“We are in this together”: Experiences of relationship satisfaction in couples raising a child with autism spectrum disorder
Introduction
The couple relationship remains the keystone of family functioning in modern times (Meunier & Baker, 2012; Minuchin, 1985; Schulz, Pruett, Kerig, & Parke, 2010) and may play an important role in the adjustment of families of children with autism spectrum disorder (ASD). Yet, little is understood about the contexts in which couples maintain relationship satisfaction and promote family resilience.
ASD is a lifelong neurodevelopmental condition characterised by impairments in social communication and interaction, and restricted, repetitive patterns of behaviour, interests or activities (American Psychiatric Association, 2013). Comorbid developmental, intellectual, psychological and medical conditions are common (Accardo & Malow, 2015; American Psychiatric Association, 2013; Mannion & Leader, 2013; Matson & Goldin, 2013; Matson, Matson, & Beighley, 2011; Simonoff et al., 2008). Although ASD symptoms and associated challenging behaviours may abate over time (Seltzer, Shattuck, Abbeduto, & Greenberg, 2004; Shattuck et al., 2007), the child often requires support and intensive caregiving into adulthood (Bower Russa, Matthews, & Owen-DeSchryver, 2015; Burke & Heller, 2016).
Parents of a child with ASD experience greater levels of stress and decreased self-efficacy, psychological and physical wellbeing, and relationship satisfaction than parents of children without ASD (Giallo, Wood, Jellet, & Porter, 2013; Hayes & Watson, 2013; Karst & Van Hecke, 2012; Khanna et al., 2011; Lai, Goh, Oei, & Sung, 2015; Sim, Cordier, Vaz, & Falkmer, 2016). One of the most documented stressors is the need to manage challenging behaviours associated with ASD (Davis & Carter, 2008; Estes et al., 2013; Herring et al., 2006; Lecavalier, Leone, & Wiltz, 2006; Peters-Scheffer, Didden, & Korzilius, 2012; Tomanik, Harris, & Hawkins, 2004) and these can place families at risk of stigmatisation and social isolation (Corcoran, Berry, & Hill, 2015; Gorlin, McAlpine, Garwick, & Wieling, 2016; Kinnear, Link, Ballan, & Fischbeach, 2016; Myers, Mackintosh, & Goin-Kochel, 2009). Additionally, caregivers face challenges selecting, accessing and coordinating medical, therapy and educational services (Bonis & Sawin, 2016; DePape & Lindsay, 2015). Best practice emphasises early and intense multi-modal intervention with high levels of parental involvement (Altiere & von Kluge, 2009; Burrell & Borrego, 2012; Goepfert, Mule, von Hahn, Visco, & Siegel, 2015; Hodgetts, Nicholas, Zwaigenbaum, & McConnell, 2013; Mackintosh, Goin-Kochel, & Myers, 2012; Valentine, Rajkovic, Dinning, & Thompson, 2011). Consequently, the caregiving needs of a child with ASD can monopolise parent time and energy and result in neglect to other areas of family life. For example, parents often express concern for the wellbeing of their children without ASD, reduced quality time with their partner, reduced participation in leisure activities, and changes to employment that can affect availability of social support and cause financial strain (Corcoran et al., 2015; DePape & Lindsay, 2015; Fletcher, Markoulakis, & Bryden, 2012; Hartley, DaWalt, & Schultz, 2017; Hoogsteen & Woodgate, 2013; Horlin, Falkmer, Parsons, Albrecht, & Falkmer, 2014; Mackintosh et al., 2012; Myers et al., 2009; Sawyer et al., 2010). It is plausible that the constellation of all of the above mentioned factors are interrelated and lead to a circular loop of diminished relationship satisfaction over time (Sim et al., 2016).
Despite reported challenges, many couples adapt positively to raising a child with ASD (Ekas, Timmons, Pruitt, Ghilain, & Alessandri, 2015; Ramisch, Onaga, & Oh, 2013; Sim, Cordier, Vaz, Parsons, & Falkmer, 2017, 2016) and some even assert that the experience strengthened their relationship (Hock, Timm, & Ramisch, 2012; Marciano, Drasgow, & Carlson, 2015; Markoulakis, Fletcher, & Bryden, 2012; Myers et al., 2009). This is consistent with family resilience theories, which postulate that adverse circumstances can lead to personal and relational transformations through the discovery of untapped resources and strengths (Walsh, 2002). For example, qualitative studies report on personal growth amongst caregivers including the strengthening of empathic responding, tolerance, selflessness, humility, assertiveness, determination, perseverance and unconditional love (Bayat, 2007; Marciano et al., 2015; Markoulakis et al., 2012; Myers et al., 2009; Ooi, Ong, Jacob, & Khan, 2016). Some couples attempt to make meaning out of their situation and reprioritise areas of importance (Altiere & von Kluge, 2009; Bayat, 2007). Thus, parenting challenges may create opportunities to work together for the benefit of the family, ultimately bringing them closer over time (Hock et al., 2012).
