The Relation Between Family Resources, Child Severity and Parenting Stress in Parents Raising Young Children With Autism

This study examined the extent to which child severity and family resources are related to parenting stress in parents of 26 young children with autism. Bivariate correlations between family resources, autism severity, and parenting stress were conducted. Results revealed a significant negative correlation between parenting stress and family resources. A significant relation was also found between autism severity and child-focused aspects of parenting stress. Severity of autism symptoms was negatively correlated with total family resources. Importance of providing parents with appropriate therapies and supports is discussed. RESOURCES, CHILD SEVERITY AND PARENT STRESS 3 The Relation Between Family Resources, Child Severity and Parenting Stress in Parents of Young Children With Autism Autism spectrum disorders are a group of neurodevelopmental disorders characterized by a range of deficits in three core areas: social skills, communication skills, and the presence of stereotyped, repetitive behaviors (www.cdc.gov). Individuals on the autism spectrum have varying deficits ranging from quite severe cognitive disabilities to less severe impairments in social interactions. Recently, more and more children are being diagnosed with autism at an increasingly younger age. Currently, one in every 110 children in the United States is diagnosed with an autism spectrum disorder (www.cdc.gov). The cause of autism spectrum disorders (ASD) is still relatively uncertain among researchers; however, most believe it is a combination of both a genetic susceptibility in addition to an environmental trigger that cause an individual to develop autism (Hertz-Picciotto et. al., 2006). Twin studies reveal a 60-96% concordance rate for identical (monozygotic) twins compared to a 2-8% concordance rate for fraternal (dizygotic) twins (www.cdc.gov). This increased rate for identical twins, siblings who share 100% of their genetic material, suggests that a genetic component exists in the development of an ASD. However, if the disorder is truly genetic in nature, a concordance rate closer to 100% would be expected. Therefore, it has been concluded that there is an environmental factor that, in addition to a genetic component, also contributes to the development of an autism spectrum disorder. Additionally, it remains unclear if the different disorders within the autism spectrum are a result of different genetic or brain abnormalities, or if they are different outcomes of the same biology (Lord et al., 2000). Autism awareness is rapidly increasing throughout the country due, in part, to increased media reports as well as the increasing prevalence rates. Gurney et al., (2003) measured RESOURCES, CHILD SEVERITY AND PARENT STRESS 4 prevalence rates of autism in Minnesota and concluded that increasing rates of autism are likely a result of previous under-diagnosis of the disorder instead of an epidemic. As the spectrum broadens, individuals are now more likely to receive a diagnosis of an autism spectrum disorder, whereas they would have previous received a different diagnosis, such as mental retardation, for example. Children with ASD often exhibit certain behavioral characteristics that may be especially stressful for parents. For example, children with an autism spectrum disorder may display poor eye contact, have little interest in playing with other children, and may fail to engage in giveand-take activities with others. Furthermore, children with ASD struggle to interpret social cues from those around them and often have problems regulating and communicating their emotions with others (www.nimh.nih.gov). These characteristics may lead to increased stresses and frustrations for both the child and the parents. Even parents of young typically developing children experience increased stress levels related to raising a child. While some of this parental stress may be functional and adaptive, excess amount of parental distress not only harms parents, but may also have lasting effects on the developing child. Boyd (2002) found that an increased level of parental stress predicts the development of depression in parents raising children of all abilities. Parental depression is also associated with child adjustment problems in typically developing children (Jacob & Johnson, 1997). Parents are vital to their children’s course of development and parents struggling with psychological issues of their own likely have less time and energy to devote to their child’s needs. Parents raising a child with a developmental disability suffer from even higher levels of parenting stress than parents raising a typically developing child (Rodrigue, Morgan & Geffken, RESOURCES, CHILD SEVERITY AND PARENT STRESS 5 1990; Raina et al., 2004; Murphy, Christian, Caplin, & Young, 2006). Parents of children with disabilities are not only more likely to experience distress but are also more likely to be depressed