“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

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Grant, A., Griffiths, C., Williams, K., & Brown, A. (2023). “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 & Child Nutrition, 20(1), e13581-e13581. https://doi.org/10.1111/mcn.13581

Publication date: 1 Nov 2023 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
4
Publication authors identified as autistic
2 / 4 (50.0%)
  1. Aimee Grant *
  2. Catrin Griffiths
  3. Kathryn Williams *
  4. Amy Brown

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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These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
55
Total cited references integrated for this publication.
Cited references with an identified autistic author
10 / 55 (18.2%)
Cited author occurrences identified as autistic
21 / 239 (8.8%)
Among occurrences linked to AutiHub author records: 21 / 56 (37.5%). Distinct cited authors identified as autistic: 12 / 205 (5.9%).
Cited author occurrences linked to AutiHub author records
56 / 239 (23.4%)
Distinct linked cited authors: 33 / 205 (16.1%)
Linked cited-author occurrences not identified as autistic
35 / 56 (62.5%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 35 / 239 (14.6%). Distinct linked cited authors not identified as autistic: 21 / 33 (63.6%).
  1. Mary J. Renfrew , Subhash Pokhrel , Maria Quigley , Felicia McCormick , Julia Fox‐Rushby , Rosemary Dodds et al. (2012). Preventing disease and saving resources: the potential contribution of increasing breastfeeding rates in the UK . Brunel University Research Archive (BURA) (Brunel University London).
    Type: Article OpenAlex: https://openalex.org/W1588987868
    Crossref OpenAlex
  2. Dawn Adams , Madeline Stainsby , Jessica Paynter (2021). Autistic Mothers of Autistic Children: A Preliminary Study in an Under-Researched Area . Autism in Adulthood, 3(4), 339-346. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2020.0078 OpenAlex: https://openalex.org/W3154093069
    Crossref OpenAlex OpenCitations
  3. Dori Pelz-Sherman (2014). Supporting Breastfeeding Among Women on the Autistic Spectrum: Disability, Difference, and Delight . Clinical Lactation, 5(2), 62-66. Springer Publishing Company.
    Type: Article DOI: 10.1891/2158-0782.5.2.62 OpenAlex: https://openalex.org/W2329073721
    Crossref OpenAlex OpenCitations
  4. Sally Johnson , Dawn Leeming , Iain Williamson , Steven Lyttle (2013). Maintaining the ‘good maternal body’: expressing milk as a way of negotiating the demands and dilemmas of early infant feeding . Journal of Advanced Nursing, 69(3), 590-599. Wiley.
    Type: Article DOI: 10.1111/j.1365-2648.2012.06035.x OpenAlex: https://openalex.org/W1811804996
    Crossref OpenAlex OpenCitations
  5. Bestow C. (2021). Late bloomer: how an Autism diagnosis changed my life . Late bloomer: how an Autism diagnosis changed my life.
    Type: Other
    Crossref
  6. Amy Brown , P. Raynor , M. Lee (2011). Maternal control of child-feeding during breast and formula feeding in the first 6 months post-partum . Journal of Human Nutrition and Dietetics, 24(2), 177-186. Wiley.
    Type: Article DOI: 10.1111/j.1365-277x.2010.01145.x OpenAlex: https://openalex.org/W1923905723
    Crossref OpenAlex OpenCitations
  7. Beardon L. (2019). Avoiding anxiety in autistic adults . Avoiding anxiety in autistic adults.
    Type: Other
    Crossref
  9. Damian Milton * (2012). On the ontological status of autism: the ‘double empathy problem’ . Disability & Society, 27(6), 883-887. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2012.710008 OpenAlex: https://openalex.org/W1968949608
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  10. Katy Johanna Benson (2023). Perplexing Presentations: Compulsory Neuronormativity and Cognitive Marginalisation in Social Work Practice with Autistic Mothers of Autistic Children . The British Journal of Social Work, 53(3), 1445-1464. Oxford University Press (OUP).
    Type: Article DOI: 10.1093/bjsw/bcac229 OpenAlex: https://openalex.org/W4321371598
    Crossref OpenAlex OpenCitations
  11. A. L. Pohl , S. K. Crockford , M. Blakemore , Carrie Allison , Simon Baron-Cohen (2020). A comparative study of autistic and non-autistic women’s experience of motherhood . Molecular Autism, 11(1), 3. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-019-0304-2 OpenAlex: https://openalex.org/W3000239743
    Crossref OpenAlex OpenCitations
  12. Cindy A. Stearns (2009). The Work of Breastfeeding . WSQ: Women's Studies Quarterly, 37(2), 63-80. Project MUSE.
    Type: Article DOI: 10.1353/wsq.0.0184 OpenAlex: https://openalex.org/W2000019291
    Crossref OpenAlex OpenCitations
  13. Virginia Braun , Victoria Clarke (2022). Thematic Analysis . In Encyclopedia of Quality of Life and Well-Being Research (pp. 1-7). Springer International Publishing.
