Birthrights research in 2013 and 2018 found disabled women reported poorer experiences of childbirth than other respondents. They told us they:
- received inadequate information about their choices more often than other women;
- were unhappier with the availability of pain relief;
- felt they had less choice and control over their birth experiences;
- felt that their rights were poorly or very poorly respected;
- only 19% of women (2018) thought reasonable adjustments had been made for them and some found birth rooms, postnatal wards, or their notes and scans “completely inaccessible”.
On World Autism Awareness Day, we’re really pleased to publish two guest blogs by Emma and Hayley, which shine a spotlight on the challenges faced by autistic women during pregnancy and childbirth. They show how listening to women, respecting them as experts in their own needs and enabling this through continuity of carer – underpinned by a human rights approach – is so vital.
My name is Emma Durman – I’m a late diagnosed Autistic woman with several co-occurring conditions. I’m also co-director of Autside, a training and consultancy company that specialises in Autism and neurodiversity, and a final year MSc student focusing my dissertation on the Autistic experience of pregnancy, birth and motherhood.
Disabled people have long been infantilised and desexualised and thus disabled women’s birth experiences have often been overlooked in research and support. Autistic women face the additional issues of disparity of diagnosis, meaning we – and those around us – often do not realise we have additional or differing needs in the maternity and birth process.
My birth experience was traumatic. On paper, it probably reads as uneventful. Normal vaginal birth, less than 24 hours. But internally, it has left scars that will never heal, stolen precious memories I can never regain.
I met my daughter on the worst day of life. It feels like a
betrayal even to write such words – the birth of your child is meant to be the
best day of your life, bar none, full of wonder and magic and overwhelming
love, with the inconveniences of pain, fear and discomfort ushered away,
forgettable, the moment you see your baby.
I am Autistic, and maybe it is my neurotype, or my nature,
but I find it extremely hard not to be honest. And in honesty I did love my
child. Of course. And there was wonder and amazement. But there was also
unrelenting, overwhelming pain, anxiety, trauma and a thick layer of fog and
disconnect that did not dissipate magically and completely. No, instead it
stayed with me, as I tried to orient myself in a new and terrifying world,
surrounded by people that did not understand me or respect my needs and wishes,
that at best were dismissive and at worst openly hostile. It stayed and
coloured the moments I laid eyes on my beautiful daughter, it stayed and
infiltrated the days, weeks and months after her birth, sending me into a
spiral of post traumatic stress and depression that made it difficult to
function, to bond with my baby. That made me reliant on my partner to such an
extent he had to refrain from returning to work for 9 months, and suffered his
own mental health issues as a result.
I can never get that time back, those moments when time stands still, that stay with you forever. But I hope that my research, my work, the training for midwives and health professionals I am developing, along with that of my colleague Hayley, will make those moments safer, happier for other Autistic women. For my own daughter if she decides to have children of her own.
Autistic women have the same human rights as anyone else. But true equality is not about everyone getting the same treatment – is is about everyone getting the treatment they NEED.
Autistic women need their specific sensory, social profiles acknowledged and supported, recognising the enhanced anxiety we face daily in navigating a world that does not naturally accommodate our neurotype. We need our pain validated even if it does not look as expected. We need to feel safe and understood – and we need to be informed and included in decisions about our care.
Disparity in healthcare for women and disparity in healthcare for disabled people. The intersectionality of this combined with the complexities of the Autistic experience mean we are at a definitive disadvantage in healthcare, with research showing high mortality rates for those with Autism and/or Learning Disabilities. I am hopeful that Birthrights’ unique focus on human rights during maternity care can be applied to the Autistic experience to great benefit. It could mean improved outcomes for mothers, fathers, and children. It could mean the greatest gift of all – a birth that is safe and happy, a joy to remember.