Parent and Family Impact of Autism Spectrum Disorders: A Review and Proposed Model for Intervention Evaluation

Abstract

Raising a child with an autism spectrum disorder (ASD) can be an overwhelming experience for parents and families. The pervasive and severe deficits often present in children with ASD are associated with a plethora of difficulties in caregivers, including decreased parenting efficacy, increased parenting stress, and an increase in mental and physical health problems compared with parents of both typically developing children and children with other developmental disorders. In addition to significant financial strain and time pressures, high rates of divorce and lower overall family well-being highlight the burden that having a child with an ASD can place on families. These parent and family effects reciprocally and negatively impact the diagnosed child and can even serve to diminish the positive effects of intervention. However, most interventions for ASD are evaluated only in terms of child outcomes, ignoring parent and family factors that may have an influence on both the immediate and long-term effects of therapy. It cannot be assumed that even significant improvements in the diagnosed child will ameliorate the parent and family distress already present, especially as the time and expense of intervention can add further family disruption. Thus, a new model of intervention evaluation is proposed, which incorporates these factors and better captures the transactional nature of these relationships.

Parent and Family Outcomes of PEERS: A Social Skills Intervention for Adolescents with Autism Spectrum Disorder

“…However, comprehensive evaluation of parent and family outcomes is limited in ASD intervention research, and practically non-existent in research of social skills programs. This limitation has led to incomplete understanding of factors associated with positive treatment outcomes, particularly over the long term (Karst and Van Hecke 2012).…”

“…However, there is great variability in therapy options available for children and adolescents with ASD, and marked discrepancy remains among the outcome measures used to determine empirical support for these interventions. The great majority of outcome studies to date have focused directly on the child, ignoring the broader family environmental context and leading to an incomplete picture of the benefits and costs of any particular treatment (Karst and Van Hecke 2012). The limited research on family and parent outcomes, which to date has primarily stemmed from evaluation of parent training programs, suggests a number of family and caregiver-level benefits of intervention; including improved family relationships (Rogers 2000;Schertz and Odom 2007), reduced levels of parenting stress and depression (McConachie and Diggle 2007;Roberts and Pickering 2010) and greater parenting self-efficacy (e.g., Sofronoff and Farbotko 2002).…”

The Mediating Effects of Positive Cognitions on Autism Caregivers' Depression and Their Children's Challenging Behaviors

“…There is ample research that has focused on the relationship between maternal depression and childhood behavioral problems (Baker et al, 2011, Karazsia and Wildman, 2009and Karst and Van Hecke, 2012. A recent study conducted by Raposa, Hammen, Brennan, and Najman (2014), found that prenatal maternal depressive symptoms predicted worse physical health during early childhood for offspring, and this effect was partially explained by ongoing maternal depression in early childhood.…”

“…Furthermore, their research showed that maternal depression had a significant total indirect effect on youth depression via early childhood health and its psychosocial consequences. In addition, research has shown that the challenging behaviors of children with ASD can lead to poor maternal psychological well-being (Allik et al, 2006, Herring et al, 2006and Karst and Van Hecke, 2012 and impaired maternal health related quality of life (Allik et al, 2006). However, previous studies have not examined the mediating effects of positive cognitions on the relationship between caregivers' depression and their children's challenging behaviors as proposed in this study.…”

Expressed Emotion and Alexithymia in Mothers of Autistic Children

“…This problem not only affects the life of people all through their lives, but also influences their parents who play a significant role in their growth (Karst & Van Hecke, 2012).The birth of children with special needs brings about different problems such as stress and depression for their parents (Eisenhower, Baker, & Blacher, 2005). Parental characteristics affect the way these parents interact with their children (Aydin, 2015).…”