    Type: Book chapter DOI: 10.1007/978-3-319-69909-7_3470-2 OpenAlex: https://openalex.org/W4320081749
    Crossref OpenAlex
  14. Amber-Sophie Dugdale , Andrew R. Thompson , Alexandra Leedham , Nigel Beail , Megan Freeth (2021). Intense connection and love: The experiences of autistic mothers . Autism, 25(7), 1973-1984. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211005987 OpenAlex: https://openalex.org/W3154030996
    Crossref OpenAlex OpenCitations
  15. Janet Elizabeth Edmunds , Paul Fulbrook , Sandra Miles (2013). Understanding the Experiences of Mothers Who Are Breastfeeding an Infant with Tongue-Tie . Journal of Human Lactation, 29(2), 190-195. SAGE Publications.
    Type: Article DOI: 10.1177/0890334413479174 OpenAlex: https://openalex.org/W2002206850
    Crossref OpenAlex OpenCitations
  16. Brian D. Doss , Larisa N. Cicila , Annie C. Hsueh , Kristen R. Morrison , Kathryn Carhart (2014). A randomized controlled trial of brief coparenting and relationship interventions during the transition to parenthood. Journal of Family Psychology, 28(4), 483-494. American Psychological Association (APA).
    Type: Article DOI: 10.1037/a0037311 OpenAlex: https://openalex.org/W2328416275
    Crossref OpenAlex OpenCitations
  17. Tom Shakespeare (2004). Social models of disability and other life strategies . Scandinavian Journal of Disability Research, 6(1), 8-21. Stockholm University Press.
    Type: Article DOI: 10.1080/15017410409512636 OpenAlex: https://openalex.org/W2024043792
    Crossref OpenAlex OpenCitations
  18. Brown A. (2021). Breastfeeding uncovered: Who really decides how we feed our babies? Breastfeeding uncovered: Who really decides how we feed our babies?.
    Type: Other
    Crossref
  19. Nigel Rollins , Ellen Piwoz , Phillip Baker , Gillian Kingston , Kopano Matlwa Mabaso , David McCoy et al. (2023). Marketing of commercial milk formula: a system to capture parents, communities, science, and policy . The Lancet, 401(10375), 486-502. Elsevier BV.
    Type: Article DOI: 10.1016/s0140-6736(22)01931-6 OpenAlex: https://openalex.org/W4319336827
    Crossref OpenAlex OpenCitations
  20. Patty Douglas (2013). As If You Have a Choice: Autism mothers and the remaking of the human . Health, Culture and Society, 5(1), 167-181. University Library System, University of Pittsburgh.
    Type: Article DOI: 10.5195/hcs.2013.137 OpenAlex: https://openalex.org/W2028695611
    Crossref OpenAlex OpenCitations
  21. Tanya C. Burton (2016). Exploring the experiences of pregnancy, birth and parenting of mothers with autism spectrum disorder . Staffordshire Online Repository (Staffordshire University).
    Type: Dissertation OpenAlex: https://openalex.org/W2583219414
    Crossref OpenAlex
  22. Matthew J. Maenner , Zachary Warren , Ashley Robinson Williams , Esther Amoakohene , Amanda V. Bakian , Deborah A. Bilder et al. (2023). Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020 . MMWR. Surveillance Summaries, 72(2), 1-14. Centers for Disease Control MMWR Office.
    Type: Article DOI: 10.15585/mmwr.ss7202a1 OpenAlex: https://openalex.org/W4360600181
    Crossref OpenAlex OpenCitations
  23. Meng-Chuan Lai , Simon Baron-Cohen (2015). Identifying the lost generation of adults with autism spectrum conditions . The Lancet Psychiatry, 2(11), 1013-1027. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(15)00277-1 OpenAlex: https://openalex.org/W2128937542
    Crossref OpenAlex OpenCitations
  24. Cassidy S. (2020). The Oxford handbook of autism and co‐occurring psychiatric conditions . The Oxford handbook of autism and co‐occurring psychiatric conditions, 349.
    Type: Other
    Crossref
  25. Marcia Gardner , Patricia D. Suplee , Joan Bloch , Karen Lecks (2016). Exploratory Study of Childbearing Experiences of Women with Asperger Syndrome . Nursing for Women's Health, 20(1), 28-37. Elsevier BV.
    Type: Article DOI: 10.1016/j.nwh.2015.12.001 OpenAlex: https://openalex.org/W2271567387
    Crossref OpenAlex OpenCitations
  26. Verity Chester (2019). Autistic women and girls: under-recognised, under-researched and under-served . Advances in Autism, 5(1), 1-1. Emerald.
