Authors: Aimee Grant and Kat Williams
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If you search online for Autism and breastfeeding, you’ll see a ton of papers about the association – or lack of association – between mothers breastfeeding and the child “developing Autism”. The statement that “correlation does not equal causation” – ie: just because you can show a link between two things, there’s no evidence that thing A caused thing B – is very appropriate here. Let me start by pointing out that being Autistic is a lifelong neurotype we’re (both Aimee and Kat are Autistic) born with, not something that is, or could ever be, caused by a parenting behaviour. Anyway, my point is that, regardless of this association being of limited importance, this association is discussed in thousands and thousands of journal articles.
The thing that’s discussed far less often is the infant feeding experiences of Autistic adults who give birth to a baby (we’ll call them Autistic birthing parents from here on, to keep with community preferences for gender neutral language). There’s a clear public health message that’s well known in the UK (and beyond) that breastmilk is the optimal nutrition for babies. However, in the UK, whilst over 80% of birthing parents breastfeed initially this declines quickly as they face multiple and extremely challenging barriers to breastfeeding that they are not able to overcome as there is inadequate support. It is well established what health services should do to support the general population of mothers to breastfeed, but in practice there are often many hurdles that are not overcome when delivering services, which reduces their effectiveness. A lack of resources once birthing parents are discharged from hospital (a day or two after birth) is a common issue in the UK, in part due to a shortage of midwives.
If services are unable to meet the needs of a general population of birthing parents, those who are marginalised in some way are likely to need a more tailored service to meet their needs and allow them to meet their own breastfeeding goals, as research has found with mothers who have rheumatic diseases. That’s likely to be particularly relevant for Autistic birthing parents, due to our differences in interoception at least. That led Aimee and Kat to start looking for evidence on Autistic birthing parents’ views and experiences of breastfeeding. Working with Jennifer Leigh, Sara Jones and Amy Brown, we did a systematic review, which is a search for all of the research published on a topic, to find out what Autistic birthing parents thought about breastfeeding and formula feeding, which you can read in full here, and that we’ll discuss below.
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Overall the views and experiences of over 300 Autistic birthing parents were included, but the literature only focused on the experiences of Autistic mothers, with no gender variance of birthing parents included. As we had anticipated, we found evidence that breastfeeding was difficult for Autistic birthing parents in ways additional to the general population. This was in relation to three main areas, which I’ll explore in more detail below: maternity and infant feeding support services were inaccessible; new parenthood disrupted existing Autistic coping strategies; and breastfeeding was difficult due to sensory and interoception issues.
First, there was very little evidence that maternity and infant feeding support services were able to meet the communication needs of Autistic birthing parents.
Second, like all parents, the transition to parenthood was exhausting. For Autistic birthing parents, however, needing to meet the baby’s needs – as it recommended by ‘on demand feeding’ – meant it was very challenging to maintain existing routines and to use coping strategies as they would have previously
Third, in the early weeks of breastfeeding, it is completely normal for babies to feed for many hours a day (this is known as ‘cluster feeding’), due to their tummies being very tiny. However, for Autistic birthing parents, feelings of being “touched out” (due to the intensity of this skin-to-skin contact) could be overwhelming. Alongside this, the feeling of the baby latching onto the nipple could feel painful and the experience of suckling or the milk let down reflex were uncomfortable for some Autistic birthing parents. Despite these additional challenges, many Autistic birthing parents were very determined to breastfeed and spent a lot of time researching how to breastfeed by themselves. When it came to formula feeding babies, some Autistic birthing parents were directed to give ‘top ups’ of infant formula, and some moved over to infant formula when it wasn’t possible for them to breastfeed any longer. In general, Autistic birthing parents were under supported by health professionals in problem solving when breastfeeding was difficult.
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So, that leads us to the question of what should be done? We have the following recommendations for those who support Autistic birthing parents, although we think that these recommendations would also make services more accessible to other marginalised groups:
Communication should be clear, direct and specific and ideally followed up with written information.
Birthing parents should not be touched, for example when demonstrating breastfeeding attachment, without explicit consent.
Staff should receive training and tools related to Autism, but this also needs to be specific to infant feeding and able to be tailored to each Autistic mothers’ individual needs.
Autistic mothers should have a named provider of maternity and infant feeding support to avoid needing to repeat their needs to new members of staff.
Guidance on communication and sensory needs to be included in maternity notes (‘handheld notes’ in the UK) and child health records (‘the red book’ in the UK) for all mothers, would also lower the burden on Autistic mothers required to regularly reassert their needs.
Going forward, Aimee, Kat and colleagues are undertaking a review of Autism Health Passports, a tool which it is often argued can make health care accessible to us. We have also asked Autistic birthing parents to tell us about their experiences of maternity care and infant feeding in an online survey. The results of these findings will be published later this year, but you can contact Aimee if you would like to know more about any of these projects.
Our new research was funded by the Research Wales Innovation Fund and is published today in the journal Autism.