Abstract
Background:
Autism is a neurodevelopmental condition affecting communication and social interaction. Much of the research regarding childbirth and motherhood is focused on non-autistic women. Autistic mothers may experience challenges communicating their needs to health care professionals and find aspects of the hospital environment distressing, indicating a need for more informed practice.
Objective:
To describe the experiences of autistic women bonding with their newborns after delivery in an acute care setting.
Design:
The study used a qualitative interpretative description design with data analysis using the method described by Knafl and Webster. The study explored the women’s childbirth experiences in the early postpartum period.
Method:
Interviews were conducted using a semi-structured interview guide. The women were interviewed in a setting of their choosing and included in person meetings, meetings over Skype, over the telephone, or via Facebook messenger. Twenty-four women ages 29–65 years participated in the study. The women were from the United States, the United Kingdom, and Australia. All women gave birth to a healthy term newborn in an acute care setting.
Results:
Three major themes emerged from the data: having difficulty communicating, feeling stressed in an uncertain environment, and being an autistic mother.
Conclusion:
The autistic mothers in the study expressed love and concern for their babies. Some women described needing more time to recover physically and emotionally before assuming care of the newborn. The stress of childbirth left them exhausted and the demands of caring for a newborn could be overwhelming for some women. Miscommunication during labor affected some of the women’s ability to trust the nurses caring for them and, in two cases, left the women feeling judged as mothers.
To date, there are approximately 5,437,988 autistic adults in the United States. 1 Boys are diagnosed with autism more commonly than girls with the current ratio of male to female at nearly 3:1. 2 Currently, there are 700,000 autistic adults and children in the United Kingdom, with the ratio of male to female 3:1 3 and 205,200 autistic adults and children in Australia with the males 3.5 times more likely to be autistic. 4 Of those, a portion includes women of childbearing age who may have or plan to seek pregnancy.
While an abundant amount of research exists for non-autistic women concerning childbirth and motherhood, fewer studies investigate autistic women’s experiences during these transitory events. Little research has investigated how health care workers’ knowledge of autism influences perinatal care concerning autistic women. Autism is a neurodevelopmental condition that affects social interaction and communication. It can also affect how the brain interprets sensory stimuli triggering heightened responses in autistic individuals to various types of sensory stimuli (e.g. bright lights, sounds, smells). 5 Many individuals also have co-occurring conditions such as anxiety, depression, bipolar disorder, and attention-deficit hyperactivity disorder that may affect daily functioning. 6 These and other factors may pose critical issues in how autistic women receive perinatal care.
Objective
Due to the growing number of autistic children, teens, and adults who at some point may seek to become a parent, there is an ever-increasing need for health care professionals to become knowledgeable about autistic women to provide necessary accommodations and improve the overall experience for these women. To help fill the gap and provide adequate social and health care support for these women, this article aims to describe the experiences of autistic women bonding with their newborns after delivery in an acute care setting. These descriptions of the bonding behaviors present information about the experience which may help create individualized interventions to assist new autistic mothers’ bond with their newborns.
Furthermore, this gap which exists in the literature becomes even more concerning as many autistic individuals feel a need to mask or conceal aspects of their autism when interacting in various social situations including interactions with health care professionals.7,8 Masking may be a conscious or unconscious effort to hide specific autistic traits in order to avoid stigmatization, stereotypes, or other negative reactions, in an attempt to normalize or comply with others’ expectations. 8 Engaging in masking may heighten anxiety or hide the degree of difficulty an autistic individual faces in their daily life which may lead to a lack of social support. 9 In the health care setting, masking could prevent an autistic woman from receiving the needed help after birth when bonding with their newborns.
Background
Bonding, the development of an emotional connection between the mother and infant is an important part of the transition to motherhood. 10 Behaviors that encourage bonding include skin-to-skin contact, holding onto the infant’s finger, breastfeeding, and eye contact between mother and infant. The emotional attachment that is formed during bonding helps an infant feel secure, protected, and loved, and forms a trusting relationship with the mother. 10
During the postpartum period, a new mother focuses on recovery from physical and behavioral changes during this life-changing event. Of those changes, adaptation, bonding, and attachment are key components of the postpartum transitional period while getting acquainted with their newborn. 11 As a new mother bonds with her baby, she learns about her baby’s cues, needs, and best comfort measures. During this important period, health care professionals focus care on helping mothers recover from childbirth, as well as transition to a new role of motherhood.
