Information for Health Professionals about Autism in Pregnancy
Dear Midwife/Health Professional
I am autistic. This means I can find some situations overwhelming and may need extra support and reasonable adjustments during my pregnancy, birth and post delivery. Please have a conversation with me about my needs and how I can be supported. Please allow lots of time for all appointments.
I may find eye contact and direct questions difficult. I may need extra time to process information and to ask questions to clarify my understanding to help manage my anxiety. I may find waiting rooms and hospitals overwhelming due to my sensory needs and may benefit from quiet areas and home visits.
Please read the guidance below:
What is autism?
Autism is a neurodevelopmental condition which can affect how I see, interpret and respond to the world around me. Its core traits include differences in understanding social situations, intense specific interests and difficulties with change, and sensory differences
Far more people are autistic than we think. Some people have a diagnosis and support, while others are undiagnosed with no support in place. Women are less likely to be diagnosed for several reasons. Their autistic traits may be put down to them being emotional or shy. They may ‘mask’ or hide their needs during childhood and adulthood to try to ‘fit in’. This may lead to them having little support in place to deal with the challenges of daily tasks and responsibilities. This can result in social, educational, economic, physiological, psychological, emotional and health inequalities.
Pregnancy, childbirth and motherhood can be a challenge for autistic people as it is a big life transition (Pohl et al 2020). 80 percent of autistic women are not diagnosed by the time they turn 18, meaning that many pregnant autistic women may not have a diagnosis or support in place, or even know they are autistic (McCrossin 2022). Consequently, they may have an increased risk of health inequalities that can affect pregnancy and birth outcomes.
The presentation of autism can be complex, and there may be co-occurring conditions present. Therefore, their needs and vulnerability should be considered even if they are not diagnosed, though it is important to recognise their capabilities and autonomy too. Under the Equality Act (2010) and Autism Act (2009), health professionals have a duty of care to ensure that reasonable adjustments are made.
Autism has a genetic basis, so people with autistic children or relatives may have a higher chance of also being autistic.
Challenges autistic people may encounter:
Each autistic person is different and should be given time to discuss their needs and possible adjustments during pregnancy, birth and parenthood.
However, some challenges may be:
Sensory issues
Autistic people may have sensory difficulties, which can manifest as hyper-sensitivity and/or hypo-sensitivity. Autistic people may be sensitive to sounds, smells, light, tastes and touch. This may make it difficult for them to tolerate certain noises such as breathing or eating, as well as textures such as clothing and bedding. This could lead to distress, exhaustion or melt-downs, so it is important the sensory environment is considered.
Social understanding and interaction:
Some autistic people may need you to avoid slang, metaphors and idioms, and to be precise and direct in giving instructions. They may have difficulty interpreting facial expressions and tone of voice. It may also be challenging for them to make decisions quickly and may need extra information and time to plan. Autistic people may have difficulty regulating their behaviour and emotions and may not always feel able to fully articulate their feelings, desires and needs. Also, they may have difficulty with interoception, making it harder for them to recognise feelings in their body, such as pain, postpartum bleeding, bowel and bladder function.
Extreme anxiety:
Autistic people may experience high anxiety in new places and when meeting new people, and may find changes in routine and unexpected events anxiety-provoking. They may need more information and time to consider decisions and may need a family member present to feel safe. Childbirth can be extremely overwhelming for autistic people (Taylor 2014). This may result in a ‘shutdown’ or ‘meltdown’, which can be scary and exhausting. Time, space and privacy will be needed to recover. Some people may cope through non-attendance and non-compliance with medical care, driven by a heightened sense of extreme anxiety. Consequently, this can lead to them becoming extremely anxious throughout pregnancy and parenthood with the increased risk of experiencing health inequalities (Samuel et al 2022).
Co-occurring conditions and complex presentation:
Increased prevalence of co-occurring conditions for autistic people:
| Condition: |
| Learning issues Dyslexia, Dyscalculia, Dysgraphia, Dyspraxia |
| Irlens Syndrome |
| Sensory processing issues |
| Attention deficit hyperactivity disorder (ADHD) |
| Obsessive compulsive disorder (OCD) |
| Connective tissue disorders, Ehlers-Danlos syndrome, Hypermobility |
| Eating disorders |
| Non-binary/gender fluid |
| Fragile X |
| Fibromyalgia |
Sources: Bush et al 2021, Hampton et al 2021, Warrier & Baron-Cohen 2021, Hampton at al 2022, Samuel et al 2022
How can you support my needs?
How to help using the SPELL framework, (National Autistic Society (NAS) 2021):
| Plan of care | Care provision in labour | |
| STRUCTURE | Having a predictable routine and environment can help an autistic person feel calm, safe and in control | Continuity of carer model is a good care plan, discussing care and processes clearly to help support the woman’s expectations. Allow hospital visits prior to labour to manage expectations and concerns |
| POSITIVE | Be positive, kind and understanding without bias — especially in new situations and challenges | Support the woman’s decisions and explain procedures, take her lead Avoid direct eye contact, direct language or demands, chose wording carefully |
| EMPATHY | Use empathy to communicate to reduce anxiety and distress | ‘Tell me what you need to make it OK’
Be accepting of behaviour that may be needed without judgement, condemnation or bias |
| LOW AROUSAL | Low sensory environment may help reduce anxiety | Low lights, sounds, no small talk |
| LINKS | Help create and maintain links to a support network — family, friends and professionals Ensure the woman has support with family and friends | May need extra support to adjust to parenthood Ensure clear links and updates are in place with GPs and health visitors prior to discharge |
Note on Use of language:
Language is personal to each woman; if unsure, always ask. Some women may prefer ‘person-first’ language (for example, ‘person with autism’) and some may prefer ‘identity-first’ language (for example, ‘autistic person’). Kenny et al (2016) found that there was preference for ‘autistic’ as opposed to ‘a person with autism’. However, this is not always the case and each person should be taken on a one-to-one basis and asked their preference.
