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Psychological Well-Being in Fathers of Adolescents and Young Adults with Down Syndrome, Fragile X Syndrome, and Autism

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Psychological Well-Being in Fathers of Adolescents and Young Adults with Down Syndrome, Fragile X Syndrome, and Autism SIGAN L. HARTLEY AND MARSHA MAILICK SELTZER University of Wisconsin-Madison LARA HEAD Gundersen Lutheran Medical Hospital* LEONARD ABBEDUTO University of Wisconsin-Madison** Psychological Well-being in Fathers of Adolescents and Young Adults With Down Syndrome, Fragile X Syndrome, and Autism The psychological well-being of fathers of chil- and design services for fathers during the later dren with developmental disabilities remains parenting years. poorly understood. The present study examined depressive symptoms, pessimism, and coping in Approximately 1% to 2% of children in the fathers of adolescents and young adults with United States have a developmental disability, Down syndrome (DS; n = 59), autism spectrum defined as a severe condition due to a mental disorders (ASDs; n = 135), and Fragile X syn- or physical impairment that manifests prior to drome (n = 46). Fathers of sons or daughters age 22 years that is likely to continue indef- with ASDs reported a higher level of depres- initely and markedly impairs everyday func- sive symptoms than the other groups of fathers. tioning (National Center on Birth Defects and Fathers of sons or daughters with DS reported Developmental Disabilities, 2006). Parenting a a lower level of pessimism than the other groups child with a developmental disability presents of fathers. There were no group differences extraordinary challenges; parents often must in paternal coping style. Group differences in assist their son or daughter with everyday living paternal depressive symptoms and pessimism skills and manage their symptoms and comor- were, in part, related to differences in pater- bid behavior problems and navigate the complex nal age, the child’s behavior problems, risk of disability service system (Hodapp & Ly, 2005). having additional children with a disability, and These challenges are not limited to the early maternal depressive symptoms. Findings from parenting years, but extend into the son’s or this study can be used to educate providers daughter’s adolescence and adulthood. Adoles- cents and adults with developmental disabilities often continue to reside with parents (Seltzer, Department of Human Development and Family Studies, Greenberg, Floyd, Pettee, & Hong, 2001) and, Waisman Center, University of Wisconsin-Madison, Madi- thus, parents continue to have high levels of son, WI 53705 ([email protected]). day-to-day parenting responsibilities and stress *Gundersen Lutheran Medical Center, 900 South Avenue, (Seltzer et al., 2001; Smith et al., 2009). La Crosse, WI 54601. These parenting challenges can have a neg- **Present address: UC Davis MIND Institute, 2825 50th St., ative effect on parents’ well-being; moth- Sacramento, CA 95817. ers of both young and grown children with Key Words: at-risk children and families, autism, caregiving. developmental disabilities present with more Family Relations 61 (April 2012): 327 – 342 327 DOI:10.1111/j.1741-3729.2011.00693.x 328 Family Relations psychopathology than do mothers of similarly 2007). FXS is an inherited genetic condition aged children without disabilities (e.g., Baker, involving changes to the FMR1 gene located on Blacher, Crnic, & Edelbrock, 2002; Seltzer et al., the X chromosome, which may occur as often 2009). The extent of this negative effect, how- as 1 in 2,500 persons (Hagerman, 2008). FXS ever, varies according to the nature of the results in cognitive impairment ranging from child’s disability; some child disabilities are mild learning disabilities to intellectual disabil- related to high rates of parenting stress and poor ity, behavior problems, including inattention and psychological well-being in mothers, whereas hyperactivity, and an increased risk for ASDs other child disorders have much less impact (Bailey, Raspa, Olmsted, & Holiday, 2008). (Abbeduto et al., 2004; Sellinger & Hodapp, Differences in the nature (i.e., etiology and 2005). In contrast to the large body of research on behavioral presentation) of DS, ASDs, and FXS mothers, little is known about the psychological may lead to divergent parenting contexts and well-being of fathers of children with devel- stressors and thereby differentially affect psy- opmental disabilities. Although mothers tend chological well-being. The present study was to bear more responsibility for child care than designed to compare the psychological well- fathers within families of children with develop- being of fathers of adolescent and young adult mental disabilities (Ricci & Hodapp, 2003; Sim- children with DS, ASDs, and FXS and to iden- merman, Blacher, & Baker, 2001), fathers are not tify the factors contributing