Maternal fetal attachment
Bonding begins during pregnancy and the degree of attachment prenatally may be linked to bonding in the postpartum period.12,13 In a study of 80 women, researchers noted that mothers with higher levels of maternal fetal attachment (MFA) had less difficulties bonding during the postpartum period. 12 Early child development can also be affected by maternal bonding. Alhusen et al. 12 found that the children of mother’s reporting low MFA were more likely to experience developmental delays than children whose mother’s reported high MFA. Similar findings were also noted in a systematic review investigating the role of prenatal and postnatal bonding on infant development which found an association between maternal bonding and infant developmental outcomes such as neonatal and child development, motor and language development, and executive function, with more optimal infant outcomes in mothers with higher levels of bonding. 14 Because of bonding’s significant role in a newborn’s wellbeing, supporting maternal–newborn bonding during the postpartum period is a priority following childbirth. During this period, health care professionals implement measures to promote maternal–newborn bonding. Knowledge about all the factors and influences, including autism that may affect bonding, is essential to ensure proper support to new mothers during this time.
There is limited research regarding the postpartum experiences of autistic women. 15 Current studies revealed that like non-autistic women, autistic women found motherhood rewarding;16,17 however, some studies report that autistic women felt judged as mothers and had difficulty asking for help.17,18 These feelings of being judged and difficulties in communicating theirs need for help are concerning. The effect that these situations have on maternal–newborn bonding during the postpartum period is unclear. It seems to suggest that health care workers need to better understand the autistic mothers’ perspective during childbirth.17,18 This study focuses on a critical period in maternal–newborn bonding, the early postpartum period. Identifying potential situations that could negatively impact bonding may result in strategies that better support maternal–newborn bonding during the postpartum period.
Stress and depression
In addition to MFA, factors such as stress and depression may also negatively affect mother–infant bonding.19,20 Moehler 21 found that some mothers with depressive symptoms in the postnatal period had “negative bonding patterns” staring early in the postpartum period and persisting beyond a year to 14 months. Postpartum depression (PPD) is a common complication following childbirth affecting 17.22% of women worldwide and can affect infant development. 22 Risk factors for PPD include a history of mood or anxiety conditions, untreated prenatal anxiety, or depression. 23 Regardless of history, all women should be screened for PPD in the postpartum period. For autistic women, the increased likelihood of co-occurring mental health conditions, 16 sensory sensitivities, and communication differences coupled with health care professionals’ lack of understanding of autism may increase an autistic women’s risk for PPD. 14
Research regarding autistic women’s perinatal mental health is also limited. Hampton et al. 15 investigated perinatal wellbeing in autistic women and found the autistic women reported higher depression and anxiety scores in comparison to the non-autistic mothers in the study. Similar findings were noted by Pohl et al. 16 in their study; 60% of autistic women reported experiencing PPD compared to 45% of non-autistic women. The researchers noted the autistic women’s reports of depression were not validated or explored in greater detail. While more research into autistic women’s perinatal mental health is needed, health care professionals should acknowledge added concerns for the autistic women and consider these factors when screening for PPD.16,17
Autism and communication
The core features of autism may present challenges for some women throughout childbirth. One of the most prominent challenges involves communication and social interaction among health care professionals.17,18 Many autistic women report difficulty with social interactions throughout childbirth. Specifically, differences in communication style, being blunt or to the point, appearing aloof, and needing more time to process information may lead to misinterpretations by the nurses caring for the autistic woman throughout childbirth.7,10 The stress of labor intensified communication challenges for many autistic women, even those who reported little difficulty interacting with others.17,18 Communication challenges often included conditions where it was hard for some autistic women to find the right words to describe their emotional and physical sensations. Sometimes these misinterpretations resulted in situations where the autistic woman did not trust the nurses and failed to communicate their feelings and needs, potentially preventing them from receiving needed care. 18
Pohl et al. 16 also noted that some autistic women felt they could not ask for the help they needed. Furthermore, difficulty with social interactions could lead to concerns about being judged as a mother. 18 Feelings of being judged were also noted by Pohl and Gardner.16,17 How these communication challenges impacted bonding is unclear. Nevertheless, communication difficulties may create a barrier that prevents an autistic woman from receiving appropriate postpartum care and education. For example, in the study by Gardner et al., 17 one woman believed the nurse interpreted her “aloofness” as being comfortable in her caring for her newborn. As a result, the woman reported limited interactions with the nurse during the postpartum stay, potentially increasing the risk for complications and leaving her with little education before discharge.
