“I Just Gritted My Teeth to Get Through It All”: An Online Survey of Autistic People’s Experiences of Maternity Care in the United Kingdom

Abstract

Background:

Difficult birth experiences are known to have long-lasting implications for physical and mental health. Autistic people are more likely to experience obstetric complications. To date, Autistic people’s experiences of maternity care have been underexplored. We aimed to explore experiences of antenatal and birth care to identify needs and factors associated with birth trauma.

Methods:

We used social media and snowball sampling to recruit for our online survey. Participants were required to be: Autistic, aged >18 years, living in the United Kingdom, and to have experienced pregnancy. Analysis included descriptive statistics and reflexive thematic analysis.

Results:

We received 193 usable responses. Quantitative results showed that the majority (86.4%) of participants reported masking when receiving care. Participants reported that they were not listened to (51.7%), misunderstood (47.8%), and unsupported (43.8%) during their maternity care. Over a third (35.4%) did not understand the way things were explained to them, and nearly half (48.9%) reported not being given the option to decline physical examinations. Our qualitative analysis resulted in three overarching themes that are interrelated. First, “health professionals’ knowledge of Autism” highlighted that maternity staff did not understand Autistic communication and pain presentations. Second, “systemic issues impacting on providing Autism-friendly care” focused on time and the ward environment as barriers to accessible maternity care. Third, “impacts of inaccessible care on Autistic people” described the way in which these two themes came together, resulting in lack of consent, safety issues, breached trust, and unmet needs for Autistic people.

Conclusions:

There is an urgent need for improvements in the health care given to Autistic birthing people. Increased knowledge of Autism, particularly focused on communication and pain expressions, is essential. Continuity of care, longer appointment times, and improvements to the sensory environment would also benefit Autistic maternity service users.

Community Brief

Why is this an important issue?

Pregnancy is a big change for anybody. There have not been many studies of Autistic people’s pregnancy experiences. Completed research has mostly interviewed small numbers of people.

“Informed consent” means that you understand what will happen and you can say no. Some research says that Autistic people have not been asked to give “informed consent” to tests or treatment in maternity care. This is linked to birth trauma in research on all people who have given birth.

What was the purpose of the study?

We wanted to ask Autistic people about maternity care, including things from previous studies on birth trauma and research with Autistic people.

What did the researchers do?

We asked Autistic people who had been pregnant and lived in the United Kingdom to do our online survey.

What were the results of the study?

In total, 193 Autistic people answered our questions. When they used tick boxes to tell us about their maternity care, most said they:

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“Masked” (acted like they were not Autistic to get better treatment) during appointments;

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Were not listened to by maternity staff;

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Were misunderstood by maternity staff;

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Felt unsupported during their maternity care.

Also, it was common for Autistic people to not give “informed consent.” One in three said they did not understand the way their midwife or doctor explained things to them. Also, nearly half were not told that they could say “no” to treatment.

When we asked Autistic people to write down what happened to them during their maternity treatment, most people told us they had bad care.

First, in “health professionals’ knowledge of Autism,” they told us that maternity staff were not good at communicating with, or understanding them, and did not understand how they showed pain.

Second, in “systemic issues impacting on providing Autism-friendly care,” Autistic people focused on things in the maternity care system that made it hard for them, including short appointment times and the ward environment.

Third, in “impacts of inaccessible care on Autistic people,” Autistic people described issues such as having treatment without consenting and having unmet needs.

What do these findings add to what was already known?

We found similar things to previous research. The new things we found were almost half of the Autistic people said that they did not give “informed consent” most of the time. Also, many felt that maternity staff did not listen to them, understand them, or support them.

What are the potential weaknesses in the study?

The Autistic people in this study were mostly highly educated, white, cisgendered, and speaking. We also did not ask if they had learning disabilities, so our results may not apply to all Autistic people. Some of the Autistic people had their babies a long time ago.

How will these findings help Autistic adults now or in the future?

These findings show barriers in maternity services to meeting the needs of Autistic people, which may increase their risk of birth trauma. This information could be used to help maternity services better meet the needs of Autistic people.