Building Statewide Support for Kentucky Families of Individuals with ASD

AbstractThe recent data suggest that there has been a steady increase in the prevalence of autism spectrum disorders (ASD; Centers for Disease Control, 2012). This lifelong disorder has significant implications for families as they face the complexities of supporting their family members with ASD. Fortunately, the research literature suggests that families can benefit from training and access to parent-focused resources. The purpose of this paper is to describe a model used by one university-based autism center to establish systems of support for families of persons with ASD.Keywords: Autism Spectrum Disorders, family support, parent training, parent resourcesAutism spectrum disorders (ASD) are characterized by significant impairments in social and communicative functioning that are pervasive across environmental domains and present across the lifespan (American Psychiatric Association, 2001). Furthermore, individuals with ASD may engage in stereotyped, repetitive behaviors and exhibit a restricted range of interests, limiting parents' and professionals' opportunities to capitalize on typical motivators during daily interaction. Data suggest that the prevalence of ASD is steadily increasing and that millions of people are impacted worldwide. For example, the Centers for Disease Control (2012) recently released data suggesting that the prevalence rates in the United States have risen from 1 in 153 children in 2002 to 1 in 88 in 2012. Competing research teams have espoused theories for this rapid increase, but, to date, the research community has not come to consensus around a single culpable variable (Eagle, 2004; Landrigan, 2010).Among the persons impacted by autism are the families charged with the provision of care for their children with ASD. Researchers have demonstrated that, compared to parents of typically developing children, parents of children with ASD consistently report higher levels of stress, depression, and anxiety (Montes &. Halterman, 2008; Rao &. Beidel, 2009). Parents have suggested that having a child with ASD often results in significant adjustments to family life, including an increased strain on marital relationships, less time to engage in family activities, and having to give up on family outings and vacations (DeGrace, 2004; Hutton & Caron, 2005). These challenges associated with family adjustment are exacerbated by difficulties in accessing childcare or appropriate treatment services and balancing the demands of child care while meeting the expectations of employment (Gray, 1994; Montes &. Halterman, 2008).Fortunately, data suggest that not all families are impacted equally and that some report positive outcomes related to having a child with ASD (Hastings & Taunt, 2002). For example, Beat (2007) reported that 62% of families surveyed indicated that their family grew closer as a result of having a child with ASD. Families also reported that having a family member with ASD helped them become more compassionate, less selfish, and mindful of individual differences. These data paint an optimistic picture for families affected by a diagnosis of autism, and, fortunately, researchers have identified several factors that may contribute to positive family adjustment. Some of these factors include access to social supports (Twoy, Connolly, & Novak, 2007), having a perceived internal locus of control (Dunn, Burbine, Bowers, &. Tuntleff-Dunn, 2001), and parent training (Tonge et al., 2006).The consideration of these factors is critical in building systems of support for families of individuals with ASD. Programs and resources should be directed at fostering relationships between families and facilitating access to community supports, services, and parental training across multiple areas (e.g., navigating mental health and educational systems, intervention, transition). The purpose of this paper is to describe a model used by one university-based autism center to establish systems of support for families of persons with ASD. …