Families with children who have autism spectrum disorders: stress and support.
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.
Hastings, Kovshoff, Ward, et al. (2005) reported that "the majority of research to date has considered the child with autism as a source of stress and other family members' well-being as the outcome" (p. 636). This perspective describes only unidirectional relationships between individuals with ASD and their family members. However, it is possible that these relationships could be bidirectional, meaning that family members could also influence the individual with ASD (e.g., marital stress or maternal depression could influence the child's behavior). In addition, the relationships among family members (e.g., parent--typically developing children, mother-father) could also impact family members' stress and outcomes. For example, Hastings (2003b) found that mothers' stress was related to behavior problems of a child with ASD, whereas in the same families, fathers' stress was related only to their partners' depression.
Turnbull, Turnbull, Erwin, and Soodak (2006) argued that the family system must be examined as a whole, and that understanding family patterns of interaction is necessary to understand a child with a disability and vice versa. According to Turnbull et al., within a traditional nuclear family, there are four major subsystems: (a) the marital subsystem that includes interactions between spouses or significant others who function as marital partners, (b) the parental subsystem that includes interactions between parents and their children, (c) the sibling subsystem that includes interactions among brothers and sisters, and (d) the extended family subsystem that includes interactions among members of the nuclear family and other relatives. We included only the first three subsystems in our framework. Interaction with the extended family and other individuals outside of the family system will be discussed as one potential support system for the family. It is important to consider potential bidirectional interaction among the three subsystems (see Figure 1)and the stressors and supports that are associated with each subsystem; however, it must be noted that there is little research on bidirectional relationships in ASD families.
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We identified articles related to stress, coping, and support in families that have a member with ASD by conducting electronic and ancestral searches. Criteria for inclusion in this literature review consisted of studies (a) published between 2000 and 2007; (b) published in a peer-reviewed journal in English; (c/ that described a data-based study; (d) that included parents and/or siblings of individuals with ASD as the focal participants; and (e) that focused on stress, coping, or support of the family members. Keywords used in an electronic search of ERIC and PsycINFO databases included autism, autism spectrum disorder, pervasive developmental disorder, Asperger syndrome, family, mother, father, siblings, brother, sister, stress, coping, support, and adjustment. (We chose not to include Rett's syndrome in our keyword search because of its clear genetic origin and its rare incidence.) Additional articles were identified in the reference sections of articles retrieved from the databases and of review articles and book chapters on this topic (i.e., ancestral methods). The search was limited to peer-reviewed journal articles and did not include books, dissertations, and other publications that did not undergo peer review.
Although ASD encompasses five subtypes (APA, 2000), only a few of the studies identified included individuals with Rett's syndrome and CDD. As many researchers did not report their results in terms of different subtypes, the findings cannot be specified for each subtype.
Our search resulted in 57 journal articles. Table 1 summarizes peer-reviewed, data-based articles published between 2000 and 2007. The table does not include studies that had only a small percentage of individuals with ASD as their participants (e.g., Blacher & McIntyre, 2006) and those that focused primarily on individuals with ASD (and not their families) and/or on interventions for individuals with ASD.
Based on our framework (i.e., subsystems within the family) and the focus of this article (i.e., stressors and supports), we organized the content in the following sections: (a) Stress in the marital subsystem, (b) stress in the parental subsystem, (c) stress in the Sibling subsystem, and (d) bidirectional relationships between subsystems. Families managed stressors by focusing on (e) coping strategies employed by families, and (f) informal and formal sources of support employed by families.
Due to the limited information specifically related to ASD for a specific subsystem within the family, we included research that focused on families of children with developmental disabilities (DD) and other disabilities. In these instances, we have indicated this focus explicitly.
There is limited published information about the impact of having a child with ASD on the marital relationship. Some researchers have found that having a child with a disability has a negative impact (e.g., higher divorce rate) on marriages; others have found no differences between families with and without a child with a disability. In a review focused on marital adjustment in parents of children with disabilities, Risdal and Singer (2004) found "a detectable overall negative impact on marital adjustment, but this impact is small and much lower than would be expected given earlier assumptions about the supposed inevitability of damaging impacts of children with disabilities on family well being" (p. 101). Higgins et al. (2005) reported that mothers and fathers of a child with ASD had lower levels of marital happiness, family adaptability, and family cohesion (i.e., less flexibility and a lack of warmth and connection) than normative data would suggest.
Due to the dearth of published information about the impact of having a child with ASD on the marital relationship, we also examined information related to the family as a unit. Perry, Harris, and Minnes (2004) found that parents of children with autism reported the lowest level of family harmony when compared to parents of children with other developmental disabilities (i.e., DS, Rett's syndrome, and Fragile X). The authors argued that although families of children with DD report higher levels of stress than typical families, this stress may not produce negative outcomes for the family. They reported that families with children with DD were doing as well as or better (in terms of coping resources available, organization, and moral-religious emphasis) than families with typically developing children. Interestingly, these authors (Perry et al., 2004) reported that family harmony was lower among families of children with autism and developmental disorders where the cause of the child's DD was unknown versus clearly understood.
Mothers and fathers of children with ASD reported more stress than parents of children with DS and parents of typically developing children (Hastings & Johnson, 2001; Perry at al., 2004; Poston et al., 2003). Benson (2006) reported that parents of children with ASD were at increased risk for poor mental health, not only because of the demands of caring for a child with ASD, but also because of other stressors engendered or exacerbated by their child's disability. In a longitudinal study of parental stress, Baxter, Cummins, and Polak (1995) concluded that the time of diagnosis of a DD was the most stress-inducing period for parents, followed by the time when the child entered school and then when they encountered the transition from school to work. Hare, Pratt, Burton, Bromley, and Emerson (2004) reported a strong association between emotional stress and unmet need in parents of adults with ASD. It is possible that parents experience different stressors when their children are at different ages.
In a longitudinal study of the psychological adaptation of parents of children with autism, Gray (2002) reported that the psychological well-being of most of the participating parents improved over the 8 to 10 years between interviews. However, parents of children with autism who had challenging behavior did not report improvement and indicated high levels of stress.
In their investigation, Sharpley et al. (1997) reported that the three most stressful factors for parents of children with ASD were (a) the permanency of the condition, (b) the lack of acceptance of behavior associated with ASD by family members and society, and (c) the low levels of support provided. The current review revealed additional sources of stress for parents of individuals with ASD that were identified by other researchers including (d) the economic burden of raising a child with ASD, including the negative impact on parents' career and/or income (Jarbrink, Fombonne, & Knapp, 2003; Sharpe & Baker, 2007); (e) parents' concerns about the future for their children, specifically problems that may arise when the children reach adulthood (Hare et al., 2004; Pisula, 2007); (f) challenging behavior of children with ASD (Bromley et al., 2004; Hastings, 2003b; Hastings, Kovshoff, Ward, et al., 2005; Lecavalier, Leone, & Wiltz, 2006); and (g) psychological characteristics of the parents such as perceived self-efficacy, locus of control, and coping style (Dunn, Burbine, Bowers, & Tantleff-Dunn, 2001; Sivberg, 2002; see Table 1).
Mothers of Children With ASD. Mothers and fathers share parenting roles, but mothers typically assume a larger part of the responsibility of meeting the needs of the child with ASD (Gray, 2003). Most of the research on stress levels of parents of individuals with ASD has been conducted with mothers (e.g., Tomanik, Harris, & Hawkins, 2004). Although a few researchers (Benson, 2006; Hastings, Kovshoff, Ward, et al., 2005) found no significant maternal-paternal differences in reported stress, other researchers have found that mothers of individuals with ASD reported more stress, depression, and anxiety than fathers (Hastings, 2003b; Herring et al., 2006). In addition, mothers of individuals with ASD reported more stress than mothers of individuals with DS (Pisula, 2007) and mothers of typically developing children (Yamada et al., 2007).
The findings related to the variables that are associated with mothers' stress and adjustment are mixed. Duarte, Bordin, Yazigi, and Mooney (2005) concluded that having a child with ASD is the main factor associated with a mother's stress. However, certain personality and demographic factors of the mother also are associated with maternal stress. Expressing little affection, having low interest in people, and being an older mother (34-45) were found to contribute to stress in mothers of children with ASD (Duarte et al., 2005). Pakenham, Samios, and Sofronoff (2005) reported that older mothers (ages were not specified) of children with AS and those with higher annual income reported better adjustment. Hastings and Johnson (2001) found that parents' (92% mothers) stress levels were predicted mainly by psychological (e.g., coping strategies, social support) rather than demographic variables. In addition, Bromley et al. (2004) found that lower levels of perceived support in mothers of children with ASD were associated with significant psychological distress. Mothers were more likely to report lower levels of support if they were single parents, living in poor housing, or were parenting a boy with ASD.
In a few studies maternal stress and well-being were found to be related to children's challenging behavior and severity of the behavioral symptoms (e.g., Abbeduto et al., 2004; Allik, Larsson, & Smedje, 2006; Bromley et al., 2004; Hastings, 2003b; Hastings & Johnson, 2001; Herring et al., 2006). More specifically, Tomanik et al. (2004) reported that mothers of children with ASD reported the greatest stress when their children were more irritable, socially withdrawn, hyperactive/noncompliant, unable to take care of themselves, and unable to communicate or interact with others. (See Table 1 for more details).
Only a few studies have explored cultural differences in the relationship between stress and parenting a child with ASD. Bishop, Richler, Cain, and Lord (2007) found that African American mothers of children with ASD reported lower levels of perceived negative impact of having a child with ASD than Caucasian mothers. Similarly, Blacher and McIntyre (2006) reported that Latino mothers of children with intellectual disability (8% with ASD) perceived their children to have more positive effect on their lives than Caucasian mothers. Interestingly, Blacher and McIntyre found that mothers of children with ASD reported more stress than the other groups, regardless of their cultural background.
Fathers of Individuals With ASD. Research pertaining to the impact on fathers of having a child with disabilities is mixed. Some researchers have found favorable outcomes for fathers, whereas others have reported that fathers and mothers experience similar outcomes although their stressors emanate from different sources (Hastings, Kovshoff, Ward, et al., 2005). Gray (2003) investigated gender differences in parents of children with AS and found that fathers reported that their child's condition did not have a significant effect on them personally, whereas mothers claimed that their child's AS severely affected their emotional well-being. There is limited research on the stress levels of fathers who have children with ASD. Most researchers (e.g., Herring et al., 2006; Litde, 2002) have reported that fathers of individuals with ASD experience less stress, depression, and anxiety than mothers. Paternal stress was not associated with the child's challenging behavior (Hastings, 2003b; Hastings, Kovshoff, Ward, et al., 2005), but was found to be associated with a partner's depression (Hastings, Kovshoff, Ward, et al., 2005). Sanders and Morgan (1997) identified several factors related to stress perceived by fathers of children with ASD, including actual physical care of the child. They reported that fathers of children with ASD experience more stress as a result of time spent caring for the child and the behavioral characteristics of autism that might make this responsibility difficult.