to potential group immune to child-related challenges. Indeed, the differences. Current family services within the few studies that have included fathers of younger field of developmental disabilities are predom- children with developmental disabilities indicate inately focused on the early parenting years that fathers often report higher parenting stress and directed toward mothers, with little con- and poorer psychological well-being than fathers sideration of fathers (Parette, Meadan, Hedda, of children without disabilities (Dyson, 1997; & Doubet, 2010; Turbiville & Marquis, 2001). Roach, Orsmond, & Barratt, 1999) and levels Information from the present study may be use- of parenting stress similar to those of mothers ful in advocating for and designing interventions (Dyson, 1997; Hastings, 2003; Keller & Honig, to involve and address the needs of fathers and 2004). These studies also indicate that there is a the challenges they face in later parenting years. great deal of variability in paternal psychological In the general population, paternal psycholog- well-being. As with mothers, some of this varia- ical well-being has important interconnections tion may be because of the nature of their child’s with child well-being (e.g., Lovejoy, Graczyk, disability; however, research on fathers is sparse. O’Hare, & Newman, 2000) and maternal well- Down syndrome (DS), autism spectrum dis- being (e.g., Walker, Luszcz, Gerstort, & Hopp- orders (ASDs) and fragile X syndrome (FXS) mann, 2011). Evidence suggests that there are constitute three of the most common develop- similar interconnections between father, mother, mental disabilities. DS, which occurs in 1 in 800 and child well-being in families of children with births (Shin et al., 2009), typically results from developmental disabilities (e.g., Hastings, 2003; a noninherited chromosomal error (trisomy 21) Stoneman & Payne-Gavida, 2006). Thus, efforts and generally leads to mild to moderate lev- to understand and then develop interventions els of intellectual disability (Dykens, Hodapp, to promote optimal psychological well-being & Finucane, 2000). ASDs are a spectrum of in fathers of children with developmental dis- conditions marked by impairments in commu- abilities has implications for fostering positive nication, social reciprocity, and restricted or well-being in multiple family members. repetitive behaviors (American Psychological Association, 2000). Half to about three fourths of individuals with an ASD also have intellectual FATHER PSYCHOLOGICAL WELL-BEING disability (Fombonne, 2003), and the majority AND CHILD DIAGNOSIS evidence comorbid behavior problems, such as Given the paucity of studies comparing the inattention and disruptive behavior (e.g., Brere- psychological well-being of fathers of young ton, Tonge, & Einfeld, 2006). ASDs occur in or grown children with different types of 1 in 110 children (Autism and Developmental developmental disabilities, we turn to research Disabilities Monitoring Network, 2009) and are on mothers to inform hypotheses in the present believed to result, in large part, from inherited study. The child diagnoses most taxing on and noninherited genetic mechanisms (Freitag, mothers may also be the ones that are most taxing Well-being in Fathers of Adolescents and Adults 329 on fathers, as they may alter parenting contexts FACTORS CONTRIBUTING TO DIFFERENCES and stressors in ways that affect both parents. BY CHILD DIAGNOSIS Indeed, our own previous research has found The pattern of differences in the psychological significant positive interspouse correlations in well-being of mothers of young and grown chil- parenting burden within families of adolescents dren with DS, ASDs, and FXS is often attributed and young adults with ASDs (e.g., Hartley, to the divergent nature of these disabilities. Barker, Seltzer, Greenberg, & Floyd, 2011). Specifically, the varying etiology and behavioral Mothers of young and grown children with presentation of these disabilities leads to differ- DS, ASDs, and FXS have been shown to experi- ent parenting contexts and stressors in terms ence varying levels of psychological well-being of parent age, the child’s behavior problems, (e.g., Abbeduto et al., 2004; Hodapp, Ricci, Ly, & Fidler, 2003). Research has consistently and the likelihood of having additional children shown a pattern of ‘‘DS advantage,’’ in which with a disability. The chromosomal error that causes DS occurs in a higher proportion of the mothers of children with DS report lower levels ≥ of stress (Hodapp et al., 2003), view care- pregnancies of older women (aged 35 years), giving more positively (Sellinger & Hodapp, and thus the ‘‘DS advantage’’ is often attributed 2005), and report more support-seeking coping to increased parent resources due in part to (Poehlmann, Clements, Abbeduto, & Farsad, older maternal age and hence greater maturity 2005) than mothers of children with other
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