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Full paper: https://journals.sagepub.com/doi/pdf/10.1177/13623613211043701

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Nothing about us without us
Who: Hampton and colleagues
Journal: Autism
Published: 2021
Title: A qualitative exploration of autistic mothers’ experiences II: Childbirth and postnatal experiences

Autistic Mothers:
Birth & Beyond

There’s not very much research into how autistic people experience birth and the first few months of parenthood. This study interviewed some autistic women and non-autistic women about their experiences.

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The Participants:

They interviewed 21 autistic and 25 non-autistic women.

All mothers were in a romantic relationships. The autistic group were significantly younger, had a lower level of education and lower household income, and were more likely to have a co-occurring psychiatric condition, most commonly depression & anxiety.

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The Findings:

Positive and Negative Birth Experiences:
Subthemes: (1) ‘The physical and emotional challenges of birth’, (2) ‘Autism disclosure and accommodations around specific needs’, (3) ‘Communication needs’ and (4) ‘Other met and unmet support needs’.

Theme 2: The rewards and challenges of motherhood:
Subthemes: (1) ‘Motherhood as a rewarding experience’, (2) ‘Hopes and expectations for child’, (3) ‘Impact on day-to-day functioning’ and (4) ‘Other demands of motherhood’.

Theme 3: The impact of formal and informal support:
(1) ‘Professionals’ autism expertise and accommodations around specific needs’, (2) ‘The importance of building a relationship with professionals’, (3) ‘Other met and unmet support needs’ and (4) ‘The importance of informal support’.

There were three main themes and 12 subthemes, two of which were specific to the autistic group.

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Theme 1: Positive and Negative Birth Experiences

Subthemes: (1) ‘The physical and emotional challenges of birth’, (2) ‘Autism disclosure and accommodations around specific needs’, (3) ‘Communication needs’ and (4) ‘Other met and unmet support needs’.

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Subtheme 1: The physical and emotional challenges of birth

All participants found birth to be painful, but some of the autistic women found other sensory issues more challenging than the pain. They also struggled with changes to their birthing plans.

“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. (autistic)”

“The C-section broke my heart because I wanted a home birth and then had to settle for a hospital birth and to then concede and settle for a C-section. (autistic)”

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Subtheme 2: Autism disclosure and accommodations around specific needs (autism specific)

Some autistic women felt their needs were met; others did not.

“I don’t think any of them were aware of how to handle autism at all. No-one mentioned it, no-one asked if I was coping, it just never came into play really. (autistic)”

“I didn’t feel that they would understand the sensory overload and getting overwhelmed and having a bit of a meltdown. But they certainly did have some understanding of things, like they tried to keep the lights low. (autistic)”

“When they moved me around they put something over my eyes so I wouldn’t be blinded. They told me exactly when people were going to come and who was going to come. They tried to give me my own midwife where possible, so I saw the same person all the time and they told me when they were changing. They gave me my own room so I didn’t have to go on the ward. I can’t fault them. (autistic)”

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Subtheme 3: Communication needs

The non-autistic women felt they were kept informed; not all autistic women felt this way.

“Any concern that I had, people responded to quickly and thoroughly. (non-autistic)”

“They kept saying that they were going to break my waters and we’d wait like five hours and go and chase them up and they’d be like ‘oh no, we haven’t got anyone to do it now’, but they hadn’t come and told us that. And so on the fourth time that happened, I just completely lost it and cried for about six hours. (autistic)”

“I just kind of got a general feeling that they thought I was exaggerating things and trying to make things seem further along or a bigger deal than they were. But I’m quite literal. (autistic)”

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Subtheme 4: Other met and unmet support needs

Both groups appreciated continuity of care, the autistic women felt that this gave staff an opportunity to get to know their needs. Both groups appreciated the kindness of the staff. However, some autistic women felt the staff had not always been compassionate.

“They were so lovely and so understanding and I just had a really good experience. (autistic)”

“It was really nice that they got to know all of my weirdness and quirks and preferences. (autistic)”

“I was yelled at by a health care assistant for trying to get an hour’s sleep, she shook me awake and tried to grab my baby from my husband. (autistic)”

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Theme 2: The rewards and challenges of motherhood

Subthemes: (1) ‘Motherhood as a rewarding experience’, (2) ‘Hopes and expectations for child’, (3) ‘Impact on day-to-day functioning’ and (4) ‘Other demands of motherhood’.

Subtheme 1: Motherhood as a rewarding experience

Both groups felt love and connection to their baby, and found smiles & cuddles rewarding. Both groups felt they had strengths.

