Autism Awareness Day: guest blog by Hayley

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 why 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.

The autistic birth experience is not necessarily an inherent part of public discourse around birth, disability and health care. Yet, despite evidence showing that autistic people have been part of society for millennia, there is a dangerous lack of awareness about how autistic people give birth.

To take advantage of all the useful narratives and information swirling around social media during Autism Awareness Month, bringing this much-needed topic to the public consciousness is long overdue. I have written personally for years about my experiences of birth and parenting as an autistic woman – my first birth as an undiagnosed woman was certainly a lesson in bad practice, my second birth was overwhelming empowering and positive. However, I hadn’t changed. I was born autistic. How could the same person experience pregnancy and birth so differently, even when the pregnancies themselves were very similar?

My first pregnancy was an unpredictable force of nature, a tornado of failed expectations and instability, created by a health service that had never (knowingly) cared for an autistic woman. But they weren’t alone, I was unaware of my own neurotype and struggled to identify why I wasn’t experiencing the blissful autonomy and self-confidence other new Mums had. From the moment I read my positive pregnancy test, my hands and arms flapping like a happy sparrow in a dust bath, my expectations were rooted in media depictions of pregnancy and birth. The intimate, reliable rapport with my midwife was something I had been told was my destiny, but this story was not to be. With no continuity in care, I never saw the same person twice, deeply exacerbating my problems with social communication and difficulty with changes to routine.

Once I developed Gestational Diabetes, the lack of autonomy over my body intensified. Where, like many autistic people, I relied on fact-sharing as a basis for my conversations, creating visible frictions in medical appointments that I couldn’t understand. What I could understand, however, was the numbers. Black-and-white, controllable blood sugar levels that were my anchor in a sea of discourse built for neurotypical mothers. These were tiny acts of sacrifice, where I tried to claw back my dignity as a Mum-to-be with no other way of expressing it.

This echoed along other symptom-reporting, too, particularly pain. As my recent systematic review of existing evidence showed, autistic people experience pain differently. In terms of touch, cold and heat we sense these things far sooner, whereas deep ‘true’ interoceptive pain is something we have a higher tolerance for. Further work suggests that if sensory preferences are taken into consideration, pain communication and reporting is improved.

However, my birth plan suggestion of ‘no lights, no music or shouting’ was ignored. Coupled with problems in initiating conversation, this gave an overall sense that I was lacking any choice, any dignity over my pregnancy and baby. “The NHS owns this pregnancy, not me” was something I remember telling my husband during the first precious days at home after birth.

What Emma and I want to work towards is that no autistic woman is at a disadvantage because of who she is. We do not want to blame autistic bodies, autistic brains for the problems. It’s a lack of education and awareness on female autism presentation and co-occurring conditions that would lead the way to improvements here. With examples of good practice models available with Mental Health Specialist Midwife roles, we intend to provide training to midwives and doulas across the UK. Autonomy over your birth experience is something we want to put back in the hands of autistic women, as a basic human right.

Autism Awareness Day: guest blog by Emma

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.

Birthrights responds to the CQC’s national maternity survey

Commenting on the findings of the CQC’s national maternity survey, Amy Gibbs, Chief Executive of Birthrights, said:

“It’s positive that overall 88% of women surveyed felt they were ‘always’ treated with respect and dignity during labour and birth, but other findings highlight areas where maternity care is failing to respect women’s basic rights.

“Every woman has the right to choose where and how she gives birth, yet 15% said they were not offered any choices about where to have their baby and a quarter said they were not always involved enough in decisions about their care during labour and birth.

“Above all, the findings underline how vital continuity of carer is to improving women’s maternity experiences, giving them time and space to ask questions and make decisions that are right for them. We know that seeing the same midwife through pregnancy, birth and afterwards can make all the difference and help ensure safety goes hand in hand with dignity and respect. Yet only 15% of women reported that the midwives who cared for them during labour and birth had been involved in their antenatal care.

“It’s clear we need renewed commitment and drive at national and local levels, to ensure the vision of Better Births is achieved for most women to have continuity of carer by 2021.”

The full findings of the CQC’s maternity survey 2018 can be found here.

Birthrights responds to the NHS Long Term Plan

Responding to the publication of the NHS Long Term Plan today, Amy Gibbs, Chief Executive of Birthrights, said:

“We are really pleased to see improving maternity care at the heart of the NHS Long Term Plan, particularly the commitment that most women will receive continuity of carer by March 2021. We know that seeing the same midwife through pregnancy, birth and afterwards can make all the difference to women’s experiences and help ensure safety goes hand in hand with dignity and respect. This ambition must be backed up by investment in recruitment, retention and training, so NHS trusts up and down the country can make this pledge a reality for all women and midwifes are equipped to deliver rights-respecting care.

“We also welcome the goal to give more women access to mental health support following birth. In line with the Plan’s general focus on prevention, we would like to see equal effort on doing everything possible to avoid trauma during birth. How women are treated during their pregnancy and childbirth is a major driver for whether they experience trauma, so it is vital that delivery of the NHS Long Term Plan embeds respect for women’s rights to dignity, autonomy, privacy and equality explicitly into maternity care.”

Notes
The new NHS Long Term Plan includes commitments to:
  • reduce stillbirths and mother and child deaths during birth by 50%
  • ensure most women can benefit from continuity of carer through and beyond their pregnancy, targeting those who will benefit most
  • expand support for perinatal mental health conditions

Reflections on 2018

Four weeks into being Birthrights’ new Chief Executive, I’m feeling very lucky to lead such a brilliant organisation and brimming with positivity and ideas for 2019. I’m blessed with a very talented team, engaged and expert Trustees, supportive funders, invaluable partners and a wider enthusiastic pool of people who share our mission to improve women’s experience of pregnancy and childbirth by promoting respect for human rights.

As 2018 draws to a close, we wanted to share our highlights from the year. And since it’s Christmas, here are our top 12. I’m so impressed by how much has been achieved by our small but perfectly formed team – showing why #smallbutvital charities are so important. Clearly, I can take no credit for these and my thanks goes to the team and my predecessor, Rebecca Schiller, who I’m delighted will be joining the Board of Trustees next year.

In 2018, we’re proud to have:

  1. Launched our biggest campaign yet on the right to maternal request caesarean section
  2. Responded to over 170 email requests for advice from women in need
  3. Seen our online factsheets visited over 7,000 times – a 7% increase on 2017
  4. Delivered 18 speaking engagements or training sessions to healthcare professionals
  5. Strengthened our links with NHS England, the Royal College of Obstetricians and Gynaecologists, Royal College of Midwives, General Medical Council, Parliamentary and Health Service Ombudsman, Public Services Ombudsman for Wales
  6. Engaged with the Maternity Transformation Programme Stakeholder Council and numerous NICE consultations
  7. Secured a new grant from the Esmée Fairbairn Foundation to expand our team and impact
  8. Progressed our Baring Foundation and Trust for London funded work on women with complex needs
  9. Welcomed new team members, trustees, Associate Trainers and accountants on board
  10. Improved our financial systems and capacity to report on budgets and grants
  11. Deepened our partnership with Leigh Day and explored other corporate partnerships
  12. Continued our crucial collaborative relationships with Birth Companions and BPAS

And much more besides… Merry Christmas and thank you to all our funders, supporters and partners – I look forward to meeting and working with you in 2019!