TYPICALLY DEVELOPING SIBLINGS OF INDIVIDUALS WITH ASD
The interactions between brothers and sisters provide them with opportunity to experience sharing, companionship, rivalry, and other outcomes. Researchers who study ASD do not have a clear understanding of why some sibling pairs experience warm, supportive relationships, whereas others experience conflict and isolation (Rivers & Stoneman, 2003). Many individuals with ASD have behavior repertoires that might be expected to affect sibling relationships and the social, behavioral, and psychological adjustment of their typically developing siblings. Findings regarding the effects of having a sibling with ASD have been mixed and inconsistent (Macks & Reeve, 2007; Mascha & Doucher, 2006; Verte, Roeyers, & Buysse, 2003). Some researchers (e.g., Hastings, 2003a; Ross & Cuskelly, 2006) have reported negative outcomes (e.g., loneliness, behavioral difficulties, depression) for the typically developing siblings, whereas other researchers (e.g., Kaminsky & Dewey, 2002; Mascha & Doucher, 2006) have found positive outcomes (e.g., less conflict within the relationship, high self-esteem and self-concept) or no evidence of negative effects (Hastings, 2003c; Orsmond & Seltzer, 2007). Orsmond and Seltzer investigated adult siblings of individuals with ASD and DS and found that typically developing adult siblings of individuals with ASD reported significantly less contact and less positive effect in the relationship with their sibling with ASD than did the DS group. Pilowsky et al. (2004) reported that most siblings of individuals with ASD were well adjusted, but emphasized that the stress of having a sibling with ASD cannot be overlooked. Benson and Karlof (2008) recommended that because siblings of individuals with ASD are at "significantly heightened genetic, as well as environmental, risk for developing ASD or a related disorder" (p. 594), researchers should attempt to take this genetic risk into account when assessing adjustment. They suggested that the inconsistency in reported findings on the adjustment of siblings of individuals with ASD could be the result of not taking into account the genetic vulnerability of the siblings.
Researchers have suggested that the adjustment of siblings of children with ASD is dependent on other demographic factors. Typically developing siblings were found to have more adjustment problems when they were members of smaller families (Kaminsky & Dewey, 2002), had a sibling with ASD with problem behavior (Ross & Cuskelly, 2006), and/or had marital stress in their family (Rivers & Stoneman, 2003). Recently, Macks and Reeve (2007) reported that specific demographic characteristics (i.e., being male, coming from a family of low socioeconomic status [SES], having only one sibling, being older than the child with ASD) were more likely to impact a sibling of a child with ASD than a sibling of a typically developing child. Macks and Reeve concluded that when "multiple demographic risk factors are present, it becomes more difficult for the non-disabled sibling to deal with the child with autism, both emotionally and psychologically" (p. 1065).
BIDIRECTIONAL RELATIONSHIPS BE TWEEN SUBSYSTEMS
Most of the research on families of individuals with ASD focuses on the influence of having an individual with ASD on family members' stress and well-being (Hastings, Kovshoff, Ward, et al., 2005). However it is possible, even likely, that family members' behavior has an impact on the individual with ASD and other subsystems within the family. Although it would seem logical that the effects are reciprocal (Hastings, 2007; Patterson & Fisher, 2002) through bidirectional or transactional (i.e., mutual influences over time) processes (e.g., Bell, 1968; Lerner & Spanier, 1980; Sameroff & Chandler, 1975), we found only limited information on such effects in the literature. Researchers have reported that parents, especially mothers, of individuals with ASD experience high levels of stress. This stress often is associated with depression, anger, and anxiety (Bromley et al., 2004; Higgins et al., 2005). Parental depression could affect (a) the marital subsystem (e.g., causing conflict between parents and affect marital satisfaction), (b) the parental subsystem (e.g., affecting a child's level of stress and behavior), and (c) the sibling subsystem and the individual with ASD (e.g., affecting relationships with the children in the family and childrearing practices).
The limited data available support reciprocal influences. For example, in families who have a member with ASD, Hastings, Kovshoff, Ward, et al. (2005) found parental depression to be related to the partner's level of stress. In addition, Giallo & Gavidia-Payne (2006) found the level of parental stress and family functioning to be related to level of adjustment of typically developing siblings. Low marital Satisfaction and conflict within the family of individuals with ASD have been found to affect not just the parental relationships, but also sibling relationships. Rivers and Stoneman (2003) found that when marital stress was higher, typically developing siblings reported less satisfaction with their sibling relationships, and directed more negative behaviors and fewer positive behaviors to their siblings with ASD. Lecavalier et al. (2006) found that child behavior problems and parental stress exacerbated each other over a period of 1 year, supporting a transactional model of influence rather than simple unidirectional influences.
COPING AND SUPPORT STRATEGIES
Despite experiencing high levels of stress, many families of individuals with ASD cope successfully with their unique situation (Bayat, 2007; Gray, 2006; Twoy, Connolly, & Novak, 2007). Moreover, families that receive informal support from their social networks and formal support from agencies and health care providers are more likely to show positive adjustment (e.g., Chan & Sigafoos, 2001; Hastings & Johnson, 2001). We define coping as strategies and actions that are marshaled to manage a challenging situation and support as the availability of instrumental or emotional support from formal (e.g., agencies) or informal (e.g., friends and relatives) sources. We also considered both perceptions of support received from others as well as active attempts to seek out help and information.
Two models of coping are described in the literature: the approach-avoidance model and the problem-focused versus emotion-focused model. Ebata and Moos (1994) emphasized that although there are similarities between the models, they are conceptually distinct. The approach-avoidance model organizes coping responses according to their focus. In approach-oriented strategies, a person attends to a stressor by seeking information about it, monitoring it, and trying to resolve it, whereas in avoidance-oriented strategies, a person ignores, denies, minimizes, or diverts attention away from the stressor. The problem- versus emotion-focused model organizes coping responses according to their hypothesized function. In problem-focused strategies, a person attempts to solve a problem or change the situation, whereas in emotion-focused strategies a person attempts to manage or regulate emotional states produced by the stressor (Ebata & Moos, 1994; Roth & Cohen, 1986).
Researchers (Ebata & Moos, 1994; Twoy et al., 2007) reported that the use of approach and problem-focused strategies have been associated with better adjustment, whereas the use of avoidance or emotion-focused strategies have been found to be associated with poorer outcomes. This is not to say that avoidance or emotion-focus strategies are not adaptive. Ebata and Moos were careful to point out that these strategies may be adaptive in certain situations or at certain stages of a coping process, but that reliance on avoidance or emotion-focused strategies in the absence of approach or problem-focused strategies may be maladaptive in the long run. Using ethnographic methods, Gray (2006) investigated the coping strategies used by parents of individuals with ASD over a period of 8 to 10 years and found that the coping strategies used by the parents changed over time. The total number of coping strategies reported by parents declined and there was a shift away from problem-focused coping strategies toward emotion-focused strategies. At the beginning of the study parents coped by relying on service providers and family support, whereas toward the end of the study, more parents coped by invoking their religious faith or other emotion-focused strategies as they adapted to circumstances that would not change.
Successful adaptation to stressful events requires both strategies that come from within the family (e.g., cognitive and communication strategies) and external supports that emanate from resources outside the family (e.g., support from social networks; Twoy et al., 2007). Twoy et al. (2007) investigated the resiliency and coping strategies of parents with children with ASD and found that the level of adaptation and use of coping strategies were similar to parents of typically developing children. Parents of children with ASD used reframing (i.e., redefining stressful events in order to make them more manageable), considered by Ebata and Moos (1994) as an approach-oriented strategy that is emotion-focused, and social support (i.e., actively recruiting support from family and friends) as the most frequent coping strategies (Luther, Canham, & Cureton, 2005; Tunali & Power, 2002; Twoy et al., 2007).
Bayat (2007) found that "a considerable number of families of children with autism display resilience--reporting having become stronger as a result of a disability in the family" (p. 702). Bayat identified four categories of resilience in families with children who have ASD: (a) pulling together resources and being connected, (b) making meaning out of adversity, (c) affirming strength and becoming more compassionate, and (d) possessing a spiritual experience and belief system.
As previously discussed, negative, passive, Or escape-avoidance coping strategies are those that increase levels of stress or detract from overall quality of life. Unfortunately, parents and families of children with ASD often employ these strategies (Twoy et al., 2007). Hastings, Kovshoff, Brown, et al. (2005) found that avoidance coping strategies used by mothers and fathers of children with autism were associated with higher levels of stress and more mental health problems than alternative strategies employed by those parents. Tarakeshwar and Pargament (2001) reported that use of negative religious coping (e.g., passive waiting for God to solve the problem) by parents of children with ASD was associated with increases in depressive affect, poor religious outcome, and greater anxiety. Similarly, Dunn et al. (2001) discovered that parents who used escape-avoidance methods such as (a) ignoring or trying to forget relevant issues, (b) taking drugs, or (c) hoping for miracles had higher levels of depression, isolation, and increased marital strain. The authors also touted the importance of using a variety of coping strategies, explaining that those who did not do this encountered more negative outcomes as measured by a self-reported questionnaire (i.e., the Parenting Stress Index). Finally, Sivberg (2002) found that parents of children with autism used more distancing and escape strategies than parents of typically developing children.
The literature reveals that parents and families who use a variety of active coping strategies not only experience decreased levels of stress, but also enjoy the benefit of increased family cohesiveness. For example, Hastings, Kovshoff, Brown, et al. (2005) reported that positive framing can be a vital means with which individuals revise their understanding of a particularly stressful life event or situation and begin to adapt to it. They found that both mothers and fathers 0f children with ASD who committed to such Strategies had lower levels of depression than those who resorted to other methods. Finally, Jones and Passey (2004) found that the use of active coping Strategies, such as remaining optimistic and maintaining family integration by parents of children with DD (30% with autism) and behavior problems, reduced their level of stress. Parents who valued social support and had support services and family support had lower levels of stress. The authors (Jones & passey, 2004) reported that parents who used active coping strategies found their experience to be more rewarding and satisfying with less concern about their child's future.
Mackintosh, Myers, and Goin-Kochel (2006) reported that the most frequent source of both information and support cited by parents of children with ASD was other parents of children with ASD. Parents from low-income backgrounds were found to use less information and fewer support sources than middle and upper-income families. Although the data from this study are informative, they do not provide a perspective on how satisfied parents were with their sources of information and support. Tobing and Glenwick (2006) reported that satisfaction with social support and not the number of supports was associated with lower levels of psychological distress of mothers of children with ASD. Thomas, Ellis, McLaurin, Daniels, and Morrissey (2007) used a survey to assess access to autism-related services. They found that families used a broad array of services, but that access to care was limited for minority families, families with low levels of education, families who did not use major treatment approaches (e.g., applied behavior analysis [ABA], Treatment and Education of Autistic and related Communication-handicapped Children [TEACCH]), and families living in nonmetropolitan areas. They also found differences in service use by age group and diagnosis of the child with ASD. We identified three primary support strategies in the literature: social support, respite care, and formal supports.
