This article describes some of our recent research on autistic people’s parenthood experiences, carried out at the Autism Research Centre, University of Cambridge. Very little research has explored what it is like to be an autistic parent. In particular, there have been very few studies into how autistic people experience being pregnant, giving birth and caring for their baby. We wanted to find out more about the strengths and challenges associated with being an autistic parent, as well as how autistic parents can be better supported.
In our research, which was recently published in a scientific journal (find here). We used semi-structured interviews to find out about the experiences of childbirth and early parenthood in 21 women with an autism diagnosis and 25 non autistic women, we used thematic analysis to determine common themes between the participants’ experiences.
The results highlighted three themes of interest:
- Positive and negative birth experiences
- The rewards and challenges of motherhood
- The impact of formal and informal support
Positive and negative birth experiences
- The autistic parents we spoke to sometimes found some of the physical sensations of childbirth, such as being touched by medical professionals and coping with very bright lights in the hospital, particularly difficult.
- Both autistic and non-autistic parents told us that they appreciated receiving clear information from medical professionals during childbirth, though this appreciation was particularly emphasised by the autistic parents. Autistic parents told us that they really valued being given clear, direct information about what was going on during childbirth.
I was in pain but confined to the bed. And I was all hooked up to the machines and everything. And like all of that was really sensory crazy, I just felt really trapped like I couldn’t move, so like I was quite overwhelmed and had a couple of meltdowns.
The rewards and challenges of motherhood
- Parenting could be difficult at times for both the autistic and non-autistic parents. For example, lack of sleep and having little time to oneself could be challenging. The autistic parents we spoke to also talked about some extra difficulties, such as finding the physical sensation of breastfeeding particularly difficult and lacking confidence when playing with their baby.
- Both autistic and non-autistic parents talked about the things they were good at when it came to parenting, such as being patient and caring deeply for their baby. Some autistic parents also talked about being especially good at persevering with their parenting goals, and some talked about having an especially good understanding of their baby’s physical needs (such as needing to be held to feel secure).
You’re so used to looking for the super vague, sub-textual clues from adults but the good thing about babies is that they kind of have universal cries and I’m good at listening to noises. I can tell the difference between people’s sets of keys, who’s coming based on what kinds of keys are jingling, so I figure that if we can do that, we can tell what kind of cry a baby has.
The impact of formal and informal support
- The autistic parents we spoke to frequently felt that healthcare professionals (such as midwives, doctors and health visitors) did not have a good understanding of autism and the ways that autism might manifest differently for women. Parents sometimes felt that this lack of understanding could lead to them not getting the desired support from professionals.
- Autistic parents appreciated it when healthcare professionals got to know them as an individual and tried to meet their individual needs.
They kept referencing Anne Hegerty in the jungle and saying, ‘I know a bit about autistic women now, because Anne Hegerty in the jungle said this and now I understand what you’re saying’. These are health professionals and they’re getting their information from ‘I’m a Celebrity Get Me Out of Here’, otherwise they’d have had no understanding of me at all. I just thought that was the most awful thing, that reality TV is educating people who have the power to possibly take my child away from me.
These results suggest that autistic parents might benefit from some adjustments to the healthcare they receive during and after giving birth. These include adjustments to the sensory environment while giving birth (such as dimming lights where possible) as well as communication adjustments (such as receiving very clear, direct information). Healthcare professionals should receive more training about autism so they can better support their autistic patients. The results also suggest that autistic and non-autistic parents have many shared strengths and challenges when it comes to being a parent, such as being patient and finding lack of sleep difficult. Autistic parents may benefit from additional support in some specific areas of parenting, such as the sensory challenges of breastfeeding. In addition, there are areas where autistic parents may particularly excel, such as persevering with their parenting goals.
It would be beneficial for further research to build on these findings by exploring whether similar results are found in a bigger sample using different methods. For example, a survey could determine whether we find similar results using quantitative methods where the autistic and non-autistic groups can be compared statistically. Research exploring healthcare professionals’ perspectives would also be beneficial in order to understand what support they may need when providing care for autistic people.
For updates about this and future studies, please follow us on twitter: @SarahCHampton, @ARC_Cambridge