New parents always remember the moment where you're discharged from the hospital, get home and suddenly realise it's just you and your baby and that sudden realisation of "now what do we do". But those feelings of confusion, isolation, and sometimes distress are even more acute for autistic mums as they navigate motherhood.
Kathryn Williams, remembers finding even the set up of a maternity ward distressing. Then when she had her first baby, poor coordination made the tasks which fill almost all hours of those early days - the nappy changes and breastfeeding - particularly hard.
"I had very poor coordination after I gave birth. All parts of having a new born can be far more difficult for autistic women than I think it is for the average new parent, so even changing nappies I found incredibly difficult."
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Breastfeeding too was hard. When midwives or health visitors were describing different holds for her to try to breastfeed, she also struggled. "When I was being told all of these different holds, I couldn't do them but when I was saying, I can't do this, and they kept saying I could but I knew I would drop my baby."
Drop-in sessions for new mums often takes place in group settings and this too can be particularly challenging for autistic mothers as is the changing impact on your body.
"Take the example of not realising you need to go to the toilet until the last minute," Kathryn explained. "People say surely you must know a bit’ and the reply to that this ‘genuinely no, not at all’. So I think that not being believed is a big problem. I am a notoriously stubborn person who very much likes proving people wrong but breastfeeding was one area in which I couldn't do it and I think the frustration then of not being believed and that's that's a real trigger for me and I think it's a big trigger for a lot of people but for the autistic community, particularly because we're often told that what we're experiencing isn't possible."
Kathryn, now 36, only found out she was autistic after she’d had her two children. She is now director of Autistic UK, an Autistic led advocacy group and a student at Cardiff University. Research from Autistic UK and Swansea University, working with the University of Kent has found that breastfeeding support from midwives and health visitors is often not well suited to meet the needs of autistic women.
Around one in 100 people across the UK being autistic and autism is a spectrum, which means that autistic people have varying and often complex support needs. Some people may have an accompanying learning disability and require 24-hour care, while others simply need things like clear communications and small adjustments at school or work.
One of the key challenges the research found was unique to autistic women is called interoception.
Dr Aimee Grant from the Centre for Lactation, Infant Feeding and Translational Research at Swansea University, explained: "Every person will have a level of interoception which is understanding internal bodily feelings. So like the average person might get a good half an hour warning before they desperately need to go to the toilet but actually, some autistic people don't get that. They know just at the last minute that they need to go to the toilet or they're starving, hungry or way, way too hot.
"Those sorts of things also apply to breastfeeding. So when your milk releases, the average woman will feel that that's coming out and it won't be a very intense feeling, but they'll know but some autistic people don't know that their milk is releasing, and others felt it's so strongly that it was actually really unpleasant.”
Dr Grant added: “Another major thing is the sensory environment around autistic people is felt quite intensely a lot of the time. So the feeling of having your baby's body skin to skin, being all hot, and wiggly, and all of those sorts of things that little babies do, could be really uncomfortable.”
Every person’s autism is slightly different so support needs to be tailored which means a mother doesn’t have to repeat her needs every time a different healthcare worker visits. For Kathryn, there is one big takeaway. "Believe women when they're telling you something, because I was saying [when feeding] ‘I can't I can't do it, I am going to drop the baby and they would just say 'you just need to try harder'."
Dr Grant said: "It is widely acknowledged that breastfeeding support in the NHS is woefully inadequate; due to severe underfunding and a shortage of over 10,000 midwives, it is not possible for most mothers to receive the support they need to meet their breastfeeding goals. We know that in the UK mothers who are younger and from low income backgrounds tend to breastfeed less, but there is less recognition of factors like neurodivergence. This review has highlighted that there is an urgent need for maternity and infant feeding services to accommodate the needs of autistic mothers."
The review concludes with some key recommendations for health professionals including that communication should be clear and followed up with written information; mother shouldn't be touched and staff should get autism training. For those who have been diagnosed with autism, mothers should have a single health professional (“continuity of carer”) to provide maternity and infant feeding support to avoid needing to repeat their needs to new members of staff.
You can find more information at Autistic UK . You can also join the Facebook group Autistic Breastfeeding, Chestfeeding, and Bodyfeeding Parents where you can get support.
A Welsh Government spokesperson, said: “Breastfeeding help continues to be prioritised in the support provided to families from midwifery and health visiting services. Health boards should consider each individuals circumstances when providing support. Our breastfeeding action plan sets out how we will support people to initiate and maintain breastfeeding when chosen.”
