Autism, Autism spectrum disorder, Breastfeeding, Infant feeding



  1. Wilson, Jane C. PhD, MSN, BSN
  2. Andrassy, Bri DNP, RN


Purpose: The purpose of this study was to explore the experiences of autistic women who breastfed.


Study Design and Methods: We used a qualitative phenomenology design and a thematic analysis method. Semistructured interviews were conducted using a purposive sample from social media support groups for autistic adults. The interview involved one overarching question about their breastfeeding experience.


Results: Twenty-three autistic women who breastfed their infant(s) participated in our study. Three main themes were identified including intense sensory perception, focused determination, and one size doesn't fit all. Three subthemes helped to describe intense sensory perception: overstimulated, overtouched, and overwhelmed.


Clinical Implications: Autistic adults can have social interaction and expressive communication differences. Nurses can promote positive communication and provide appropriate care through supportive action. These findings offer a guide for nurses to better understand the experiences of autistic breastfeeding women.


Article Content

It is estimated that 1,80,322 adult women (0.86%) in the United States have Autism Spectrum Disorder (ASD), based on data from 2017 (Centers for Disease Control and Prevention [CDC], 2021). Autism Spectrum Disorder has been defined as a life-long neurodevelopmental disorder (Wei et al., 2021) that affects use of language and cognitive styles (Burton et al., 2020), social acumen and interaction (Therrien & Light, 2018), sensory integration (Gardner et al., 2016; Neave-DiToro et al., 2021), flexibility, and interpersonal skills (Pelz-Sherman, 2014). Although the cause of ASD is unclear, individuals on the autism spectrum have notable similarities, such as a deficit in social communication, difficulty developing social relationships (Therrien & Light), lack of eye contact (Madipakkam et al., 2019), restricted repetitive patterns of behaviors (Raulston et al., 2019), and heightened attention to detail and sensory experiences (Sharma et al., 2018). The diagnosis of ASD is made based on the presenting symptoms. To meet diagnostic criteria, the individual must demonstrate three symptoms in the social communication domain and at least two symptoms of restricted interests and repetitive behaviors; including a behavior of hyper or hypo reactivity to sensory input or unusual interests in sensory aspects of the environment (Sharma et al.).

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It is important to note that autism is not a childhood disorder; rather it manifests differently throughout the individual's lifespan (Pelz-Sherman, 2014). Later diagnosed individuals often experience comorbid conditions (Green et al., 2019). One study found that 79% of autistic adults had diagnosable mental health conditions (Cage & Troxell-Whitman, 2019). Common comorbid psychiatric disorders in adults with ASD include depressive disorders (Costa et al., 2020), anxiety disorders (Uljarevic et al., 2020), attention-deficit/hyperactivity disorder, obsessive-compulsive disorder (Wei et al., 2021), eating disorders, and personality disorders (Green et al.). Green et al. (2019) suggest a lifetime of stress experienced from the pressure to adapt daily life in one's society can be related to the development of these comorbid conditions.


Over the last 20 years, the prevalence of ASD has increased (Gardner et al., 2016; Sharma et al., 2018). According to the CDC, ASD is the top growing neurodevelopmental disability in the United States (Boyle et al., 2011). Currently it is estimated that the prevalence of ASD across all racial, ethnic, and socioeconomic backgrounds is 1 in 36 children (Sharma et al.). Autism Spectrum Disorder is four to five times higher in males than in females (CDC, 2021; Palmer et al., 2018). According to Pelz-Sherman (2014), the proportional dominance of males (80%) diagnosed has resulted in an underrecognized and underserved group of autistic women, many of whom become mothers and choose to breastfeed.


Although there has been a rise in the diagnosis of ASD, there have been few studies that look at the experience of autistic women who have breastfed. Current literature mainly examines breastfeeding as a possible deterrent to ASD in children, although no causal relationship has been found (Soke et al., 2019). One recent study described the childbirth and pregnancy of autistic women (Samuel et al., 2021). Our study explored the experience of women diagnosed with ASD who breastfed their children.



We used a qualitative phenomenology design (Creswell & Poth, 2018), with semistructured individual interviews, which offered an opportunity to get a deeper understanding of the experiences of autistic women who breastfed their infants.


