It is important to recognise and support the needs of all who access the maternity services. Dr Aimee Grant, Senior Lecturer, Centre for Lactation, Infant Feeding and Translational Research (LIFT) , Swansea University, shares ways midwives can make a difference to Autistic women and birthing people
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Over the past few years, I have spent a lot of time asking Autistic people [see note 1 below] about their maternity experiences. Something that has come through clearly is that UK maternity care is not currently designed to meet the needs of Autistic people. This includes staff misunderstandings of what Autism is which can result in needs going unmet, and Autistic people feeling that they were not listened to, or that their concerns were dismissed.
Alongside this, on a national level, it is really clear that NHS midwifery care is struggling due to lack of investment and consistent under-staffing. The Royal College of Midwifery (RCM) calls this a crisis. The fact that so many midwives work beyond the end of their shift without pay shows that the issues Autistic people are identifying are systemic; they are not down to individuals.
Recently Dr Rebecca Ellis and I reviewed the evidence on ‘health passports’ for Autistic people and found that there were so many contextual barriers that they could not work; these are shown in the image (Fig 1) below. I feel like those same constraining forces could be impacting on birth plans and care for Autistic people more generally in maternity services.
Fig 1. Barriers to the use of Autism Health Passports in healthcare contexts, © Rebecca Ellis]
Because of this challenging healthcare context, I worked with Autistic UK and Autistic Parents UK to identify Autistic peoples’ common questions about maternity care. We then worked with Autistic parents and Autistic health professionals (including midwives, lactation consultants, an occupational therapist, an anaesthetist and a social worker) to develop a suite of over 100 videos aimed at Autistic people who are pregnant, and all of those who support them. Around half of these videos are primarily educational content delivered by health professionals. The other half contain the lived experiences of Autistic parents, who describe their feelings during key parts of the maternity journey. I would encourage you to share these with any Autistic people you support, so they can get an understanding of what might be about to happen at various stages of maternity care.
Fig 2: Autistic pregnancy, birth and beyond: your questions answered
To go alongside these resources, I wanted to give you some brief information that may build on your understanding of Autism, including how it might affect pregnancy and offer some advice on communicating with Autistic people, as well as links to resources that can make the maternity environment more Autism-friendly.
- The Double empathy problem
The double empathy problem is arguably the most important theory of Autistic/non-Autistic communication. It states that non-Autistic people are not currently required by society to try to empathise with Autistic people, so they generally don’t. On the other hand, Autistic people spend a lot of their time “masking,” that is mimicking the communication style of non-Autistic people, to fit in. However, masking takes a lot of energy (imagine you have to be an actor, in addition to everything else you have to do on a day-to-day basis), and long-term masking results in negative impacts to mental health. As such, it is argued that non-Autistic people should aim to learn about Autistic communication to reduce miscommunication.
- Autism-specific maternity issues
As well as the usual challenges that come up during pregnancy, Autistic people are more likely to have additional issues. During pregnancy, Autistic people’s challenges with the sensory world increase, and this continues in relation to breastfeeding. My research has shown that this increase in sensory sensitivity can lead to higher levels of anxiety and discomfort, as well as additional meltdowns and shutdowns. Both can lead to Autistic people who usually speak being unable to speak or finding it incredibly energy-draining to speak.
Many things can feel challenging from a sensory point of view which can impact maternity care. For instance, taking the example of an ultrasound scan, below are some potential issues and solutions:
- the gel on the abdomen can feel horrible (sticky, cold etc); allowing the person to apply it themselves may help, giving plenty of tissue to remove the gel afterwards may help;
- the noise of the heartbeat can feel very loud; asking if they would like the sound to be turned down before starting could help; and
- the pressure of the doppler on the tummy can feel intense; before starting tell the person that they will likely feel some pressure and that they can ask for the scan to stop or be paused if it’s too much will help with feelings of being overwhelmed.
In addition, Autistic people are more likely to have a range of co-occurring conditions, such as hypermobility (including Ehlers Danlos Syndrome (EDS)), which has implications for pelvic pain. We may not be diagnosed with this, but you can quickly assess hypermobility and can give advice on known issues.
- How to communicate effectively with Autistic people in healthcare
Autistic people may find it difficult to process spoken or written words, and this will be increased if the sensory environment is challenging, such as background noise, bright lighting or strong smells…all of which are common in hospital! This means Autistic people may need extra processing time. You can help provide this by:
- Allowing time after you have asked a question before speaking again
- Asking one question at a time
- Using clear and direct language, such as “have you experienced any bleeding?” rather than “is everything ok?”
Autistic people are likely to be anxious during maternity appointments and may need to ask for clarification and additional information in order to understand what is happening to them, or what they are required to do. Try to:
- Answer these questions using unambiguous language
- If possible, provide written information or direct them to reputable online content (such as the NHS website or the Autistic pregnancy, birth and beyond: your questions answered resources)
- Also, many people Assigned Female At Birth (AFAB) may not get their Autism diagnosis until after their children are diagnosed
In addition to everything else, you should always consider that a patient might be Autistic. This is particularly relevant for those AFAB, as my research shows that they often get diagnosed after their child is diagnosed.
- Accessing healthcare is hard for us
It is widely acknowledged that Autistic people struggle to access healthcare, and that this has negative impacts on their health. My participants reported this in relation to all healthcare, including maternity care. A range of changes have been recommended to make spaces more Autism-friendly (see resources below). Some of these are easy for individuals to adopt, such as offering to turn off bright lights, others may need more thought such as providing a way for patients to access care that does not require phoning the maternity unit (such as being able to text or email), and providing continuity of carer.
Note 1: I use the term “Autistic people” as there is a higher rate of non-cis gender identity in the Autistic community, and this is particularly the case in those Assigned Female At Birth, and in my research a clear preference for gender neutral language has been stated.
Further resources
Follow Aimee Grant’s research:
- Dr Aimee Grant Autism from menstruation to menopause Facebook group
- Twitter: @DrAimeeGrant
- Any questions, drop me an email: [email protected]
Maternity and Autism:
- Maternity and Autism Research Group – MARG is a group of Autistic maternity professionals and researchers. The website contains links to first hand accounts, research and resources
- Autistic pregnancy, birth and beyond: your questions answered – a selection of videos created by Autistic health professionals and Autistic parents
- Autistic Parents UK – A group of Autistic parents, including many with professional expertise in maternity (lactation consultant, MSW, antenatal class teachers etc). APUK offer peer support for Autistic parents and regularly host events.
- Supporting Autistic people with breastfeeding
Improving the accessibility of healthcare environments for Autistic people:
- Participatory research with Autistic people from Dr Gemma Williams and colleagues on how to increase the accessibility of healthcare for Autistic people More that Words (report, animation)
- A framework provided by Autistic doctors, led by Dr Mary Doherty, Autistic SPACE
Dr Aimee Grant
Senior Lecturer | Wellcome Trust Career Development Fellow
Centre for Lactation, Infant Feeding and Translational Research (LIFT)
Swansea University
September 2023