Social Support. "Social Support refers to a source of comfort found within group and individual relationships" (Turnbull et al., 2006, p. 213). Social support includes support from one's spouse, family and friends, availability of leisure time to participate in recreational activities, and availability of services and community programs for family members (Siklos & Kerns, 2006). Social and emotional supports were found to reduce parents stress and improve their well-being (Crnic & Low, 2002; Siklos & Kerns, 2006; Turnbull et al., 2006). Benson (2006) found that informal parent support (e.g., help from family and friends) significantly decreased depression among parents of children with ASD. Crnic and Low emphasized that, in general, parents' social support networks play an important role in affecting parental stress. Weiss (2002) reported that both social support and individual characteristics (e.g., self-efficacy and perception of control) were found to aid effective coping and reduce negative effects of stress.
One method found beneficial for parents and families of individuals with ASD involves the reliance on an extensive, supportive social network (Dunn et al., 2001). These authors reported that accessibility to and use of social support could lead to reductions in stress, depression, and anxiety for mothers of children with autism as well as increased life satisfaction for both parents. The latter benefit might emanate from the intermarital support system and its overall positive impact on the family's ability to adapt.
Boyd (2002) found spouses provided the best informal source of support by providing respite time, dividing the responsibilities of household management, and sharing the role of disciplinarian. Additionally, Dunn et al. (2001) found that support within the marriage correlated with adaptability in families of boys with developmental disabilities and with increased overall life satisfaction for parents of children with autism.
Respite Care. Respite care, a second type of support, refers to a service whereby another adult assumes the role of the parent for children with disabilities for short periods of time on a consistent basis (Chan & Sigafoos, 2001). Cowen and Reed (2002) expanded the definition to include additional supports and services for the child and the family, such as referrals for other types of assistance.
Chan and Sigafoos (2001) reviewed studies that evaluated the effect of respite care services used by families of children with DD and concluded that, at least in the short term, respite care can reduce the levels of stress in parents of children with disabilities. They also reported that families who used respite services had decreased levels of stress and were better able to cope with caring for a child with disabilities, relative to those who did not utilize respite care. Mullins, Aniol, Boyd, Page, and Chaney (2002) examined the effects of short-term (3-7 days) respite care on both psychological distress and levels of stress for parents of children with DD. They concluded that parents who received respite services showed (a) decreased levels of psychological distress that were maintained over time and (b) decreased levels of stress. Although the latter finding was not maintained over time, the authors suggested that parents could benefit from the positive, short-term effects of this service as it relates to day-today functioning and a general sense of being overwhelmed.
Although there is limited information about the effects of respite care on families of children with ASD, Sanders and Morgan (1997) found that mothers and fathers of children with autism had higher levels of stress related to family problems (i.e., time demands and family opportunities) than did other groups, and they reported feeling least able to access recreation and leisure services because of the demands related to having a child with autism. The use of respite care allows parents to engage in these activities, which, as the authors suggested, may reduce stress and provide them with time for personal development.
Formal Supports. A third type of support available to parents and families of children with ASD is access to formal support services, such as support groups, health and professional services, and counseling. Siklos and Kerns (2006) found that parents of children with ASD reported that the professionals who provided services to them and their families were more important than many other types of support, including friendship opportunities for their children. Parents of children with ASD reported the desire for information and knowledge to help them understand autism in general and their children's needs specifically (Whitaker, 2002). This speaks to the critical nature of a variety of professional supports for this population.
Of the services reflected in the literature, there is a specific trend focusing on family well-being including opportunities for counseling, financial planning, and support groups. These instrumental supports are aimed at the family and not directly at the child. Sanders and Morgan (1997) have suggested that supportive therapy allowing parents to discuss issues and share concerns, such as financial planning for the long-term care of their child with ASD, could help reduce parental stress and contribute to quality of life.
The literature on formal supports encompasses the use of support groups for both parents and siblings of children with ASD. Smith and Perry (2005) examined the effectiveness of a sibling support group for children with autism. They reported that the siblings' self-concepts and knowledge of autism improved from the beginning to the end of the support group meetings, demonstrating success in meeting the goals of the support group. Although these findings are promising, it is important to note that the research design included only pre and post measures and there was no control group, which limits the potential conclusions of this study.
Mandell and Salzer (2007) examined support groups for parents of children with ASD and found that these groups enable contact with other families in similar situations and may reduce social isolation and stress and increase access to information about appropriate and available services. The investigators emphasized the importance of including support groups for parents of children with ASD as part of the system of care. Similarly, Shu and Lung (2005) recommended that the primary caregivers of children with ASD need access to regular support group meetings and training services provided during these gatherings to cope with the unique issues they face.
Another form of formal support for family members is parent training programs and interventions. Researchers have investigated varying parent training models/paradigms to support families of children with ASD (e.g., Brookman-Frazee, 2004; Koegel, Bimbela, & Schreibman, 1996; Tonge et al., 2006). In general, these studies suggest that parent education is effective in obtaining positive outcomes for both parents and children. Brookman-Frazee emphasized that collaborative partnerships between parents and professionals often are associated with positive outcomes for both child target behaviors and family quality of life. Parent-professional collaborations are necessary, but they are not sufficient. It is important to note that parents' level of involvement in their children's intervention programs could influence their well-being. Schwichtenberg & Poehlmann (2007) reported that mothers of children with ASD indicated fewer depressive symptoms when their children received more ABA hours per week. However, mothers who spent more hours per week involved in their child's ABA program reported more feelings of personal strain. Trudgeon and Carr (2007) investigated the impact of home-based behavior intervention on families of children with ASD and concluded that although parents reported both positive and negative impacts of the program, the sources of support obtained offset the demands of the programs.
Access to formal supports and services is not equally distributed across the population. Mandell and Salzer (2007) reported that support groups for parents of children with ASD are underutilized in communities inhabited by low SES and African American families and that there is a need to increase the availability to such groups in these communities. In addition, Bromley et al. (2004) found that mothers of children with ASD have a significant amount of psychological distress associated with a paucity of support when raising their child. They reported that individuals from areas of higher SES often have lower levels of stress than those from rural or inner-city areas where assistance is not as available or services cannot be easily obtained. The relationship between supports and SES suggests important implications for advocating for the availability of more and better quality of services to all parents and families, regardless of income or circumstance.
LIMITATIONS AND IMPLICATIONS
In our effort to review the literature on the pervasive impact on families of having a child with autism, at least three primary limitations require consideration: (a) the magnitude of relevant literature, (b) the wide range of demographic characteristics of the participants (family members and individuals with ASD) and the sampling procedures employed, and (c) the variability in the targeted outcomes and their measurement. Any review of the literature must consider both limitations of the review itself and limitations of the literature reviewed. In the case of the three limitations we detail, the first applies to our review and the remaining two apply to the studies reviewed. We have provided detailed attention to the themes that emerged from our review of the available literature: (a) stress for caregivers and siblings, (b) coping strategies used by family members, (c) preferred methods of support, and (d) the potential for bidirectional influence. Although we cast a broad net when searching the literature, we tried not to sacrifice care in locating relevant research. However, it is inevitable when searching for studies pertinent to marital, parental, and sibling subsystems that we may have overlooked important contributions to this broad literature base. For example, we did not find information related to stress experienced by families who have more than one child with ASD or stress in families who employed different treatment paradigms (to determine their differential effects). It is possible that these areas have been investigated but were not identified in our search. Further, the literature pertinent to families of children with autism is expanding at a rapid pace and we were limited by having set arbitrary beginning and ending dates for the review.
A second limitation pertains to the wide range of demographic characteristics of the participants in the studies reviewed. The wide range of characteristics and, in some cases, the dearth of information on demographic variables limited generalization of the findings and distinguishing findings by participant group and conditions (e.g., subtype of ASD, age of participants, SES, race). In addition, most researchers used convenience sampling procedures and included data on the participants who volunteered to participate in the studies, which may limit the external validity of the results and the generalizability of the findings for varying participant groups.
For example, although the ages of the individuals with ASD who participated in the studies varied between 0 to 40 years, the average age of most participants was between 6 and 12. Age of the child with ASD should be a primary factor when considering the effects on families because of the unique issues encountered by families at various vulnerable transitions along the child's developmental pathway. These vulnerable family-life transitions include (a) birth and early childhood, (b) time of diagnosis; (c) transition to elementary school; (d) adolescence and transition to high school; and (e) adulthood, postsecondary education, independent living, and entering the world of work (Turnbull et al., 2006). Research is needed to explore stress and support over time in families who have children with autism (Gray, 2006; Hare et al., 2004) and at specific vulnerable times of transition. It would be useful to consider whether particular types of services, supports, or interventions would be more effective at (or before) particular developmental transitions.
Other important information that could influence the findings of the studies reviewed includes the (a) specific subtype (e.g., autism, AS, PDD-NOS), (b) characteristics of the individuals with ASD (e.g., communication abilities, level of intellectual functioning, challenging behavior, and (c) characteristics of the family members (SES, culture, marital situation). The limited information available related to specific subtypes of ASD and specific characteristics of the participants did not allow us to examine the findings by participant subtype or by other conditions and renders any effort to assess generalization of the findings inconclusive.
A third noteworthy limitation of the literature reviewed encompasses the wide range of outcomes targeted, the clarity of their definition, and the restrictiveness of the measures used to document the outcomes. The wide range of outcomes sought and the inadequate definitions provided limits the opportunity to compare results across studies. Although many of the studies used self-reports (i.e., surveys, questionnaires, checklists, scales), it was rare to find the same survey, questionnaire, checklist, or scale across studies. By employing the same assessment instruments in studies with common purposes, researchers invite comparisons across studies that can facilitate broad-scale evaluations.
The literature reviewed was replete with self-administered, self-report measures that varied on many dimensions; however, the studies lacked other types of data that would make a substantive contribution to our understanding of how families are impacted by having a child with ASD. The few exceptions to the almost exclusive use of self-report measures included (a) semi-structured interviews (e.g., Dale, Jahoda, & Knott, 2006; Mascha & Boucher, 2006), (b) direct observation (e.g., Brookman-Frazee, 2004; Gray, 2006), and (c) a projective test (Duarte et al., 2005). Although family members' self-report is relevant and valuable information in its own right, triangulation achieved by combining self-reports with interviews and observational data may reveal findings that any one of these data sources alone could not.
