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Supporting Breastfeeding Among Women on the Autistic Spectrum: Disability, Difference, and Delight
Abstract
Professionals supporting breastfeeding mothers who are on the autistic spectrum by providing information, guidance, and clinical considerations for lactation in settings that are medical, psychological, or private practice in lactation support, may benefit from this comprehensive overview.
The author outlines relevant symptoms and discusses how the practitioner-patient relationship could be impacted by characteristics associated with high-functioning autism and Aspergers, and includes a case study interview with a mother who has Aspergers. Practical guidelines for lactation
support are included.
... The existing research highlighted that Autistic birthing parents were often very determined to breastfeed and that breastfeeding could be positive for Autistic mothers (Gardner et al., 2016). However, Autistic mothers reported many of the barriers identified in a general population of breastfeeding mothers, including a lack of support and challenges establishing breastfeeding (Pelz-Sherman, 2014). An additional challenge for Autistic parents was navigating sensory, pain and interoceptive differences, that is internal bodily feelings such as milk let-down, associated with breastfeeding (Burton, 2016). ...
Around 3% of people are Autistic. Autistic people communicate differently from non‐Autistic people and experience the sensory world differently. There is limited evidence that Autistic people can face additional barriers to breastfeeding. We are an Autistic‐led research team that developed an online survey following consultation with the Autistic community. Autistic people from the UK who had been pregnant were eligible to take part in the survey, which focused on the entire maternity journey. A total of 193 people participated, of whom 152 had experiences of infant feeding (137 breastfeeding, 82 formula feeding). Participants were highly motivated to breastfeed, and almost half of those who breastfed found it positive always or most of the time. However, breastfeeding—and in particular the milk let‐down reflex—could result in pain and sensory difficulties, including ‘feeling odd’. Expressing breastmilk always or most of the time was reported by 10% of breastfeeding participants. The intensity and unpredictability of both breast and formula feeding were challenging to manage. Parents reported that it was easy to understand how to prepare infant formula, but that it could also be a negative and anxiety‐inducing experience. Support for breast and formula feeding was often considered inadequate. When parents did access breastfeeding support, this significantly improved a range of breastfeeding experiences. However, participants recommended more tailored support and continuity of carer. To meet the needs of Autistic birthing parents, those providing infant feeding support should receive training on Autism through a neurodiversity‐affirming lens, which should be delivered by Autistic people.
Low breastfeeding rates are driven by multiple bio-psycho-social factors. Experience of breastfeeding is known to differ by maternal demographic factors (age, education and ethnicity) but there is less recognition of factors such as neurodivergence. This review, prospectively registered with PROSPERO (registration number: CRD42021271465), systematically identified qualitative research, commentaries and personal accounts related to Autistic mothers and infant feeding. Database searching identified 1225 records, with thematic synthesis undertaken on 22 (eight peer-reviewed studies and 14 grey literature) pieces. Our analysis identified that maternity and infant feeding services were built on a lack of understanding of Autistic needs, and were often inaccessible at a time when Autistic mothers already felt a loss of control and lack of social support. Specifically relating to breastfeeding, knowledge and determination were often high, and a minority of mothers reported positive breastfeeding experiences. However, sensory challenges, pain and interoceptive differences (exacerbated by a lack of support) made breastfeeding impossible for some. Infant formula was viewed as second-best to breastmilk, but a minority of mothers found the ritual of preparing bottles of formula positive. There is an urgent need for maternity and infant feeding services to accommodate the needs of Autistic mothers, including service design and staff training.
Lay abstract
What is already known about the topic?
Mothers are encouraged to breastfeed their babies due to known health benefits for both babies and mothers. However, although breastfeeding is ‘natural’, that does not make it easy and many women experience challenges. Autistic women may face additional barriers to breastfeeding when compared to neurotypical women.
What this paper adds?
We reviewed all existing evidence on Autistic mothers’ infant feeding experiences (22 pieces) and found that although many Autistic women wanted to breastfeed, breastfeeding was difficult for Autistic mothers for three key reasons. First, maternity and infant feeding services were inaccessible and unsupportive to Autistic mothers, meaning they did not receive help when needed. Second, becoming a mother was challenging because of exhaustion, loss of control over routines and a lack of social support. Third, when breastfeeding Autistic mothers experienced sensory challenges, such as ‘being touched out’, and pain, which could feel unbearable. Despite these difficulties, many Autistic mothers had done a lot of reading about breastfeeding and were determined to breastfeed their babies; some mothers found breastfeeding positive. Infant formula was often viewed as second-best compared to breastmilk, but some mothers found the ritual of preparing bottles of formula to be calming.
Implications for practice, research or policy
The findings of this work show that Autistic mothers urgently need better support from health professionals to help meet their breastfeeding goals, including how to remove or reduce the extra barriers being Autistic brings to breastfeeding.
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.
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