Elsevier

Nursing for Women's Health

Volume 20, Issue 1, February–March 2016, Pages 28-37
Nursing for Women's Health

Exploratory Study of Childbearing Experiences of Women with Asperger Syndrome

https://doi.org/10.1016/j.nwh.2015.12.001Get rights and content

Abstract

Increasing numbers of girls have been diagnosed with Asperger syndrome and other autism spectrum disorders (ASDs) over the past two decades; therefore, more women with ASDs are entering the childbearing phase of their lives. Little is known about the childbearing experiences of women with ASDs. This qualitative study describes the childbearing experiences of eight women with Asperger syndrome. Four major themes emerged: Processing Sensations, Needing to Have Control, Walking in the Dark, and Motherhood on My Own Terms. Clinicians can provide sensitive, individualized care by asking women with Asperger syndrome about their specific sensory experiences, counseling them about coping strategies for sensory intrusions, providing targeted support, and modifying the clinical environment to decrease distressing stimuli.

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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    The authors report no conflicts of interest or relevant financial relationships

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