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Psychological Well-Being and Coping in Mothers of Youths with Autism, Down Syndrome, Or Fragile X Syndrome

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Psychological Well-Being and Coping in Mothers of Youths with Autism, Down Syndrome, Or Fragile X Syndrome VOLUME 109, NUMBER 3: 237±254 z MAY 2004 AMERICAN JOURNAL ON MENTAL RETARDATION Psychological Well-Being and Coping in Mothers of Youths With Autism, Down Syndrome, or Fragile X Syndrome Leonard Abbeduto, Marsha Mailick Seltzer, and Paul Shattuck University of Wisconsin-Madison Marty Wyngaarden Krauss Brandeis University Gael Orsmond Boston University Melissa M. Murphy University of Wisconsin-Madison Abstract The psychological well-being of mothers raising a child with a developmental disability varies with the nature of the disability. Most research, however, has been focused on Down syndrome and autism. We added mothers whose adolescent or young adult son or daughter has fragile X syndrome. The sample was comprised of mothers of a child with fragile X syndrome (n 5 22), Down syndrome (n 5 39), or autism (n 5 174). Mothers of individuals with fragile X syndrome displayed lower levels of well-being than those of individuals with Down syndrome, but higher levels than mothers of individuals with autism, although group differences varied somewhat across different dimensions of well-being. The most consistent predictor of maternal outcomes was the adolescent or young adult's behavioral symptoms. Parents raising a child with a developmental group has seldom been studied from the perspec- disability face challenges that are not shared by tive of parental psychological well-being, and its parents of typically developing children (Stone- inclusion yields additional insights about the im- man, 1997). There is, however, substantial evi- pact of developmental disabilities on parents. We dence that the challenges parents face and the examined group differences in parental psycho- ways in which they deal with these challenges vary logical well-being and coping, their association with the nature of the child's disability (Dunst, with characteristics of the family and characteris- Trivette, & Cross, 1986; Gallagher, Beckman, & tics and behavior of the son or daughter, and the Cross, 1983; Walker, Van Slyke, & Newbrough, potential buffering effects of coping. In doing so, 1992). This evidence comes primarily from studies we focused on mothers because, despite changing of two groups of parents: those having a child gender roles, mothers still tend to have primary with Down syndrome and those having a child responsibility for child care and are, thus, most with autism (Stoneman, 1997). In the present subject to the challenges associated with their study, we added a third group: parents whose son child's disability (Gray & Holden, 1992). In ad- or daughter has fragile X syndrome. This latter dition, we focused on mothers whose son or q American Association on Mental Retardation 237 VOLUME 109, NUMBER 3: 237±254 z MAY 2004 AMERICAN JOURNAL ON MENTAL RETARDATION Well-being and coping of mothers L. Abbeduto et al. daughter was an adolescent or young adult (ages asek, 1986), have more extensive and more satis- 10 to 23) because this is a time of transition and fying networks of support (Hauser-Cram, War- new challenges for families as well as being a pe- ®eld, Shonkoff, & Krauss, 2001; Shonkoff, Hau- riod in which behavioral differences between per- ser-Cram, Krauss, & Upshur, 1992), and perceive sons with Down syndrome, autism, and fragile X their children to have less dif®cult temperaments syndrome may become more pronounced. (Kasari & Sigman, 1997). Parents of children with It is important to make explicit why parental Down syndrome also report less pessimism about psychological well-being would be expected to dif- their children's future than do parents of children fer as a function of the son or daughter's diag- with either Williams or Smith-Magenis syndrome nosis. Certainly, there is nothing inherent in any (Fidler, Hodapp, & Dykens, 2000), they report particular diagnosis that would in and of itself fewer family problems than do parents of children elicit a particular set of parental reactions. Instead, with Smith-Magenis syndrome (Fidler et al., it is likely that the physical and behavioral chal- 2000), and they are less likely to interpret child lenges posed by the child will be critical, and to noncompliance negatively compared to mothers the extent that those challenges vary across diag- of children who, as a group, are heterogeneous noses, differences in parental reactions are possi- with respect to etiology (Ly & Hodapp, 2002). Al- ble. In the case of syndromes that have a genetic though the vast majority of studies have focused origin, we might also expect different parental re- on young children, there is evidence that the ``ad- actions if the parental genes that are the origin of vantage'' of having a son or daughter with Down the child's condition also affect the parent's own syndrome continues throughout life (Seltzer, characteristics, behaviors, and vulnerability to the Krauss, & Tsunematsu, 1993). However, not all challenges of parenting in different ways across researchers have found Down syndrome to be