Childbirth is often described as one of life's most profound experiences, but for many , it can be fraught with anxiety, pain and trauma.
Authors
- Aimee Grant
Senior Lecturer in Public Health and Wellcome Trust Career Development Fellow, Swansea University
- Catrin Griffiths
Health Psychologist and Research Officer in Infant Feeding, Swansea University
- Kathryn Williams
PhD Candidate in Access to Healthcare for Autistic Adults, Cardiff University
Autism is a lifelong neurotype, which affects around 3% of people. It is linked to differences in communication and sensory processing.
Women have historically been underdiganosed with autism, diagnosed at an older age and misdiagnosed. This may explain why very little research has been conducted on the experiences of autistic women during pregnancy and childbirth - an oversight we have aimed to address in our new research .
There are issues affecting maternity services across the nations of the UK. Last year, almost half of maternity services in England were rated as "needing improvement" or "inadequate" by England's health service regulator, the Care Quality Commission. They also noted that communication with women - especially those from marginalised groups - could lead to fear, anxiety and having a negative birth experience.
Following reviews of baby deaths in Scotland , inspections of maternity services are underway, with units given no prior notice. Likewise, following the death of a baby, an independent review of maternity services in Northern Ireland recommended widespread changes and additional funding to make services safe. While a review of maternity services in Wales reported that services are generally good and safe, issues have been identified in some health boards.
In a medical context, "informed consent" means that a person understands what will happen during a test or treatment, and that they are aware that they can say "no" to having it. We know that in English maternity units , there are sometimes issues with women not being given the information needed for them to give informed consent.
What we found
Our research aimed to understand barriers to good maternity care for autistic people. We asked 193 autistic people from across the UK who had been pregnant to tell us what happened during their care in an online survey. It's important to note that half of our participants weren't aware they were autistic when they gave birth.
Most participants told us they felt they had to "mask" , or act as though they weren't autistic, to try to get better maternity care. Despite this, more than half said they felt they weren't listened to by maternity staff. Almost half also said they felt staff misunderstood them and that they were unsupported.
Worryingly, more than a third didn't understand explanations from healthcare professions about their examinations and treatments. Nearly half said they weren't given the choice to say no to having examinations, including vaginal examinations. This means that many of our participants weren't able to give informed consent to the treatment they received.
Another concerning issue was that some participants' pain during childbirth was untreated. And ten people told us that they could tell they were on the verge of giving birth, but were not believed by maternity staff.
When sharing their stories, most of our participants felt that staff didn't understand autistic people, including how they communicate and experience pain . While autistic people feel pain at the same level as non-autistic people, they often show it differently , including having fewer outward signs of pain.
Our participants also acknowledged there were issues in how maternity systems are designed, with staff appearing to have too much work to understand the needs of the individual pregnant person and change the care they give accordingly.
Altogether we found that autistic people's needs were not met during maternity care, with lack of consent, breached trust and safety issues common. Many of the issues we asked participants about are known to be linked to birth trauma. Our study provides initial support for a hypothesis that rates of birth trauma may be higher in autistic people.
Also, autistic women are at much greater risk of sexual assault compared to non-autistic peers, with one study reporting nine in ten had been victims. Research shows that sexual abuse survivors can be re-traumatised during birth .
Participants told us that they did not have their questions about pregnancy and birth answered by maternity staff, and that this caused anxiety. So, we have worked with the autistic organisations Autistic Parents UK and Autistic UK alongside autistic maternity professionals and parents to create 114 short videos to answer their questions. They are available in English and Welsh , and are already being used by some NHS trusts.
UK maternity services urgently need to become more autism-friendly. Things that may help include seeing the same midwife every time and having longer appointments, so that all questions can be answered.
It's also important for maternity staff to receive training in how to best support autistic people, which has been developed by autistic people. This is already available in England but not in the other UK nations. That should be introduced as a matter of urgency.
Aimee Grant receives funding from the Wellcome Trust, Medical Research Council and the Morgan Advanced Studies Institute. She is a non-executive director of Disability Wales.
Kathryn Williams receives funding for her PhD from the Economic and Social Research Council. She is a Director of Autistic UK CIC.
Catrin Griffiths does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.