It is also worth noting that current terminology is autism/autistic spectrum, autism spectrum condition (ASC), and neurodiversity. This supersedes previous language, such as Asperger’s Syndrome and autism spectrum disability/disorder, an evolution from the use of ‘deficit-based language’.
However, again, each individual will have personal preferences and may prefer these terms due to the common practice at their time of diagnosis.
Thank you for reading this leaflet and considering my needs.
Further information and training:
Autistic Girls Network
https://autisticgirlsnetwork.org/
Autistic Girls Network is a registered charity working to support, educate, and bring change for autistic women and girls.
Royal College of Midwives i-learn module on Autism and Pregnancy:
Maternity Autism Research Group MARG
https://www.maternityautismresearchgroup.co.uk/
Health Professionals and Researchers working together to improve the experiences of Autistic people accessing services related to pregnancy and early parenting by signposting information and resources.
Autistic Parents UK
https://www.autisticparentsuk.org/
Autistic UK
We represent Autistic people in the places where services are designed, decisions are made and whole communities are affected. At the moment, this includes the NHS, the North Wales Police, Welsh Government and local government in Manchester and Derbyshire.
National Autistic Society
References:
Autism Act 2009 (c.15). London: The Stationery Office. https:// www.legislation.gov.uk/ukpga/2009/15/contents
Bush HH, Williams LW, Mendes E (2021). Brief report: asexuality and young women on the autism spectrum.
Journal of Autism and Developmental Disorders 51(2):725-33. Department of Health and Social Care (DHSC) (2021).
The national strategy for autistic children, young people and adults: 2021 to 2026. https://www.gov.uk/government/publications/ national-strategy-for-autistic-children-young-people-and-adults2021-to-2026/the-national-strategy-for-autistic-children-youngpeople-and-adults-2021-to-2026
Equality Act 2010. (c.15). London: The Stationery Office.
https://www.legislation.gov.uk/ukpga/2010/15/contents
Fox D. MIDIRS Midwifery Digest, vol 32, no 3, September 2022, pp 279-282.
Hampton S, Allison C, Aydin E, Baron-Cohen S, Holt R (2022). Autistic mothers’ perinatal well-being and parenting styles. Autism: The International Journal of Research and Practice.
Hampton S, Man J, Allison C, Aydin E, Baron-Cohen S, Holt R (2021). A qualitative exploration of autistic mothers’ experiences II: childbirth and postnatal experiences. Autism: The International Journal of Research and Practice.
Ingudomnukul E, Baron-Cohen S, Wheelwright S, Knickmeyer R (2007). Elevated rates of testosterone-related disorders in women with autism spectrum conditions. Hormones and Behavior 51(5):597-604.
Kenny L, Hattersley C, Molins B, Buckley C, Povey C, Pellicano E (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism 20(4):442-62.
McCrossin R (2022). Finding the true number of females with autistic spectrum disorder by estimating the biases in initial recognition and clinical diagnosis. Children 9(2):272.
National Autistic Society (NAS) (2021). The SPELL framework https://www.autism.org.uk/what-we-do/professional-development/ the-spell-framework
National Autistic Society (NAS) (2022). What is autism?
https:// www.autism.org.uk/advice-and-guidance/what-is-autism
Pohl AL, Crockford SK, Blakemore M, Allison C, Baron-Cohen S (2020). A comparative study of autistic and non-autistic women’s experience of motherhood. Molecular Autism 11(3).
Samuel P, Yew RY, Hooley M, Hickey M, Stokes MA (2022). Sensory challenges experienced by autistic women during pregnancy and childbirth: a systematic review. Archives of Gynecology and Obstetrics 305(2):299-311.
Simantov T, Pohl A, Tsompanidis A, Weir E, Lombardo M, Ruigrok A, Smith P, Allison C, Baron-Cohen S, Uzefovsky F (2022). Medical symptoms and conditions in autistic women. Autism: the international journal of research and practice 26(2):373-88.
Taylor M (2014). Caring for a woman with autism in early labour. British Journal of Midwifery 22(7):514-8.
Warrier V, Baron-Cohen S (2021). Childhood trauma, life-time self-harm, and suicidal behaviour and ideation are associated with polygenic scores for autism. Molecular Psychiatry 26(5):1670-84.
With thanks to Diane Fox, Midwife, researcher and Neurodevelopmental Practitioner and co-Chair of MARG (Maternity Autism Research Group) – a collective of professionals and researchers who are autistic and working to promote awareness of autism in Maternity Services for providing this material.