Autistic-led research: how to understand Autistic parents’ needs

by Dr Aimee Grant, Senior Lecturer and Wellcome Trust Career Development Fellow, Swansea University

I’ve been researching experiences of pregnancy and early parenting for over a decade. When I first started working in this area, much of the funding available particularly aimed to target those living in areas with high levels of poverty. Coming from one of these stigmatised “deprived areas” and a working-class background, I was keen to ensure this work moved away from demonising poor mothers and focused on wider barriers to meeting public health ideals. This included trying to identify why it was more difficult to breastfeed, what support was available, why the support might not be effective and whether more intensive breastfeeding peer support could help.

I’ve also had the opportunity to contribute to research on physically Disabled people’s maternity and infant feeding experiences, showing that there are additional factors to consider in breastfeeding support, such as the interaction with medication and positions in which it’s possible to breastfeed.

In 2019, I was diagnosed as Autistic, and in 2020, I had a very unpleasant experience receiving treatment, including emergency surgery, for an ectopic pregnancy. This included being on a ward with lots of other patients that was too loud and bright (to be published soon in the journal Geoforum). Whilst I’m grateful that I received potentially life-saving surgery, it didn’t feel as though my needs as an Autistic person were considered at all. This led me to start questioning what we knew about Autistic people’s maternity experiences.

Working with Autistic UK, I completed a systematic review on Autistic people’s infant feeding experiences. We only identified eight pieces of research, showing limited attention had been focused on this topic. The existing research showed that Autistic parents faced the same barriers as non-Autistic parents, but that there were additional challenges relating to sensory needs and being able to access breastfeeding support. In addition, the language and framing of Autism in some of this research was focused on a medical model of Autism which implies that Autistic people are inherently deficient, rather than emphasising the deficiencies in the environment that made things more difficult for Autistic people compared to non-Autistic people.

I’ve always had a strong focus on social justice and decided that we really needed to better understand Autistic people’s maternity experiences through a neurodiversity-affirming lens (that says Autistic people are different, not deficient). This led to me creating an online survey for Autistic birthing parents (mothers and others who have given birth) to understand more about their experiences. 193 people took part, and these findings are now being written up for publication. These include many reports of support that did not meet their needs, and very few examples of good or excellent care.

Something that I’ve been really pleasantly surprised by is how interested people have been in my research. When we published the systematic review, I spoke to three radio stations and Kat Williams (from Autistic UK) and I were showcased on BBC News. More recently I’ve recorded two podcasts on the issue (The Second Shift, and Global Challenges which will be coming out in the summer). Academics have also been interested in this research, with well-attended talks for the Centre for Research in Autism and Education, Centre for Reproduction Research, De Montfort University, the Maternity and Infant Nutrition and Nurture (MAINN) conference and the University of Manitoba’s MILC club.

Most excitingly, however, health professionals and breastfeeding peer supporters have been keen to hear about how their support can better meet the needs of Autistic parents. This includes providing talks to La Leche League, the Maternity and Midwifery festival, Breastfeeding Conferences Australia, South West Regional Perinatal Equity Network, South East London NHS Trusts Loss and Bereavement Forum, iLactation, Birth Companions and Lactation Consultants GB. I’ve also been added to the programme for this year’s UNICEF Baby Friendly Initiative conference, which is attended by hundreds of midwives and health visitors each year.

Being able to speak to so many of those who support people in the maternity period gives me a lot of hope that in the future Autistic people’s needs will be better understood. However, knowledge is only one barrier to providing optimum care. The Royal College of Midwives has highlighted a shortage of over 2,600 midwives in England alone, which will impact the extent of individualised care that can be provided. As such, an injection of funding and staff is required for the needs of marginalised parents - including Autistic people – to be met.

Building on the research completed, I’ve been fortunate to work with Autistic UK, Autistic Parents UK and health professionals from MARG to create a series of videos targeted towards Autistic people during the maternity period and those who provide support to them. These will be ready later this year and will be on the Autism from Menstruation to Menopause YouTube channel.

I’ve also begun an eight-year Wellcome Trust-funded project to examine Autistic people’s reproductive health “from menstruation to menopause”. This well-funded study has an entirely Autistic team of researchers (myself, Dr Gemma Williams, Dr Rebecca Ellis, Dr Rhian Powell and Harriet Axbey), and I am also co-governing with a community council of 12 Autistic people. My hope is that by foregrounding knowledge in a neurodiversity-affirming way, we will be better positioned to recommend solutions to improve reproductive healthcare for Autistic people. You can follow the progress of the project here.