Sensory challenges experienced by autistic women during pregnancy and childbirth: a systematic review

Samuel, Priscilla; Yew, Rui Ying; Hooley, Merrilyn; Hickey, Martha; Stokes, Mark A.

doi:10.1007/s00404-021-06109-4

Cited by 25 publications

(12 citation statements)

References 62 publications

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“…49,50 Qualitative studies about autistic parents found that they experienced great joy and intense connections with their children, who were motivators for change and personal growth 21,23,40,51 . In agreement with quantitative studies on this subject 22,33,41,42 , difficulties around communication, judgement and acceptance from professionals were also commonly found.…”

Section: Introductionsupporting

confidence: 83%

“…3,39 Several studies have found that autistic parents experience difficulties regarding effective communication with professionals (while advocating for their children), and in healthcare settings. 22,32,33,[40][41][42] Autistic people are stereotypically believed to lack empathy, mainly due to Theory of Mind research. 43 More recently, researchers have shown that while autistic people may have some difficulty with cognitive empathy or mentalising (understanding someone else's perspective), they have no differences in affective empathy (feelings of love, compassion, concern, and warmth towards others).…”

Section: Introductionmentioning

confidence: 99%

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Love, Joy, and a Lens of Childhood Trauma: Exploring Factors That Impact the Mental Health and Well-Being of Autistic Parents via Iterative Phenomenological Analysis

Smit¹,

Hopper

2022

Autism in Adulthood

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BackgroundThere have been numerous calls for an increase in autism research that explores the lifespan experiences of autistic people. Notable research neglect exists in the area of autistic adults' experiences of being a parent. This study aims to explore the experiences of autistic adults as parents and to investigate meaningful ways in which to support them. MethodsNine autistic parents took part in remote semi-structured interviews. The interviews utilised different modalities -as chosen by participants -to ensure maximum accessibility. Data analysis was carried out using Iterative Phenomenological Analysis (IPA) principles. ResultsWe identified three superordinate themes: Identity and Purpose; Looking Through a Lens of Trauma; Protect, Defend, Advocate, Repeat. Our participants expressed intimate connections with their children, who were sources of love and joy. Participants' childhood trauma influenced their experiences of being a parent. This was born out in extreme empathy, perfectionism, and a drive to protect their children from experiencing the same things. Participants were continuously advocating and fighting for the right support for their children, and interactions with professionals were a significant source of stress. ConclusionsThis study draws attention to the influence of childhood trauma on the parenting experience of autistic adults. It thereby reveals an unexplored long-term consequence of the traumatising effect of lack of support and othering of autistic children. Professionals interacting with autistic parents and families should be aware that they may be parenting through a lens of historical trauma and should be adequately trained in trauma-informed approaches to support. Further research is needed to investigate this phenomenon and how this knowledge can be used to inform practice. Equally important is investigation and training on the broader systemic and societal issues that impact the parenting experiences of autistic adults.

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Section: Introductionsupporting

confidence: 83%

Section: Introductionmentioning

confidence: 99%

Love, Joy, and a Lens of Childhood Trauma: Exploring Factors That Impact the Mental Health and Well-Being of Autistic Parents via Iterative Phenomenological Analysis

Smit¹,

Hopper

2022

Autism in Adulthood

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“…Indeed, being autistic and female is associated with an increased risk for anxiety and depression (Uljarević et al, 2019). Unique factors associated with being female such as menstruation, menopause (Moseley et al, 2020; Steward et al, 2018), and pregnancy and childbirth (Samuel et al, 2021) may contribute to a greater risk of autistic burnout among females as these experiences are often associated with heightened sensory difficulties and anxiety, poorer executive functioning, and a reduced capacity for emotion regulation. Additionally, people on the autism spectrum are more likely to experience gender dysphoria (e.g., identify as transgender, non‐binary; Cooper et al, 2021; George & Stokes, 2018); thus, it is possible that the stress of claiming or masking multiple marginalized identities (e.g., transgender, disabled) could increase the risk of autistic burnout.…”