Throughout this literature review, stress was a primary dependent variable in many of the studies. Unfortunately, stress is difficult to measure and functions more like a mediator variable than a functional outcome. If the researchers' goal is to identify the family outcomes associated with or produced by having a child with ASD, they need to employ objective outcome measures in addition to stress to assess family functioning such as divorce rates, parents' time together or with their children, siblings' grades or friendship networks, parental abuse of drugs, or documented depression for any family member. In a parallel analysis, we can assess objective outcomes associated with coping/supports such as the number of times parents go out together monthly, weekly recreational activities for moms and duds, or family trips; these same positive outcomes could be considered negative outcomes of stress if the results are poorer than a normative comparison group. A specific variable that was assessed in many of the studies reviewed is maternal depression. Bailey, Golden, Roberts, and Ford (2007) reviewed the literature on depression of mothers of children with disabilities and reported a need to make a distinction between clinical depression and symptoms of depression. Their distinction may be important in understanding how a child with a disability influences family members and what support services families need most.
The different objective measures identified previously cannot be the entire universe of outcomes; rather, these measures must be linked to each family's culture and to the traditions and activities that are unique to that family. As difficult a task as this may be, it is key to evaluating the functional impact of any independent variable we decide to examine. What family members experience and then convey in their self-reports is relevant, but it does not reflect the exclusive picture of the impact of having a child with ASD in the family. We urge those who engage in future investigations to broaden their choice of dependent variables to encompass objective and functional outcomes that permit an assessment of family functioning before, during, and after an intervention program is introduced. In so doing, we believe that some hypothesized coping/support strategies will achieve empirical support and others will fall out of favor due to lack of evidence.
IMPLICATIONS FOR RESEARCH
We have identified five promising areas for future research on children with autism and their families that have emerged from this review: (a) bidirectional influence, (b) potential positive impact, (c) impact on fathers and siblings, (d) severity of autistic characteristics, and (e) rigor of extant research. Perhaps the most fundamental aspect of research on stress and individuals with autism and their families is related to the individuals themselves. In our bidirectional model, the impact on individuals with autism of mothers, fathers, and siblings, and their unique relationships is a meaningful consideration as a source of stress for that individual. When family members are experiencing various forms of discord due to having a child with ASD, it is likely they are contributing to a diminished quality of life for that child. Additional research on the validity of reciprocal models, and ways in which families cope with this issue is needed to provide a deeper understanding of the bidirectional influence of the relationship. In addition, we found limited information on a few of the subsystems (e.g., marital subsystem) comprising the family system framework; additional research might illuminate the impact on these subsystems.
A promising area of inquiry warranting further investigation is the potential positive impact of having a family member with ASD (Bayat, 2007). Although some of the research summarized in this review suggested that the presence of a child with ASD could enhance the psychological and emotional development of typically developing siblings (e.g., Macks & Reeve, 2007), it is not clear how these results arise. What mechanisms or processes operate to produce these desired outcomes? Research in this area would be helpful in determining how parents and service providers could facilitate these positive outcomes. Further, some families report that having a child with autism has enhanced particular aspects of family functioning (e.g., Hutton & Caron, 2005). This counter-intuitive perspective or the potential positive influence on a family may provide families with an optimism they had not considered. Perry et al. (2004) reported that stress does not necessarily produce negative outcomes for the family unit. Researchers might explore why stress leads to negative outcomes in some families but not others, and what the mediating factors are for these differential outcomes.
Although there is an extensive amount of research available on mothers of children with ASD, the impact on fathers and siblings is limited. Fathers of children with ASD may have different experiences and different support needs than mothers; therefore, it important to examine their unique response to having a child with ASD. The extent to which fathers assume the primary caregiver role is not clear. More specifically, it would be helpful to examine how increased parental responsibilities such as supporting the mother, managing financial burdens associated with having a child with ASD, or dealing with marital discord due to many of the factors listed here lead to unique stressors for fathers. In contrast, perhaps by assuming increased parental responsibility, fathers may become more involved in family cohesion, enhancing family resilience and coping (Bayat, 2007).
As reported, there are mixed results on outcomes for and adjustment of typically developing siblings of individuals with ASD. Some siblings appear to be positively affected (e.g., high levels of self-concept and social competence) by having a sibling with ASD, or at least to experience no ill effects, whereas other siblings experience negative effects. The overall mixed findings and the findings about possible negative outcomes emphasize the need to continue research in this area. Additional and comprehensive understanding of the experiences and perceived needs of siblings of individuals with ASD may lead to the development of an effective support system based on these needs.
A fourth, potentially fruitful, area of inquiry is assessing the impact of varying levels of specific behavioral characteristics rather than just a diagnostic category. Bromley et al. (2004), Hastings (2003b), Herring et al. (2006), and Tomanik et al. (2004) have identified children's challenging behavior as a factor associated with maternal stress that leads to adverse outcomes. Similarly, we might consider the effects on family functioning of a child with ASD who never develops speech or a symbolic language system or whose dominant means of communication is echolalic relative to a child with ASD who has a well-developed repertoire of speech. These are questions that highlight independent variables and their effects on the plethora of dependent variables (e.g., stress, family cohesion, friendships) assessed in the extant literature. In addition, researchers might explore the impact on families of children with different subtypes of ASD, evaluating specific effects associated with one or another subtype.
Finally, there is a need to enhance the rigor and breadth of research on the impact of having a child with autism on families. The type of research needs to be expanded to include experimental work that explores the effect of independent variables such as the coping strategies and supports that have been identified in the literature. The reports of the findings in the existing literature often imply cause-and-effect relationships between variables when the research methodology cannot support such conclusions. Exemplary research might encompass investigations of short- and long-term benefits and outcomes of different support services (e.g., respite care, parent training) for diverse groups of families with children with ASD. The breadth of research also might be expanded, as mentioned previously, by moving beyond the multitude of studies of parent and family stress associated with having a child with autism and focusing more effort on identifying strategies/interventions that produce measurable outcomes of enhanced family functioning.
IMPLICATIONS FOR PRACTICE
In addition to the vast array of interventions directed to the individuals with ASD, this review of literature reveals the need for interventions and services that are directed specifically to other family members. Professionals and service providers should anticipate specific challenges to families that are likely to occur during various transition periods for the child (e.g., beginning school, adolescence to adulthood) and consider targeted types of services, supports, or interventions.
Many studies conducted prior to 2000 focused on stress in mothers of children with ASD. In the past few years, researchers have also focused on coping strategies adopted by and support structures for families of children with ASD. There is increasing evidence that many family members of children with ASD experience high levels of stress; our challenge now is to identify strategies to support these families. Three topics have emerged as critical support strategies to foster the well-being of families who have children with ASD. These include the availability of (a) quality care and respite services benefitting all family members, (b) informal and formal supports for parents and siblings, and (c) educational programs that offer parents and families' access to trained personnel and other services and benefits.
Perhaps the most consistent theme represented in the literature is the need for support such as respite care. Time afforded by respite care provides parents and siblings with much-needed opportunity for recreation and leisure, and benefits individuals with ASD by offering them new experiences with new people and possible exposure to more effective methods of service delivery. Respite care may also enhance coping efforts of parents by providing cognitive and emotional "relief" that may be important to sustain active coping strategies over the long term.
In addition to respite care, support groups also have been an important source of instrumental, informational and emotional support for family members, parents and siblings. Dale et al. (2006) emphasized that "feelings of well-being may be related to the ability to strike a balance between retaining personal control and still feel supported by those around them" (p. 476). Researchers (e.g., Mackintosh et al. 2006) emphasize the importance of informal support from family members, friends, and parents of other children with disabilities. Professionals could capitalize on this finding by developing specific interventions to enhance families embracing their natural supports (i.e., contacts with extended family, friends, neighbors) and to encourage and promote parent-to-parent communication not only in formal settings such as support groups, but also informally by meeting individually for coffee or play dates.
Parent education and training programs also are a vehicle that may contribute to feelings of control and support. According to Brookman-Frazee (2004) parent education programs have consistently mediated positive effects on a variety of targeted behaviors and characteristics in children. Parents of children with autism who participate in parent training experience improvement in mental health and well-being, reduced stress, and more time for leisure activities (Brookman-Frazee, 2004; Tonge et al., 2006).
Support for positive outcomes from parent intervention/training also emanate from a metaanalysis review by Singer, Ethridge, and Aldana (2007). These authors reviewed group intervention studies (i.e., behavioral parent training, cognitive behavioral training, and combined training with other support services) for parents of children with DD. The researchers reported multiple benefits from these trainings, including reduction in parental distress. The authors also reported that the most effective interventions were those that combined a focus on changing children's behavior and parents' well-being. Singer et al. concluded that there is "evidence to support the claim that there are established evidence-based interventions for reducing psychological distress at least in middle class mothers in the short term" (p. 357). The implications of this finding are that there is a foundation of evidence on which to build and develop support systems for families with children with ASD. Swenson (2005) described needed changes in the support system for families who have children with disabilities as including, "a system of life-long, individual, community- and family-based, flexible, person-centered supports that recognize the individual rights and needs of family members" (p. 366). All of these issues point to the need for more inclusive service-delivery options, more highly trained professionals in the field, and a greater commitment to a comprehensive educational system for children and families, including increased funding for support groups, personal-futures planning, staffing, and respite care. Moreover, there is a specific need to increase the availability of and access to support services for families in communities with lower SES and minority groups (Bromley et al., 2004; Mandell & Salzer, 2007).
Manuscript received January 2009; accepted November 2009.
Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M. W., Orsmond, G., & Murphy, M. M. (2004). Psychological well-being and coping in mothers of youths with autism, Down syndrome, or Fragile X syndrome. American Journal on Mental Retardation, 109, 237-254.
Allik, H., Larsson, J. O., & Smedje, H. (2006). Health-related quality of life in parents of school-age children with Asperger Syndrome or high-functioning autism. Health Quality of Life Outcomes, 4, 1-8.
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed. text rev.). Washington, DC: Author.
Bailey, D. B., Golden, R. N., Roberts, J., & Ford, A. (2007). Maternal depression and developmental disability: Research critique. Mental Retardation and Developmental Disabilities Research Reviews, 13, 321-329.
Baker-Ericzen, M. J., Brookman-Frazee, L., & Stahmer, A. (2005). Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Research and Practice for Persons with Severe Disabilities, 30, 194-204.
Baxter, C., Cummins, R. A., & Polak, S. (1995). A longitudinal study of parental stress and support: From diagnosis of disability to leaving school. International Journal of Disability, Development, and Education, 42, 125-136.
Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research, 51, 702-714.
Bell, R. Q. (1968). A reinterpretation of the direction of effects in studies of socialization. Psychological Review, 7, 81-95.
Benson, P., & Karlof, K. L. (2008). Child, parent, and family predictors of latter adjustment in siblings of children with autism. Research in Autism Spectrum Disorders, 2, 583-600.
