Having a child with ASD profoundly impact all aspects of family life including shifts in the roles and responsibilities within the family as well as family relationships and interactions (Alli et al., 2015; DePape & Lindsay, 2015; Karst & Van Hecke, 2012; Meadan et al., 2010).
A family with a child with ASD has to make significant adjustments to their lives at a logistical level as well as psychosocially, in order to cope and function adequately (Altiere & Von Kluge, 2009; Estes et al., 2014). The family as a whole face a number of challenges however parents are at the forefront of managing the impact on the family and caring for the child with ASD.
Changes in daily life, financial stress and the impact on relationships within the family were common themes mentioned across a number of studies in a metasynthesis by DePape and Lindsay (2014) and in a number of other studies (Mount & Dillon, 2014).
Studies suggest that daily life changed in a number of ways for the parents and siblings of children with ASD causing frustration and a feeling of being overwhelmed. Parents reported feeling unsure about how to manage behaviour problems or how to cope with the increased demands on them. Some parents also reported deterioration in marital satisfaction (Rogers, 2008, cited in Falk, 2014), strains on relationships with their other children, limitations on social ability of parents and the family as a whole, and increased financial strain due to costs of treatments as well as provision of care (Davis & Carter, 2008; DePape & Lindsay, 2014;
46 Glazzard & Overall, 2012; Huang et al., 2013; Jones et al., 2014; Mount & Dillon, 2014; Tehee, Honan, & Hevey, 2008).
Having a child with ASD often resulted in decreased family quality time and time for recreational activities (Altiere & Von Kluge, 2009; Meadan et al., 2010; Nealy et al., 2012;
Schlebusch et al., 2016).
Families often have concerns about socially inappropriate behaviour which results in restrictions on the activities the family can get involved in as well as limiting the possibility of spontaneous family leisure activities (Nealy et al., 2012). These factors demonstrate the number of ways general family life is affected.
2.8.1 Daily life/ continuous care
According to studies, parents reported realising early on that caring for a child with autism was a 24-hour, 7-days-a-week task (Altiere & Von Kluge, 2009) involving the need to plan and schedule every aspect of each day (Carlsson et al., 2016). Caring for a child with ASD impacted every aspect of daily life for parents and the whole family (Carlsson et al., 2016; DePape &
Lindsay, 2015) as families report that the majority of their day revolving around autism and the child’s needs (DeGrace, 2004; Woodgate et al., 2008). Studies suggest that children with ASD require attention from a family member continuously thus demands of care are relentless and at times overwhelming (Alli et al., 2015; Altiere & Von Kluge, 2009; Carlsson et al., 2016;
DePape & Lindsay, 2015; Woodgate et al., 2008).
Literature suggests that for parents with a child who has ASD there was a level of continuous and unremitting management that filled their daily lives. This experience is described succinctly in a study by DeGrace (2004):
The families describe their days as “insane” and “hectic” where “every second counts.” From the time the children rise until the time they go to sleep, they require the attention of a family member. For example, the children require prompting and assistance to get dressed, to get a bath, and to brush their teeth. This was best captured by the Greens, who referred to having a child with autism as being “like having an infant.” (p. 545).
Having a child with ASD impacted the way a family unit functions, its overall well-being and harmony as much as it impacted the individuals within the unit (Hayes & Watson, 2013;
47 DePape & Lindsay, 2015; Karst & Van Hecke, 2012; Meadan et al., 2010; Mitchell & Holdt, 2014).
Caring for a child with ASD is a 24/7 endeavour that absorbs and drains most of their time and energy, leaving little room for leisure activities or the energy for either of these. This continuous care is reported to have an impact on relationships within the family, including relationships with spouses as well as other children in the family.
2.8.2 Challenges in parent’s marital relationships
Findings regarding the impact of having a child with ASD on caregivers’ marital relationship have been mixed. Some studies report higher divorce rates amongst parents of children with ASD (Falk, 2014; Karst & Van Hecke, 2012; Nealy et al., 2012).
