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“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

Aimee Grant Orcid Logo, Catrin Griffiths Orcid Logo, Kathryn Williams Orcid Logo, Amy Brown Orcid Logo

Maternal and Child Nutrition, Volume: 20, Issue: 1

Swansea University Authors: Aimee Grant Orcid Logo, Catrin Griffiths Orcid Logo, Amy Brown Orcid Logo

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DOI (Published version): 10.1111/mcn.13581

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...

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Published in: Maternal and Child Nutrition
ISSN: 1740-8695 1740-8709
Published: Wiley 2024
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URI: https://cronfa.swan.ac.uk/Record/cronfa65431
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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&#x2014;and in particular the milk let-down reflex&#x2014;could result in pain and sensory difficulties, including &#x2018;feeling odd&#x2019;. 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. 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spelling 2024-07-15T11:33:56.2429478 v2 65431 2024-01-10 “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 6a1ce3bc54c692c804e858b70d2e4bd2 0000-0001-7205-5869 Aimee Grant Aimee Grant true false 2d49e9db71928b3c4e564063c2b8b06e 0000-0002-6581-0536 Catrin Griffiths Catrin Griffiths true false 37aea6965461cb0510473d109411a0c3 0000-0002-0438-0157 Amy Brown Amy Brown true false 2024-01-10 HSOC 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. Journal Article Maternal and Child Nutrition 20 1 Wiley 1740-8695 1740-8709 Autism, Autism Spectrum Disorder, breastfeeding, formula feeding, infant feeding 1 1 2024 2024-01-01 10.1111/mcn.13581 COLLEGE NANME Health and Social Care School COLLEGE CODE HSOC Swansea University SU Library paid the OA fee (TA Institutional Deal) The Swansea University Accelerate Healthcare Technology Centre. 2024-07-15T11:33:56.2429478 2024-01-10T11:25:27.0730441 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Public Health Aimee Grant 0000-0001-7205-5869 1 Catrin Griffiths 0000-0002-6581-0536 2 Kathryn Williams 0000-0001-7274-3493 3 Amy Brown 0000-0002-0438-0157 4 65431__29700__5a8c588331d34e3997168ca46a95586b.pdf 65431.pdf 2024-03-13T08:40:03.9186807 Output 1321065 application/pdf Version of Record true This is an open access article under the terms of the Creative Commons Attribution License. true eng http://creativecommons.org/licenses/by/4.0/
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
spellingShingle “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
Aimee Grant
Catrin Griffiths
Amy Brown
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_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_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
author_id_str_mv 6a1ce3bc54c692c804e858b70d2e4bd2
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author_id_fullname_str_mv 6a1ce3bc54c692c804e858b70d2e4bd2_***_Aimee Grant
2d49e9db71928b3c4e564063c2b8b06e_***_Catrin Griffiths
37aea6965461cb0510473d109411a0c3_***_Amy Brown
author Aimee Grant
Catrin Griffiths
Amy Brown
author2 Aimee Grant
Catrin Griffiths
Kathryn Williams
Amy Brown
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department_str School of Health and Social Care - Public Health{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Health and Social Care - Public Health
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description 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.
published_date 2024-01-01T02:39:24Z
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