Bundling up her belongings and fleeing hospital just hours after lifesaving surgery following an ectopic pregnancy, Dr Aimee Grant knew medical staff probably thought she was acting “like a madwoman”.
But, fighting for breath due to allergic reactions and distressed that her needs as an autistic person weren’t being met, Aimee, a public health specialist, felt she had no other choice.
The previous two weeks had been exceptionally tough. Several days after realising she was losing a pregnancy at seven weeks, with bleeding and pain far worse than she’d experienced during a previous miscarriage, Aimee, 42, phoned her local hospital’s Early Pregnancy Unit (EPU) reporting a suspected ectopic pregnancy.
“I was told I’d need to get referred by my GP and that nobody was available to do the scan as it was a Sunday,” she says. Increasingly concerned, she secured an appointment at a private clinic decked out with “teddy bears you could have your scan photo printed on – not the ideal place when you’re losing your baby”, where Aimee was diagnosed with a ‘pregnancy of unknown location’. The following afternoon, Aimee was asked to come to the hospital urgently.
This in itself was daunting as it was the height of the Covid pandemic and Aimee was shielding. “Until about 2017 I’d been busy and sporty, doing regular half marathons. But I’d become increasingly unwell, receiving diagnoses including fibromyalgia, chronic fatigue and aquagenic urticaria, which means water can make me come out in hives. I became an electric wheelchair user and now can’t walk very far at all.
“I’d also had severe allergic reactions to air fresheners, cleaning products, diesel fumes and aftershave, and been hospitalised with asthma after my inhalers stopped working. Eventually, I was diagnosed with Mast Cell Activation Syndrome, a form of systemic allergies.”
In 2019, aged 37, Aimee had also been diagnosed with autism. Although Aimee’s medical file contained details of these diagnoses, she felt nobody in the maternity unit understood her needs and, due to Covid restrictions, her husband Matthew was unable to accompany her to advocate for her. “I was so exhausted and so unwell. The pain had been horrific for days, I was admitted on a 10-bed ward and for most of that time I was the only one losing a pregnancy. It was bright, noisy and incredibly difficult to get any sleep.
Thankfully, surgery went well. “Staff were doing their best and working so hard. They saved my life and I’m incredibly grateful, but it was a really difficult experience. Nobody knew what to do when I told them I was autistic, or asked ‘What could we do to help with that?”
The morning after surgery, two healthcare assistants “drenched in perfume” arrived. “I tried to get my breathing under control using my inhalers. I’d previously had quite severe reactions to anaesthetic, so was probably reacting to that, too.
“I had no idea how badly I might deteriorate and was really worried I could end up in A&E alongside Covid patients. All I needed was fresh air and I’d be OK, but I couldn’t get anyone to listen. I thought, ‘if I’m still exposed to these allergens I’m going to keep getting worse. I need to leave’.
“Staff suggested I speak with a doctor but I was asked to wait in a freshly-bleached room and I couldn’t stay there. I phoned my husband and asked him to pick me up.”
Then, at Aimee’s one week check-up, instead of having her questions answered, she says, “It was like I was being told off. I felt they hadn’t understood at all that no one discharges themself against medical advice, when something’s that serious, without feeling terrified.”
Out of a truly awful experience, however, has come an incredible project. After Aimee joined Swansea University as a Senior Research Assistant in March 2021 she applied for funds to research autistic people’s experiences of maternity care. “In my survey of 193 autistic people from the UK, 60% said they weren’t asked to give consent to physical examinations more than half the time.
Only a third reported feeling understood and listened to during appointments, most of the time or always,” says Aimee, who is now a Senior Lecturer at the university.
“Over one-third reported that things were never or only sometimes explained in a way they could understand. You can’t give consent if you don’t understand.
“We know autistic pain presentations can look different – 10 people I interviewed were literally about to give birth and weren’t believed. It meant they were under-treated for their pain, which was really traumatic. It’s important clinicians know autistic people might show pain differently.”
Aimee began creating YouTube videos – Autistic Pregnancy, Birth and Beyond: Your Questions Answered – with autistic healthcare professionals and parents. “We were meant to make seven or eight videos… we ended up with 114,” she says.
Now, Aimee has written a book, the Autism Friendly Guide to Pregnancy, which will be published next July. To top it all off, Aimee’s groundbreaking research has been recognised with a win at last month’s Sense Awards, where she won Campaigner of the Year.
“I’m particularly proud because the parents who took part were talking about experiences that have been quite difficult for them,” she says. “It’s lovely to know the effort that they gave is having a positive impact.”
For now, Aimee just wants maternity units to make small adaptations that can potentially make a huge difference. “We’re not always even asking for changes that would be big or expensive,” she explains.
“Turning off the main light and using small lights in the corner of a room, or switching off the constant beep of a monitor and watching it instead, could make people much more comfortable.”