as- syndromes. Finally, we could expect different pa- sociated with higher levels of psychological well- rental reactions across diagnoses to the extent that being in mothers compared to other forms of those diagnoses are correlated with variations in mental retardation (Gath & Gumley, 1986; Han- social acceptance of, and support for, children son & Hanline, 1990; Ryde-Brandt, 1991), sug- with special needs and their families. These points gesting that the extent to which Down syndrome have been demonstrated empirically by Cahill is perceived as less stressful will depend on the and Glidden (1996), who found that differences nature of the comparison group. in parental functioning according to child diag- In contrast to mothers of children with Down noses were minimized when the groups were syndrome, mothers of individuals with autism re- matched on various child characteristics. The im- port greater stress, lower levels of social support, plication is that demonstrating that parents of and less positive views of their child than do children with different diagnostic conditions are mothers of individuals with mental retardation themselves different on measures of parental psy- who, as a group, are heterogeneous in terms of chological well-being is merely a ®rst step, with etiology (Donovan, 1988). This result emerges the source of those differences still to be deter- across variations in geographical region and cul- mined. In the present study, we were interested in ture, child age, and child IQ (Koegel et al., 1992). ®rst determining whether there are differences in Moreover, direct comparisons between mothers of maternal psychological well-being across the three children with Down syndrome and mothers of groups of mothers and in beginning to under- children with autism are quite consistent in sug- stand the sources of those differences among gesting that mothers of children with Down syn- mothers. drome experience lower levels of stress (Holroyd Previous research on the impact of a child's & McArthur, 1976; Kasari & Sigman, 1997) and disability on parental psychological well-being has have more positive views of their children's char- demonstrated that mothers of children with acteristics (Kasari & Sigman, 1997). Down syndrome often fare better than do moth- These differences in psychological well-being ers of children with other forms of mental retar- between mothers of children with autism and dation. Compared to mothers of children who, as those with Down syndrome can be traced, in part, a group, are heterogeneous with respect to etiol- to variations in the uncertainty attending the two ogy, mothers of children with Down syndrome diagnoses. The long history of research on Down report lower levels of stress (Kasari & Sigman, syndrome and the certainty surrounding its diag- 1997; Marcovitch, Goldberg, MacGregor, & Lojk- nosis and cause provide parents with a clear and 238 q American Association on Mental Retardation VOLUME 109, NUMBER 3: 237±254 z MAY 2004 AMERICAN JOURNAL ON MENTAL RETARDATION Well-being and coping of mothers L. Abbeduto et al. coherent explanation of their child's condition higher rates of depressive symptomatology in par- and with a reasonable expectation of what the fu- ents (Seltzer, Greenberg, & Krauss, 1995). Even ture holds, hence, fewer worries about the future the physical appearance that is characteristic of (Beavers, Hampson, Hulgus, & Beavers, 1986; Fi- individuals with Down syndrome, which is per- dler, Hodapp, & Dykens, 2002). In addition, the ceived as highly child-like, elicits positive emo- fact that the diagnosis of Down syndrome is made tional responses from mothers and other adults so soon after birth allows parents to begin the (Fidler & Hodapp, 1999). process of adaptation to their child's condition The challenges faced by mothers of individ- when their children are only a few hours old. In uals with autism also extend beyond those arising contrast, the diagnosis of autism is often substan- from the degree of certainty attending the child's tially delayed relative to the onset of parental rec- condition or his or her particular characteristics ognition of developmental problems (Lord & Ris- and behaviors. In particular, there is evidence of si, 2000). Moreover, this diagnosis is made on an increased risk of a host of problems in other strictly behavioral grounds rather than through a family members, including siblings and parents, de®nitive genetic test as in the case of Down syn- with this risk being re¯ective of the broader au- drome, which may leave many parents wondering tism phenotype (Piven, 2001). Thus, there is a whether the diagnosis of autism is ``correct'' (Lord higher recurrence risk for siblings of children with & Rissi, 2000). In addition, the life course mani- autism compared to the general population (Jorde festation of autism has only recently been studied, et al., 1991; Piven et al., 1990), and the rates of resulting in parents greater uncertainty about the cognitive, linguistic, and social impairments and future compared to parents of individuals with psychiatric disturbances are greater in siblings of Down syndrome (Seltzer, Krauss, Orsmond, & affected individuals than in siblings of individuals Vestal, 2000).
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