Academic journal article Family Relations

Factors Associated with Caregiver Burden among Parents of Individuals with ASD: Differences across Intellectual Functioning

Academic journal article Family Relations

Factors Associated with Caregiver Burden among Parents of Individuals with ASD: Differences across Intellectual Functioning

Article excerpt

Approximately 1 in 88 individuals have an autism spectrum disorder (ASD), and the pro- portion of children diagnosed is on the rise (Centers for Disease Control and Prevention [CDC], 2012). ASD is a neurodevelopmental disorder characterized by social deficits, com- municative difficulties, and repetitive behaviors, with evidence of cognitive dysfunction (American Psychiatric Association [APA], 2013). Although ASD is most widely known as a childhood disability, symptoms persist into adolescence and adulthood, where individuals continue to experience social difficulties, com- municative impairments, stereotyped behavior (Ballaban-Gil, Rapin, Ruchman, & Shinnar, 1991; Fecteau, Mottron, Berthiaume, & Burack, 2003; Howlin, Goode, Hutton, & Rutter, 2004; Matson & Horovitz, 2010; see Seltzer, Shattuck, Abbeduto, & Greenburg, 2004, for a review), and comorbid mental health issues (Davis et al., 2011; Palucka & Lunsky, 2007; Seltzer et al., 2004). Adolescents and adults with ASD also have sustained impairments in academic per- formance, employment, social relationships (Howlin et al., 2004; Mao, 2012), and adap- tive functioning (Chadwick, Cuddy, Kusel, & Taylor, 2005). Despite these significant impair- ments, access to health services and supports become increasingly difficult as individuals with ASD age out of the pediatric system (Autism Ontario, 2008). After age 21, young adults are no longer integrated in public school and child health systems, and identification and coordination of appropriate structured daytime activities can become particularly challenging (Mao, 2012). Consequently, many young adults remain highly dependent on their families for support (Ballaban-Gil et al. 1991; Howlin et al., 2004; Levy & Perry, 2011; Mao, 2012). In a recent review of outcomes for adults with ASD, the number of adolescents and adults living with families ranged from approximately 22% to 70% (Howlin & Moss, 2012), leaving many parents with the responsibility of health care and social service provision for their adult child in addition to behavior management and assistance with daily living.

Caring for an individual with ASD is associ- ated with high levels of caregiver burden-"the perception of psychological distress, anxiety, depression, demoralization, and generalized loss of personal freedom attributed directly to caregiving" (Lawton, Moss, Kleban, Glicks- man, & Rovine, 1991, p. 182)-from the time of diagnosis (Stuart & McGrew, 2008), and throughout childhood (Lee, Harrington, Louie, & Newschaffer, 2008; Rodrigue, Morgan, & Geffken, 1990), adolescence, and young adult- hood (Cadman et al., 2012; Kring, Greenberg, & Seltzer, 2008; Lee et al., 2008; Lin, 2011). Health care costs are substantially higher for children with ASD (Croen, Najjar, Ray, Lot- spiech, & Bernal, 2006), and parents report greater financial burden compared to care- givers of children with physical and intellectual disabilities (Xiong et al., 2011). Additionally, parents of individuals with ASD report lower personal well-being compared to parents of those with Fragile X syndrome (Abbedutto et al., 2004), Down syndrome (Abbedutto et al., 2004; Blacher & McIntyre, 2006), cerebral palsy (Blacher & McIntyre, 2006), attention-deficit/hyperactivity disorder (ADHD; Cadman et al., 2012), and undifferentiated intellectual disabilities (Blacher & McIntyre, 2006). Caregiver burden is also associated with parent depression, anxiety (Gallagher, Philips, Oliver, & Caroll, Gallagher et al., 2008; Kim, Greenberg, Seltzer, & Krauss, 2003; Luescher, Dede, Glitten, Fennell & Maria, 1999; Magana, Seltzer, Krauss, Rubert, & Szapocznick, 2002), and reduced caregiver satisfaction (Pruncho, 2003). In addition, evidence exists to suggest that psychological distress among families increases as children with ASD become older (Koegel et al., 1992; Marcus, 1984), yet the majority of literature focuses on the experiences of families in childhood. …

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