The demands of motherhood
The transition to motherhood may present challenges for any woman. For an autistic woman, this process may have added concerns. In a study comparing the experiences of motherhood between autistic women and women without autism, researchers noted that some autistic women found it difficult to manage the many demands of parenting and were more likely to find motherhood an isolating experience and report difficulties coping with motherhood. 16 Trouble coping with the demands of parenting was a theme in two other studies on the postnatal experiences of autistic women. Hampton et al., 24 in a qualitative study exploring the experiences of autistic mothers, found that along with difficulties coping with sleep deprivation, autistic mothers reported challenges with executive functioning and adapting to life with a baby whose schedule is unpredictable. Litchman et al., 25 in their review of blogs, also noted difficulties managing the responsibilities of parenthood. One autistic woman found that caring for a newborn who required 24-h care left her with no personal time, which resulted in more stress and hindered her coping ability. Hampton et al. 24 noted similar findings, an autistic woman in the study described feeling overwhelmed but unable to rest and recover due to the demands of caring for a baby. Despite these difficulties managing the demands of motherhood, many autistic women found motherhood rewarding. 16 In their study, 85% of the autistic mothers reported finding motherhood rewarding. 16
The current research highlights several areas that are necessary for health care professionals to consider when planning for care after childbirth. Before health care professionals can ascertain the needs of autistic mothers regarding bonding, they first need to be aware of these challenges in communication and social interaction so that the interventions they provide are desired and appropriate. Further postpartum education often focuses on the transition to motherhood and maternal–newborn bonding. Considering how motherhood may be different for autistic women may help individualize this information and provide specific strategies to help autistic mothers bond and transition to motherhood.
Breastfeeding
Initiating breastfeeding can be challenging for many women. For autistic women, there are additional challenges. These challenges may include societal stigma, a lack of understanding of autism by health care professionals, and unreceptiveness to the needs of autistic women. 26 Health care professionals may not understand the sensory needs of autistic individuals, differences in communication, and how autistic individuals experience pain and communicate pain to others. 26 In addition to the stress of labor, some autistic women may find the hospital environment uncomfortable. The many sensory stimuli, including different smells, sounds, touch, and lighting required to provide comprehensive care that can be unpleasant or distressing for some autistic women. Nurses and other health care professionals may not fully understand the woman’s responses or behaviors.17,18
In their systematic review of autistic women’s experiences breastfeeding, Grant et al. 26 found that maternity care was not inclusive of the autistic women. For example, some autistic women felt no one was listening to them, while other women felt their sensory needs were ignored. In addition, the health care professionals’ lack of understanding of autistic communication resulted in misunderstandings that resulted in assumptions that affected support that was offered. Misunderstandings also occurred with written information. Grant et al. 26 found that written materials with great amount of details were overwhelming to autistic women; conversely, it was anxiety provoking if too little written information was provided. This is an important finding with relevance for developing patient education materials for autistic individuals.
Researchers have mentioned that even though autistic women reported sensitivities to touch during the postpartum period, many choose to breastfeed.16,17 Often the women who chose to breastfeed possessed good knowledge of breastfeeding and were highly motivated. Although highly motivated and knowledgeable about breastfeeding, some autistic women may find it difficult to apply that knowledge during infant. 26 Grant et al. 26 noted positive aspects of breastfeeding to include beneficial in soothing a fussy baby, assisting with bonding, safe for the baby, and positively influenced their identify as a mother. There were also breastfeeding experiences that were challenging for autistic mothers. For example, latching a baby to the breast could be painful due to an autistic woman’s hypersensitivity to touch.
Autistic mothers have also noted feelings of overstimulation when breastfeeding. In one study, 27 these feelings of overstimulation from breastfeeding led to discomfort and significantly increased irritability. Overstimulation may occur from an array of environmental stimuli including visual, auditory, smell, taste, and/or touch; however, in this particular study with 23 autistic mothers, touch was the most prevalent stimulus for a “sensory overload.” Specific breastfeeding sensations that were distressing included an infant touch during latching and suckling, touch by a health care professional, milk letdown, and baby sounds and crying. Furthermore, mothers reported that being touched by health care professionals was distressing and the women expressed a need to be asked before being touched.
Despite discomfort with the sensations associated with breastfeeding, many women in multiple studies (including Wilson and Andrassy 27 and Grant et al. 26 ) have identified strategies that autistic women use to cope and ameliorate the distressing sensory stimulation and breastfeed. These strategies included breastfeeding in a darkened room or using a nipple shield as a boundary between the baby and their breast, or having their partner hold the infant during feeding. They also noted that setting short-term goals for breastfeeding may be beneficial. Gardner et al. 17 recommended that nurses adopt breastfeeding assistance to avoid touch during instruction and rely on verbal coaching while assisting new autistic mothers to breastfeed their newborns.
Knowledge about autism among health care workers
Knowledge about autism differs among health care professionals. In a systematic review of 35 studies, researchers found that knowledge about autism varied among all types of health care professionals, with culture influencing some of those professionals’ beliefs surrounding autism. 28 The researchers noted that the health care professionals in the studies rated their knowledge and perceived self-efficacy working with autistic individuals as low to moderate. Variations in these ratings occur among physicians based on their area of practice and among types of professions, for example, nurses and psychologists suggesting that autism education is still needed. In the postpartum period, a lack of knowledge and awareness among health care professionals could inhibit their ability to inquire about an autistic woman’s sensory and communication needs which potentially may affect how education on newborn care, breastfeeding, and bonding is delivered and received. Patient education on self and infant care is an essential part of postpartum care; being able to inquire about the autistic women’s needs, both physical and emotional, is important in facilitating bonding and the new mother’s transition to motherhood.
