Maternity my way

After finding there was no advice out there for autistic parents, Alexis Quinn decided to fill the gap to put mothers in control around childbirth

Alexis Quinn and Farr

Just over a decade ago, I gave birth to my daughter Abi.

In many ways it was unremarkable. Compared to other parents’ birth stories, mine was not particularly horrid, gruesome or eventful. My daughter was healthy. I went on my way with my bundle of joy.

I was grateful that both Abi and I were OK. But I didn’t feel right during my pregnancy, birthing or postnatal period. It was like I was treading water to survive. Attending appointments and managing the overwhelming sensory experiences were unbearable. What was up? I didn’t know.

By the time I had decided it was time to have another baby seven years later, I had learned I was autistic. I looked up “autism and pregnancy”, “autistic mothers” and combinations of “autism”, “mothers”, “fathers” and “parents”.

I found reams about how to avoid having an autistic child. I saw a whole load of stuff about how difficult it is to look after autistic kids. There was nothing – and I mean nothing – on managing pregnancy, childbirth and the post-natal period for autistic mothers. Where were the relatable, powerful autistic female role models in film, TV or any form of popular culture? Where were all the autistic parents?

Having my second baby (my son Farr, now three), was different.

In between my two children’s births, I experienced a multitude of human rights abuses during involuntary confinement on a section in the English mental health system, which I have detailed in my memoir, Unbroken. These experiences got me thinking. I realised that my pregnancy and birthing experience was the result of being medicalised and objectified.

During my second pregnancy, I decided to take control.

I was active in my care, not a passive recipient. I controlled when I had appointments and where they happened. I made sure that I understood everything. I even insisted that I receive a follow-up summary email to ensure I had understood everything correctly. This reasonable adjustment made all the difference.

Choice and control

I also made a routine, organised my days and planned for the baby. I enjoyed my pregnancy because I was informed and free to make my own choices.

The key to a positive birth process is knowing you have choices. Having a birth plan will ensure your health professionals are already aware of your views and choices.

A birth plan can be reasonably adjusted in terms of understanding and using language, for example, by saying: “Please give me more time to process what you are saying to me.” Or, in terms of understanding and getting on with non-autistics, for example: “Please avoid using facial expressions or gestures as I may not understand what you are trying to communicate.” Or mentioning sensory processing differences such as: “I find bright fluorescent lighting intolerable. Please switch off the overhead lights.” Remember, everyone is different, so this list is not exhaustive.

Here are five things I insisted on:

  • To be fully informed about the facts relating to my care
  • To retain choice and control and decide for myself what is best
  • To be listened to and treated with dignity and respect
  • To be empowered to be independent
  • To be appropriately supported so I could have positive memories of my pregnancy and birth.

I created a downloadable maternity passport in standard and easy-read versions (see the resources section) because it’s helpful to give health professionals as much information about yourself as possible (see box, right).

Wanting an autism-friendly pregnancy and birthing experience is not selfish. It is essential.

Alexis Quinn is the author of Autistic and Expecting: Practical Support for Autistic Parents-to-be, published by Pavilion Publishing and Media

A passport to smooth hospital experiences

Many appointments involve different health professionals. To avoid having to repeat yourself, you can use a maternity passport. This is a document that holds:

  • Information about you
  • Feelings and hopes about your pregnancy
  • Reasonable adjustments you need (eg being able to wait outside the hospital for an appointment)
  • Things that might cause you distress (eg loud noises)
  • How to help if you experience sensory overload
  • Details of your advocate or spokesperson
  • Preferences for any ultrasound scans
  • Birth plan.