Benson, P. R. (2006). The impact of symptom severity of depressed parents of children with ASD. Journal of Autism and Developmental Disorders, 36, 685-695.
Bishop, S. L., Richler, J., Cain, A. C., & Lord, C. (2007). Predictors of perceived negative impact in mothers of children with autism spectrum disorder. American Journal on Mental Retardation, 112, 450-461.
Blacher, J., & McIntyre, L. L (2006). Syndrome specificity and behavioural disorders in young adults with intellectual disability: Cultural differences in family impact. Journal of Intellectual Disability Research, 50, 184-198.
Boyd, B. A. (2002). Examining the relationship between stress and lack of social support in mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 17, 208-215.
Bromley, J., Hare, D. J., Davison, K., & Emerson, E. (2004). Mothers supporting children with autistic spectrum disorders: Social support, mental health status and satisfaction with services. Autism, 8, 409-423.
Brookman-Frazee, L. (2004). Using parent/clinician partnerships in parent education programs for children with autism. Journal of Positive Behavior Interventions, 6, 195-213.
Centers for Disease Control and Prevention. (n.d.). Data & statistics. Retrieved from http://www.cdc.gov/ncbddd/autism/index.html
Chan, J. B., & Sigafoos, J. (2001). Does respite care reduce parental stress in families with developmentally disabled children? Child & Youth Care Forum, 30, 253-263.
Cowen, E S., & Reed, D. A. (2002). Effects of respite care for children with developmental disabilities: Evaluation of an intervention for at risk families. Public Health Nursing, 19, 272-283.
Crnic, K., & Low, C. (2002). Everyday stresses and parenting. In M. H. Bornstein (Ed.), Handbook of parenting: Vol. 5: Practical issues in parenting (pp. 243-267). Mahwah, NJ: Lawrence Erlbaum.
Dale, E., Jahoda, A., & Knott, F. (2006). Mothers' attributions following their child's diagnosis of autistic spectrum disorder: Exploring links with maternal levels of stress, depression and expectations about their child's future. Autism, 10, 463-479.
Duarte, C. S., Bordin, I. A., Yazigi, L., & Mooney, J. (2005). Factors associated with stress in mothers of children with autism. Autism, 9, 416-427.
Dunn, M. E., Burbine, T., Bowers, C. A., & TantleffDunn, S. (2001). Moderators of stress in parents of children with autism. Community Mental Health Journal, 37, 39-52.
Ebata, A.T., & Moos, R. H. (1994). Personal, situational, and contextual correlates of coping in adolescence. Journal of Research on Adolescence, 4, 99-125.
Giallo, R., & Gavidia-Payne, S. (2006). Child, parent and family factors as predictors of adjustment for siblings of children with a disability. Journal of Intellectual Disability Research, 50, 937-948.
Glasberg, B. A., Martins, M., & Harris, S. L. (2006). Stress and coping among family members of individuals with autism. In M. G. Baron, J. Groden, G. Groden, & L. P. Lipsitt (Eds.), Stress and coping in autism (pp. 277-301). New York, NY: Oxford University Press.
Gray, D. E. (2002). Ten years on: A longitudinal study of families of children with autism. Journal of Intellectual and Developmental Disability, 27, 215-222.
Gray, D. E. (2003). Gender and coping: The parents of children with high functioning autism. Social Science and Medicine, 56, 631-642.
Gray, D. E. (2006). Coping over time: The parents of children with autism. Journal of Intellectual Disability Research, 50, 970-976.
Hare, D. J., Pratt, C., Burton, M., Bromley, J., & Emerson, E. (2004). The health and social care needs of family carers supporting adults with autistic spectrum disorders. Autism, 8, 425-444.
Hastings, R. P. (2003a). Brief report: Behavioral adjustment of siblings of children with autism. Journal of Autism and Developmental Disorders, 33, 99-104.
Hastings, R. P. (2003b). Child behavior problems and partner mental health as correlates of stress in mothers and fathers of children with autism. Journal of Intellectual Disability Research, 47, 231-237.
Hastings, R. P. (2003c). Behavioral adjustment of siblings of children with autism engaged in applied behavior analysis early intervention programs: The moderating role of social support. Journal of Autism and Developmental Disorders, 33, 141-150.
Hastings, R. P. (2007). Longitudinal relationships between sibling behavioral adjustment and behavior problems of children with developmental disabilities. Journal of Autism and Developmental Disorders, 37, 1485-1492.
Hastings, R. E, & Johnson, E. (2001). Stress in UK families conducting intensive home-based intervention for their young child with autism. Journal of Autism and Developmental Disorders, 31, 327-336.
Hastings, R. P., Kovshoff, H., Brown, T., Ward, N. J., Espinosa, F. D., & Remington, B. (2005). Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism, 9, 377-391.
Hastings, R. P., Kovshoff, H., Ward, N. J., Espinosa, F. D., Brown, T., & Remington, B. (2005). Systems analysis of stress and positive perceptions in mothers and fathers of pre-school children with autism. Journal of Autism and Developmental Disorders, 35, 635-644.
Herring, S., Gray, K., Taffe, J., Tonge, B., Sweeney, D., & Einfeld, S. (2006). Behavior and emotional problems in toddlers with pervasive developmental disorders and developmental delay: Associations with parental mental health and family functioning. Journal of Intellectual Disability Research, 50, 874-882.
Higgins, D. J., Bailey, S. R., & Pearce, J. C. (2005). Factors associated with functioning style and coping strategies of families with a child with an autism spectrum disorder. Autism, 9, 125-137.
Hutton, A. M., & Caron, S. L. (2005). Experiences of families with children with autism in rural New England. Focus on Autism and Other Developmental Disabilities, 20, 180-189.
Jarbrink, K., Fombonne, E., & Knapp, M. (2003). Measuring the parental, service and cost impacts of children with autistic spectrum disorder: A pilot study. Journal of Autism and Developmental Disorders, 33, 395-402.
Jones, J., & Passey, J. (2004). Family adaptation, coping and resources: Parents of children with developmental disabilities and behavior problems. Journal on Developmental Disabilities and Behavior Problems, 11, 31-46.
Kaminsky, L., & Dewey, D. (2002). Psychosocial adjustment in siblings of children with autism. Journal of Child Psychology and Psychiatry, 43, 225-232.
Koegel, R. L., Bimbela, A., & Schreibman, L. (1996). Collateral effects of parent training on family interactions. Journal of Autism and Developmental Disorders, 26, 347-359.
Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behaviour problems on caregiver stress in young people with autism spectrum disorder. Journal of Intellectual Disability Research, 50, 172-183.
Lerner, R. M., & Spanier, G. B. (1980). A dynamic interactional view of child and family development. In R. M. Lerner & G. B. Spanier (Eds.), Child influences on marital and family interaction: A life-span perspective (pp. 1-20). New York, NY: Academic.
Little, L. (2002). Differences in stress and coping for mothers and fathers of children with Asperger's syndrome and nonverbal learning disorders. Pediatric Nursing, 28, 565-570.
Luther, E. H., Canham, D. L., & Cureton, V. Y. (2005). Coping and social support for parents of children with autism. The Journal of School Nursing, 21, 40-47.
Mackintosh, V. H., Myers, B. J., & Goin-Kochel, R. P. (2006). Sources of information and support used by parents of children with autism spectrum disorders. Journal on Developmental Disabilities, 12, 41-51.
Macks, R. J., & Reeve, R. E. (2007). The adjustment of non-disabled siblings of children with autism. Journal of Autism and Developmental Disorders, 37, 1060-1067.
Mandell, D. S., & Salzer, M. S. (2007). Who joins support groups among parents of children with autism? Autism, 11, 111-122.
Mascha, K., & Boucher, J. (2006). Preliminary investigation of a qualitative method of examining siblings' experiences of living with a child with ASD. The British Journal of Developmental Disabilities, 52, 19-28.
Mugno, D., Ruta, L., D'Arrigo, V. G., & Mazzone, L. (2007). Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health and Quality of Life Outcomes, 5, 22-31.
Mullins, L. L., Aniol, K., Boyd, M. L., Page, M. C., & Chaney, J. M. (2002). The influence of respite care on psychological distress in parents of children with developmental disabilities: A longitudinal study. Children's Services: Social Policy, Research, and Practice, 5, 123-138.
Orsmond, G. I., & Seltzer, M. M. (2007). Siblings of individuals with autism or Down syndrome: Effect on adult lives. Journal of Intellectual Disability Research, 51, 683-696.
Pakenham, K. I., Samios, C., & Sofronoff, K. (2005). Adjustment in mothers of children with Asperger syndrome: An application of the double ABCX model of family adjustment. Autism, 9, 191-212.
Patterson, G. R., & Fisher, E A. (2002). Recent developments in our understanding of parenting: Bidirectional effects, causal models and the search for parsimony. In M. Bornstein (Ed.), Handbook of parenting: Vol. 5. Practical issues in parenting, (pp. 59-88). Mahwah, NJ: Lawrence Erlbaum.
Perry, A., Harris, K., & Minnes, P. (2004). Family environments and family harmony: An exploration across severity, age, and type of DD. Journal on Developmental Disabilities, 11, 17-30.
Pilowsky, T., Yirmiya, N., Doppelt, O., Gross-Tsur, V., & Shalev, R. S. (2004). Social and emotional adjustment of siblings of children with autism. Journal of Child Psychology and Psychiatry, 45, 855-865.
Pisula, E. (2007). A comparative study of stress profiles in mothers of children with autism and those of children with Down's syndrome. Journal of Applied Research in Intellectual Disabilities, 20, 274-278.
Poston, D., Turnbull, A., Park, J., Mannan, H., Marquis, J., & Wang, M. (2003). Family quality of life: A qualitative inquiry. Mental Retardation, 41, 313-328.
Risdal, D., & Singer, G. H. S. (2004). Marital adjustment in parents of children with disabilities: A historical review and meta-analysis. Research & Practice for Persons with Severe Disabilities, 29, 95-103.
Rivers, J. W, & Stoneman, Z. (2003). Sibling relationships when a child has autism: Marital stress and support coping. Journal of Autism and Developmental Disorders, 33, 383-394.
Ross, P., & Cuskelly, M. (2006). Adjustment, sibling problems and coping strategies of brothers and sisters of children with autistic spectrum disorder. Journal of Intellectual and Developmental Disability, 31, 77-86.
Roth, S., & Cohen, L. J. (1986). Approach, avoidance and coping with stress. American Psychologist, 41, 813-819.
Sameroff, A. J., & Chandler, M. (1975). Reproductive risk and the continuum of caretaking casualty. In E D.
Horowitz, E. M. Hetherington, S. Scarr-Salapatek, & G. Siegel (Eds.), Review of child development research, Vol. 4 (pp. 187-244). Chicago, IL: University of Chicago Press.