    Type: Article DOI: 10.1108/aia-01-2019-049 OpenAlex: https://openalex.org/W2919092043
    Crossref OpenAlex OpenCitations
  27. Ping-Tao Tseng , Yen-Wen Chen , Brendon Stubbs , Andre F. Carvalho , Paul Whiteley , Chia-Hung Tang et al. (2019). Maternal breastfeeding and autism spectrum disorder in children: A systematic review and meta-analysis . Nutritional Neuroscience, 22(5), 354-362. Informa UK Limited.
    Type: Article DOI: 10.1080/1028415x.2017.1388598 OpenAlex: https://openalex.org/W2766717141
    Crossref OpenAlex OpenCitations
  28. Denitza Williams , Jessica Webber , Bethan Pell , Aimee Grant * , Julia Sanders , Ernest Choy et al. (2019). “Nobody knows, or seems to know how rheumatology and breastfeeding works”: Women's experiences of breastfeeding whilst managing a long-term limiting condition – A qualitative visual methods study . Midwifery, 78, 91-96. Elsevier BV.
    Type: Article DOI: 10.1016/j.midw.2019.08.002 OpenAlex: https://openalex.org/W2965598041
    Crossref OpenAlex OpenCitations
  29. Rhiannon Phillips , Bethan Pell , Aimee Grant * , Daniel Bowen , Julia Sanders , Ann Taylor et al. (2018). Identifying the unmet information and support needs of women with autoimmune rheumatic diseases during pregnancy planning, pregnancy and early parenting: mixed-methods study . BMC Rheumatology, 2(1), 21-21. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s41927-018-0029-4 OpenAlex: https://openalex.org/W2811006045
    Crossref OpenAlex OpenCitations
  30. Christi L. Gross , Kristen Marcussen (2017). Postpartum Depression in Mothers and Fathers: The Role of Parenting Efficacy Expectations During the Transition to Parenthood . Sex Roles, 76(5-6), 290-305. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11199-016-0629-7 OpenAlex: https://openalex.org/W2349779019
    Crossref OpenAlex OpenCitations
  31. Aimee Grant * , Bethan Pell , Lauren Copeland , Amy Brown , Rebecca Ellis * , Delyth Morris et al. (2022). Views and experience of breastfeeding in public: A qualitative systematic review . Maternal & Child Nutrition, 18(4), e13407-e13407. Wiley.
    Type: Article DOI: 10.1111/mcn.13407 OpenAlex: https://openalex.org/W4289316562
    Crossref OpenAlex OpenCitations
  32. Amy Christine Brown (2017). Breastfeeding Uncovered: Who really decides how we feed our babies?
    Type: Book OpenAlex: https://openalex.org/W2552579583
    OpenAlex
  33. Jane C. Wilson , Bri Andrassy (2022). Breastfeeding Experiences of Autistic Women . MCN: The American Journal of Maternal/Child Nursing, 47(1), 19-24. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/nmc.0000000000000779 OpenAlex: https://openalex.org/W3201738451
    Crossref OpenAlex OpenCitations
  34. Kevin Wong , Punam Patel , Michael B. Cohen , Jessica R. Levi (2017). Breastfeeding Infants with Ankyloglossia: Insight into Mothers' Experiences . Breastfeeding Medicine, 12(2), 86-90. SAGE Publications.
    Type: Article DOI: 10.1089/bfm.2016.0177 OpenAlex: https://openalex.org/W2573587451
    Crossref OpenAlex OpenCitations
  35. Chiaki Inoue , Yuri Hashimoto , Yoko Nakatani , Mitsuko Ohira (2022). Smartphone use during breastfeeding and its impact on mother–infant interaction and maternal responsiveness: Within‐subject design . Nursing & Health Sciences, 24(1), 224-235. Wiley.
    Type: Article DOI: 10.1111/nhs.12918 OpenAlex: https://openalex.org/W4200250493
    Crossref OpenAlex OpenCitations
  36. Aimee Grant * , Sara Jones , Vicky Sibson , Rebecca Ellis * , Abbie Dolling , Tara McNamara et al. (2024). The safety of at home powdered infant formula preparation: A community science project . Maternal & Child Nutrition, 20(1), e13567-e13567. Wiley.
    Type: Article DOI: 10.1111/mcn.13567 OpenAlex: https://openalex.org/W4387326979
    Crossref OpenAlex OpenCitations
  37. Aimee Grant * , Kirsten McEwan , Sally Tedstone , Giles Greene , Lauren Copeland , Billie Hunter et al. (2018). Availability of breastfeeding peer support in the United Kingdom: A cross‐sectional study . Maternal & Child Nutrition, 14(1). Wiley.