Furthermore, the lack of knowledge and education among health care providers on the health care needs of autistic women who seek and become parents creates risks for a mother and newborn. PPD effects many women in the postpartum period. Autistic women especially those with a co-occurring mental health condition, such as depression may be at risk for developing PPD. 16 Having knowledge of the communication differences associated with autism may improve the health care professional’s ability to screen for PPD more effectively. As a result, this article aims to add to the small body of literature on adult autistic women who become mothers and the successes and challenges of motherhood they experience. Relevant clinical questions concerning maternal–infant bonding among autistic women have emerged but remain largely unexplored. 24 The overall aim of this research was to describe the experiences of autistic women during childbirth in an acute care setting. Specifically, this article aims to describe autistic mothers’ early postpartum experiences to better understand the needs of autistic women during childbirth.
Method
Following approval by the Widener University, Institutional Review Board (IRB), approval number 124-16, this qualitative study was conducted using an Interpretive Description (ID) design. An interpretative description focuses on clinical practice questions to establish known gaps in knowledge. 29 Interpretative description was utilized to determine what was discovered about the postpartum period, what patterns emerged, and what was the meaning of those patterns. These meanings aim to understand clinical interventions and clinical practice applications. A semi-structured interview guide was used to facilitate the interviews and included broad open-ended questions since at the time of data collection, little information was known about the birth experiences of autistic women. The researcher, an experienced maternal–newborn nurse, and the mother of three autistic adult children developed the interview guide. The researcher did not consult with the autistic community during the development of the guide given her personal knowledge as an autism parent. However, the researcher consulted with an experienced researcher and experienced perinatal nurse practitioner who previously researched the birth experiences of autistic women in childbirth. All the authors of this article are experienced perinatal nurses.
Sample and setting
The study utilized a purposive sampling of self-reported autistic women. The inclusion criteria included autistic women who had an uncomplicated birth of a term infant, ability to comprehend the information of the consent form, ability to participate in an interview and gave birth vaginally or by Cesarean section in an acute care setting. There were several factors that excluded a woman from participation in the study. These factors included complications during birth, complications in the newborn, a newborn being placed for adoption, women who had a legal guardian, and women who did not demonstrate an understanding of the information on the consent form. Twenty-four participants (N = 24) were recruited for the study using two social media sites facilitated by members of the autism community and a site organized by parents and autistic individuals. Potential participants contacted the researcher directly by telephone or email. Detailed sociodemographic characteristics are presented in Table 1.
Sociodemographic characteristics of participants (N = 24).
Data collection
After obtaining informed written consent, the interviews were conducted either in person, by Skype, or by Facebook messenger according to the women’s preference and geographic location. Twenty-one women were interviewed by telephone based on their location outside the researcher’s state of Pennsylvania, in the United States (AL, AZ, FL, GA, IN, MO, MN, NE, NJ, OH, RI, and TX) and country (Australia, the United Kingdom). The sole local woman was interviewed in person. One woman was interviewed through a Skype© video call. Two women shared that they experienced anxiety with social interactions and requested that the interview be conducted by writing. Facebook© messenger facilitated this written format enabling the interview to be conducted synchronously. The interviews were scheduled at a time agreeable to the women and researcher. The settings were quiet, private, and free from distractions. Each participant was assigned a pseudonym before the interview. 18
Interviews, which were audio-recorded and professionally transcribed, began with the general question, “Tell me about your experiences in the hospital when you had your baby.” The transcription of the Facebook© messenger chats were also used in the data analysis. Using a semi-structured interview guide and elaboration on the participants’ statements helped expand the birth experience descriptions. The duration of the interviews was approximately 1 h. In addition to the interview guide, the researcher recorded field notes throughout the interview. To determine if the researcher accurately recorded the interviews a summary of the interview was provided at the end of each interview. The summary included the participant’s answers to the questions and the researcher’s initial impressions. Examples of interview questions are presented in Table 2. Data collection continued until saturation was reached.
Examples of interview questions.
