“It felt like I had an old fashioned telephone ringing in my breasts”: An online survey of UK Autistic birthing parents' experiences of infant feeding

Abstract

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.

Abstract

Participants were highly motivated to breastfeed. Almost half of those who breastfed found it positive always or most of the time. However, breastfeeding could result in sensory difficulties and disrupted routines. Support for breast and formula feeding was often considered inadequate.

Key messages

• Many Autistic people are highly motivated to breastfeed, regardless of challenges.

• Autistic people may experience sensory discomfort when breastfeeding, including from the intensity of touch between themselves and their baby. Distraction and reducing sensory burdens can help.

• Expressing always or most of the time was relatively common (10%), and a route to maintaining exclusive breastfeeding when directly breastfeeding was too uncomfortable.

• Receiving breastfeeding support was significantly associated with improvements in a range of breastfeeding experiences.

• Breastfeeding support for Autistic people should be offered on a one‐to‐one basis with continuity of carer.