    Type: Article DOI: 10.1111/mcn.12476 OpenAlex: https://openalex.org/W2614523018
    Crossref OpenAlex OpenCitations
  38. V. Harries , Amy Brown (2019). The association between use of infant parenting books that promote strict routines, and maternal depression, self-efficacy, and parenting confidence . Early Child Development and Care, 189(8), 1339-1350. Informa UK Limited.
    Type: Article DOI: 10.1080/03004430.2017.1378650 OpenAlex: https://openalex.org/W2754359273
    Crossref OpenAlex OpenCitations
  40. Victoria Clarke , Virginia Braun (2014). Thematic Analysis . In Encyclopedia of Critical Psychology (pp. 1947-1952). Springer New York.
    Type: Book chapter DOI: 10.1007/978-1-4614-5583-7_311 OpenAlex: https://openalex.org/W4232818056
    OpenCitations
  41. Sarah Hampton , Carrie Allison , Simon Baron-Cohen , Rosemary Holt (2023). Autistic People’s Perinatal Experiences II: A Survey of Childbirth and Postnatal Experiences . Journal of Autism and Developmental Disorders, 53(7), 2749-2763. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-022-05484-4 OpenAlex: https://openalex.org/W4224257827
    Crossref OpenAlex OpenCitations
  42. Michelle L Litchman , MJ Tran , Susan E Dearden , Jia-Wen Guo , Sara E Simonsen , Lauren Clark (2019). What Women With Disabilities Write in Personal Blogs About Pregnancy and Early Motherhood: Qualitative Analysis of Blogs . JMIR Pediatrics and Parenting, 2(1), e12355. JMIR Publications Inc..
    Type: Article DOI: 10.2196/12355 OpenAlex: https://openalex.org/W2913885895
    Crossref OpenAlex OpenCitations
  43. Sarah Hampton , Joyce Man , Carrie Allison , Ezra Aydin , Simon Baron-Cohen , Rosemary Holt (2022). A qualitative exploration of autistic mothers’ experiences II: Childbirth and postnatal experiences . Autism, 26(5), 1165-1175. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211043701 OpenAlex: https://openalex.org/W3197073506
    Crossref OpenAlex OpenCitations
  44. Harper B. (2019). Breastfeeding: The autistic experience . Association of Breastfeeding Mothers, 14, 1.
    Type: Other
    Crossref
  46. Health and Social Care Information Centre McAndrew F. Thompson J. Fellows L. Large A. Speed M. &Renfrew M. J. (2012). IFF Research Health and Social Care Information Centre Health and Social Care Information Centre. Infant Feeding Survey 2010.
    Type: Other
    Crossref
  47. T.A.M. McDonald (2020). Autism Identity and the “Lost Generation”: Structural Validation of the Autism Spectrum Identity Scale and Comparison of Diagnosed and Self-Diagnosed Adults on the Autism Spectrum . Autism in Adulthood, 2(1), 13-23. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2019.0069 OpenAlex: https://openalex.org/W3006983109
    Crossref OpenAlex OpenCitations
  48. NHS Digital. (2022). Autism statistics July 2021 to June 2022. https://digital.nhs.uk/data-and-information/publications/statistical/autism-statistics/july-2021-to-june-2022
    Type: Other
    Crossref
  49. White, Susan W. ca. 20./21. Jh. , Maddox, Brenna ca. 20./21. Jh. , Mazefsky, Carla ca. 20./21. Jh. (2020). The Oxford Handbook of Autism and Co-Occurring Psychiatric Conditions . Oxford University Press.
    Type: Book DOI: 10.1093/oxfordhb/9780190910761.001.0001 OpenAlex: https://openalex.org/W4234311176
    OpenAlex
  50. Daniel Glenn (2022). Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities . World Futures, 78(5), 339-341. Informa UK Limited.
    Type: Article DOI: 10.1080/02604027.2022.2094194 OpenAlex: https://openalex.org/W4285727398
    OpenAlex
  51. Quinn A. (2021). Autistic and Expecting: Practical Support for Parents to be, and Health and Social Care Practitioners . Autistic and expecting: Practical support for parents to be, and health and social care practitioners.
    Type: Other
    Crossref
  52. Walker, Nick (2021). Neuroqueer heresies notes on the neurodiversity paradigm, autistic empowerment, and postnormal possibilities . Neuroqueer heresies: Notes on the neurodiversity paradigm, autistic empowerment, and postnormal possibilities.
    Type: Other OpenAlex: https://openalex.org/W7011697317
    Crossref
  54. World Health Organization (2017). Breastfeeding . Breastfeeding.
    Type: Other
    Crossref
  55. Yergeau R. (2018). Authoring autism . Authoring autism.
    Type: Other
    Crossref