How midwifery staff can support Autistic women with breastfeeding: recommendations from Autistic people

World breastfeeding week aims to educate and support breastfeeding. This year the focus is on “strengthening the capacity” of those who are involved in supporting breastfeeding. To this end we have invited Dr Aimee Grant, Senior research officer, Centre for Lactation, Infant Feeding and Translational Research, Swansea University, to educate us all around the support for Autistic women with breastfeeding, based on the voices of the women themselves.

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How midwifery staff can support Autistic women with breastfeeding: recommendations from Autistic people

 

Earlier this year, I led a team who reviewed the evidence on Autistic experiences of breast and formula feeding. We found that accessing breastfeeding support could be more difficult for Autistic people. For example, did you know that many Autistic people hate making and receiving phone calls? There were also differences in how Autistic bodies experience breastfeeding compared to neurotypical bodies because Autistic people experience bodily sensations (like the milk let down reflex) and pain (like the early signs of mastitis) differently to neurotypical people. We – I say we because like the participants, I am Autistic – also have different experiences of the sensory environment, which would include things like the noise of a baby crying, and constantly having a baby on your body to respond to cluster feeding.

 

To find out more about this, and what Autistic people wished their maternity staff would do to support them with breastfeeding, we asked Autistic people from the UK to tell us about their experiences of pregnancy and early parenting. 140 people told us about their breastfeeding experiences. As occurs with a general population of people breastfeeding, there were many challenges. A lot of people stopped breastfeeding before they wanted to and some of these felt upset that they were not able to meet their breastfeeding goals. Furthermore, many participants strongly wanted to continue breastfeeding, despite the (sometimes major) difficulties they encountered. There were three main recommendations that were proposed by the Autistic participants. The consensus was that maternity staff should have a better understanding of Autism, have better breastfeeding training, and they should listen to what Autistic people say. I will explore understanding Autism and listening to Autistic patients in more detail below.

 

Within participants’ answers, it was very clear that they felt that maternity staff mostly did not understand Autism, or that their understanding was outdated or incomplete. As a result, 43 participants recommended that staff have better understanding of Autism, particularly how breastfeeding may be different for Autistic people. First, Autistic people may not feel pain in the same way as neurotypical people and may find it difficult to describe pain in a way that the average health professional understands. For example, when giving birth, one Autistic person’s pain presentation was not understood, so maternity staff did not believe them when their baby was literally about to be born! When it comes to breastfeeding, Autistic people may tolerate severe pain (indicating mastitis or other issues) for longer than neurotypical people, leading to more serious physical issues. Alternatively, they may find some experiences, such as the milk let down reflex, intensely painful – one participant described it as worse than giving birth. This means that you may need to change your approach to breastfeeding support to identify potentially serious issues, including understanding that Autistic people may not simply say “it hurts” when pain is present. For example, aged 40 and with three degrees, I have recently come to understand that when I feel nauseous, including to the point of vomiting, it is because there is pain somewhere in my body.

 

Second, Autistic people also have sensory differences compared to neurotypical people, where we can feel sensations too much or too little. This can mean that for people who feel sensations intensely, breastfeeding can be terribly uncomfortable and even unbearable. This can be because of little hands touching everywhere, the baby’s warm body against their own skin, the milk let down reflex, sucking sensations – and don’t even get Autistic people started on the intolerable noise and sensation of a breast pump (although I should point out that a minority did find expressing OK).

 

Advice included maternity staff warning Autistic people during pregnancy that breastfeeding could be more difficult for Autistic people to tolerate, so they could feel prepared. The participants found that reducing other sensory input – such as background noise or being touched by others – or using strategies to reduce dysregulation themselves by using their phone or other ‘stims’, made the difficult sensory sensations associated with breastfeeding easier to manage. Stims, or stimming, are soothing to Autistic people, and include things like flapping our hands, using a fidget toy, or even repeating words or phrases that feel nice to say. To help Autistic people on postnatal wards, midwives could try to secure single-occupancy rooms to reduce sensory sensations and be welcoming and non-judgemental to Autistic people stimming to help re-regulate themselves. There have been horror stories of midwives reporting Autistic people to social services for stimming during labour, when it is a technique to reduce stress and thus is beneficial to both parent and child.

 

Third, Autistic people communicate differently to neurotypical people. In places where the sensory environment is challenging – like in hospitals where there are many strange and loud noises, fluorescent lights, and particular smells – it can be harder for us to process spoken or written language. Instead, some of our brain processing capacity goes to blocking out the painful sensory environment, and “masking” – that is pretending that we are neurotypical in order to be accepted by health professionals who are known to reject Autistic communication. If you have an Autistic patient, it would be best if you can see them one-to-one in a room with walls, rather than a cubicle with curtains or in the main room at a breastfeeding support group. This is to block out as much background noise as possible. You could also ask if they would prefer the lights to be turned off if there is natural light coming in through a window. Then speak normally, not slowly (most Autistic people do not have learning disabilities), but preferably offer written information or links to videos that repeat the information you have given.

 

This leads us on to the next recommendation, that those supporting Autistic people with breastfeeding should listen to them. In the past it was incorrectly assumed that Autistic people did not have empathy. This has been disproven, with part of the issue being, in fact, that often neurotypical people do not feel empathy towards Autistic people. This is known as the ‘double empathy problem’. Even if you cannot begin to imagine what the Autistic person is telling you – for example one person said that breastfeeding felt like having an old-fashioned telephone ringing in their breasts – please empathise with them. If they tell you something feels unbearable, but that they still want to continue breastfeeding, empathise with them first and then ask if they’d like to try to problem solve with you, rather than saying that formula is the only solution. Ask them what the worst thing is. It may be difficult for them to answer, so be patient and give them time to think. If they are “touched out”, that is they can’t stand the skin-to-skin contact, suggest different positions to hold the baby, different ways of covering as much skin as possible with clothes, or suggest trying to express. One partner even carefully held the baby away from the body during breastfeeding, so that the amount of touching was minimised, showing that “out of the box” solutions may be needed. For any sensory difficulty, suggest that they reduce other sensory input, and stim or distract themselves by watching or reading something whilst breastfeeding. If you think it would be helpful to examine the breast, for instance to check for infection or nipple damage, always ask for consent before touching. Finally, remember that Autistic people often do not always show distress in a (neuro)typical way, but that does not mean that we are not distressed.

 

I hope that from reading this you now know a little bit more about the differences that Autistic people experience when breastfeeding. To recap, these are mostly in relation to pain and sensory experiences, which can mean that early signs of mastitis and other issues are missed by the parent. The other important point to reiterate is that breastfeeding can be challenging from the point of view of the skin-to-skin contact, the noise of baby suckling and the internal bodily sensations associated with breastfeeding. In addition, when it comes to you supporting breastfeeding, you may need to take a slightly different approach; try to find a quiet and calm space where you can be alone with the person (and their partner if they want). Listen to the challenges the Autistic person raises, empathise with them, and offer to problem solve together, and never touch an Autistic person’s body without their consent.

 

N.B This article has been prepared with referral to the Trans journalist style guide (https://transjournalists.org/style-guide/ )

 

Dr Aimee Grant

Senior research Officer

Centre for Lactation, Infant Feeding and Translational Research

Swansea University

August 2022