Data analyses
Data were analyzed using Knafl and Webster’s 30 method to manage and analyze descriptive narrative data. The initial process involved multiple reviews of the transcripts and audio recordings of the interviews before beginning the process of coding. Simultaneously listening to these tapes while reviewing the transcripts confirmed the transcripts’ accuracy. Several topics emerged from the data and were organized into categories and placed on a summary grid by the primary researcher. From these topics, the major themes and sub-themes emerged. The primary researcher alternated between data collection periods and coding throughout the data collection. This process permitted the researcher to ask participants questions that reflected themes in the study’s data. To increase the trustworthiness of the data, the researcher consulted with fellow researchers throughout the coding process, sharing the data, preliminary themes, and audit trail. The final themes were identified in collaboration with fellow researchers following multiple discussions and analysis of the data. The audit trail is presented in Table 3. The researcher kept a reflexive journal to record connections, similarities, and variations in the data.
Audit trail “being an autistic mother.”
Results
Three major themes emerged from the overall study: (1) having difficulty communicating, (2) feeling stressed in an uncertain environment, and (3) being an autistic mother. 18 This article focuses on the last theme, being an autistic mother, and the corresponding sub-themes of breastfeeding and mother–baby bonding experiences.
Being an autistic mother
Bonding for some women was immediate. At birth, they felt instant love for their baby. This was not true for all women in the study, while expressing love for their baby and caring for them these women spoke of a need to get to know their babies before fully bonding with them. To prepare for motherhood, many women in this study had consulted books and viewed videos during the prenatal period. Women who gave birth previously relied on their past experiences with childbirth and bonding. Women with older children felt more comfortable caring for their baby. Knowing what to expect after the birth gave the women confidence when caring for their baby. The sub-theme mother–baby bonding describes the women’s experiences bonding in the immediate postpartum period. This theme explores the women’s emotions, bonding, and situations that were stressful. All the women in the study breastfed their babies. The sub-theme choosing to breastfeed describes the women’s experiences breastfeeding, challenges they faced, and assistance that was provided by the health care professionals.
Breastfeeding
Many women breastfed despite finding it uncomfortable, inconvenient, or experiencing sensitivities to touch because they believed that breastfeeding was best for their baby. The demands of frequent feedings could also be challenging for some women. Two women in the study, Iris and Rachel, found breastfeeding helped them feel calmer than usual. Rachel believed the calming effects were due to the oxytocin released during breastfeeding: And to be honest, I felt really happy when I was (breastfeeding). And less anxious, yeah, the world just could go away.
Despite initially having difficulty latching her son to the breast, Iris breastfed him for an extended period. Overcoming those initial challenges with breastfeeding gave her confidence and a “more positive image” of herself as a mother.
Iris received some assistance with breastfeeding from the nurses in the maternity unit. Several of the women described nursing interventions that helped support breastfeeding. Sometimes, the nurses facilitated breastfeeding by allowing immediate access to the newborn in the delivery room or providing time alone so the new mother could breastfeed. Georgia remembered the nurses being very “accommodating” with her desire to start breastfeeding as early as possible. Mary appreciated the assistance with breastfeeding. She recalled one experience after a long labor. The nurse assisting her was caring and had a gentle approach that was comforting after labor.
Some women such as Donna were more comfortable breastfeeding in private and found interruptions from staff while feeding their babies stressful. Donna recalled when the lactation consultant was in her room helping her latch the baby at the same time when a social worker arrived to evaluate her. She was just learning to breastfeed and in bed with her chest exposed, trying to get her son to latch to her breast. This interruption made the efforts to feed her son more complicated, and Donna believed that this adversely affected her milk supply.
Winnie expressed the desire for assistance with breastfeeding using direct pressure since she found light touch unbearable. In addition, Winnie was upset when a nurse helping her with breastfeeding lifted her shirt to assess the latch without asking her permission. This situation occurred often, and Winnie found it difficult to express to the nurse how badly she felt when anyone touched her without asking for permission. One nurse did assist Winnie in a manner she needed by avoiding touch, relying on gestures, and pointing to help with breastfeeding.
Mother–baby bonding experiences
Many women were eager to hold their babies immediately after birth. They described being happy and excited about the delivery. For many, bonding happened quickly. Carol recalled the first moments after her child’s birth: Yeah, I’ve never forgotten that moment when they first laid him on there, and they told me to touch the palm of his hand, and I remember looking at him, thinking, wow.
Some women chose not to hold their babies immediately after birth. Sometimes the need to postpone bonding resulted from the effects of a long, arduous labor or cesarean birth that left them needing to recover before breastfeeding or holding their newborn.
For some women, exhaustion post-birth lingered throughout their hospitalization. This need to recover persisted, and some women reported feeling too tired to care for or feed their baby. One woman recalled her first thoughts post-birth were of relief after 3 days of labor. At one point, she remembered feeling “upset” at her baby for crying and wanting to be fed. Another woman reported feeling “like a sensory overload.” The hospital where she gave birth had a “rooming-in” policy that required the baby to stay with her throughout the hospitalization. Caring for her newborn was difficult after a long, painful labor that left her feeling “out of it for the first 3 or 4 days.” She shared that she wished she had more help to care for her newborn.
