Nothing About Us Without Us
Journal: MIDIRS Midwifery Digest
Published: December 2017
Title: Supporting women with autism during pregnancy, birth and beyond
This paper outlines ways in which autistic adults can be better supported through pregnancy and childbirth.
Previous research found that autistic women had poorer pregnancy outcomes in terms of preterm births, emergency c-sections, low birth weight, low Apgar score, and perinatal mortality.
Autism is a recognised disability and therefore public bodies such as hospitals are obligated to make appropriate adjustments to ensure autists are not at a disadvantage.
Suggested prenatal adjustments:
- Not requiring autists to wait in crowded waiting rooms, where there is a lot of sensory stimuli, and a pressure to make small talk with other expectant people. They may be able to receive antenatal care at home, or have the first appointment of the day, or be in a quieter waiting area or private room.
- Clear instructions in both verbal and written format about what to expect from the process. Professionals should rely on clear and explicit language, and not rely on hints or facial expressions.
- Ensure that the individual knows exactly what to expect from the labour process, utilising social stories, a physical tour of the maternity ward, and clear explicit language.
- Offer the option of a home birth, where there is reduced sensory stimuli and unfamiliarity.
- Work with the individual to explain unexpected changes, such as increased foetal monitoring,
- changes in due dates, or induced labour.
- Due to hyposensitivity to interoceptive stimuli, or due to alexithymia, autistic pregnant people may be more affected by nausea or foetal movement, and less able to express their feelings to professional. Utilise visual charts and extra time to discuss needs with autistic paitents so they receive the appropraite care.
- Midwives should explain the birth process, including abdominal palpation, vaginal examination, and massage, as well as what this will feel like, both ahead of time and as the action takes place.
- There is a risk of meltdown or shutdown during the labour and birth process. If possible, the pregnant individual or their birth partner should be able to recognise early signs of this to alert staff. If meltdown or shutdown occurs, then sensory stimuli should be removed and the individual allowed to recover alone or with fewer people present. Conversation is not helpful at this time and should be avoided. Overstimulation should be avoided if possible as fear and anxiety have negative impacts on birthing due to the chemicals released.
- Autistic people may be hypo- or hyper-sensitive (or both) to pain. An individual may not feel when they have gone into labour, increasing the risk of unattended birth. Equally, an individual may feel pain much more intensely, and staff need to recognise and respect the individuals own perception of their pain threshold.
- The National Autistic Society has produced a hospital passport which lists an individuals communication needs and preferences, how they experience pain, things which cause distress, and things which can help.
- Autists may struggle with a sense of urgency and prefer calmness. This must be taken into account in emergencies which require fast consent and intervention, including touch, which may not have been planned for.
Suggested post-natal adjustments:
- After birth, the individual may need time alone to process the event, and to deal with overstimulation. This will be difficult on a busy post-natal ward, and so a single room, home birth, or birth at a birthing centre may be more appropraite.
- Structure and clear guidance will be required to transition to parenthood.
- Unless there is significant learning disability or mental health problems, then the individual is fit to care for their baby independently; while support should be given, competence should be assumed.
- Sensory difficulties may arise around breastfeeding and these should be supported.
- If the individual had stress or anxiety prior to the birth, these are also more likely post birth. The individual should be monitored and supported with reference to their emotional health.
- There is a risk of social isolation as autistic parents are more likely to fear others judging their parenting, and may feel unable to set up social interaction for their baby.
- Autistic parents may require support in interpreting their babies needs, as well as with new challenges related to multitasking, and keeping atop of domestic tasks.
This paper refers to autistic women and mothers. However, as autistic people are more likely than allistic people to be transgender or non-binary, this is also an important factor to consider when supporting autistic people through pregnancy and birth. This can be a very stressful time for transgender and non-binary individuals due to the addition of gender dysphoria. It should be essential for professional to use an individuals correct name and pronouns, and avoid gendered euphemisms, such as “lady parts”.