Sanders, J. L., & Morgan, S. B. (1997). Family stress and adjustment as perceived by parents of children with autism or Down syndrome: Implications for intervention. Child and Family Behavior Therapy, 19, 15-32.
Schwichtenberg, A., & Poehlmann, J. (2007). Applied behaviour analysis: Does intervention intensity relate to family stressors and maternal well-being? Journal of Intellectual Disability Research, 51, 598-605.
Sharpe, D. L., & Baker, D. L. (2007). Financial issues associated with having a child with autism. Journal of Family Economic Issues, 28, 247-264.
Sharpley, C. F., Bitsika, V., & Efremidis, B. (1997). Influence of gender, parental health, and perceived expertise of assistance upon stress, anxiety, and depression among parents of children with autism. Journal of Intellectual and Developmental Disability 22, 19-28.
Shu, B. C., & Lung, F. W. (2005). The effect of support group on the mental health and quality of life for mothers with autistic children. Journal of Intellectual Disability Research, 49, 47-53.
Siklos, S., & Kerns, K. A. (2006). Assessing need for social support in parents of children with autism and Down syndrome. Journal of Autism and Developmental Disorders, 36, 921-933.
Singer, G. H. S., Ethridge, B. L., & Aldana, S. I. (2007). Primary and secondary effects of parenting and stress management interventions for parents of children with developmental disabilities: A meta-analysis. Mental Retardation and Developmental Disabilities Research Reviews, 13, 357-369.
Sivberg, B. (2002). Family system and coping behaviors: A comparison between parents of children with autistic spectrum disorders and parents with non-autistic children. Autism, 6, 397-409.
Smith, T., & Perry, A. (2005). A sibling support group for brothers and sisters of children with autism. Journal on Developmental Disabilities, 11, 77-88.
Swenson, S. (2005). Families, research and system change. Mental Retardation, 43, 365-368.
Tarakeshwar, N., & Pargament, K. I. (2001). Religious coping in families of children with autism. Focus on Autism and Other Developmental Disabilities, 16, 247-260.
Thomas, K. C., Ellis, A. R., McLaurin, C,. Daniels, J., & Morrissey, J. P. (2007). Access to care for autism-related services. Journal of Autism and Developmental Disorders, 37, 1902-1912.
Tobing, L. E., & Glenwick, D. S. (2006). Predictors and moderators of psychological distress in mothers of children with pervasive developmental disorders. Journal of Family Social Work, 10, 1-22.
Tomanik, S., Harris, G. E., & Hawkins, J. (2004). The relationship between behaviors exhibited by children with autism and maternal stress. Journal of Intellectual and Developmental Disability 29, 16-26.
Tonge, B., Brereton, A., Kiomall, M., Mackinnon, A., King, N., & Rinehart, N. (2006). Effects on parental mental health of an education and skills training program for parents of young children with autism: A randomized controlled trial. Journal of the American Academy of Child and Adolescent Psychiatry, 45, 561-569.
Trudgeon, C., & Carr, D. (2007). The impacts of home-based early behavioural intervention programmes on families of children with autism. Journal of Applied Research in Intellectual Disabilities, 20, 285-296.
Tunali, B., & Power, T. G. (2002). Coping by redefinition: Cognitive appraisals in mothers of children with autism and children without autism. Journal of Autism and Developmental Disorders, 32, 25-34.
Turnbull, A. P., Turnbull, H. R., Erwin, E., & Soodak, L. (2006). Families, professionals, and exceptionality: Positive outcomes through partnerships and trust (5th ed.). Upper Saddle River, NJ: Merrill/Prentice Hall.
Twoy, R., Connolly, P. M., & Novak, J. M. (2007). Coping strategies used by parents of children with autism. Journal of the American Academy of Nurse Practitioners, 19, 251-260.
Verte, S., Roeyers, H., & Buysse, A. (2003). Behavioural problems, social competence and self-concept in siblings of children with autism. Child: Care, Health &Development, 29, 193-205.
Weiss, M. J. (2002). Hardiness and social support as predictors of stress in mothers of typical children, children with autism, and children with mental retardation. Autism, 6, 115-130.
Whitaker, P. (2002). Supporting families of preschool children with autism: What parents want and what helps. Autism, 6, 411-426.
Yamada, A., Suzuki, M., Kato, M., Suzuki, M., Tanaka, S. Shindo, T. .... Furukawa, T. (2007). Emotional distress and its correlates among parents of children with pervasive developmental disorders. Psychiatry and Clinical Neurosciences, 61, 651-657.
Illinois State University
JAMES W. HALLE
AARON T. EBATA
University of Illinois- Urbana-Champaign
Correspondence concerning this article should be addressed to Hedda Meadan, Department of Special Education, Illinois State University, Normal, IL 61790 (e-mail: firstname.lastname@example.org).
This article was supported, in part, by the Family Resiliency Initiative, University of Illinois and The Autism Program at the University of Illinois at Urbana-Champaign.
HEDDA MEADAN (Illinois CEC), Assistant Professor, Department of Special Education, Illinois State University, Normal. JAMES W. HALLE, Professor, Department of Special Education; and AARON T. EBATA, Associate Professor, Department of Human & Community Development, University of Illinois at Urbana-Champaign.
TABLE 1 Peer-Reviewed, Data-Based Articles Published Between 2000 and 2007 ASD Study (Year) Purpose and Method(s) Focus Group (a) Abbeduto et al. Purpose: To compare the 174 mothers (2004) psychological well-being of M = 46 years mothers of individuals with Fragile X, DS, and autism Method: Mothers' self- administered measures Allik, Larsson, Purpose: To evaluate the 31 mothers & Smedje (2006) health-related quality of life M = 42 years in parents of children with ASD R = 28-54 years or HFA 30 fathers M 45 = years Methods: Parents' self- R = 35-64 years administered measures; Teachers completed behavior checklist Baker-Ericzen, Purpose: To examine parental 37 mothers Brookman-Frazee, stress before and after M = 32 years & Stahmer (2005) involvement in an inclusive 27 fathers toddler program (parents of M = 35 years children with ASD and parents of typically developing children) Methods: Quasiexperimental pre- -postdesign; Parents' self- administered measures Bayat (2007) Purpose: To examine the 134 mothers resilience in families with 30 fathers children with autism 11 other M = 41 years Method: Qualitative analysis of caregivers' written answers to 3 open-ended questions. Benson (2006) Purpose: To investigate the 60 mothers relationship between the 8 fathers severity of the child's M = 38 years symptoms, stress proliferation, R = 28-61 years and parent depression and to examine the role of social support in reducing stress proliferation and depression Method: Parents' self- administered measures Bishop, Richler, Purpose: To examine the 110 mothers Cain, & Lord perceived negative impact of 6 fathers (2007) parenting a child with ASD Methods: Parents: structured interviews including a few standardized measures; Children: assessment measures Bromley, Hare, Purpose: To examine the impact 68 mothers Davison, & of having a child with autism Emerson (2004) on mothers' psychological well- being Methods: Structured interviews including a few standardized measures Brookman-Frazee Purpose: To examine the effects 3 mothers (2004) of two parent education conditions (parent-clinician partnership vs. clinician- directed model) on mothers and their children with autism Methods: Repeated reversal design; Observational data Dale, Jahoda, & Purpose: To examine the way 16 mothers Knott (2006) mothers make sense of the R = 28-44 years initial diagnosis of autism Methods: Focus group; Mothers' self-administered measures Duarte, Bordin, Purpose: To explore the causes 31 mothers Yazigi, & Mooney of stress for mothers of M = 32.9 years (2005) children with autism R = 22-45 years Method: Standardized assessment (Rorschach test) Dunn, Burbine, Purpose: To determine the 39 mothers Bowers, & effect of various stressors and 19 fathers Tantlef Dunn subsequent coping styles on the M = 36 years (2001) well-being of parents of R = 25-67 years children with autism Method: Parents' self- administered measures Gray (2002) Purpose: To examine the 19 mothers experiences of parents and 9 fathers other family members in coping with the changing problems of a child with autism over time Method: Semistructured interviews Gray (2003) Purpose: To explore the role of 32 mothers gender and coping among parents 21 fathers of children with AS Method: Semistructured interviews Gray (2006) Purpose: To examine how parents 19 mothers of children with autism cope 9 fathers over time (8-10 years) Method: Semistructured interviews Hare, Pratt, Purpose: To investigate the 77% mothers Burton, Bromley, health and social care needs of 23% fathers & Emerson families supporting adults with (2004) ASD Methods: Parents' structured interviews including a few standardized measures Hastings (2003a) Purpose: To explore the 78 siblings adjustment of siblings of R = 4-16 years children with ASD engaged in 78 mothers intensive ABA early R = 26-51 years intervention programs Method: Mothers' self- administered measures Hastings (2003b) Purpose: To investigate what 22 siblings variables might affect R = 4-16 years adjustment of siblings of 26 mothers children with ASD M = 41 years Methods: Mothers' self- administered measures; Teachers completed behavior checklist Hastings (2003c) Purpose: To explore the 18 mothers interrelationships between and M = 41 years psychological well-being of 18 fathers mothers and fathers of a child M = 43 with autism years Methods: Parents' self- administered measures; Teachers completed behavior checklist Hastings & Purpose: To explore predictors 130 mothers Johnson (2001) of stress of parents 11 fathers participating in intensive M = 37 years home-based intervention for R = 26-53 years young children with ASD Method: Parents' self- administered measures Hastings, Purpose: To explore 74 mothers Kovshoff, Brown, coping strategies, 61 fathers et al. (2005) stress, and mental health of parents of children with autism Method: Parents' self- administered measures Hastings, Purpose: To explore the 48 mothers Kovshoff Ward, psychological functioning in M = 34 years et al. (2005) families of children with 41 fathers autism M = 38 years Methods: Parents' self- administered measures; Mothers: structured interview Herring et al. Purpose: To explore the effects 79 mothers (2006) of emotional and behavioral 72 fathers problems in toddlers with PDD and with developmental delays on their parents and families Methods: Parents' structured interviews; Parents' self- administered measures; Children: assessment measures Higgins, Bailey, Purpose: To examine the 50 mothers & Pearce (2005) relationship between ASD 2 fathers characteristics, family functioning, and coping strategies Method: Parents' self- administered measures Hutton & Caron Purpose: To examine how 19 mothers (2005) families adapt to having a 2 fathers child with autism Method: Parents' semistructured interviews Jarbrink, Purpose: To describe how to 15 parents Fombonne, & approach the collection of cost Knapp (2003) information concerning informal care of individuals with ASD Method: Parents' self- administered measures Kaminsky & Purpose: To examine the 30 siblings Dewey (2002) adjustment of siblings of M = 12 years children with autism compared R = 8-18 years to siblings of children with DS or those who were typically developing Methods: Siblings' and parents' self-administered measures Lecavalier, Leone, Purpose: To examine the effects 86% mothers & Wiltz (2006) of behavior problems and level 14% fathers of functioning of children with M = 40 years ASD on caregivers' stress Methods: Parents' and teachers' self-administered measures Luther, Canham, Purpose: To assess the 18 parents & Cureton perceived coping strategies and (2005) social support of parents of children with autism Method: Parents' self- administered measures Mackintosh, Purpose: To examine sources of 498 parents Myers, & information and support Goin-Kochel reported by parents of children (2006) with ASD Method: Parents' self- administered measures Macks & Reeve Purpose: To examine and compare 51 siblings (2007) the psychosocial and emotional R = 7-17 years adjustment