“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...

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Main Authors: Aimee Grant, Catrin Griffiths, Kathryn Williams, Amy Brown
Format: Article
Language:English
Published: Wiley 2024-01-01
Series:Maternal and Child Nutrition
Subjects:
Online Access:https://doi.org/10.1111/mcn.13581
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author Aimee Grant
Catrin Griffiths
Kathryn Williams
Amy Brown
author_facet Aimee Grant
Catrin Griffiths
Kathryn Williams
Amy Brown
author_sort Aimee Grant
collection DOAJ
description 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.
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spelling doaj.art-1a119bf6110d46cc867ca0245c56fea32023-12-26T05:21:00ZengWileyMaternal and Child Nutrition1740-86951740-87092024-01-01201n/an/a10.1111/mcn.13581“It felt like I had an old fashioned telephone ringing in my breasts”: An online survey of UK Autistic birthing parents' experiences of infant feedingAimee Grant0Catrin Griffiths1Kathryn Williams2Amy Brown3Centre for Lactation, Infant Feeding and Translation Swansea University Swansea UKCentre for Lactation, Infant Feeding and Translation Swansea University Swansea UKAutistic UK, CIC Llandudno UKCentre for Lactation, Infant Feeding and Translation Swansea University Swansea UKAbstract 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.https://doi.org/10.1111/mcn.13581AutismAutism Spectrum Disorderbreastfeedingformula feedinginfant feeding
spellingShingle Aimee Grant
Catrin Griffiths
Kathryn Williams
Amy Brown
“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
Maternal and Child Nutrition
Autism
Autism Spectrum Disorder
breastfeeding
formula feeding
infant feeding
title “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
title_full “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
title_fullStr “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
title_full_unstemmed “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
title_short “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
title_sort 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
topic Autism
Autism Spectrum Disorder
breastfeeding
formula feeding
infant feeding
url https://doi.org/10.1111/mcn.13581
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