than parents of children without disabilities (Wolf, Noh, Fisman, & Speechley, 1989). According to Murphy et al. (2006), providing care to a child with disabilities can be a tremendous source of stress for caregivers that may have detrimental, lasting impacts on both their physical and mental health. Additionally, caregivers who provide most or all of the direct care for their child with disabilities have poorer health than caregivers who share the burden of care giving with others. A large portion of their stress is caused by uncertainty and anxiety about the future, especially with relation to their child with disabilities. Additionally, higher parenting stress is associated with poorer quality of parent-child interactions (Mahoney & Bella, 1998) and has also been shown to negatively affect the psychological health of children with disabilities (Kobe & Hammer, 1994). Depending on the severity of their child’s disorder, many parents are faced with unexpected life and even career changes upon the birth of a child with a disability or upon hearing a diagnosis of a disability in their child (Raina et al., 2004). Caregivers of a child with a developmental disability are oftentimes forced to assume an unexpected additional role of providing intensive, long-term care for their child. For example, parents of children with developmental disabilities assume the responsibility of not only in-home care but also coordinating appointments with various doctors, therapists, and educational resources. Consequently, they may feel like they must give up their previous lives in order to provide fulltime, long-term care for their disabled child. This switch to a ‘career of care giving’ is unexpected and does not allow the same freedoms that other full-time jobs provide (Murphy et al., 2006). A ‘career caregiver’, unlike other occupations, is given little, if any, time off, there is RESOURCES, CHILD SEVERITY AND PARENT STRESS 6 no future plan for retirement, and their career is not motivated by ambition. Instead, this occupation is directed by their child’s delays and the interventions, therapies, other necessary supports the child requires (Raina et al., 2004). In addition, parents raising a child with an autism spectrum disorder experience greater levels of parental stress than both parents raising children with other developmental disabilities as well as parents raising typically developing children (Wolf et al., 1989; Dumas et al., 1991; Sanders & Morgan, 1997; Hastings & Johnson, 2001; Bromley, Hare, Davison & Emerson, 2004). Importantly, Davis and Carter (2008) found that 39% of mothers of toddlers with an autism spectrum disorder reported clinically significant scores on a parenting stress parent-report measure and that more mothers than fathers reported depressive symptoms in the clinical range. These findings suggest that parents raising a child with autism may be at greater risk for developing seriously psychological conditions. Additionally, higher stress levels in parents may also negatively impact their child’s development. While high levels of parenting stress may cause a psychological burden on parents, parenting stress may also affect the development of the child with ASD. Families play a large role in the treatment of their child with autism and other developmental disabilities (Mahoney & Bella, 1998). Parents suffering from high stress levels may be unable to focus on providing the proper care for their child and instead must focus on caring for their own emotional wellbeing. Most researchers and clinicians agree that intensive early intervention is recommended to promote optimal outcomes for young children diagnosed with autism (Dawson & Osterling, 1997). However, interventions, especially those that are time-intensive and family-based, are not as effective when parenting stress is high (Osborne, McHugh, Saunders, & Reed, 2008). Furthermore, lower levels of parenting stress prior to beginning of an autism early intervention RESOURCES, CHILD SEVERITY AND PARENT STRESS 7 treatment is one of the strongest predictors of success in that treatment program (Robbins, Dunlap, & Plienis, 1991). It is unclear what specific feature, if any, of autism causes the greatest amount of stress for parents. There is vast disagreement in the research literature about which specific child characteristics cause the most stress for parents raising a child with ASD. For example, Bebko, Konstantareas, and Springer (1987) found that impairments in language abilities, cognitive abilities, social abilities, as well as overall autism severity were the greatest stressors for parents compared to other sensory issues, environmental changes, the child’s ability to relate to objects, and visual information. Bromley et al. (2004), however, suggested that the increased levels of parenting stress in parents with a child with ASD was due to children exhibiting more challenging behaviors. Davis & Carter (2008) found that deficits in a child’s social skills were the best predictor of stress in both mothers and