Understandably, there is evidence that having a child with ASD may have a negative impact as some parents reported strained relationships, low levels of happiness and increased conflict (DePape & Lindsay, 2015; Falk, 2014; Jones et al., 2014; Karst & Van Hecke, 2012; Meadan et al., 2010; Mitchell & Holdt, 2014; Tehee et al., 2008). DePape and Lindsay (2015), found that some parents reported conflict around roles within the family and perceived levels of support that impact marital harmony. In contrast, some studies suggest that parents report positive effects on their relationships such as increased closeness (DePape & Lindsay, 2015;
Meadan et al., 2010).
Having a child with ASD placed increased demands on the entire family unit without much time for parents to process the diagnosis or grieve the loss of their expectations for their child and their own future. Parents have to recalibrate their roles and responsibilities “on the go” and when parenting a child with ASD, research suggested that parents have little time for themselves- one can imagine this would impact the marital system in the same way.
2.8.3 Siblings
Parents reported that their relationships with their other children was affected by the burden of care associated with having a child with ASD as parents struggled to balance each child’s needs with limited free time to spend with their other children (DePape & Lindsay, 2014; Glazzard
& Overall, 2012).
48 The lifelong burden of ASD inevitably impacted the siblings of the child with ASD however findings on whether this impact was purely negative have been inconsistent (Altiere & Von Kluge, 2009; DePape & Lindsay, 2015; Meadan et al., 2010; Van der Merwe et al., 2017).
Typically developing siblings may experience difficulty interacting with the sibling with ASD as deficits may impact their ability to connect and relate (Van der Merwe et al., 2017). Siblings may also have difficulty with the unequal division of attention in the family as their daily lives revolve around autism and the affected siblings needs (Altiere & Von Kluge, 2009; DePape &
Lindsay, 2015). Some studies have reported positive effects on siblings such as higher levels of maturity (Altiere & Von Kluge, 2009; DePape & Lindsay, 2015; Hastings, 2003a; Meadan et al., 2010; Mitchell & Holdt, 2014). These internal dynamics relate to parent experiences as they constitute an additional stressor on the parents as they attempt to navigate the needs of the child with ASD and their typically developing sibling.
Despite inconsistent reports on outcomes for siblings and a lack of clarity regarding positive versus negative outcomes, the stress of having a sibling with ASD (and in turn living in a household caring for a child with ASD) should not be dismissed (Pilowsky et al., 2004, cited in Meadan et al., 2010).
Meadan et al. (2010) found that some studies have suggested that demographic factors may be predictive of adjustment in siblings of children with ASD (e.g. Kaminsky & Dewey, 2002;
Rivers & Stoneman, 2003; Ross & Cuskelly, 2006). This was supported by Macks and Reeve (2007) who argue that the presence of demographic risk factors impacted the siblings ability to cope emotionally and psychologically with their autistic sibling. They argued that siblings of a child with ASD were more likely to be affected by certain demographic factors such as birth order (being older than the child affected by ASD), being male, only having one sibling and low socioeconomic status of the family (Macks & Reeve, 2007; Meadan et al., 2010).
A recent study in South Africa by Van der Merwe et al. (2017) shedding light on the attitudes of siblings of children with ASD found that sibling attitudes became more positive over time despite reports of ongoing obstacles in interactions with their sibling with ASD. This study suggested that siblings developed greater understanding and empathy for their affected sibling however still continue to be challenged by daily difficulties related to the ASD. This is mirrored by research suggesting that over time some parents are able to move towards acceptance and more positive perceptions of their child affected by ASD. Both parents and siblings have been
49 shown to report greater difficulties when the child affected by ASD presents with higher levels of behavioural problems.
Parents ultimately have to attempt to balance providing care for siblings and the child with ASD, which is often difficult as families often report having to orientate family life towards the needs of the child with ASD. Thus the adjustment and coping of their typically developing children may constitute an additional stressor for many parents.