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Families with children who have autism spectrum disorders: stress and support.

Autism spectrum disorders (ASD) refers to a wide variety of complex developmental disorders that typically appear during the first 3 years of life. The fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR; American psychiatric Association, APA, 2000) identifies ASD as part of a larger grouping, pervasive developmental disorders (PDD). According the DSM-IV-TR there are five subtypes of PDD: autistic disorder, Asperger's syndrome (AS), childhood disintegrative disorder (CDD), Rett's syndrome, and pervasive developmental disorder-not otherwise specified (PDD-NOS). The three core features of ASD are impairments in social interactions, impairments in verbal and nonverbal communication, and restricted and repetitive patterns of behavior (APA, 2000). ASD affects approximately 1 in every 110 children and is growing at a rate of 10% to 17% per year (Centers for Disease Control and Prevention, n.d.). This trend has roused a growing interest in the impact of autism on the family.

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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METHODS

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.

STRESSORS

MARITAL SUBSYSTEM

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.

PARENTAL SUBSYSTEM

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.

COPING STRATEGIES

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.

SUPPORT

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

LIMITATIONS

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.

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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.

HEDDA MEADAN

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: hmeadan@ilstu.edu).

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.
Publication:Exceptional Children
Article Type:Report
Geographic Code:1USA
Date:Sep 22, 2010
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