“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. (autistic)”

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Subtheme 2: Hopes and expectations for child

Both groups wanted, in the future, for their child to be happy and to be able to follow their own path in life.

“To find her own path, to do what is fulfilling and meaningful for her. (non-autistic)”

“I’d like for him to be able to be happy and enjoy school and study easily. (autistic)”

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Subtheme 3: Impact on day-to-day functioning

Both groups found a lack of sleep and the unrelenting nature of motherhood hard. Autistic mothers found executive function demands mentally exhausting, and the unpredictability of their baby’s needs disruptive.

“Usually when I feel overloaded and therefore low I deal with that by doing very little to recover but you can’t do that with a baby. (autistic)”

“I found it very hard to accept the lack of a rigid routine, especially when she was newborn, she could wake up any minute so I was on edge the whole time. (autistic)”

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Subtheme 4: Other demands of motherhood

Both groups found breastfeeding difficult, and the autistic group identified additional challenges with sensory sensitivities and play.

“About half way through a feed I feel like there’s some sort of needle that being threaded up almost right the way to my back. (autistic)”

“It’s definitely hard when he wants to be on me all of the time, because I’m kind of touch avoidant. (autistic)”

“It [play] didn’t come very naturally and I was worried that I wasn’t doing it enough, or doing it right. (autistic)”

Some autistic participants didn’t struggle with sensory aspects; one reported reduced sensory sensitivities since birth.

“Things that used to really bother me just don’t bother me at the moment, which is marvellous, I can go around Tesco without the fridges being really loud, which is a new experience! (autistic)”

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Theme 3: The impact of formal and informal support

(1) ‘Professionals’ autism expertise and accommodations around specific needs’, (2) ‘The importance of building a relationship with professionals’, (3) ‘Other met and unmet support needs’ and (4) ‘The importance of informal support’.

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Subtheme 1: Professionals’ autism expertise and accommodations around specific needs (autism specific)

Some autistic mothers felt dismissed and undersupported by professionals. When professionals did have a good understanding of autism, this was due to personal experience rather than training. Some did get additional support, but more often due to mental health difficulties than due to being autistic.

“I don’t think people have a knowledge of it really, it’s just a word that they think they know what it means, I don’t really think they know how to put that into practice. (autistic)”

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Subtheme 2: The importance of building a relationship with professionals

Both groups liked having a friendly relationship with professionals, and autistic mothers struggled when there was a lack of continuity of care.

“It’s been good to have the health visitors there and talk through, just checking up on how I’m doing. (non-autistic)”

“With a new person I find that quite difficult. I felt that I had to kind of strategize, if I said something too concerning I didn’t know how she’d react, so I felt that I had to be super OK and fake it a bit. (autistic)”

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Subtheme 3:
Other met and unmet support needs

Both groups found they were given unhelpful or contradictory advice, often around breastfeeding. They found support groups to be really useful. The autistic group struggled with not knowing in advance when a home visit would occur.

“I’d be scared to do things in case they came, so I’d put certain routines on pause because I couldn’t bear to be disrupted once I’d started. (autistic)”

“I’ve been going to a local breastfeeding group and they have a breastfeeding Autism councillor and peer support people as well and they can come and help with that and that’s been really useful (autistic)”

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Subtheme 4:
The importance of informal support

Both groups appreciated practical and emotional support from friends and family. While the non-autistic group liked forming connections in parent and baby groups, the autistic group found this challenging. The autistic mothers found peer support from other autistic parents really useful.

“It’s nice to talk to other people who have similar sensory experiences and social experiences while also dealing with pregnancy and babies. (autistic)”

“I’ve been going to a baby group but I don’t feel like I’ve made much of a connection with anyone. I keep going but I’ve found it really hard. Everyone goes on about how you need a mum network but I don’t have that. (autistic)”

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Limitations of this study:

The autistic mothers were more likely to be first time parents who had never encountered maternity services, and this might impact their experience.
The autistic mothers were more likely to be outside of the UK (USA & Ireland), where healthcare can be very different.
The autistic mothers were more likely to have a low income, so those with a higher income may have different experiences.
The autistic mothers often had co-occurring mental health difficulties to a higher degree than the non-autistic mothers, and this might impact their experiences.
This study did not utilise the experiences of transgender or non-binary parents who birthed children, autistic fathers, autistic step-parents, or autistic foster or adoptive parents, who may have different experiences. This should be explored in future research.