Research Site Inclusion Criteria

Participants were recruited within social media support groups for autistic adults found on Facebook. Facebook was selected as the social media platform of choice because it is the most used platform with over 2.7 billion monthly active users (Datareportal, 2021). The site inclusion criteria included support groups that admitted members who were autistic adults (Table 1). Thirty-seven social media support groups met the site inclusion criteria. Of the 37 support groups, four groups allowed recruitment, six groups refused, and 27 did not respond. An invitation to participate in the study was posted for the members within each of the included four support groups. Access to recruit participants within the four social media support groups required the group's administrator to post the study's invitation. Visibility of the invitation was enhanced by weekly repostings between July through September 2020.


Participant Inclusion Criteria

The voluntary purposive sample were 18 years or older, did not require a legal guardian, and were medically or self-identified as autistic women who breastfed at least one infant. Those of any socioeconomic status, ethnicity or race, and location were eligible for this study. Participants were excluded if they could not speak or understand English at a conversational level, or if they had a limitation that would inhibit their ability to consent or complete an interview. Twenty-three participants met inclusion criteria and were interviewed. Recruitment ended once data became redundant and no new information was gathered.


Data Collection

Interview Development

Data collection began after Institutional Review Board (IRB) approval from Palm Beach Atlantic University. Many autistic adults experience social interaction and expressive communication differences. With this in mind, the interview process was carefully created to anticipate discomforts a participant may experience. IRB approval included the following interview formats: In-person, telephone, Zoom, and synchronous email, and Facebook Messenger text. Interviews began August 2020 during the Covid-19 global pandemic. Although the option to interview remotely was initially designed for participant comfort, the remote format made it possible to interview with safety during the pandemic. The interview guide was developed by the researchers and included one overarching question, "tell me about your breastfeeding experience" and one follow-up question of "is there anything else you would like to add?"


Participant Informed Consent

The purpose of the study, nature of the questions, and how data would be used and stored were explained. Participants were made aware they can stop at any time. Participants provided verbal or written informed consent by telephone, video conference, email, or text message. Varied consenting process limited difficulties in communication and ensured comprehension of the consent. A synchronous consent offered immediate clarification opportunities.


Interview Format

Individual semistructured interviews were conducted by telephone (n = 10), video conferencing (n = 3), synchronous email (n = 8), or synchronous text message (n = 2). A videoconferencing platform allowed users in different locations to hold virtual face-to-face meetings making it highly suitable for the collection of qualitative interview data (Archibald et al., 2019).


Data Analysis

Each participant was assigned a number to promote confidentiality (P1, P2, etc.). The audio recorded telephone interviews and video conferenced interviews were transcribed verbatim. The synchronous email interviews and synchronous text message interviews were copied in their entirety. Transcriptions were checked multiple times to develop familiarization of data. Organization, indexing, mapping, and storing of codes was aided by NVivo V.11 software.



Some deliberate processes improved trustworthiness including peer review of a detailed audit trail that included reflective notes, audio and video recordings, and drafts of interpretations (Creswell & Poth, 2018). Member checking summarized responses for accuracy and credibility. Peer debriefing provided constructive feedback.



Of the 23 autistic breastfeeding women, most were Caucasian (n = 20) and married (n = 17) and had at least two children (n = 18). The majority earned a college degree (9 Master's, 7 Bachelor's). Using social media in the study design made it possible to include English-speaking participants from various parts of the world including, United States (n = 14), United Kingdom (n = 7), Canada (n = 1), and New Zealand (n = 1). Many women reported having a combined total breastfeeding experience of over 4 years (n = 10). Qualitative analysis process identified three overall themes Intense Sensory Perception, Focused Determination, and One Size Doesn't Fit All.


Intense Sensory Perception

Most women indicated that it was difficult to sensory regulate, filter out, or just ignore sensory information. The theme, Intense Sensory Perception, can be summarized into three subthemes: Overstimulated, Overtouched, and Overwhelmed.


Overstimulated. All participants reported feeling overstimulated while they breastfed their infant. Overstimulation was described as having too much of a stimulus leading to discomfort and extreme irritability. Women said their milk let-down, infant sounds, and sucking sensations acted as triggers leading to overstimulation. One described overstimulation as: Crying babies are a sensory nightmare. My whole-body shivers and cringes and my skin crawls (P 20).


