Maternity Care for Highly Sensitive Women
Birth is a challenge to the senses of any woman but imagine what pregnancy, birth and parenting would be like for a woman who has sensory processing difficulties as well as difficulties with reading and interpreting social cues, body language and spoken language.
Autism Spectrum Disorder (ASD), which includes Autism and Asperger syndrome, is a neuro-biological disorder that affects the way a person communicates, socialises, processes information and adapts to the environment. About 1 in 150 children are diagnosed with an Autism Spectrum Disorder (ASD) every year and about 1 in 4 of these are girls. With more and more children being diagnosed with an ASD each year, it’s a fairly safe bet that more and more ASD-affected women will go on to have families. I am one of many women on the higher-functioning end of the Autism Spectrum who has done just that.
The needs of women with ASD are never less considered than when they are preparing to give birth and parent a baby and this is reflected in the dearth of research on the needs of women with disabilities during the maternity episode. In a search of a major medical and health database, Ovid, only a smattering of literature was found that looked at the needs of pregnant and birthing women with learning disabilities and none (at the time I did the literature review) specifically that addressed the needs of women with a diagnosis of an ASD.
Most research that covered disabilities was focused on family-planning for women with intellectual disabilities rather than support throughout pregnancy, birth and the early parenting period. Some literature identified a need for support from a specialist nurse or special needs advisor in conjunction with a primary carer for gynaecological procedures and maternity care (Broughton, 2000 & 2002, Brown, 2001). One paper identified the need for greater education of practitioners in the area of supporting women with learning disabilities throughout the pregnancy, childbirth and early parenting continuum (Culley et al, 1999). Another paper identified women’s experiences of healthcare in relation to their sexuality and reproductive rights (Dotson, 2003).
For women with ASD, pregnancy, birth and early bonding and parenting may present some special challenges, particularly in the area of sensory processing. Childbirth is a physiological event that challenges most women. Women’s senses are much more alert during pregnancy—sense of smell, sense of touch, taste and sound. But in the labour room, they are even more heightened– even the slightest wiff of bad breath can send a labouring woman into a spin and unwanted sound can be highly distracting and even distressing.
Labour and birth in a conventional acute care setting (ie. in large hospitals) is a poor environment for many women but could be even more so for someone with sensory processing difficulties. For instance, in a conventional setting, there are constant interruptions. People walk into rooms unannounced and women have multiple care providers who are strangers to them (that is, the first time they meet them is often during labour and birth). In postnatal wards women again deal with constant interruptions, multiple caregivers giving them multiple directions on how best to care for themselves and their babies. This can cause stress for anyone, let alone for a woman who does not like to be touched at all or finds strangers threatening and questions and verbal directions confusing.
When I had my first baby, I remember feeling overwhelmed at the brightness of the rooms, the lack of privacy and lack of relationship with my care providers. That first birth resulted in a caesarean primarily because my emotional and physiological needs were not being met. In a subsequent birth, I enjoyed the care of a midwife I had gotten to know throughout my pregnancy and together we worked through any issues that were bothering me. Throughout the pregnancy anxiety was a huge problem. I live with a high level of anxiety in my day to day life anyway, as talking to people is extremely stressful for me. I often don’t know what to say, or what to ask and as a result, sometimes end up saying and doing things that inadvertently offend others.
During that pregnancy trust was extremely important. For me to feel safe I needed to know that my care providers liked me for who I was, social faux-pas and all. I kept a diary with a list of my needs and fears and each antenatal visit we’d address these. During labour I was highly sensitive to touch, smell and noise. In daily life, too much noise confuses me and certain noises make me feel physically sick. Sometimes when my children get too rowdy I need a quiet space to retreat to (or earmuffs) in complete silence. Being touched was also a major challenge for me. If someone touches me lightly it makes my skin crawl. I need firm pressure or the sensation is intolerable. I also need this pressure to calm down when I feel anxious or overwhelmed. My midwife was extremely sensitive to my needs and I believe this contributed to my ability to labour well and give birth naturally to a healthy baby boy.
The fragmented nature of our maternity care system means that once women have had their babies they are thrust out into the community with very little ongoing postnatal care. In countries such as the Netherlands and New Zealand, women have up to six weeks postnatal care by their known midwife before entering the child health system. In Australia, for the majority, once women leave hospital they have no such support.
For women with an ASD this lack of support presents even more issues than just getting through birth. Most women struggle to read their babies’ cues in the early weeks following birth, particularly if they’ve had difficulty bonding with their babies because of a high intervention birth and problems breastfeeding. For women with ASD, extra support may be needed to help them understand the messages a baby sends. If you are a woman who does not perceive danger or is unable to translate the different cries, body movements and sounds a baby makes, early parenting can be a very confusing and difficult time.
Sadly, In many Western countries it is routine policy to simply remove a baby from a mother’s care if the mother has an intellectual or learning disability. While some with ASD may feel unable to cope with parenting a small baby, or may indeed present with seemingly insurmountable challenges, they at least deserve a chance to learn the skills they need in a way they can understand and cope with. Many women, especially women with ADHD and high functioning Autism or Aspergers Syndrome, are certainly capable of caring for their babies. But as we are well aware, the type of care that women with ASD may benefit from the most is the type of care that is in high demand and very short supply in Australia.
Broughton, S. and Thomson, K. 2000, ‘Women with learning disabilities: risk behaviours and experiences of the cervical smear test’, Journal of Advanced Nursing, vol. 32(4), pp. 905-912.
Brown, B. 2001, ‘The introduction of a special needs advisor’, British Journal of Midwifery, vol. 9(6), pp. 348-351.
Culley, L. and Genders, N. 1999, ‘Parenting by people with learning disabilities: the educational needs of the community nurse’, Nurse Education Today, vol. 19(6), pp. 502-508.
Dotson, L., Stinson, J., and Christian, L.A. 2003. “People Tell Me I Can’t Have Sex”: Women with Disabilities Share Their Personal Perspectives on Health Care, Sexuality and Reproductive Rights. Hawthorn Press Inc.
Thanks for this article, Caroline. In a country where the needs of birthing women are often misunderstood or overlooked, it is valuable to read this information about how labour and birth (and the care provided) can pose another layer of challenge to women with sensory processing difficulties.
Specifically, what would you say are the things that care providers can do to best meet the needs of these women? And can you see how we as a community can create this kind of care environment?