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Clin Child Fam Psychol Rev (2012) 15:247277
DOI 10.1007/s10567-012-0119-6
Parent and Family Impact of Autism Spectrum Disorders: A Review and Proposed Model for Intervention Evaluation
Jeffrey S. Karst Amy Vaughan Van Hecke
Published online: 7 August 2012 Springer Science+Business Media, LLC 2012
Abstract Raising a child with an autism spectrum disorder (ASD) can be an overwhelming experience for parents and families. The pervasive and severe decits often present in children with ASD are associated with a plethora of difculties in caregivers, including decreased parenting efcacy, 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 signi-cant nancial 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 inuence on both the immediate and long-term effects of therapy. It cannot be assumed that even signicant 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.
Keywords Autism spectrum disorders Parents
Caregivers Families Intervention
Introduction
Autism spectrum disorders (ASD) represent a spectrum of complex, neurological, and developmental disorders characterized by decits in reciprocal social interaction and communication, along with the presence of restricted, repetitive, and stereotyped interests and behaviors. These decits manifest in early development and are pervasive in nature, affecting individuals throughout their lifespan. The impairments germane to ASD not only affect the diagnosed individual but also his or her caregivers, family, teachers, and community. The current prevalence rates of ASD are estimated at approximately one in 88 children in the United States (Center for Disease Control and Prevention 2012). The rate of ASD diagnoses in the United States and elsewhere has shown a sharp increase...