[Video/audio reading available soon]
Evidence suggests a strong and trusting relationship between the pregnant person and their midwife can improve birth outcomes (Homer, 2019). This is an important one to consider for Austistic people as building relationships with health care professionals can be a very different process to people of other neurotypes. Does your midwife have a positive and accurate understanding of Autism? Do they understand your communication style, sensory needs and signs of overwhelm? If they don't this could have a negative impact on how you feel about pregnancy, birth and yourself as a parent.
What can you do?
Open discussion about being Autistic with your care provider early on if you can. The NHS can be slow moving and tied up with policy, you are more likely to have your needs met if you ask early, clearly and repeatedly. Give your HCPs information on your needs and required accomodations, this can be written down if you find it difficult to speak or communicate your thoughts during appointments.
Having good support present at appointments if possible can be good way to build a positive relationship with your HCPs and to feel more at ease in an unfamiliar environment
Recording your appointment in voice note or in talk to text software (there are a number of free options out there). Some Autistic parents have shared that this worked well for them and that they felt as though their midwife was more respectful. One Autistic person told me that they found a talk to text app on their phone very helpful in processing information. They were able to read the text in realtime, along with listening to their midwife speak, also giving them an anchor and focus.
You have a right to choose your care provider. If your midwife is lacking in knowledge about your needs as an Autistic person and individual and unwilling to learn in order to accommodate, you can request a different midwife. This can feel difficult for many Autistic people, but you could do this in writing or with the support of an advocate. We have written a template letter requesting change of care provider here.
Some NHS trusts in the UK already have a Continuity of Care scheme- where every pregnant person will have a small team of named midwives to care for them through the whole perinatal period. This is being rolled out nationwide but is fairly slow. The idea is to have more time to get to know your midwives to build that trust.
In some areas home birth teams offer much more individualised care and this doesn’t mean you need to give birth at home. You can move to hospital care at any point in your pregnancy or during labour if that is what works best for you.
You could consider hiring an independent midwife and/or a doula if you have the funds or if you can access free charitable services.
An independent midwife will take time to get to know you, will usually be able to do antenatal appointments within your house and accompany you to any appointments that may need to take place in a hospital (such as scans). They can talk with you in detail about options available to you and evidence behind those choices. They can be a source of support.
A doula isn’t a health care professional but will also build a relationship with you and offer support and advocacy. A doula can act as a guide through unknown territory.
You can interview either a midwife or a doula before you hire them to ascertain how comfortable and experienced they are with supporting neurodivergent clients.
Talking to other Autistic parents who have navigated the system can be very beneficial, expectant parents are welcome to join our Autistic only Facebook group or to contact us to discuss other methods of support.