Having a long or difficult labor did not affect the love these women had for their babies. Another woman explained: Nevertheless, in the hospital, I was so exhausted and so sick I really, I mean I remember I loved him totally, but I was really overwhelmed with how awful I felt and the care. It takes me a long time to recover from surgery.
Several women recalled needing time to get to know their babies before fully bonding. One woman explained that she requires time with anyone before bonding with them; her children were no exception. Although she described not bonding with them initially, she loved them, cared for them, and was “fiercely protective” of them; bonding took time. As Ellie cared for her children and could see their personalities, her connection to her children developed, and her love deepened: I mean I did love them, of course, don’t get me wrong, but the love deepened after I got to know them.
These feelings were similar for two other women who shared that they did not instantly feel connected to their babies after their births. Both women described having difficulty bonding with their babies and reported that the connection with their babies developed gradually over time. Once the women made that connection, their love for their babies deepened. Both Rachel and Beth were concerned about bonding with their babies after birth. They devised a plan to hold their newborns immediately after birth using the skin-to-skin approach and breastfeed to facilitate bonding.
Feeling stressed in an uncertain environment
Most of the women described difficulties with sensory stimuli during labor and childbirth; these experiences were described in the study’s second theme “feeling stressed in an uncertain environment.” While this theme does not address bonding directly, it describes the autistic women’s reactions to the hospital environment and provides valuable information for health care professionals to consider when caring for autistic women.
Many women in the study reported hypersensitivity to various sensory stimuli such as bright lighting in the labor rooms, sounds, the smell of cleaning supplies, the texture of the hospital sheets, and being touched. Reactions to this sensory input varied among the women and included physical, emotional, or both types of reaction to an offensive sensory stimulus. Some women found it stressful not being able to control their sensory environment. Being constantly surrounded by irritating sensory stimuli made some women feel vulnerable when they were in labor.
For some women, knowing the reason for the bright lights made it easier to cope with their hypersensitivity. Women who were sensitive to touch found it much easier when health care professionals warned them before touching them. A few women in the study included information about their sensory needs on their birth plan and used strategies such as ear plugs, essential oils, and masks to combat offending sensory stimuli.
Discussion
The purpose of this research was to describe the autistic women’s experiences during childbirth in the hopes of improving perinatal care for autistic women and facilitating the transition to motherhood. This study adds to the small body of research regarding the autistic women’s experiences bonding with their newborns. This study emphasized the experiences in the postpartum period while in an acute care setting. Focusing only on this important period revealed aspects in postpartum care for autistic women that need improvement and suggests interventions to facilitate care and foster the transition to motherhood. Findings from this study illustrate the continued need for health care professionals to understand the communication and sensory needs of autistic mothers. Previous studies have reported that some autistic women may feel judged as mothers. 16 This study describes the bonding experiences of autistic women, providing information that may increase health care professionals’ knowledge of autism and motherhood. Having an awareness of the autistic mothers’ early experiences with bonding may reduce implicit bias that affect how care is provided and contribute to autistic women’s feelings of being judged.
Being an autistic mother
The women in the study shared how they prepared for childbirth and breastfeeding and described situations that were stressful. This study illustrated how the autistic woman’s trust in the health care professionals caring for them may be affected when those professionals lack an understanding of the communication differences associated with autism. 18
The women in the study engaged in behaviors to bond with their newborns similar to non-autistic women. They held their newborns to their chest, stroked them, expressed concern for them, and cared for them throughout their hospitalization. However, some women voiced difficulty caring for a newborn while recovering from birth. One woman expressed the desire to have more help from the nurses with newborn care during her hospitalization.
The ability to care for newborns has also been addressed by Pohl et al., 16 and Hampton et al. 24 who further noted that autistic women found it hard to manage the multiple demands of parenting. In this study, none of the women described receiving any support services or described receiving information for services beyond those typically offered to all women. Many of the autistic women in the Pohl et al. 16 study believed they should have had the opportunity for more support services. The study did not specify what these services were or if the women felt services more tailored to their needs were desired. Some autistic women in the Hampton et al. 24 study reported receiving additional services such as an extra visit from a health care professional, but most of these additional support services were related to their co-occurring mental health conditions. This study did not specifically address support services or PPD, that was not the intent of the study. However, the findings of this study depicting the challenges in the postpartum period and difficulties that some of the women had communicating their needs to the health care professionals 18 highlights the need for better communication to screen for PPD, inquire about the women’s needs, and ascertain the need for support services.
