By Dr Aimee Grant, Centre for Lactation, Infant Feeding & Translational Research, Swansea University
If I asked you to close your eyes and think of someone who’s Autistic, I imagine that you might get an image in your head of a child, probably with white skin. That image isn’t your fault, but is a result of Autistic adults, and Autistic mothers in particular not featuring much in discussions around Autism.
So, before I dive into infant feeding, let me start off by saying that we know that people who are Autistic remain Autistic for their entire life, and at least 1-2% of adults are Autistic. Women are as likely to be Autistic as men. One thing that may be different, however, is that women have historically been underdiagnosed, with mental health diagnosis often common on the path to an Autism diagnosis.
We recently reviewed the existing research on Autistic women’s infant feeding experiences, and came up with some recommendations for health professionals and others who provide infant feeding support to Autistic people, which I’ll describe below:
1. Clear, direct and respectful communication is a must
Whilst this may seem obvious, and what you would do with anybody you were supporting with infant feeding, Autistic people can find ambiguous language confusing, and small talk exhausting. For example, Autistic people might understand “How are you?” within a breastfeeding support context to mean that you should respond “fine, thanks” as is the usual social convention, and not that it was their opportunity (and maybe the only one) to describe problems. More direct language, and removing the small talk would lead to an opening question like: “Are you having any challenges with breastfeeding?” or a more gentle opener could be “How are things with the baby?”
The second part of this, focused on respectful communication, is essential. Autistic mothers reported that they did not feel listened to and sometimes even felt bullied. Active listening techniques, such as reflecting back the information the person has told you may be helpful here, to ensure a mutual understanding of the issue, for example:
Autistic person: “When he feeds on the left side it feels different to the right and hurts.”
Response: “So it feels painful when you feed on the left side, but it doesn’t hurt when you feed from the right?”
2. Consider Autistic preferences regarding touch
Autistic people are more likely to have a preference for additional space between them and you. This is because of differences in sensory perception, which can mean that somebody sitting right next to them can feel very uncomfortable. Putting up with somebody sitting very close to them, and/or other sensory issues, is a concept known as ‘masking’. Masking takes an enormous amount of concentration and makes it difficult to think and to fully take part in conversations. Whilst you might routinely sit next to someone to observe their feeding, you could consider asking: “would you prefer me to sit next to you or (eg: in that chair a bit further away).”
As always, people seeking breastfeeding support should not be touched (nor their baby’s head pushed into the breast), without explicitly asking if this is OK; but this is very important for Autistic people. Being touched without consent can lead Autistic people to ‘shut down’ (withdraw) or ‘meltdown’ (have explosive energy) due to overwhelm during or after the consultation; remember we are experts in ‘masking’ how we really feel due to understanding social expectations. Ultimately this can lead to withdrawing from using health services, and across a lifetime of ableist encounters, Autistic burnout.
(It is worth noting that the BfN Code of Conduct states “If you work with a mother, helping in a ‘hands off’ way. If the need arises and a mother gives her permission, you may put your hands over her hands to help guide her in positioning her baby”)
3. Staff and volunteers providing breastfeeding support should all have training in understanding Autism delivered by Autistic people
I’m sure I’ve said some things that most readers wouldn’t have thought of already. This shows the importance of having specialist training in supporting Autistic people, and this should be delivered by an Autistic training provider, as many traditional (eg: neurotypical led) providers use outdated and harmful myths within their Autism training. In the UK, Autistic UK, who were partners on this research, offer training delivered by Autistic people for a small fee, as does the wonderful Monique Craine (an Autistic mother).
4. Autistic people should have a named support provider
We know that continuity of carer has all sorts of benefits for mothers. When it comes to Autistic people, there is an often said phrase: “when you’ve met one Autistic person, you’ve met one Autistic person” eg: we are not all the same. So even if the whole team has had excellent training in supporting Autistic people, there will still be a need for the individual Autistic person to repeat information about what being Autistic means in terms of how its best to provide care to them. If it is impossible for continuity of carer to be provided, guidance on communication needs and sensory processing differences (things like: if there’s a flickering light, I will not be able to pay attention to what you are saying) should be contained within clinical notes, to avoid the Autistic person needing to repeat information or suffer through a consultation that is painful to them because of the sensory environment.
5. Accommodations should be available as widely as possible
In our review of evidence, some Autistic people didn’t know that they were Autistic when they had their babies, who were diagnosed as Autistic, which led to diagnosis for the birthing parent later in life. For this reason, we would suggest that the accommodations suggested above should be introduced as widely as possible, as undiagnosed Autistic people and people from other marginalised groups are also likely to benefit from them.
6. And lastly, language matters
You might also have noticed that I’ve used ‘Autistic people’ throughout this article. That’s because the Autistic community prefer ‘Autistic’ to ‘person with autism’, in recognition that Autism is a neurotype, that is a normal part of cognitive diversity that is permanent and can not change. The reason I’ve used ‘people’ or ‘person’ is that Autistic people are less likely to be cisgendered, and there’s a strong community preference for gender neutral language. You should consider asking Autistic people their preferred language to discuss Autism and never use Autistic Spectrum Condition or Autistic Spectrum Disorder (or their abbreviations of ASC / ASD) without the Autistic person saying that that is their preference. Likewise, asking pronoun preferences and consistently, trying (it’s OK – everyone slips up sometimes) to get them right will really help Autistic people to feel more comfortable whilst you support them.