did find helpful that they were able to do to self advocate or self protect from some of these negative experiences. I think, first of all, obviously communication has been a major theme here. Communicating with the healthcare team is really critical and having that trusting relationship, if at all possible, ideally you can share with your team that you are autistic or that you think you’re autistic. Keeping in mind that, providers often have a very limited understanding of what autism is. Just saying that I think I’m autistic or I’m autistic is probably not going to be enough to clue them into what your needs really are going to be during that childbirth experience or that pregnancy experience, breast or chest feeding, whatever that might be.
Really looking at asking and offering that information about how you tend to express pain, what you tend to experience when you become overwhelmed, how somebody around you might be able to tell if you’re becoming really overwhelmed. You might share, what you find most and least helpful when you do become overwhelmed, what is a good approach and what is really not helpful. If they were to do that. The more you can talk through these things starting early on in your care, I would think the better position you’re going to be in with that provider when the time comes to give birth. Another thing that I would highly recommend is that the written birth plan but not only that, I think those written information and those early conversations with a provider can be really helpful. Things change and things happen and things can be very unexpected and kind of having that in your mind that things might not go according to the plan.
Also having a person in the room that you trust. That knows your preferences. That you’ve talked through these situations with. Who can advocate in the moment on a blink of a dime for a change if you’re not in a position where you can communicate those things anymore. Whether that’s a partner or a friend or a parent, a doula might be a really great person to bring into your team so that they can be really clear on, can you please remind any time anybody walks in the room, can you please remind them to ask before touching me? You’ve handed that task off to somebody else who can take that on while you are trying to go about the very big task of having a baby. The other thing that came out of this is that a lot of people went through their birth experiences and then had questions about the birth and the way things had gone and really never got a resolution.
They never found out why something happened or what the reason was that suddenly they had a Csection and they weren’t planning on that. If you have those questions at the end of the experience, ask them in your immediately postpartum, ask them in your six week follow up, whatever that looks like. That narrative becomes part of how you remember that birth. Having the answers and having those gaps filled in can be really therapeutic, whether they’re the answers you wanted to hear or not. Having those answers, I think, could be really beneficial if there are gaps in your understanding of the story.
While speaking of communication and things, we say, how do or how can your findings relate to how clinicians communicate with folks on the autism spectrum?
A colleague of mine is a midwife, and I had a labor and delivery nurse who actually was a co worker of mine, and she delivered one of my babies with me and then another colleague who’s a midwife, and they reviewed these findings with me and gave me a lot of suggestions, and they were enormously helpful. Shout out to Terry Cahill Griffin and to Janelle Michelson. Thank you so much. One of the things that midwife had suggested was that debriefing every time within 24 hours, somebody should be in there walking through that birth story for you. Really helping solidify what you just experienced and shaping that narrative in the best way it can be shaped in that formative time as you’re really telling how many times you tell that birth story in the first 48 hours after you have a baby. The more you can have that birth story, really in reality and in a way that’s healthy and that supportive, I think the better off going to.
Be, okay, now I’m seeing like, we need like birth debriefing, like a birth debriefing after the birth at some point, because I think that would be super powerful for everyone. I think everyone has of trauma. I mean, maybe not trauma, but, it’s a painful process. It’s not always fun and lovely to experience birth. Having of that debriefing, I think would be really powerful.
I was going to say, doesn’t this also sound a lot like the exact same things for maternal mortality or really almost every other episode that we talk about?
OOH, that’s a good question. So, to be honest, this is like my research or brain thinking, but that’s where I go before I even go clinical. I think a lot of research interview questions tend to be very therapeutic, but even asking them, tell me your birth story, I’d love to hear how you interpreted that experience we just went through and really having them tell you how they experienced it. I think that will help them identify what questions they do have, or it can help you identify areas where you hear them say something and think, oh boy, that was not at all the way that I saw that, or I experienced that and really helping to clarify any areas in their story that maybe you do have a different interpretation of. I would think, really, that open ended approach of getting people to share their story with you and then having that be the opportunity to be supportive in how they’re forming that narrative.
Yeah, thank you for that.
Yes to all of that. This, I think, also segues nicely into our next question, and we have thrown this word out there but can you tell us about universal design for healthcare and how this would improve birthing experiences for folks in the autism spectrum?
This is another great question, and the sad answer is that there aren’t a whole lot of places out there that have a lot of resources specifically for supporting autistic people in childbirth, at least that I’m aware of. The good news is there is a lot more research coming out on this lately on autistic experiences of pregnancy, of childbirth, of postpartum experiences, breasts and chest feeding, early parenting. We’re seeing more and more of these pop up just in the last year or two. Hopefully there are going to be some better resources on the horizon. But in the meantime, there are some. Great clinical resources to be used by any healthcare provider who is working with divergent folks and specifically autistic folks that I think could be easily applied to a burning setting. So, for example, Aspire is A. As, P-I-R-E is the Academic Autistic Spectrum Partnership in Research and Education.
They’ve developed a really great toolkit for providers who are working with autistic patients. Just generally being more informed about neurodivergence, I think is a really great first step for clinicians. There are also great selfadvocacy groups out there like the Autistic Self Advocacy Network that have resources on their website to learn more about autism and neurodivergence in general. Of course, I’ve got to put in another blog for Dr. Mel Hauser. She’s doing amazing things that all brains belong. I’m constantly learning from her. She’s got a lot of great videos, training videos and other resources on her website that are covering ways to be more accessible to implement that universal design for healthcare and really understanding the diversity of human brains in general. That would be another resource I would highly recommend.
Yeah, thanks for that. I think that’s a great question. Where can listeners go to learn more about supporting birthing people who are on the autism spectrum?
I really want to thank both of you for taking on this topic and for talking to Dr. Hauser. Talking to me about I think this is just a really underexplored area that we’re one in five. We’re seeing a lot of patients and I think the more we can understand neurological differences, the better care is going to be across the board. The other thing I just wanted to acknowledge is my coresearchers on this study hannah Shirley, Emma Bowden, Hannah Scheider, and Alexis Estroni, these brilliant women were undergraduate students working with me on this work, and they are now out in the world being amazing registered nurses. One of them is starting a PhD program in a couple of weeks. Their time and their dedication to this work was incredible and just really grateful to have had the chance to work with all of them. And just thank you, both of you.
This was a great conversation.
I was just going to say the whole time you were talking to me right before you start talking about to say it sounds like we need a redesign of the birth plan. Maybe that’s a new movement we need to start is redesigning the birth plan.
Dr. Lewis, I would personally like to thank you so much for your time and commitment to advancing sexual and reproductive healthcare through communication. Do you have any last thoughts you would like to add before we end?
No, I’m glad you found me. Thank you.
I also want to make this clear, too. When a clinician comes in and says, do you have any questions? That does not count as debriefing. Throw that out there as well.
Well, thank you this is great.
Yes. We want to thank you too, because we did some super creeping to get you on the podcast. We first saw that you had won the award on, I think, Twitter, and I screenshot it and sent to Stephanie and said, we need to get her on the podcast. I tried to, I think, DM you but couldn’t do that. I just Googled you and found your academic email. Thanks for not being frightened off by our creeping skills. We absolutely thank you for this wonderful episode.
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