Low breastfeeding rates are driven by multiple bio-psycho-social factors. Experience of breastfeeding is known to differ by maternal demographic factors (age, education and ethnicity) but there is less recognition of factors such as neurodivergence. This review, prospectively registered with PROSPERO (registration number: CRD42021271465), systematically identified qualitative research, commentaries and personal accounts related to Autistic mothers and infant feeding. Database searching identified 1225 records, with thematic synthesis undertaken on 22 (eight peer-reviewed studies and 14 grey literature) pieces. Our analysis identified that maternity and infant feeding services were built on a lack of understanding of Autistic needs, and were often inaccessible at a time when Autistic mothers already felt a loss of control and lack of social support. Specifically relating to breastfeeding, knowledge and determination were often high, and a minority of mothers reported positive breastfeeding experiences. However, sensory challenges, pain and interoceptive differences (exacerbated by a lack of support) made breastfeeding impossible for some. Infant formula was viewed as second-best to breastmilk, but a minority of mothers found the ritual of preparing bottles of formula positive. There is an urgent need for maternity and infant feeding services to accommodate the needs of Autistic mothers, including service design and staff training. Lay abstract What is already known about the topic? Mothers are encouraged to breastfeed their babies due to known health benefits for both babies and mothers. However, although breastfeeding is ‘natural’, that does not make it easy and many women experience challenges. Autistic women may face additional barriers to breastfeeding when compared to neurotypical women. What this paper adds? We reviewed all existing evidence on Autistic mothers’ infant feeding experiences (22 pieces) and found that although many Autistic women wanted to breastfeed, breastfeeding was difficult for Autistic mothers for three key reasons. First, maternity and infant feeding services were inaccessible and unsupportive to Autistic mothers, meaning they did not receive help when needed. Second, becoming a mother was challenging because of exhaustion, loss of control over routines and a lack of social support. Third, when breastfeeding Autistic mothers experienced sensory challenges, such as ‘being touched out’, and pain, which could feel unbearable. Despite these difficulties, many Autistic mothers had done a lot of reading about breastfeeding and were determined to breastfeed their babies; some mothers found breastfeeding positive. Infant formula was often viewed as second-best compared to breastmilk, but some mothers found the ritual of preparing bottles of formula to be calming. Implications for practice, research or policy The findings of this work show that Autistic mothers urgently need better support from health professionals to help meet their breastfeeding goals, including how to remove or reduce the extra barriers being Autistic brings to breastfeeding.
Background: Autism is a normal part of cognitive diversity, resulting in communication and sensory processing differences, which can become disabling in a neurotypical world. Autistic people have an increased likelihood of physical and mental co-occurring conditions and die earlier than neurotypical peers. Inaccessible healthcare may contribute to this. Autism Health Passports (AHPs) are paper-based or digital tools which can be used to describe healthcare accessibility needs; they are recommended in UK clinical guidance. However, questions remained as to the theoretical underpinnings and effectiveness of AHPs. Methods: We undertook a systematic literature search identifying studies focused on AHPs for adults (aged over 16 years) from five databases. Included literature was subjected to realist evaluation. Data were extracted using a standardised form, developed by the research team, which considered research design, study quality for realist review and the Context, Mechanisms and Outcomes (CMOs) associated with each AHP tool. Findings: 162 unique records were identified, and 13 items were included in the review. Only one item was considered high quality. Contextual factors focused on the inaccessibility of healthcare to Autistic patients and staff lack of confidence and training in supporting Autistic needs. Interventions were heterogeneous, with most sources reporting few details as to how they had been developed. The most frequently included contents were communication preferences. Mechanisms were often not stated or were inferred by the reviewers and lacked specificity. Outcomes were included in four studies and were primarily focused on AHP uptake, rather than Outcomes which measured impact. Conclusion: There is insufficient evidence to conclude that AHPs reduce the health inequalities experienced by Autistic people. Using an AHP tool alone, without the inclusion of the local Autistic community developing the tool, and a wider intervention, such as training for staff or the use of local champions, may mean that AHPs do not trigger any Mechanisms, and thus cannot affect Outcomes.
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