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A Comparative Study of Autistic and Non-Autistic Women's Experience of Motherhood

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A Comparative Study of Autistic and Non-Autistic Women's Experience of Motherhood Pohl et al. Molecular Autism (2020) 11:3 https://doi.org/10.1186/s13229-019-0304-2 RESEARCH Open Access A comparative study of autistic and non- autistic women’s experience of motherhood A. L. Pohl1†, S. K. Crockford1*†, M. Blakemore2, C. Allison1 and S. Baron-Cohen1 Abstract Background: Autism is a lifelong neurodevelopmental difference and disability, yet there is limited research examining parenting in autistic mothers. Objective: To explore autistic mothers’ experience of the perinatal period and parenthood. This includes pregnancy, childbirth, the postpartum period, self-perception of parenting strengths and weaknesses, communication with professionals in relation to one’s child, mental health difficulties and the social experience of motherhood. It also includes disclosing one’s diagnosis of autism in parenting contexts. Methods: We used a community-based participatory research model, and recruited an advisory panel, with whom we co-developed an anonymous, online survey for autistic mothers. The online survey was completed by autistic and non- autistic mothers, and we compared their responses using Chi-squared analysis. Sample: Autistic mothers (n =355),andnon-autisticmothers(n = 132), each of whom had at least one autistic child, were included in our final analysis. Results: There were differences in education, gender identity and age of mother at birth of first child. Autistic mothers were more likely to have experienced additional psychiatric conditions, including pre- or post-partum depression, and reported greater difficulties in areas such as multi-tasking, coping with domestic responsibilities and creating social opportunities for their child. They were also more likely to report feeling misunderstood by professionals, and reported greater anxiety, higher rates of selective mutism, and not knowing which details were appropriate to share with professionals. They were also more likely to find motherhood an isolating experience, to worry about others judging their parenting, or feel unable to turn to others for support in parenting. However, despite these challenges, autistic mothers were able to act in the best interest of their child, putting their child’s needs first. Conclusions: Autistic mothers face unique challenges and the stigma associated with autism may further exacerbate communication difficulties. Greater understanding and acceptance amongst individuals who interact with autistic mothers is needed, and autistic mothers would benefit from additional and better-tailored support. Keywords: Autism, Motherhood, Parenting * Correspondence: [email protected] †A. L. Pohl and S. K. Crockford are joint first authors 1Autism Research Centre, Department of Psychiatry, Cambridge University, Douglas House, 18b Trumpington Road, Cambridge CB2 8AH, UK Full list of author information is available at the end of the article © The Author(s). 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Pohl et al. Molecular Autism (2020) 11:3 Page 2 of 12 Terminology as though the concept of the ‘ideal mother’ was incompat- This article uses identity-first language because autistic ible with the negative connotations of their psychiatric individuals have reported a preference for identity-first condition [15]. Stigma also presents a major barrier to language (autistic person) rather than person-first lan- accessing services or seeking support from friends and guage (person with autism) [1]. family. For mothers who fear judgment of their parenting ability and fear potentially losing their child to child pro- Introduction tection services, fear of stigmatisation may impede them Autism is a neurodevelopmental condition, diagnosed by from accessing services needed by their children. This difficulties in social-communication alongside a strong may be part of a wider feeling of being stigmatised that preference for repetition, difficulties in adjusting to un- autistic adults report [17]. Such fears could be well expected change, and a profile of atypical sensory sensi- founded as parents with an intellectual disability often face tivity. The prevalence of autism is estimated at 1–2% of more scrutiny by social services [18] and are at a higher the population, diagnosed more often in males than fe- risk of having their parental rights terminated [19]. males, with a sex ratio of 3:1 (male:female) [2–4]. Little Autistic individuals are at increased risk of mental health attention has been paid to parenthood in autistic adults, difficulties, compared to neurotypical individuals [20]. It is despite autism being a lifelong condition [5]. There are unclear how this might affect autistic mothers. Feelings of currently no estimates of the number of autistic adults isolation, fear of judgment and the stigma of autism may who are parents. Between 17 and 23% of parents of aut- have an adverse effect on mental health, especially in the istic children have the ‘broader autism phenotype’ [6, 7] early stages of motherhood where women are still adjusting and autism is partly genetic [8]. Therefore, it is possible to their new identity [16]. A history of depression is one the that a number of mothers of autistic children may have highest risk factors for postpartum depression [21]. Given undiagnosed autism and, because women are on average the co-morbidity of depression and autism [20], we would diagnosed later in life than men [9], some may not re- expect autistic mothers to be at higher risk for postpartum ceive their diagnosis until they are already parents them- depression than are neurotypical mothers, which could iso- selves. Whilst there is some literature on how the late them further. This may mean that autistic women re- presence of an autistic child impacts family dynamics quire additional tailored support to meet their needs. and parents [10, 11], the experience of autistic mothers Awareness of rates of depression in autistic mothers could themselves is relatively unexplored. help support services to anticipate their likely needs, leading To date, only the experience of pregnancy, childbirth to earlier identification of depression symptoms. and the postpartum period in autistic women have been Difficulties with processing sensory experiences, for studied [12, 13]. Using qualitative methods, these studies example issues with breastfeeding, and communicating highlighted themes important to autistic mothers [12, 13]: with professionals, such as clinicians, midwives and Heightened sensory experiences during the perinatal nurses [12, 13] may be unique components of the period, including breastfeeding; the desire for clear guid- motherhood experience for autistic women. Autism is ance from healthcare professionals and family; stress that associated with sensory hypersensitivity, often leading to follows from the perceived pressure to be a patient and sensory overload [22, 23]. Gardner et al. reported that perfect mother; and the stigmatisation of autistic mothers for some autistic women this made the physical sensa- as ‘bad parents’ by healthcare professionals. However, fur- tion of breastfeeding unpleasant, but that autistic ther research of autistic motherhood, beyond the perinatal mothers were nevertheless able to successfully breastfeed period, is needed. as they felt it was in the best interest of their child [12]. The experiences of mothers with intellectual disabilities The ability to overcome difficulties in order to act in the and psychiatric conditions, which are often co-morbid best of interest of the child may play a vital role in the with autism [14], may inform our understanding of the experience of motherhood for autistic women. possible experiences of autistic mothers. Although not all The main objective of this study was to provide a prelim- autistic women have an additional diagnosis of a psychi- inary investigation into how autistic women experience the atric condition or intellectual disability, mothers with perinatal period and early motherhood, compared to non- these diagnoses may face similar challenges to autistic autistic mothers. We developed an online survey made mothers as these conditions are all neurodevelopmental, widely available to autistic and non-autistic mothers. We psychological or behavioural in nature. For women with wanted to ensure that a wide range of issues were covered intellectual disabilities and psychiatric conditions, mother- and that these issues were truly reflective of the needs of hood is often a desirable experience [15, 16], but for the autistic community. At the time this survey was devel- mothers with a psychiatric condition, the stigma associ- oped, there was no peer reviewed, published work on autis- ated with their condition has a major impact on how they tic mothers. For this reason, we chose to cover a broad view themselves as mothers. One study showed they felt range of topics which could inform the priorities for future Pohl et al. Molecular Autism (2020) 11:3 Page 3 of 12 research, provide some guidance for policy-makers and, The questions used in the survey
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