Breastfeeding: NHS Wales urged to give autistic mothers better help

Autistic mothers don't get the help they need to breastfeed, Swansea University research has found.

The report claims the services are "built on a lack of understanding" of the needs and barriers some mothers face.

Kat Williams, who was diagnosed with autism at the age of 32, said it was important for maternity staff to realise people like her existed.

The Royal College of Midwives blamed under-resourced services, but the Welsh government said breastfeeding help was prioritised by the services.

Williams, a mother-of-two, said that while she really wanted to breastfeed both of her children, struggling with it made her feel like a failure.

"I think I came across as a bad patient," she said.

"The worst experience from that period was a midwife coming in and saying I gave up too easily, and that for me almost flipped a bit of a switch... and I was like, 'I'm recipe food now,'" she said.

The 36-year-old, who was diagnosed with autism after having two children, felt staff did not believe her as she explained her difficulties with coordination, touch and pain.

What are the challenges for mothers with autism?

"When you breastfeed, it makes your uterus shrink and I know that most women feel it, but it's more painful than labor," Shen said.

The graduate student said she didn't feel trusted by staff.

Williams explains that many women are diagnosed with autism later in life, while others may find it difficult to disclose the diagnosis to health care professionals.

She wants to see employees meet the needs and style of personal communication, which she thinks can benefit all new parents.

"I've felt like I've failed and again, I don't really have the knowledge that I have now to be able to tell you, 'look, I'm going to need more help with this.'

For Dr Aimee Grant from Swansea University, this is a familiar story.

Scholars studied pregnancy and feeding babies for nearly 10 years before being diagnosed with autism in 2019.

"I'm a curious person, I think I'll see what's been done in the field and when I look at there really isn't much research," she said.

Despite some positive experiences, her new study, which looked at the experiences of more than 300 autistic mothers, found that many felt they were not getting the support they needed.

"That could lead to them stopping breastfeeding. We also have some people who have clashed with health professionals who can't understand them, who suggest that they will report them to social services, which is absolutely not the right thing to do.

"Pressure"

Dr Grant recommends clear and direct communication, ensuring mothers are not touched without explicit consent, as well as better training for healthcare professionals.

"Autistic women exist, always asking them what their needs are and believing them when they tell you," she says.

She added that it was best for autistic people to provide any training, but acknowledged services had been stretched with a shortage of midwives.

The Royal College of Midwives (RCM) said it had campaigned to support better breastfeeding for all mothers, including autistic women.

"With maternity services under-resourced and severely understaffed, this is a real challenge and we know many women will not receive the right level of support," said Clare Livingstone, RCM policy adviser.

She added that it was important that maternity staff were properly trained, but were aware this did not always happen due to personnel pressures.

A Welsh government spokesman said health boards should consider the plight of individuals when providing breastfeeding support.

"Our breastfeeding action plan sets out how we will support people to start and maintain breastfeeding when selected," they added.