Autism in girls and women is increasingly recognised; subsequently midwives will be caring for more autistic pregnant women and people. In this article midwife Karen Henry, newly appointed lecturer at the University of Suffolk, shares her personal experience and the ways she is involved in improving unequal care.
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Addressing inequity and inequality within maternity services for autistic women
This year I was invited to be involved in a maternity transformation project with the Suffolk and North Essex Integrated care system. The aim of the project is to provide a forum for NHS leaders, local authorities, stakeholders, and communities to work together to improve health and care outcomes through addressing inequity and inequality within services. I was invited because I am an autistic midwife who has been working to improve access to maternity care for autistic women and birthing people. As part of the project, I was involved in filming a ten-minute cultural curiosity film called ‘it’s ok to ask’ where I talk about what it feels like to be autistic and how maternity staff can support autistic women. The films form a set of 11 films covering a vast number of topics which can cause inequality in healthcare. The films can be accessed here: https://vimeo.com/showcase/9905864
Further information about the project is available here: https://www.sneeics.org.uk/resources/flipbooks/5-year-maternity-equity-plan/
As a student midwife back in 2016, I noticed a reluctance in some midwives to provide care for autistic women which perhaps stemmed from a lack of autism awareness, understanding and training at the time. Even today autism training consists of little more than an online learning package that takes 10-30 minutes to complete so no wonder some midwives feel out of their depth when supporting autistic women.
Autistic women report poor maternity experiences, they feel judged, isolated, stigmatised against and neglected.1 Hospital environments are reported to be sensory overloading due to the different noises, lights, smells and sounds which can cause autistic women to feel disabled and unable to process information.2,3,4 Many autistic women do not tell their midwife they are autistic because they fear being judged and fear having their babies removed.1 This means they are not supported and sit with this fear throughout their pregnancy as well as navigating difficult maternity environments. For women who disclose their autistic status, they feel misunderstood and unsupported, possibly because they appear to manage appointments well due to an ability to mask5 and act in particular ways to fit into society which is exhausting.
Continuity of carer makes a difference to how women perceive maternity care. They feel happier when midwives tailor care around their communication and sensory needs. However, many women are not offered reasonable adjustments due to poor staff knowledge6 despite them being a legal requirement under The Equality Act 2010.
As an autistic midwife I have been working on initiatives to create accessible maternity care for autistic women. One such initiative was being supported through The Florence Nightingale Foundation, to create a series of support plans for pregnancy, birth, and the postnatal period.
Download the plans below:
The intention for the plans was to open up conversations between autistic women and maternity staff whereby women can find out what to expect at appointments and they can then share any adjustments to be made to make appointments and care accessible for them. Some ideas include extra time for antenatal appointments, appointments at quieter times of the day, to be accompanied or record conversations to enable more processing time, visits to the labour and postnatal wards so they are more familiar if they go into hospital at all plus having access to a single room may be beneficial. The film has lots more ideas for reasonable adjustments, plus I have written an article for the Practising Midwife journal with more ideas which will be published in 2023.