Women described overstimulation as a sensory weirdness. They reported finding it difficult to interpret, prioritize, and process stimuli experienced while breastfeeding. However, many found ways to cope or push through. Some found it comforting to breastfeed in a calm darkened room alone. Sensory issues like noises, crowds, sensations bother me. I needed a quiet dark room with no distractions or bright lights to stay calm (P 3). Other women tried diversionary techniques. I find that concentrating on my phone if I'm struggling, helps. But I know some people look down on this because it limits eye contact (P 7). One found comfort by creating a boundary between her breast and the infant using a nipple shield. People need to recognize boundaries. I use nipple shields so there's a little boundary space between me and my baby. It's not as much of a sensory trigger with the shield (P 6). A supportive partner can assist to decrease stimulation. I felt sensory overload from holding my baby. My husband had to hold her for me while I nursed (P 11).


Overtouched. Stimulation can occur from sight, hearing, taste, smell, and touch. Of the five senses, touch was mentioned most often and was characterized as sensory overload trigger. I don't like being touched in general and babies invade that. I get touched-out easily with the kicking and squirming (P 1). Touch aversions were specific to skin-to-skin sensations, the latch, and sucking sensations whether to breast or produced by pumping. I never had my nipples touched let alone had a baby latched onto them and I couldn't stand the feeling of the pump (P 5). Touch sensitivity was not limited to infant touching. Women also discussed the need for less touching from health professionals. I felt sensory overload from being touched all day by my baby and the nurse. I didn't like the nurses touching me. Nurses should ask before doing anything (P 14). One woman expressed her lack of confidence in asking her midwife to limit touching. The midwives would physically grab my breast to try and get him to latch. I felt so uncomfortable having her touch me but I didn't feel confident enough to tell them to stop (P 19).


Overwhelmed. Women described feeling overwhelmed by anxiety, frustration, and stress, which typically led to an emotional eruption or a meltdown. It's usually when he is crying. I feel overwhelmed, like I can't take it anymore (P 17). Another expressed her efforts to focus her thoughts to avoid a meltdown. I try to focus my thoughts, try to get use to the sensation, but I often feel overwhelmed (P 13).


Focused Determination

Many women said they have an intense fixation or interest in breastfeeding, calling it a hyperfocus. They reported becoming so engrossed in learning about breastfeeding to the exclusion of doing other things. They describe their hyperfocus as an asset enabling them to become a breastfeeding expert.


I prepared well in advance by joining breastfeeding support group moderated by trained breastfeeding peer supporters and lactation consultants...It became my hyper-focus (P 2). Some described their determination as a breastfeeding obsession. I was obsessed-had a one-track mind...I knew intellectually I was an expert, but it was hard in practice. I felt so knowledgeable, but breastfeeding was different (P 15).


Along with channeling their focus to gain knowledge, many women described a determination to breastfeed, even if that meant not asking for help.


I kept with it because that's how my brain is wired. It takes a while to make a decision because I have to research, but once I do I go full force (P 6). Many women described a need for control. I pushed through without asking for help, I wanted to do so much myself. I stayed with it, I wanted control over it (P 1). Another described her determination while having difficulty. I'm not necessarily in tune with pain, so if she latched on incorrectly, I just carried-on hurting myself. I was stubborn and steadfast... I persevered through problems. I carried-on when people told me to just give it up (P 9).


One Size doesn't Fit All

Many expressed that each autistic person is unique and so are their breastfeeding experiences. Therefore, this theme was adopted to include participants' desire to be seen and understood as individuals. Unfortunately, many women feel misunderstood. Professionals look at breastfeeding in a very neuro-typically based way. We are all different. Some of us are very dramatic, others are highly logical and literal. Remember one size doesn't fit all (P 21).


Many women discussed a need for supportive acceptance. I think we need understanding, acceptance, respect, and nurturing towards us. Don't view us as broken and less, but different. It's a neurological difference-don't judge us if we seem less attached emotionally (P 12). Many women offered advice to foster increased understanding. My face and tone are not indicators of how much pain or turmoil I am in. I don't have control of the tone of my voice. Don't imply my tone is what my mood is. Don't try to make eye contact. It isn't necessary. Eye contact is a socially constructed thing. Basically, don't assume we are all terrible mothers. It is demeaning (P 14).


