A study by Swansea University has found that mothers with autism are not getting the help they need with breastfeeding.
The report claims the services were 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 delivery staff to realize there were people like her.
The Royal College of Midwives blamed underfunded services, but the Welsh Government said breastfeeding support was prioritized by services.
Ms Williams, a mother of two, said that while she really wanted to breastfeed her two children, she felt like a failure because she was struggling.
“I think I came off as a bad patient,” she said.
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“The worst experience from that time was a midwife coming in and saying I gave up way too quickly, and that almost flipped a switch for me … and I was like, ‘I’m on infant formula now,'” she said.
The 36-year-old, who was diagnosed with autism after giving birth to her two children, felt staff didn’t believe her as she explained her difficulties with coordination, touch and pain.
“When you’re breastfeeding your uterus contracts and I know most women feel that, but it was more painful than labor,” Ms Williams said.
The graduate student said she felt disbelieved by the staff.
Ms Williams explained that many women are diagnosed with autism later in life, while others may find it difficult to even communicate a diagnosis to healthcare professionals.
She wants staff to be responsive to individual needs and communication styles, which she thinks could benefit all new parents.
“I felt like I failed, and again I didn’t really have the knowledge that I have now to be able to say, ‘Look, I’m going to need more help with that.'”
for dr Aimee Grant of Swansea University, this is a familiar story.
The scientist had researched pregnancy and early infant feeding for almost 10 years before being diagnosed with autism in 2019.
“I’m a curious person, I thought I’d see what was already being done in this area and when I looked there really wasn’t much research,” she said.
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Despite some positive experiences, her new study, which looks at the experiences of more than 300 autistic mothers, found that many felt they weren’t getting the support they needed.
“It could make them stop breastfeeding. We’ve also had some clashed with healthcare professionals who couldn’t understand them who suggested reporting them to social services, which is absolutely not the right thing to do,” she added.
dr Grant recommended clear and direct communication to ensure mothers are not touched without explicit consent, as well as better training for medical staff.
“Autistic women exist, always ask them what their needs are and believe them when they tell you,” she said.
She added that providing training would be best for autistic people, but recognized services are stretched due to the shortage of midwives.
The Royal College of Midwives (RCM) said it has campaigned for better breastfeeding support for all mothers, including autistic women.
“With birth services seriously underfunded and understaffed, this is a real challenge and we know many women will not receive the right support as a result,” said Clare Livingstone, RCM policy adviser.
She added that it is important that delivery staff receive proper training, but is aware that this is not always done due to staff pressures.
A Welsh Government spokesman said health officials should take individual circumstances into account when providing breastfeeding support.
“Our Breastfeeding Action Plan sets out how we support people to start and maintain breastfeeding when they choose to breastfeed,” they added.
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