A new review by Swansea University, working with the University of Kent and non-profit organisation, Autistic UK, has found that breastfeeding support from midwives and health visitors is often not well suited to meet the needs of Autistic women.
The review, published in Autism covered the experiences of more than 300 Autistic mothers and was led by Dr Aimee Grant from Swansea University’s Centre for Lactation, Infant Feeding and Translational Research (LIFT). Dr Grant found that maternity and infant feeding support services were built on a lack of understanding of the needs of Autistic mothers and were often inaccessible during early parenthood when they, like most parents, already felt overwhelmed.
The new analysis found that many Autistic mothers had done a lot of research about breastfeeding and were very motivated to breastfeed their babies. While a minority of mothers reported positive breastfeeding experiences, for most, the challenges the majority of woman face in order to breastfeed were compounded by differences in how they experienced pain and bodily sensations, exacerbated by a lack of support.
This made breastfeeding very challenging for most and impossible for others. Feeding babies infant formula felt like they were not meeting their preferred feeding goals, but a minority of mothers found comfort in the ritual of preparing bottles of formula.
Dr Grant said: “It is widely acknowledged that breastfeeding support in the NHS is woefully inadequate; due to severe underfunding and a shortage of over 2,000 midwives, it is not possible for most mothers to receive the support they need to meet their breastfeeding goals. We know that in the UK mothers who are younger and from low income backgrounds tend to breastfeed less, but there is less recognition of factors like neurodivergence.
"This review has highlighted that there is an urgent need for maternity and infant feeding services to accommodate the needs of Autistic mothers.”
The review concludes with some key recommendations for health professionals:
- Communication should be clear, direct and specific and followed up with
written information; - Mothers should not be touched, for example when demonstrating breastfeeding
attachment, without explicit consent; - Staff should receive training related to Autism, which is specific to infant feeding that can be tailored to each Autistic mothers’ individual needs;
- Autistic mothers should have a single health professional (“continuity of carer”) to provide maternity and infant feeding support to avoid needing to repeat their needs to new members of staff and,
- Guidance on communication and sensory needs should be included in maternity notes.
Kathryn Williams, non-Executive Director and Research Lead at Autistic UK, said: “The work we do at Autistic UK has highlighted the disparity in access to healthcare for Autistic adults. This mirrors research findings which indicate that a focus on improving Autistic adults’ access to healthcare is essential, and we are encouraged by the pilot Oliver McGowan Mandatory Training in Learning Disability and Autism in England.
"We are also beginning work with Welsh NHS Boards to implement the Code of Practice for Delivery of Autism Services and would welcome mandatory training in England and Wales for all healthcare professionals.”
The review was funded by the Research Wales Innovation Fund.