Traditionally, effective intra-couple communication was considered one of the most important positive dimensions of relationship satisfaction and has been a key element of couple interventions (Karney & Bradbury, 1995). However, researchers postulate that communication is more effective when stress experienced by the couple is better managed. Consequently, recent research has focussed on the impact of dyadic coping (Bodenmann & Shantinath, 2004). Dyadic coping describes the efforts made by a couple in managing stress that affects their relationship, and might include strategies such as helping each other with practical tasks, joint problem solving or relaxing together (Bodenmann, 1997). There is emerging evidence that interventions aimed at strengthening dyadic coping increase relationship satisfaction in the general population (Bodenmann & Shantinath, 2004; Bodenmann, Pihet, Shantinath, Cina, & Widmer, 2006; Bodenmann, Hilpert, Nussbeck, & Bradbury, 2014). Such interventions may also be relevant to couples with a child with ASD, as a recent study found that satisfied couples were more likely to engage in positive rather than negative dyadic coping strategies than dissatisfied couples (Sim et al., 2017a). Consistent with this finding, another study found that mothers and fathers supportive dyadic coping related to their own and their partner’s relationship satisfaction (Garcia-Lopez, Sarria, Pozo, & Recio, 2016). Partner support and joint coping strategies may be especially pertinent in couples with children with ASD due to the social isolation and associated decrease in support experienced (Fletcher et al., 2012; Ooi et al., 2016).
To date, ASD research has overwhelmingly focussed on the impact of raising a child with ASD on the parents, overlooking the potentially protective role of the couple relationship and its influence on the family. The challenges faced by families have been well documented; however, some families appear to emerge from this adversity strengthened and more resourceful when viewed through the family resilience framework lens (Walsh, 1996, 2003). This framework offers a useful perspective in interpreting how families surmount challenges and positively adjust even in the midst of overwhelming stress (Walsh, 1996). It describes vital family processes within three domains of family functioning: belief systems, patterns of family organisation and communication processes (Walsh, 2016b). As the nucleus of the family, the couple relationship is integral to these family processes and may be the key to family resilience as studies show that relationship satisfaction is associated with improved child behaviours, reduced stress and positive adjustment in families raising a child with ASD (Benson & Kersh, 2011; Hartley, Barker, Baker, Seltzer, & Greenberg, 2012; Weitlauf, Vehorn, Taylor, & Warren, 2014). Yet, few researchers have focussed their efforts on resilient couples and used their experiences to inform meaningful family-centred practice. Thus, the current study aimed to explore experiences of couples raising a child with ASD who self-report satisfaction in their relationship with their partner.
Section snippets
Research design
To address the study’s aim, a phenomenological approach was used to elucidate a comprehensive understanding of relationship satisfaction in couples raising a child with ASD and how it can be maintained. It was designed to explore and give meaning to a preceding cross-sectional survey which collected data on socio-demographics, parenting stress, dyadic coping and relationship satisfaction (Sim, Cordier, Vaz, Parsons, & Falkmer, 2017).
Sampling and recruitment
To be eligible for this study, couples were required to be: 1)
Findings
The overall essence that emerged from the data was captured with the quote, “We are in this together”. Couples expressed the belief that raising a family was a long-term commitment and acknowledged the importance of a solid partnership in achieving this. Ms A summarised: “We both went into it thinking we are both a part of this, we both want to make it work and help [our child] any way we can. We will do a better job of that together”.
The shared experiences of raising a child with ASD brought
Discussion
The purpose of this study was to gain insight into the relational experiences of couples raising a child with ASD who report relationship satisfaction, acknowledging them as an important source of resilience for families. The overall essence of “We are in this together” encapsulated three main themes: 1) Shared beliefs, 2) Teamwork, and 3) Shared experiences, which closely paralleled the three interactive domains of the family resilience framework (Walsh, 2003, 2016a). Resilience is the
Conflict of interest
The authors declare that there are no conflicts of interest.
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