Women in this study went to great lengths to describe the complex and multifaceted experiences they had while breastfeeding. They described intense sensory issues, along with their deep determination to achieve their breastfeeding goals despite difficulties. Most expressed a need to be appreciated as unique individuals including a desire to be heard and understood.


Clinical Nursing Implications

Women in this study reported sensory overstimulation from skin-to-skin contact, milk let-down, infant sucking, and even by their health care team. Many stated that they don't like to be touched in general calling it being overtouched, crossing a personal boundary. It is important to ask permission before touching in the course of treatment, even with casual bodily contact. Nurses should explain beforehand what they intend to do and why they are doing it. With this information, women may be able to tolerate being touched more comfortably.


Nurses need to anticipate intense sensory perceptions at the beginning of each interaction and adopt sensory sensitivity to touch, sound, smell, and lighting. They must be aware that those stimuli may produce anxiety, frustration, and stress. A characteristic of many autistic individuals is that they can become hyperfocused. Many learn volumes of information about breastfeeding during pregnancy, become determined to accomplish their breastfeeding goals, yet find it hard to do in practice. Nurses should be aware that women may appear knowledgeable and confident in her breastfeeding ability, yet still need step-by-step instruction and support. Several recommended it would be beneficial to have advocates who are educated about autism available for assistance.


Women were concerned about their nurses' perception of them, desiring an appreciation of their uniqueness. Often women are not diagnosed until later in life. With this in mind, nurses should consider that there may be a considerable number of women who mask ASD symptoms or cannot recognize them and may not verbalize their need for assistance. Several said that it was important that nurses be understanding and demonstrate acceptance. Do not view them as broken and less, but different. Observable behaviors, such as reduced eye contact, do not necessarily mean disinterest, but simply a norm for that individual's level of communication comfort.


Like many neurotypical women, participants mentioned that they lacked the confidence to ask for help from a lactation consultant. Some women used their partner to advocate and effectively translate information. Preserving continuity of care in nurse staffing can reduce social anxieties as new relationships do not need to be repeatedly developed.


It is beneficial to provide education in a variety of ways including step-by-step verbal instructions, videos, illustrations, demonstration, and the teach-back method. Often words can be especially difficult to process in times of emotional duress and sleep deprivation, so repeating the same explanation is not particularly helpful. Women would benefit from being asked clarifying questions to check for proper understanding of breastfeeding education. Do not just assume they understand. In some cases, women would indicate that they comprehended teaching just to avoid appearing as a poor mother. It is important to remember that all mothers benefit from varied teaching approaches and clarification methods. Autistic women should not be made to feel singled out for questioning because the provider feels she is a poor mother.


We used varied methods of interviewing which can be considered a study limitation. Email or text responses were less detailed and lacked flow of normal conversation. However, a strength of this study is the thoughtful accommodation that was provided using the various interview formats, and use of social media recruitment provided an international sample during a pandemic.



Our findings give insight into the experiences of autistic women who breastfed and hopefully will generate thoughtful reflection and understanding to help nurses provide appropriate care. Women described their intense sensory perception as it relates to breastfeeding, specifically feeling overstimulated, overtouched, and overwhelmed. Women described their focused determination, and desire to be seen and understood as individuals. More research is needed to expand the body of evidence on supportive action for nurses as they care for autistic women who breastfeed and expand knowledge in areas such as pregnancy and parenting for autistic persons.




* To avoid sensory overstimulation, nurses should ask permission before touching during treatment, even with casual bodily contact.


* Anticipate intense sensory perceptions at the beginning of each interaction and adopt sensory sensitivity to touch, sound, smell, and lighting.


* Be aware that women are concerned about the nurse's perception of them, desiring an appreciation of their uniqueness.


* To enhance learning, use a variety of education methods including step-by-step verbal instructions, videos, illustrations, demonstration, and the teach-back method.


* To diminish social anxieties, continuity of care in nurse staffing should be maintained as much as possible so new relationships do not need to be repeatedly developed.


INSTRUCTIONS Breastfeeding Experiences of Autistic Women



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