What care to expect in pregnancy

So you just found out you are pregnant and are wondering what to do next. Congratulations! you are at the start of your fabulous autistic pregnancy journey.

So like any journey you will need to prepare and have a toolkit and some friends you can call on if needed. Awesome, autistic and pregnant! There is a lot to consider and think about so let’s break it down. Change and transitions are always something we need to prepare for and worry and anxiety is ok as you start this adventure. Here we will explore what you can expect.

You are an expert in your own body

Remember, you are an expert in your own body, what makes you feel good and what you may find challenging. Reasonable adjustments can be made to the healthcare environment to support your needs. Pregnancy is a time when you can advocate your needs and the information here will help and guide your journey.

When you first meet the midwife she will ask you questions about your health and wellbeing and then she will help you plan your care pathway. This video explains about the NHS Personalised Care Plan. This is your own document that you can write in to explain your needs and your expectations for pregnancy. Your hospital should give you one to fill in. You can ask for support filling it in if needed.

Here is an example of an NHS Personalised Care Plan

You can also fill out a hospital passport like the one on the National Autistic Society website, this explains your autistic needs to health professionals and offers them advice about autism as well. Hospital Passport

Autistic Girls Network also has a Healthcare Professional Information Leaflet that you can print off and give to your midwife, explaining about autism and how they can best support your needs.

You can choose which hospital you attend and do not have to go to the nearest one. However, think about the practicalities of attending hospital appointments when deciding. You can explore what is available on hospital websites. You can choose to give birth in a hospital, a midwifery-led unit or your own home depending on what is available in your area. Your midwife will guide you through your choices.

The National Clinical Institute for Health and Care Excellence provides guidelines for care in pregnancy and childbirth. You can read them here Organisation and delivery of antenatal care

Personalised Care and Support Planning in Maternity Services

This short animation explains what Personalised Care and Support planning is in maternity services and what women and families can expect.

Here is a summary of what to expect:

When you first find out you are pregnant you contact the hospital by telephone or online. Some hospitals ask you to fill in a form online. This is the start of your antenatal care. You may see one midwife or a team of midwives in the antenatal period. You can make a request to see the same midwife and for appointment adjustments if needed due to your autistic needs. The NHS England website has lots of helpful information on pregnancy:

https://www.nhs.uk/pregnancy/your-pregnancy-care/

The midwife will take a full medical history and give you lots of advice and information about pregnancy. You will also be offered blood tests, blood pressure and urine checks. This is the first opportunity to discuss your autistic needs. The midwife may or may not have had training in supporting autistic women in pregnancy. So please give her the Autistic Girls Network Healthcare Professional Information Leaflet. You can ask for an extra appointment to go though your autistic needs in more detail so you can plan your care together. You can ask for reasonable adjustments to support your needs, for example; such as asking to see the same midwife at each appointment; attending appointments at quiet times such as the start or end of clinics and considering home appointments due to anxiety, sensory or social needs.

This is the ultrasound scan to estimate when your baby is due and check the physical development of your baby. You will be offered a blood test to screen for chromosomal abnormalities, such as Down’s Syndrome. You can ask for a longer appointment or reasonable adjustments to support your autistic needs. Extra time may need to be arranged in advance.

The midwife will discuss your health and wellbeing and check on the progress of your pregnancy. This will include a blood pressure and urine check and discussion about any blood tests done.

You’ll be offered an ultrasound scan to check the physical development of your baby. This is also known as the 20-week scan.

You’ll have an appointment at 25 weeks if this is your first baby. Your midwife will measure the size of your bump, check your blood pressure and urine.

Your midwife will measure the size of your bump, check your blood pressure and urine. You will be offered another blood test to check your iron levels.

You’ll have an appointment at 31 weeks if this is your first baby. Your midwife will measure the size of your bump, check your blood pressure and urine.

Your midwife will give you information about preparing for labour and birth, including how to recognise active labour, ways of coping with pain in labour, and your birth plan. Your midwife will measure the size of your bump, check your blood pressure and urine.

The midwife will go through your birth plan at this appointment. You may want to request that this is a longer appointment to discuss all your needs for birth in detail. Your midwife will give you information about, breastfeeding, caring for your newborn baby, vitamin K and screening tests for your newborn baby, your own health after your baby is born, the “baby blues” and postnatal depression. Your midwife will measure your bump and the position of your baby, check your blood pressure and urine.

Your midwife or doctor will discuss the options and choices about what happens if your pregnancy lasts longer than 41 weeks. Your midwife will measure the size of your bump, check your blood pressure and urine.

You will have an appointment at 40 weeks if this is your first baby. Your midwife will give you more information about what happens if your pregnancy lasts longer than 41 weeks.Your midwife will measure the size of your bump, check your blood pressure and urine.

Your midwife will measure the size of your bump, check your blood pressure and urine. Your midwife may offer you a membrane sweep and discuss the options and choices for induction of labour.

If you have not had your baby by 42 weeks and have chosen not to have an induction, you should be offered increased monitoring of the baby.

Taking time off from work for antenatal appointments

Find out more about rights to time off for antenatal appointments at the GOV.UK page on working when pregnant: your rights

Who can help you advocate for your needs?

Learning disability nurses can assist midwives in making reasonable adjustments so that women with autism are adequately supported during pregnancy.

PALS Patient Advice and Liaison Service at your hospital can offer confidential advice, support and information on health-related matters and liaise with staff on your behalf if needed.

Maternity Voice Partnership (MVP) in your area – MVP’s work with local NHS Trusts to support service users to access and improve local maternity care. Find your local contact: https://nationalmaternityvoices.org.uk/find-an-mvp/

Private Midwife – You can employ a private midwife to support your pregnancy journey.

Private Doula – You can employ a private doula who acts as an advocate and supporter during your pregnancy, birth and in the early days of parenthood. Find a local doula: https://doula.org.uk/about-doulas/ or a doula Supporting Neurodivergent Birth

If you need to ask for further support and advice about your care you can ask to speak with the Community Midwifery Manager, Antenatal Clinic Midwifery Manager, Labour Ward Manager or Postnatal Ward Manager as required.

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.