Breastfeeding
Because of their research, most women in this study believed that breastfeeding was best for the baby and chose this feeding method. Similar to findings described by Gardner et al., 17 Pohl et al., 16 and Hampton et al. 24 even those women with hypersensitivity to touch and found breastfeeding difficult or disliked it continued nevertheless because of the health benefits for their newborns. In some women, aversion to touch was not only a concern with the newborn but also with the nurses during breastfeeding assistance. This finding is important to note because most women required assistance with initiating breastfeeding post-childbirth. Finding techniques to support breastfeeding that consider the autistic woman’s sensory and communication needs is essential in assisting with early breastfeeding. Autistic women who feel the health care professional is not listening to them may not ask for help, and as result, have difficulty breastfeeding that could be stressful or lead them to stop breastfeeding.
In addition, privacy during breastfeeding, especially when receiving support from the nurses, was essential for one woman. Interruptions from other health care professions created stress and left her feeling disrespected and exposed and inhibited her attempts to breastfeed. These findings suggest that some autistic women may prefer breastfeeding assistance that includes touchless methods. Providing privacy without interruptions may help autistic women better facilitate early breastfeeding. Two of the women in this study described feeling calmer while breastfeeding. Overcoming the challenges associated with breastfeeding boosted their confidence. While feelings of calmness were not noted in the Gardner et al. 17 study, one participant described being more sensitive to their newborn’s needs because of breastfeeding. The posterior pituitary releases the oxytocin hormone during breastfeeding. Oxytocin is known to have a calming effect by reducing the secretion of the adrenocorticotropic hormone cortisol. 31 Bloch et al. 32 addressed the potential role of oxytocin in facilitating bonding and improving social behavior as it is increased in the postpartum period. The finding noted in this study and the previous study suggests that more research is needed in this area.
Mother–baby bonding experiences
Bonding occurred quickly for some women, while for others, time was needed before fully feeling connected to their newborn. Gardner et al. 17 described similar feelings among autistic women who reported needing more time before becoming attached emotionally to their newborn. Kerrick and Henry 33 interviewed 82 first-time mothers without autism about their experiences in pregnancy, labor and birth, and early parenting. While most of the participants (56%) expressed feelings of love and connection immediately at birth, 31% described needing time to form a bond with their baby. This study’s findings noted that autistic women, like many women, might need more time with their newborns before fully becoming attached. Difficulty interpreting facial cues in their babies was noted in previous research. 17 The women in this study did not report similar difficulty interpreting their newborn’s facial cues. The autistic mothers in the Hampton et al. 24 study also reported no issues with difficulty interpreting their babies’ facial cues. The autistic mothers regarded their ability to read their babies cues as a strength. In addition, having heighten sensory awareness was viewed as an asset by some of autistic mothers enhancing their ability to read facial cues or anticipate their babies’ needs. 24 Two women in this study were concerned about bonding before giving birth. They planned to hold the baby skin-to-skin and breastfeed to facilitate their emotional attachment. Both women felt their plan was successful. To prepare for childbirth, most women in this study attended childbirth classes, read books and online materials, and sought advice from their mothers.
Some women in this study reported needing more time to recover physically and emotionally immediately after birth, especially after a long or difficult labor, before holding or caring for their newborns. After additional recovery time, these women were able to care for their newborns. These findings support earlier recommendations by Bloch et al. 32 not to assume a problem with bonding if a woman with autism requests time to recover before holding their newborn. In their study, Pohl et al. 16 noted that autistic women felt they could not ask for the help they needed. In this study, only one woman reported not receiving the support she needed; this woman gave birth in a facility that had a 24-h rooming-in policy. Having the baby in the room for an extended time was exhausting and led to “sensory overload.” Nurses may need to be flexible and provide respite time in the nursery to allow autistic women to recover.
At times, miscommunication between the nurse and autistic women resulted in some women becoming very protective of their newborns while in the hospital. During interactions with the nurse, the difficulties the women had conveying their pain level in labor, need for more information, problems understanding instructions, humor, and non-verbal communication eroded their trust in the nurses caring for them. This lack of trust may also make it difficult for health care professionals to educate about newborn care, assess bonding, and assist with breastfeeding. Other women in the study felt their voices were not heard and did not feel supported throughout the labor and birth process. When misinterpreted, behaviors such as “stimming” may lead to distressing situations for the autistic woman and result in feelings of being judged, this was evident in one of the women from this study who was visited by a social worker postpartum. She believed the nurses did not understand why she was “stimming” and concluded she was unstable. Because of this, the woman did not trust the nurses and was afraid to report feelings of anxiety and the beginning of PPD. It is not clear why the nurses felt a referral to a social worker was warranted for this woman. To avoid any misunderstanding and undue stress women should be informed of the reason for the referral and given the opportunity to consent prior to the visit.
