Occupational (im) balance in mothers with autism: A qualitative approach

Introduction: The Importance of Occupational Balance for Autistic Mothers

 

Autism spectrum disorder (ASD) affects every aspect of daily life, particularly for women who are also mothers. The demands of parenting, household responsibilities, personal care, and external expectations create a complex juggling act that significantly impacts their occupational balance—defined as a state of equilibrium between various activities. Occupational balance is a key factor for maintaining well-being, and this research delves into how mothers with autism spectrum disorder experience and manage their daily occupations.

 

While much research has focused on autism in children and men, the specific experiences of women with autism, especially those who are mothers, remain underexplored. Women with autism are more prone to stress, burnout, and emotional challenges. Many mothers with autism struggle to find harmony in managing their family, work, and personal life, leading to occupational imbalance. This study, focusing on nine mothers in Flanders, Belgium, seeks to understand how these women experience occupational balance and to identify the factors that contribute to or hinder their ability to manage daily life.

 

What is Occupational Balance?

 

Occupational balance is rooted in the field of Occupational Science, where it is defined as the subjective experience of having the right mix of occupations in various life domains, such as work, leisure, caregiving, and rest. Achieving occupational balance involves participating in meaningful and diverse activities that fulfill personal needs and contribute to well-being. However, for mothers with autism, the process of balancing these occupations is often challenging due to their unique cognitive and sensory sensitivities.

 

Research shows that women with autism are more likely to experience burnout, particularly when trying to manage multiple roles in a social environment that may not fully understand or accommodate their needs. Autism influences every aspect of their daily activities, including work, parenting, and leisure. Parenting, in particular, presents significant challenges, with many mothers reporting high levels of stress and difficulty managing the unpredictability of raising children while balancing their personal needs.

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Research Aims: Understanding Occupational Balance in Mothers with Autism

 

This qualitative study aimed to gain insight into the experiences of Flemish mothers with autism regarding occupational balance. It explored how these mothers navigate the complexities of their roles, manage sensory sensitivities, and cope with external pressures. By identifying the barriers and facilitators that influence occupational balance, the study seeks to provide a framework for developing targeted interventions that can support mothers with autism in achieving a more balanced life.

 

Methodology: A Qualitative Phenomenological Hermeneutic Approach

 

To capture the experiences of these mothers, the researchers used a phenomenological hermeneutic method, which focuses on understanding the lived experiences of individuals. Nine mothers aged 36 to 55 participated in the study, all of whom were diagnosed with autism in adulthood, within the last one to 10 years. These women were purposively recruited through the Autism Association Flanders, which provided a homogeneous group with shared characteristics, including being in active parenting roles.

 

Data were collected through semi-structured interviews, guided by the Dutch version of the Occupational Balance Questionnaire (OBQ-11 NL). This questionnaire consists of 11 items assessing the perceived balance of daily occupations, focusing on the variety and quantity of activities, as well as their meaningfulness. The interviews were transcribed, and a phenomenological analysis was conducted to identify key themes related to occupational balance.

 

Key Findings: Five Themes Shaping Occupational Balance

 

The analysis of the interviews led to the identification of five key themes that reflect the dynamic process of occupational balance for mothers with autism. These themes highlight both the challenges and strategies that these mothers use to manage their daily lives.

 

1.     Personal, Occupational, and Environmental Antecedents

 

One of the most critical factors in achieving occupational balance is understanding one’s own personal limits and sensory sensitivities. The participating mothers emphasized that self-awareness—recognizing when they are becoming overwhelmed or overstimulated—is crucial in maintaining balance. Emotional and practical support from partners and family members was also identified as a key enabler, helping the mothers manage the demands of daily life.

 

Structure and predictability were important for these mothers, though many expressed the need for variety to avoid feelings of boredom or frustration. They highlighted the importance of balancing structured routines with opportunities for spontaneous activities, noting that too much rigidity could lead to feelings of confinement, while too little structure could result in chaos.

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2.     Cognitive Capacities: The Mental Workload of Balancing Roles

 

Cognitive skills such as planning, prioritization, and self-regulation are essential for maintaining occupational balance. The participants reported that managing multiple roles—such as being a mother, a partner, a worker, and an individual—requires a great deal of cognitive effort. Many of the mothers expressed a need for time to transition between different roles, emphasizing that shifting from one role to another could be mentally taxing.

