Exploratory Study of Childbearing Experiences of Women with Asperger Syndrome
Section snippets
OVERVIEW OF ASPERGER SYNDROME
Asperger syndrome is a neurodevelopmental disability that falls under the inclusive diagnostic umbrella of ASDs. Despite a full reworking of diagnostic criteria for autism from the revised DSM-IV TR (American Psychiatric Association, 2000) to the DSM-5 (American Psychiatric Association, 2013) and some diagnostic overlap, Asperger syndrome is still considered a lifelong condition through which individuals experience a range of social, emotional, communication, and interactional challenges,
INTIMATE RELATIONSHIPS AND PARENTING
Despite considerable social–emotional, interactional, and communication difficulties that emerge during childhood and persist through adulthood, individuals with Asperger syndrome are often partnered or married; many have enduring relationships with their partners and choose to have families (Larsen and Mouridsen, 1997, Lau and Petersen, 2011, Roy et al., 2009). Individuals with Asperger syndrome often experience aversion to physical closeness and/or perceive the demands of relationships with
COMORBIDITIES
Psychiatric disorders are frequently reported comorbid conditions in individuals with Asperger syndrome and have been reported in up to 80% of individuals with Asperger syndrome or high-functioning autism (Hofvander et al., 2009). The most common co-occurring conditions include attention deficit hyperactivity disorder, depression, and anxiety (Hofvander et al., 2009). Fifty to seventy percent of individuals with high-functioning autism or Asperger syndrome have depression, and about 50% have
Methods and Analysis
We conducted a secondary analysis of a qualitative data set that evolved during the process of developing a research questionnaire to assess childbearing experiences of women with Asperger syndrome. Two of us (Bloch, Lecks) created a preliminary questionnaire and sought expert review from key stakeholders in the Asperger syndrome community. During this phase, answers to the questions poured in spontaneously. Because the data were so rich, the principal investigator (Bloch) obtained
RESULTS
Several themes were predominant across the pregnancy and postpartum periods. Results are presented according to the traditionally accepted stages of pregnancy, because this is the model most clinicians use when providing care. Also, women presented some potential suggestions that might be helpful for clinicians when caring for this population of women.
The mean age for the eight women was 39 years (range, 27 to 52 years). All of the women had birthed their first baby between the ages of 18 and 32
DISCUSSION
Sensory modulation challenges are well described in the literature on Asperger syndrome (Harrison and Hare, 2004, Reynolds and Lane, 2008). In our study, there were a range of sensory needs and experiences described by women. Some women needed additional sensory experiences (e.g., pressure), whereas some were increasingly hypersensitive to sensations. Considering that sensory modulation is a challenge for many women with Asperger syndrome or other ASDs, the additional sensory burdens associated
NURSING PRACTICE IMPLICATIONS
The results of this study can suggest some direction to nurses in a variety of perinatal and pediatric settings. Nurses in these settings are likely to care for women who have Asperger syndrome and for their infants, regardless of whether or not the condition is disclosed. Interventions directed toward supporting women with Asperger syndrome might also help women without the condition; thus a more universal approach might be justified.
Modifications to the environment in response to sensory
LIMITATIONS
Results of this study should be considered in light of several important limitations. First, data analysis was based on an existing data set; therefore, it was not possible to request additional information of the study participants or to explore evolving themes more deeply. Second, some of the women in the study were self-diagnosed rather than diagnosed by a clinician with expertise in ASDs. Third, the data were retrospective and depended on recall and memory of past events.
CONCLUSION
Advanced practice nurses, nurse-midwives, and maternity nurses will encounter women with characteristics of Asperger syndrome and other ASDs at all time points during pregnancy and the postpartum period. Clinicians need a deep understanding of the condition and the treatment modalities used in this population, as well as a broad toolkit of strategies to help women with Asperger syndrome adjust to pregnancy and to new motherhood, to manage the minor and major discomforts and sensations
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Cited by (28)
Exploring the Birth Stories of Women on the Autism Spectrum
2021, JOGNN - Journal of Obstetric, Gynecologic, and Neonatal NursingCitation Excerpt :Our participants benefitted from slow and repeated communication in which small amounts of information were presented at a time; this allowed them time to process and respond. Our findings are consistent with those of previous researchers who reported that autistic women struggled to bond with their newborns (Gardner et al., 2016). However, in our study, participants associated this delayed bonding with birth experiences that they described as “traumatic” rather than with their autistic traits.
A Socio-Ecological Approach to Understanding the Perinatal Care Experiences of People with Intellectual and/or Developmental Disabilities in Ontario, Canada
2021, Women's Health IssuesCitation Excerpt :At the interpersonal level, young mothers with disabilities, including those with IDD, in Ireland (Walsh-Gallagher et al., 2012) and mothers with Asperger syndrome in the United States (Gardner et al., 2016) similarly reported feeling they had limited say in their perinatal care and that care was not adapted to meet their needs. Like the case study presented by Rogers et al. (2017) and participants in the study by Gardner et al. (2016), the autistic participant in our study also highlighted sensory modulation challenges as impacting their perinatal care experience. The current study, guided by the SEM, contributes to the literature by highlighting barriers and facilitators at multiple levels that shape the perinatal care experiences of people with IDD.
Childbirth Experiences of Women With Autism Spectrum Disorder in an Acute Care Setting
2020, Nursing for Women's HealthCitation Excerpt :Bloch, Lecks, and Suplee (2012) raised concerns that women with ASD may find childbirth stressful and have trouble transitioning to motherhood. These concerns about stress during childbirth were supported by the findings of Gardner et al. (2016), who noted that some women were concerned about their social interactions with the nurses caring for them and that this produced anxiety. Rogers et al. (2017) also found that social interactions with health care professionals including midwives were stressful.
Perinatal issues for women with high functioning autism spectrum disorder
2017, Women and BirthAutistic People’s Perinatal Experiences I: A Survey of Pregnancy Experiences
2024, Journal of Autism and Developmental Disorders
The authors report no conflicts of interest or relevant financial relationships