of siblings of children with autism and siblings of typically developing children Methods: Parents' and siblings' self-administered measures Mascha & Purpose: To develop a method of 14 siblings Boucher (2006) gathering information about the M = 15 years subjective experiences of R = 11-18 years siblings of children with ASD Method: Siblings' semistructured interviews Mugno, Ruta, Purpose: To evaluate and 39 mothers D'Arrigo, & compare the quality of life of 30 fathers Mazzone (2007) parents of children with PDD, M = 37 years cerebral palsy, mental retardation, and typically developing children Method: Parents' self- administered measures Orsmond & Purpose: To examine whether 77 siblings - Seltzer (2007) type of disability impacts M = 38 years sibling relationships, and R = 21-56 years whether disability type is associated with positive and negative aspects of the sibling relationship Methods: Siblings' and mothers' self-administered measures Pakenham, Purpose: To understand the 47 mothers Samios, & factors influencing adjustment Sofronoff (2005) in mothers of children with AS Method: Mothers' self- administered measures Perry, Harris, & Purpose: To explore the family 55 mothers Minnes (2004) environment and family harmony 24 fathers in parents of children with developmental disabilities (i.e., autism, Rett syndrome, Fragile X, DS; unknown etiology) Method: Parents' self- administered measure Pilowsky et al. Purpose: To examine the social 30 siblings (2004) and emotional adjustment of M = 9 years siblings of children with R = 6-10-years autism Methods: Siblings' and parents' self-administered measures and interviews Pisula (2007) Purpose: Compare stress in 25 mothers mothers of children with ASD to M = 38 years mothers of children with DS R = 2C-56 years Method: Mothers' self- administered measures Rivers & Purpose: To examine if family 50 siblings Stoneman factors (i.e., marital stress M = 9 years (2003) and coping by seeking social R = 7-12 years support) affect quality of 49 mothers sibling relationships when one 1 father child has autism M = 37 years R = 30-49 years Methods: Siblings' and parents' self-administered measures Ross & Cuskelly Purpose: To investigate 25 siblings (2006) adjustment and coping M = 10 years strategies of siblings of R = 8-15 years children with ASD Methods: Siblings' and parents' self-administered measures Schwichtenberg Purpose: To assess how home- 41 mothers & Poehlmann based ABA program for children M = 37 years (2007) with ASD impacts the family R = 24-49 years Method: Mothers' self- administered measures Sharpe & Baker Purpose: To identify factors 333 parents (2007) associated with financial problems in families with children with autism Method: Parents' self- administered measures Shu & Lung Purpose: To explore the effect 27 mothers (2005) of support groups on the mental M = 41 years health and quality of life for R = 30-51 mothers of children with autism years Methods: Quasiexperimental pre--postcontrol group design; Mothers' self-administered measures Siklos & Kerns Purpose: To explore and compare 56 mothers (2006) the perceived needs for social M = 39 years support by parents of children R = 24-50 with ASD and DS years Method: Mothers' self- administered measures Sivberg (2002) Purpose: To explore and compare 37 mothers family systems and coping 29 fathers behaviors of parents of chil- R = 25-62 dren with ASD and parents of years typically developing children Method: Parents' self- administered measures Smith & Perry Purpose: To examine the 26 siblings (2005) effectiveness of a sib-ling M = 10 years support group for siblings of R 6-16 children with ASD = years Methods: Quasiexperimental pre--postdesign; Siblings and parents' self-administered measures Tarakeshwar & Purpose: To assess the use of 43 mothers Pargament (2001) religious coping methods among 2 fathers parents of children with ASD Methods: Parents' self- administered measures and semistructured interviews Thomas, Ellis, Purpose: To identify family 383 families McLaurin, characteristics associated with 97% mothers Daniels, & use of autism services Morrissey (2007) Methods: Parents' self- administered measures and structured interviews Tobing & Purpose: To investigate the 97 mothers Glenwick psychosocial adaptation of (2006) mothers of children with ASD Method: Mothers' self- administered measures Tomanik, Harris, Purpose: To examine the 60 mothers & Hawkins relationship between the child M = 35 years (2004) with ASD's adaptive and R = 26-46 years maladaptive behavior and perceived levels of maternal stress Method: Mothers' self- administered measures Tonge et al. Purpose: To examine the impact 105 parents (2006) of a parent education and R = 25-43 behavior management intervention on the mental health and adjustment of parents of preschool children with autism Methods: Randomized, group comparison design; Parents' pre-and posttreatment self administered measures Trudgeon & Carr Purpose: To investigate the 9 mothers (2007) positive impacts and stressors 7 fathers of families running early R = 31-45 years intensive behavioral intervention programs Method: Semistructured interviews Tunali & Power Purpose: To examine and compare 29 mothers (2002) coping strategies of mothers of children with and without autism Methods: Mothers' self- administered measures and semistructured interviews Twoy, Connolly, Purpose: To identify the coping 29 mothers & Novak (2007) strategies used by families 22 fathers with children with ASD R = 31-50 years Method: Parents' self- administered measures Verte, Roeyers, & Purpose: To investigate the 29 siblings Buysse (2003) psychological adjustment of M = 11 years siblings of children with HFA R 6-16 = years in comparison with siblings of typically developing children Methods: Siblings' and parents' self-administered measures Weiss (2002) Purpose: To assess the effects 40 mothers of social support and hardiness R = 24-48 years on the level of stress in mothers of typical developing children, children with autism, and children with mental retardation Method: Mothers' self- administered measures Whitaker (2002) Purpose: To assess parents' mothers levels of satisfaction with support services provided and explore parental responses to the different components of the support offered Method: Semistructured interviews Yamada et al. Purpose: To evaluate emotional 147 mothers (2007) stress of parents of children M = 38 years with ASD and to explore the 122 fathers correlates to their emotional M 41 stress = years Method: Parents' self- administered measures Characteristics of Study (Year) Individuals With ASD Main Findings Abbeduto et al. ASD Mothers of individuals (2004) 73% M with ASD reported more R = 10-23 years distant relationship with the child with disability and higher levels of depression than comparison groups. The most consistent predictor of maternal outcomes was the behavioral symptoms of the individual with disability. Allik, Larsson, AS/HFA Mothers (but not fathers) & Smedje (2006) 28M of school-age children 4 F with AS/HFA reported M = 10 years impaired health related R = 8-12 years to quality of life. A relationship between maternal well-being and child's behavior characteristics (e.g., hyperactivity and conduct problems) was found. Baker-Ericzen, ASD Parents of toddlers with Brookman-Frazee, 29 M ASD reported & Stahmer (2005) 8 F significantly higher M = 28 months levels of child- and parent-related stress com pared to parents of typically developing toddlers. Mothers of children with ASD showed significant reductions in child-related stress after program participation. Bayat (2007) ASD Despite extraordinary 141 M challenges faced by 34 F families of children with M = 10 years for M ASD, a number of these M = 11 years for F families show evidence of R = 2 -18 years resilience: reporting on becoming stronger as a result of disability in the family. Benson (2006) ASD Raising a child with ASD 88% M can result in serious 12% F psycho logical distress M = 7 years in parents. Informal R 4 -10 = years parent support ameliorated depression in parents whose children had milder symptoms. Bishop, Richler, ASD African American mothers Cain, & Lord 98 M reported less perceived (2007) 12 F negative impact than M = 9 years Caucasian mothers. Child characteristics were not predictors of perceived negative impact. Mothers with fewer children in the home re ported higher perceived negative impact. Bromley, Hare, ASD The results of the study Davison, & 57M indicated that high Emerson (2004) 14 F levels of psychological R = 5-18 years distress in mothers of children with autism were associated with low levels of family support and with high levels of child's challenging behavior. Brookman-Frazee Autism During the partnership, (2004) 3 M condition mothers had M = 31 months lower levels of observed R = 29-34 months stress and higher levels of observed confidence compared to during the clinician-directed condition. Children also demonstrated more positive affect, higher levels of responding, and appropriate engagement in the partnership condition. Dale, Jahoda, & ASD Mothers had low levels of Knott (2006) 11 M depression and high 5 F expectations for their R = 3-9 years children's future. The mothers' stress level was high. There was a great disparity in the attributions the mothers made in relation to their children. Duarte, Bordin, Autism Having a child with Yazigi, & Mooney 29 M autism seemed to be the (2005) 2 F main cause of stress; M = 6 years however, other factors R = 3-12 years such as poor affect, lack of interest in others, having a younger child, and being an older mother were also found to be contributing causes of stress. Dunn, Burbine, Autism The results indicated Bowers, & M = 7 years that the relationship Tantlef Dunn R = 3-15 years between stressors and (2001) negative outcomes was moderated by social support and coping style. The use of escape and avoidance as coping strategies was found to correspond to increased depression, isolation, and marital problems. Gray (2002) Autism Two thirds of parents 13 M reported that their 7 F situation was better than R = 13-27 years it had been 10 years before. Parents of chil- dren who exhibited aggressive behaviors reported high levels of stress and dissatisfaction with the level of ser vices they received. Gray (2003) AS Mothers assumed R = 5-26 years disproportionate responsibility for caregiving. Fathers reported an indirect effect of the child's disability on their lives, whereas mothers re ported emotional distress and lifestyle changes (e.g., abandoned a career) associated with the responsibility of interacting with medical and educational systems. Gray (2006) Autism Coping strategies changed 13 M over time. The total 7 F number of coping M = 18 years strategies reported by (at follow-up) parents declined. The researcher found a shift from problem-focused coping strategies toward emotion-focused coping strategies. Hare, Pratt, ASD Strong association Burton, Bromley, 22 M between parental & Emerson 4 F emotional distress and (2004) M = 27 years unmet needs. Parents R = 20-40 years reported need for autism specific interventions and support. Hastings (2003a) Autism Study found no evidence 89% M of a negative effect on 11% F siblings of young M = 5 years children with autism engaged in intensive ABA programs. Siblings in families with children with autism who exhibited less severe behavior had fewer adjustment problems when formal social support was available to the families. Hastings (2003b) ASD Siblings of children with 17 M autism were found to have 9 F more peer problems, M = 12 years increased adjustment R = 7-16 years issues, and lower prosocial behavior than children in the normative sample. Hastings (2003c) Autism Mothers and fathers did 13 M not differ in their 5 F levels of stress or M = 11 years depression. However, R = 8-17 years mothers reported more anxiety than fathers. Child behavior problems and father's mental health were found to be associated with mother's stress. Hastings & Autism Parents of children with Johnson (2001) 90% M autism reported more 10% F stress than parents of M = 5 years children with other disabilities. Adaptive coping strategies, informal social support, and belief in the efficacy of the intervention were associated with lower stress; more severe child symptoms were associated with