 

Rest and recovery were identified as vital components for sustaining cognitive capacities. Many mothers noted that they needed time for activities that allowed them to recharge, such as engaging in creative outlets, physical activities, or simply resting. However, they also struggled with prioritizing these restorative activities, often placing their children’s needs before their own.

 

3.     (Self-)Management: Juggling Roles and Responsibilities

 

Managing the different roles and responsibilities in their lives was a significant challenge for the mothers in the study. Parenthood, in particular, was described as the most unpredictable and demanding role, leaving little room for other activities. Many participants reported that they had to limit social interactions or professional engagements to focus on their family, which often led to feelings of isolation and frustration.

 

Some mothers noted that their inability to manage all their roles effectively had led to burnout or the decision to leave the workforce. For these mothers, achieving occupational balance often meant making difficult choices, such as giving up work or significantly reducing their social activities to focus on parenting. These choices were often influenced by the unique challenges of autism, including difficulties with executive function, sensory sensitivities, and the unpredictability of daily life.

 

4.     Outcomes: The Personal Impact of Occupational (Im) balance

 

Occupational balance, when achieved, had a profound positive impact on the participants’ well-being. Many reported that when they felt balanced, they were more patient with their children and had more energy to engage in meaningful activities. Conversely, occupational imbalance often led to negative outcomes, including feelings of guilt, frustration, and burnout.

 

The mothers in the study were constantly evaluating their own experiences of balance, reflecting on what worked and what didn’t in their daily routines. Many described the process of achieving balance as an ongoing journey, requiring frequent adjustments to their schedules, activities, and roles.

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5.     Life Domains: Work, Social, and Family Life

 

The final theme identified inthe study was the impact of occupational balance across different life domains, including work, social activities, parenting, and personal care. Many of the mothers had experienced burnout multiple times, particularly in relation to their roles as parents and caregivers. For some, this burnout led to their autism diagnosis, as the constant struggle to balance their various roles brought their cognitive and sensory challenges to the forefront.

 

Work was a significant challenge for many of the mothers, with several reporting that they had to leave their jobs due to the demands of parenting and the sensory overload associated with autism. However, despite leaving the workforce, these mothers still expressed a desire to engage in meaningful work or contribute to society in other ways, such as through volunteer work or creative projects.

 

Social activities were another area of difficulty, as many of the mothers reported that maintaining social relationships required a great deal of energy. While social interactions could be enjoyable, they were also a source of stress, as the unpredictability and sensory demands of socializing often outweighed the benefits.

 

Discussion: The Dynamic Process of Occupational Balance

 

The study highlights that occupational balance for mothers with autism is not a static state but a dynamic, ongoing process. Balancing different roles and responsibilities requires constant adaptation, self-awareness, and the ability to make difficult choices. For these mothers, achieving balance was closely tied to their ability to manage their own cognitive and sensory needs, as well as the demands of their family and social environment.

 

Key facilitators of balance included support from partners, clear communication, and the ability to set boundaries and prioritize self-care. However, societal expectations, a lack of understanding from others, and the cognitive demands of managing multiple roles were significant barriers to achieving occupational balance.

 

Conclusion: Supporting Occupational Balance in Mothers with Autism

 

The findings of this study underscore the importance of understanding the unique challenges faced by mothers with autism in achieving occupational balance. By recognizing the personal, cognitive, and environmental factors that influence balance, clinicians can develop more effective, tailored interventions that address the specific needs of this population.

 

Occupational balance is a deeply personal and dynamic process, requiring a nuanced understanding of the individual’s cognitive capacities, sensory sensitivities, and social environment. For mothers with autism, achieving balance means navigating a complex web of roles and responsibilities, often with limited external support. By providing targeted interventions that support self-management, cognitive flexibility, and social engagement, clinicians can help these mothers achieve a greater sense of control and well-being in their daily lives.

 

The study opens up avenues for further research, particularly in developing strategies to support autistic mothers in managing occupational balance. Exploring the long-term outcomes of these interventions could provide valuable insights into how to better support this often-overlooked population, enabling them to thrive both as individuals and as caregivers.

 

Source:

https://documentserver.uhasselt.be/bitstream/1942/43823/1/6217c8b0-ccb3-42dd-9fff-568b0b86f4df.pdf

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