By Dr Aimee Grant, Swansea University
I was diagnosed as Autistic in 2019. At this point, I already had eight years of postdoctoral research experience focused on pregnancy and early parenting. And then, in COVID lockdown, I had an ectopic pregnancy and needed emergency surgery. Despite telling the doctors and nurses that I was Autistic, nobody seemed to know what to do with that information, and my treatment was really quite inaccessible (you can read about some of my experiences here).
When I started a new job in the Lactation, Infant Feeding and Translation research centre at Swansea University in March 2021, it was clear to me that I was ideally placed to understand more about the maternity experiences of Autistic people.
Kat Williams, research director for Autistic UK, and I started off reviewing the existing research and other first-hand accounts, like blogs, focused on infant feeding. There were only eight pieces of research, and many of them covered infant feeding quite briefly as part of a wider maternity study. We found that Autistic people had some of the same challenges as non-Autistic people in relation to not having enough breastfeeding support, or the support coming later than would be ideal. However, we also found high determination to breastfeed and some additional challenges, including pain and managing the sensory aspects of infant feeding, like the feeling of the milk letdown reflex.
It became clear to me that we needed a much better understanding of Autistic maternity experiences, including pregnancy loss (which had not yet been written about in the research evidence), maternity care, birth and infant feeding. Again, I worked with Autistic UK to develop the study. The findings of our study are not yet published, but the Autistic participants had some clear recommendations: they wanted more information about all aspects of maternity care. This information should use clear and direct language so Autistic people knew what to expect at each stage of their maternity journey. The participants in the study also wanted the health professionals supporting them to have a better understanding of Autism, and how maternity might be different for Autistic people compared to non-Autistic people.
This led to the “Autistic pregnancy, birth and beyond: your questions answered” project. I’d been speaking with Ayesha Pusey and Kieran Rose from Autistic Parents UK about finding a way to work together when I was offered some additional funding from Swansea University. Autistic Parents UK and Autistic UK both agreed to join me in developing resources to answer the questions of Autistic people about pregnancy and early parenting.
Initially, we planned to make a few animations but soon realised that we had too many important questions to answer to limit ourselves, particularly when we had so much relevant experience and professional expertise within the team. Instead, we decided to make a series of short videos that would be easily sharable on social media.
From the outset we were determined that this was to be a project entirely developed and delivered by Autistic people. Members of Autistic Parents UK and Autistic UK combined their personal maternity experiences with their professional and research experience to develop a list of topics and questions that they thought Autistic people would want answered Through a lively series of online meetings (thanks Zoom!) we decided on around 100 key themes that were important.
We then used a consensus-making activity called finger voting (borrowed from AASPIRE who have been doing participatory Autism research for decades). Everyone voted on how important they thought it was that we made that particular video, and we took the average score.
Having whittled our list of topics down to 65 high-priority questions, we decided that it would be useful to have a lived experience angle from a parent AND a professional involved in the maternity period providing key information. Fortunately, Autistic Parents UK includes a wide range of incredibly knowledgeable Autistic professionals, ranging from lactation consultants (IBCLCs) and maternity support workers to antenatal educators and social workers. Alongside this, a group of brilliant Autistic midwives and an Autistic Occupational Therapist from the Maternity and Autism Research Group and an anaesthetist from Autistic Doctors International also agreed to create videos.
We’re now (July 2023) at the point where over 100 videos have been created, and these are being edited by our lovely Autistic video editor, Cathy Jackson, and they will contain the project logo designed by our awesome Autistic research assistant, Dr Rebecca Ellis.
Something that often isn’t talked about in these sorts of projects is payment for those contributing lived experience. The funding I received for this project meant that we were able to give an “honorarium” (thank you payment) of £25 per hour throughout the project to all of the parents involved. This is best practice in research, but all too often Autistic people are expected to give their expertise for free. We were also able to pay for the time of health professionals and those organising the project.
Our project shows that Autistic people are well-placed to undertake Autism research, to identify the needs of the Autistic community, and to work together to develop solutions. I am incredibly proud of this project and of the hard work of so many Autistic parents and Autistic professionals who contributed to it.
We plan to release these videos in the next few months, and to create relevant playlists on the Autism from Menstruation to Menopause YouTube channel. I really hope that they will be a valuable resource for Autistic parents and the professionals who support them, and welcome any feedback on the videos from parents and professionals.
Special thanks go to Katrine Callander (Autistic Parents UK) and Dr Rebecca Ellis (Swansea University) for their support in coordinating the development of the videos. Thanks also go to Cathy Jackson (Autistic UK), who was the video editor on the project. I also want to say a big thank you to all of the Autistic parents and professionals who created videos for the project, many of whom shared very personal experiences with the hope of supporting future generations of Autistic parents.
The Autistic infant feeding experiences systematic review and Autistic pregnancy, birth and beyond: your questions answered projects were both funded by the Research Wales Innovation Fund, part of the Higher Education Funding Council for Wales.
The maternity experiences survey project was funded by the Accelerate Healthcare Technology Centre at Swansea University.
Autistic infant feeding experiences systematic review
- Academic research paper: https://journals.sagepub.com/doi/full/10.1177/13623613221089374
Maternity experiences survey project
-Academic research papers: coming soon – please email email@example.com for copies