higher stress. Hastings, Autism Active avoidance coping Kovshoff, Brown, 59M and religious/denial et al. (2005) 15 F coping were related to R = 2-17 years more stress and mental health problems in both mothers and fathers. Positive coping was associated with lower levels of depression, and problem-focused coping was not associated with parental stress or mental health. Hastings, Autism The results indicated Kovshoff Ward, 41 M that paternal stress and et al. (2005) 7 F positive perceptions were M = 37 months predicted by maternal R = 28-45 months depression. Maternal stress was predicted by their child's behavior problems and by their partner's depression. In addition, mothers and fathers identified positive perceptions about their child and his or her impact on themselves and other family members. Herring et al. Autism/PDD Behavior and emotional (2006) R = 20-51 months problems were found to have a significant impact on parent outcome, with the exception of father stress. Fathers consistently reported less stress than mothers. Fathers with children with PDD were more stressed than fathers of children with delays without PDD. Child emotional and behavioral problems contributed significantly more to mother stress than child diagnosis (PDD or non-PDD), delay, or gender. Higgins, Bailey, ASD Primary caregivers of a & Pearce (2005) 48 M child with ASD reported 6 F lower marital happiness, M = 10 years family adaptability and family cohesion than normative data; however, there was no evidence of lower self-esteem. Coping strategies did not appear to be related to marital or family adjustment. Hutton & Caron Autism Most parents expressed (2005) 17 M that the experience of 4 F having a child with R = 3-16 years autism was stressful. A few parents talked about the experience as being positive. Jarbrink, ASD Results indicated Fombonne, & 14 M considerable economic Knapp (2003) 3 F burden for parents and M = 8 years gave some indication of R = 4-10 years the associated costs of ASD. Kaminsky & Autism Results of study Dewey (2002) M = 10 years indicated that siblings of children with autism were not at an increased risk for loneliness or difficulties with social adjustment; their perceptions of social support were also not different from those of children in the comparison groups, and they did not present with deficits in social competency. Lecavalier, Leone, ASD Data indicated that & Wiltz (2006) 243 M behavior problems were 50 F strongly associated with M = 9 years stress; however, the R = 3-18 years teachers and parents did not perfectly agree on the nature and severity of the behavior problems. Luther, Canham, Autism Families reported & Cureton 14 M stressors in addition to (2005) 4 F the child's disability, M = 8 years and most often used R = 5-13 years social support and reframing as coping strategies. Mackintosh, ASD Parents reported the most Myers, & 398 M frequent source of both Goin-Kochel 100 F support and information (2006) M = 9 years was other parents of children with ASD. Lower-income parents used fewer supports and information sources. Macks & Reeve Autism Siblings of children with (2007) autism appeared to have a more positive self-concept than did siblings of typically developing children. The presence of a child with autism appeared to have a negative impact on the typically developing sibling as demographic risk factors increased. Mascha & ASD Although a majority of Boucher (2006) M = 11 years participants reported R = 7-20 years some positive aspects of having a sibling with ASD, many perceptions and experiences were negative-specifically related to the individual's problem behaviors, being embarrassed by the individual, and aggressive behavior as demonstrated by the individual with ASD. Mugno, Ruta, ASD Parents of children with D'Arrigo, & 42M PDD reported lower Mazzone (2007) 11 F quality of life and M = 7.5 years impairment in physical R = 3-17 years activity and social relationships compared to the other groups. Mothers of children with PDD had lower quality of life compared to fathers. Orsmond & ASD Siblings of individuals Seltzer (2007) 56M with ASD spent less time 21 F with and had less close M = 35 years relationships than siblings of individuals with DS; siblings of individuals with DS were more optimistic about their sibling's future. A closer sibling relationship was observed when the sibling used problem-focused coping strategies. Pakenham, AS Double ABCX model may Samios, & 40 M explain adjustment Sofronoff (2005) 7 F process. Maternal R = 10-12 years adjustment was related to higher levels of social support, low levels of child behavior problems, pile-up of demands, stress appraisals, and passive avoidant coping. Problem-focused coping was unrelated to adjustment. Perry, Harris, & Autism Family environment as Minnes (2004) R = 0-18 years reported by participants resembled typical/healthy family's environment more than distressed families. Families of children with developmental delays of unknown etiology and children with autism reported the lowest levels of family harmony. Pilowsky et al. Autism Siblings of children with (2004) M = 9 years autism were relatively well adjusted and were not necessarily associated with increased vulnerability for social and emotional difficulties. Pisula (2007) Autism Mothers of children with 17 M autism reported higher 8 F stress levels compared to M = 11 mothers of children with years DS. Mothers of children R = 4-20 years with autism were most concerned about their children's dependence on the care of others, their children's future, and the permanency of their condition. Rivers & ASD When marital stress was Stoneman 42 M higher, siblings were (2003) 8 F less satisfied with their M = 7 years sibling relationship. R = 4-12 years Informal support buffered the deleterious effects of marital stress on positive, but not negative, aspects of the siblings' relationships. Ross & Cuskelly ASD Aggressive behavior was (2006) 20 M the most commonly 5 F reported interaction M = 11 years problem between siblings, R = 6-16 years and anger was the most common response. Coping strategies and knowledge of autism were not associated with adjustment. Scores on the Child Behavior Checklist placed 40% of siblings in the clinical or borderline range. Schwichtenberg ASD Mothers of children & Poehlmann M = 6 years participating in ABA (2007) R = 3-14 years program reported more depression than mothers of children with other developmental delays. ABA intensity was related to maternal depression and personal strain. Sharpe & Baker Autism This study indicated that (2007) R = 1-18 years a diagnosis of autism for a family causes a large financial burden, which is more intense when early intervention occurs (due to the therapy needed). Shu & Lung Autism Mental health did not (2005) significantly improve in the intervention group compared to those in the control group. Subjective well-being and employment status were found to have an effect on mothers' mental health. Only the subjective well-being had an effect on their quality of life. Siklos & Kerns ASD Families of both groups (2006) 39M reported a similar number 17 F of important needs and M = 8 important needs being years met. Mothers of children R = 3-18 years with autism reported less satisfaction with services and help received since the time of the diagnosis. Sivberg (2002) ASD Lower levels of coping 21 M were associated with 16 F higher levels of strain on the family system, and R = 1-26 years the level of strain on the family system was greater in the families with a child with ASD. Parents of children with ASD used more distancing and escape strategies whereas those in the control group use more problem-solving strategies. Smith & Perry N/A Results indicated that (2005) siblings' self-concepts and knowledge of autism. improved significantly from the beginning to the end of the sibling support group. Tarakeshwar & Autism Religious coping Pargament (2001) 36M accounted for better 9 F religious out comes and M = 10 years stress-related growth; R = 4-24 years negative religious coping was associated with increased depression and low religious outcome Thomas, Ellis, ASD Families used a broad McLaurin, 333 M array of services. Access Daniels, & 50 F to care was limited for Morrissey (2007) M = 7 years low-income families and R = 0-11 years racial/ethnic minorities, those living in nonmetropolitan areas, and those not following a major treatment approach; increased stress is associated with higher service use. Tobing & ASD Parenting competence and Glenwick 85 M satisfaction with social (2006) 11 F support were negatively M = 9 years related to maternal R = 2-18 years distress. Number of coping strategies and number of social supports were not found to be significantly related to maternal distress. Tomanik, Harris, ASD Mothers of children with & Hawkins 51 M ASD reported higher (2004) 9 F levels of stress when M = 5 years their children were more R = 2-7 years irritable, lethargic/socially withdrawn, hyperac- tive/noncompliant, unable to take care of themselves, and unable to communicate or interact with others. Tonge et al. Autism Results indicated that (2006) R = 2-5 years both a parent education and skills training program and a parent education counseling program for parents of young children with autism was of benefit to their mental health and well being. Trudgeon & Carr ASD Parents reported positive (2007) 8 M and negative impacts of 1 F the programs. Sources of R = 4-9 years support obtained through the programs offset the demands of the programs. Tunali & Power Autism Mothers of children with (2002) 22 M autism were more likely 7 F than mothers of typically M = developing children to years place less emphasis on R = 5-14 years career success, spent more leisure time with extended family, were less concerned about others' opinions of their child's behavior, emphasized spousal support and parental roles, had more difficulty under standing their child's behavior, and had a marginally higher tolerance for ambiguity. Twoy, Connolly, ASD Parents of children with & Novak (2007) < 12 years ASD were resilient in adapting to challenges of raising a child with ASD. Using a social support system was a large part of the family's coping strategies. The support included close friends, extended families, other families with the same situation, and agencies and programs. Verte, Roeyers, & ASD Siblings of children with Buysse (2003) 28 M HFA were not more 1 F susceptible to adaptation M = 11 years problems than siblings of R = 9-16 years children without disorders. Siblings between 6- and 11-years old had more internalizing and externalizing behavior P problems than siblings of typically developing children. Sisters of children with HFA, 12-16 years, had higher social competence and more positive self concept compared to the control group. Weiss (2002) Autism Mothers of children with R = 2-7 years autism experienced more negative effects of stress than mothers of children with mental retardation and mothers of typically developing children. Both social support and individual characteristics were found to aid effective coping and reduce negative effects of stress. Whitaker (2002) ASD Parents valued practical < 5 years strategies for facilitating language and engaging in interactive play. The most frequently expressed unmet need at the point of diagnosis was for information about ASD in general and local educational and support options available. Yamada et al. ASD Parents of children with (2007) 129 M ASD reported higher 29 F levels of stress compared R = 7-12 to normative data. The years personality trait of the parents, the children's behavior, and troubles with schoolmates were found to be the most closely associated with the parent emotional stress levels. Note. ASD = autism spectrum disorders; M = mean age; R = age range; M = male; F = female; ABA = applied behavior analysis; AS = Asperger's syndrome; HFA = high functioning autism; DS = Down syndrome; PDD = pervasive developmental disorder. (a) Does not include information (e.g., number, gender, age) of comparative groups (e.g., parents of typically developing children).
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|Author:||Meadan, Hedda; Halle, James W.; Ebata, Aaron T.|
|Date:||Sep 22, 2010|
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