Feeling stressed in an uncertain environment
These challenges faced by the autistic women in this study are consistence with challenges that other autistic individuals face when accessing health care.34,35 Barriers that hinder access to health care for autistic individuals include differences in communication and processing of information, unmet sensory needs, lack of health care professionals’ knowledge of autism, and stigma surrounding autism. 33 Trust in the health care professionals caring for the individual during childbirth is essential. To build trust, health care professionals communicate in ways that convey respect and acceptance. 36 Building trust in caring for autistic women necessitates understanding autism and the inherent communication patterns and behavioral characteristics. Requiring training for all health care professionals may help reduce stigma by highlighting communication and sensory needs, and an awareness that autism is a spectrum condition with variability in strengths and challenges. Many interventions that may convey respect and acceptance are readily available. These interventions include providing consistent caregivers, inquiring about sensory needs and flexibility in communication style to meet the expressed needs of the autistic individual. 36
Limitations
At the time of data collection, the time post-childbirth ranged from 6 months to 34 years, with 66.67% of participants having delivered within 10 years of the interview. Given the wide span, there is a possibility that women with older children may not recall their childbirth experiences completely. Nonetheless, current studies revealed similar findings regarding some autistic women needing more time before becoming emotionally attached to their newborn, 17 experiencing communication difficulties, and breastfeeding despite sensory challenges.16,17 In addition, similar findings were noted regarding some autistic women’s concerns about being judged as a mother.16,17 Thus, reflecting that the experiences expressed by the women in this study remain relevant and interventions to provide inclusive care throughout the childbirth period should be implemented. Two of the interviews were conducted via Facebook© messenger at the women’s request. Since there was no interview video, the researcher could not fully appreciate the women’s emotions and affect during the interview. To ensure accuracy of meaning, the researcher clarified their significance, provided a summary of the interview, and asked the women to explain.
Prior to the start of the study, the researcher spoke with members of the autistic women’s community regarding the purpose of the study, the types of questions to be asked, and to obtain permission to recruit on their social media site. Although the researcher has personal experience with autism, there is the possibility the data could be misinterpreted. To minimize this possibility, the researcher took several measures. During data collection, the researcher reviewed the answers to the interview questions with the participants asking for clarification or elaboration when appropriate. The researcher kept a reflexive journal and field notes. The researcher was responsible for the initial coding of the transcripts. This is a limitation of the study. To increase the trustworthiness of the data, the researcher consulted with fellow researchers throughout the data analysis process, discussing the developing themes, sharing the audit trail with the research team, and revising the themes together with the research team. The sample consisted of mostly white autistic women. Future studies should focus on the experiences of autistic women from diverse cultural and racial backgrounds.
Implications
After childbirth, some autistic women may need time to recover; health care professionals should be prepared for this and allow the woman to express her needs for holding the baby immediately after birth or for additional physical and emotional recovery time. Rooming-in policies should allow flexibility to ensure autistic women more assistance with newborn care if required. Clear communication is vital throughout hospitalization; health care professionals need to be aware of communication differences and stimming behaviors to prevent misinterpretation that could hinder care. Health care professionals should inquire about sensitivity to touch and other sensory stimuli before assisting with breastfeeding and eliminate the offensive stimuli. Many autistic women may prefer a hands-off approach to breastfeeding assistance. The health care professional should always ask for permission before touching the patient. 18 Breastfeeding for some of the women in this study was helpful in their bonding with their newborns and making them feel calmer and less anxious. Optimally breastfeeding opportunities should be initiated early, with privacy and without interruptions. For some autistic women, interruptions are stressful and hinder the process. Autistic women may need other sources for mothering knowledge and helpful hints than those created for women without autism. Health care professionals caring for these women need to be aware that traditional resources used by new mothers may not offer practical information for new autistic mothers.
In addition, if the new mother experiences sensory difficulties, she will need advice on how to handle the baby’s crying or sudden changes in routine. Breastfeeding women may desire support but may not wish to attend breastfeeding support groups. It is important to provide individualized parental education. It may be beneficial to provide postpartum education in short sessions. Prior to teaching sessions ask the autistic woman about their learning needs and how best to provide the information. Further health care professionals should also not assume that just because a woman does not ask for assistance, she is knowledgeable and comfortable and should assess and inquire with patients. 18 A summary of clinical implications is listed in Table 4.
Implications for practice.
Conclusion
This article describes the experiences of autistic women bonding in the early postpartum period. The autistic women in this study describe early bonding in similar ways as women without autism. Additional concerns that arose during the postpartum period were related to difficulty communicating with health care professionals and sensory needs. This study highlights the need for flexibility in postpartum care as some autistic women may need additional time to recover from birth and require assistance with newborn care. Furthermore, continuing education for health care professionals focused on autistic individual’s communication and sensory needs is vital to facilitate communication between autistic women and the individual’s providing health care. In helping to foster bonding and support breastfeeding during the early postpartum period, health care professionals must be ready to individualize care based on each autistic woman’s needs.