Another initiative I am part of is a collaboration with other autistic midwives, authors, educators, researchers, and health professionals who have formed a maternity autism
research group (MARG). Our aim is to improve the experiences of autistic people accessing maternity services by signposting information and resources through a website that holds autistic people at the heart of everything we do. The website is still early in its development, and it is hoped that MARG will become an accessible and comprehensive resource for the latest high quality, neurodiverse positive research, information, resources and training for maternity professionals and autistic people. The research group meets at least once a month to discuss advancing research in the field within social and biopsychosocial models of autism. The website can be accessed here: https://www.maternityautism researchgroup.co.uk
It is important for research and information to be led by autistic people because for a long time, autism was studied from an outsider’s perspective, often through the lens of autism being a deficit.7 Early autism research was conducted by men such as Hans Asperger and Leo Kanner who studied young autistic boys and because of this, it is often assumed that autism mainly occurs in boys or that it is something which can be grown out of which is simply not true.8
Autistic people have differences in how they experience the world yet, obtaining a diagnosis is difficult for women because the diagnostic criteria is based upon the behaviours of autistic boys and the research by Kanner and Asperger. Autistic girls appear to learn to imitate gestures and facial expressions from others, plus they learn social scripts and the importance of eye contact which enables interaction with others. This is known as masking or camouflaging which, all autistic people consciously or unconsciously do to be able to fit in with society despite it taking a lot of energy and potentially leading to burnout.9
Autistic girls are more likely to be undiagnosed, diagnosed as adults when they have autistic children, or they are misdiagnosed with other conditions such as a learning disability, learning difficulties such as ADHD or medical conditions like Epilepsy or Ehlers Danlos Syndrome which then overshadow other conditions. Undiagnosed girls may be found under the care of social services with perceived behavioural problems, poor school attendance,10 and may also be victims of abuse including sexual abuse due to their vulnerability. Undiagnosed girls may also be found in mental health services with poor mental health, stress, anxiety, and depression where autistic women are more likely to die by suicide than autistic males.11 It is important therefore, for midwives to be mindful to consider undiagnosed autism in women booking with a similar history. It is not for us to be diagnosing them but any of those experiences can impact experiences during the perinatal journey, so it is important to curiously delve beneath the surface and consider offering care adjustments and referral to specialist support.
The message I want to portray in this article is that whilst autism is deemed to be an invisible difference (or a disability to some), it does not have to remain hidden because this is associated with being out of sight and so out of mind. I feel that autistic women and maternity professionals can work together to co-create individualised, welcoming, and accessible care.
My passion for sharing this knowledge and improving maternity services for autistic women stems from me being an autistic woman, a midwife, and a mother of an autistic daughter who may access maternity care at some point. I feel that midwifery is not just a job, it’s our identity which is modelled around kindness and wanting to provide excellent support and care to women. We have the potential to change future maternity care experiences for autistic women when we are armed with knowledge of the difficulties some autistic women may have when accessing maternity care and the practical things that may make a difference.
References
- Pohl, A.L., Crockford, S.K., Blakemore, M. Alison, C. and Baron-Cohen, S. (2020) ‘A comparative study of autistic and non-autistic women’s experience of motherhood’. Molecular Autism11(3).
- Burton, T. (2016) Exploring the experiences of pregnancy, birth and parenting of mothers with autism spectrum disorder. [Accessed on 2nd August 2020] https://pdfs.semanticscholar.org/5cca/93654dc6151211a9154c6fe1d36f989baca4.pdf
- Grant, L. (2015) From Here to Maternity. London: Jessica Kingsley Publishers.
- Hendrickx, S. (2015) Women and girls with autism spectrum disorder. London: Jessica Kingsley publishers.
- Blakemore, M. (2017) Autism, Pregnancy and Motherhood: Special report says women overcome systemic abuse to become great mums. [Accessed on 15th August 2020] https://www.amaze.org.au/2017/09/autism-pregnancy-and-motherhood-special-report-tackles-systemic-abuse/
- Hampton, S. (2020). Autistic mothers and the perinatal period: maternal experiences and infant development. D. The University of Cambridge.
- Fletcher-Watson, S. and Happe, F. (2019) Autism: A new introduction to psychological therapy and current debate. Oxon: Routledge.
- Prizant, B. (2019) Uniquely Human. London: Profile books.
- Lai, MC., Lombardo, MV., Ruigrok, ANV., Chakrabarti, B., Auyeung, B., Szatmari. P., Baron-Cohen. S., MRC AIMS Consortium (2017) ‘Quantifying and exploring camouflaging in men and women with autism’ 21 (6), pp. 690-702. United Kingdom. Sage Publishing.
- Moyse, R. (2021) Missing: the autistic girls absent from mainstream secondary schools.D. University of Reading [Online] [Accessed on 31st May 2021] http://centaur.reading.ac.uk/97405/13/24901800_MOYSE_Thesis_Ruth%20Moyse_Redacted.pdf
- Cassidy, S., Bradley, P., Robinson, J., Allison, C., McHugh, M., and Baron-Cohen, S. (2014) ‘Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: a clinical cohort study’. Lancet Psychiatry.1(2):142-7
December 2022
Karen Henry Midwife and lecturer, Suffolk, UK