Accessibility measures should be urgently introduced into infant feeding services to support autistic women to meet their breastfeeding goals, according to new research.
The study, published in Autism, looked at the experiences of more than 300 autistic mothers, and found that not a single autistic woman felt well supported when they encountered breastfeeding difficulties.
The review, which included eight articles, identified multiple barriers to breastfeeding, including sensory processing and pain, discrimination, lack of understanding from friends, family and healthcare professionals, and inaccessible infant feeding support services.
Sensory issues often make it difficult for autistic women to breastfeed
Knowledge and determination to breastfeed was often high, however, many autistic mothers said it was difficult for them to translate knowledge into practical skills.
While a small number of women reported positive experiences of breastfeeding, many found it difficult. Reported issues included pain (which could be related to latch or biting from the baby), hypersensitivity to touch, and unpleasant sensory sensations.
Interoceptive differences could also mean that women did not experience sensations such as pain or engorgement in the same way that neurotypical mothers would.
Autistic mothers did not feel well supported by healthcare professionals
Although occasional reports identified clinicians who positively supported autistic women, it was strongly reported that the majority of clinicians did not understand the lived reality of being autistic. This included a lack of awareness of sensory differences, differences in experiencing and reporting pain, and communication differences.
Experiences of maternity services were therefore described almost entirely negatively by the participants, with a general feeling of being told off by staff, or not listened to.
Many of the participants also reported being touched without permission and being spoken to in a neurotypical manner, meaning misunderstandings would often occur.
These experiences negatively impacted autistic mothers, with some saying they felt judged, reluctant to disclose their diagnosis, feared their babies would be taken into social care, and that they had to mask their autism.
“An urgent need for health services to be better informed and organised to accommodate Autistic mothers”
In light of these findings, the authors of the study are calling for better support for autistic mothers, particularly from healthcare professionals, who they often turn to for support and advice.
They write: “There is an urgent need for health services to be better informed and organised to accommodate Autistic mothers and for health professionals to understand Autistic differences, including sensory processing challenges, different pain presentations, communication differences and different help-seeking presentations to neurotypical women.”
The researchers suggest the following considerations:
Communication should be clear, direct and specific, and should be followed up with written information
Mothers should not be touched without explicit consent
Staff should receive autism training and specifically infant feeding training for autistic mothers
Autistic mothers should be allocated a named support provider to prevent them having to repeat their needs to new members of staff
Guidance on communication and sensory needs to be included in maternity notes and child health records for all mothers.
They add that while the considerations are focused on the needs of autistic women, they have the potential to improve maternity and infant feeding services more widely, with many accessibility measures benefitting all.
“This is important because of the presence of undiagnosed women at the time of birth, stigmatisation and fear associated with disclosing an autism diagnosis, which may lead to lack of disclosure from Autistic women to healthcare services, and healthcare providers’ lack of linked information systems across departments.”
They therefore suggest service improvement in general, rather than setting up bespoke separate services.