Families with Children Who Have Autism Spectrum Disorders: Stress and Support
Meadan, Hedda, Halle, James W., Ebata, Aaron T., Exceptional Children
Autism spectrum disorders (ASD) refers to a wide variety of complex developmental disorders that typically appear during the first 3 years of life. The fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR; American psychiatric Association, APA, 2000) identifies ASD as part of a larger grouping, pervasive developmental disorders (PDD). According the DSM-IV-TR there are five subtypes of PDD: autistic disorder, Asperger's syndrome (AS), childhood disintegrative disorder (CDD), Rett's syndrome, and pervasive developmental disorder-not otherwise specified (PDD-NOS). The three core features of ASD are impairments in social interactions, impairments in verbal and nonverbal communication, and restricted and repetitive patterns of behavior (APA, 2000). ASD affects approximately 1 in every 110 children and is growing at a rate of 10% to 17% per year (Centers for Disease Control and Prevention, n.d.). This trend has roused a growing interest in the impact of autism on the family.
Many individuals with ASD have behavior repertoires (e.g., limited verbal communication, deficits in social behavior, aggressive behavior) that might be expected to have an impact on members of both the immediate and extended family (Hastings, Kovshoff, Ward, et al., 2005). Parents, primarily mothers, of individuals with ASD reported significantly more stress and lower levels of well-being than both parents of children without disabilities and children with other disabilities (e.g., Abbeduto et al., 2004; Baker-Ericzen, Brookman-Frazee, & Stahmer, 2005; Weiss, 2002). This stress could have a negative impact on parents, leading to depression, anger, anxiety, and marital discord (Bromley, Hare, Davison, & Emerson, 2004; Higgins, Bailey, & Pearce, 2005; Weiss, 2002). In addition, parents of children with PDD reported lower levels of quality of life compared to parents of children with cerebral palsy or mental retardation (Mugno, Ruta, D'Arrigo, & Mazzone, 2007). Furthermore, a few researchers have reported negative outcomes (e.g., loneliness) for typically developing siblings of individuals with ASD (Hastings, 2003a; Rivers & Stoneman, 2003).
Although research reveals an impact on family members of individuals with ASD, Hastings, Kovshoff, Ward, et al. (2005) emphasize that not all family members experience similar effects as a result of having an individual with ASD in the family. For example, Hastings (2003b) found that mothers of children with ASD reported more anxiety and negative outcomes than fathers in the same family. In addition, researchers have found positive outcomes (e.g., limited conflicts within the relationship, high self-esteem and self-concept) for some typically developing siblings of individuals with ASD (Kaminsky & Dewey, 2002; Pilowsky, Yirmiya, Doppelt, Gross-Tsur, & Shalev, 2004) and some parents described the experience of having a child with ASD as being positive (Hutton & Caron, 2005).
To understand the different experiences of family members, researchers have examined the relationship between stress and negative outcomes (e.g., depression) and between support systems or strategies (e.g., respite services, social network) and positive outcomes (Boyd, 2002; Jones & Passey, 2004; Shu & Lung, 2005). Researchers who conducted investigations (e.g., Sanders & Morgan, 1997; Sharpley, Bitsika, & Efremidis, 1997) and authors who conducted reviews of investigations (e.g., Glasberg, Martins, & Harris, 2006) related to stress and coping among family members of individuals with ASD, prior to 2000, found that (a) mothers of children with ASD reported more stress than mothers of children with Down syndrome (DS) and with typically developing children; (b) mothers of children with ASD experienced more stress, anxiety, and depression than fathers of children with ASD; (c) social support countered stress in parents of children with ASD; and (d) there were contradictory findings related to the adjustment of siblings of children with ASD. …