Section: Risk and Protective Factors For Autistic Burnoutmentioning

confidence: 99%

A conceptual model of risk and protective factors for autistic burnout

2022

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Early qualitative research indicates that autistic burnout is commonly experienced by autistic people and is associated with significant, negative consequences for their mental health, wellbeing, and quality of life, including suicidality. Findings to date suggest that factors associated with being autistic and the widespread lack of autism awareness and acceptance within society contribute to the onset and recurrence of autistic burnout. Based on autistic adults' descriptions of their lived experiences, a Conceptual Model of Autistic Burnout (CMAB) is proposed, which describes a series of hypothesized relationships between identified risk and protective factors that may contribute to, or buffer against, autistic burnout. The theoretical framework for the CMAB is based on the Social‐Relational model of disability and neurodiversity paradigm, and the Job Demands‐Resources model of burnout, and Conservation of Resources theory. The CMAB offers a holistic perspective for understanding individual, social, and environmental factors that can influence autistic burnout via various direct and indirect pathways. Autistic burnout research is in its infancy and the CMAB provides a foundation for future investigations about this condition. Lay Summary Although many autistic people describe experiencing autistic burnout, there has been little research on this topic. Based on descriptions of autistic peoples' lived experiences, we developed a conceptual model to explore how various risk and protective factors may interact to contribute to, or prevent, autistic burnout.

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“…These behaviours can lead to ‘masking’ (suppression of natural Autistic coping responses), to reduce negative outcomes ( Pearson & Rose, 2021 ). Pregnancy and birth can also lead to additional sensory processing challenges for Autistic mothers ( Samuel et al, 2022 ).…”

Section: Introductionmentioning

confidence: 99%

Autistic women’s views and experiences of infant feeding: A systematic review of qualitative evidence

Grant

Jones

Williams³

et al. 2022

Autism

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Low breastfeeding rates are driven by multiple bio-psycho-social factors. Experience of breastfeeding is known to differ by maternal demographic factors (age, education and ethnicity) but there is less recognition of factors such as neurodivergence. This review, prospectively registered with PROSPERO (registration number: CRD42021271465), systematically identified qualitative research, commentaries and personal accounts related to Autistic mothers and infant feeding. Database searching identified 1225 records, with thematic synthesis undertaken on 22 (eight peer-reviewed studies and 14 grey literature) pieces. Our analysis identified that maternity and infant feeding services were built on a lack of understanding of Autistic needs, and were often inaccessible at a time when Autistic mothers already felt a loss of control and lack of social support. Specifically relating to breastfeeding, knowledge and determination were often high, and a minority of mothers reported positive breastfeeding experiences. However, sensory challenges, pain and interoceptive differences (exacerbated by a lack of support) made breastfeeding impossible for some. Infant formula was viewed as second-best to breastmilk, but a minority of mothers found the ritual of preparing bottles of formula positive. There is an urgent need for maternity and infant feeding services to accommodate the needs of Autistic mothers, including service design and staff training. Lay abstract What is already known about the topic? Mothers are encouraged to breastfeed their babies due to known health benefits for both babies and mothers. However, although breastfeeding is ‘natural’, that does not make it easy and many women experience challenges. Autistic women may face additional barriers to breastfeeding when compared to neurotypical women. What this paper adds? We reviewed all existing evidence on Autistic mothers’ infant feeding experiences (22 pieces) and found that although many Autistic women wanted to breastfeed, breastfeeding was difficult for Autistic mothers for three key reasons. First, maternity and infant feeding services were inaccessible and unsupportive to Autistic mothers, meaning they did not receive help when needed. Second, becoming a mother was challenging because of exhaustion, loss of control over routines and a lack of social support. Third, when breastfeeding Autistic mothers experienced sensory challenges, such as ‘being touched out’, and pain, which could feel unbearable. Despite these difficulties, many Autistic mothers had done a lot of reading about breastfeeding and were determined to breastfeed their babies; some mothers found breastfeeding positive. Infant formula was often viewed as second-best compared to breastmilk, but some mothers found the ritual of preparing bottles of formula to be calming. Implications for practice, research or policy The findings of this work show that Autistic mothers urgently need better support from health professionals to help meet their breastfeeding goals, including how to remove or reduce the extra barriers being Autistic brings to breastfeeding.

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Sensory challenges experienced by autistic women during pregnancy and childbirth: a systematic review

Cited by 25 publications

References 62 publications

Love, Joy, and a Lens of Childhood Trauma: Exploring Factors That Impact the Mental Health and Well-Being of Autistic Parents via Iterative Phenomenological Analysis

Love, Joy, and a Lens of Childhood Trauma: Exploring Factors That Impact the Mental Health and Well-Being of Autistic Parents via Iterative Phenomenological Analysis

A conceptual model of risk and protective factors for autistic burnout

Autistic women’s views and experiences of infant feeding: A systematic review of qualitative evidence

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