Introduction

Among the variety of developmental and physical disabilities that have been studied, certain of these have been known to affect families more (drastically) than others. Autism spectrum disorder (ASD) is such a disability. In the current Diagnostic and Statistical Manual of Mental Disorders (DSM-IV; American Psychiatric Association [APA], 2000), the term ASDs is used to describe five related neurodevelopmental disorders contained within the diagnostic classification of pervasive developmental disorders (PDD). That is, ASD is an umbrella term that refers to a range of disorders affecting multiple areas of development: social–emotional development, communication, sensory processing, cognition, and behavioral domains. The highly variable manifestations of autism can range from a nonverbal child with severe cognitive impairment and aggression or self-injurious behaviors to a college student with above-average intelligence and a successful academic and work record (Muhle, Trentacoste, & Rapin, 2004).

Because autism influences various areas of development, families of children with autism are faced with a unique set of stressors related to a variety of dysfunctions and behavioral characteristics, unlike families of children with other disabilities that face only one or two specific dysfunctions. In fact, the issues faced by families of children with autism remain constant even in those families who have children with high-functioning autism (HFA), where the degree of dysfunctions is mild (Roa & Beidel, 2009). In this chapter we describe the concept of family resilience as it relates to families of children with ASD by first presenting contemporary and lifecycle issues in these families, then describing the factors of resilience in families of children with ASD, and finally making recommendations for practice.

Significance of the Topic

There has been a dramatic increase in the number of children diagnosed within the ASDs during the last 2 decades. In 2007, the Center for Disease Control and Prevention (CDC) reported that the number of children who are diagnosed with ASD is approximately 1 in every 150 children (Center for Disease Control and Prevention, 2007). Other studies have reported this number to be from 1 in 125 to 1 in 91 children; this includes 1 in every 58 boys, which is four times higher than in girls (Baron-Cohen et al., 2009; Nicolas, Carpenter, King, Jenner, & Charles, 2009). The CDC has estimated that every year, approximately 26,670 children would be diagnosed with ASD (CDC, 2007). Compared to other disabilities, ASD is more common than Down syndrome (1 out of every 800 births), childhood cancer, diabetes, and AIDS combined (CDC).

In recent years, the media’s attention to autism and its causes has lead not only to an increase in public awareness about ASD, but to fueling a controversy that continues to be rekindled periodically. The controversy began with a study conducted in England and published in The Lancet in 1998, claiming a link between the MMR (measles, mumps, and rubella) vaccine and the onset of autism in 12 children (Wakefield et al., 1998). In the following years after the publication of this study, other studies followed that proposed either the vaccine itself or thimerosal, a mercury-based preservative and additive used in the vaccines, was the element responsible for causing autism in children (Gier & Gier, 2003; Goldman & Yazbak, 2004). These studies were later discredited for scientific inaccuracy, methodological flaw, and conflict of interest on the part of the investigators (Offit, 2008). In fact, in 2010, The Lancet issued a retraction of the original study from its records (The Editors of Lancet, 2010). Yet this controversy seems to continue to consume much energy on the part of the parents and other family members of children with ASD.

Because ASD has various degrees of severity, it has been difficult to pinpoint a single cause or a single treatment. Treatment options available for autism are numerous. An internet search for “autism treatment” yields over 2,200,000 results. These options vary from biomedical, pharmacological, and dietary intervention, to educational and therapeutic methods. Many of these treatment options give parents a hope for a “cure” and “recovery” from ASD.

Factors influencing parental decisions in choosing a treatment are complex and multidimensional. For example, severity of impairment and the age of the child are two factors that might influence ­parents’ decision. Another factor is the source of information. Parents are more likely to choose a treatment when other parents recommend it or testify to the treatment efficacy after having used it with their own child (Green, 2007). For example, a group of biomedical treatment options, such as a gluten- and casein-free diet, have gained popularity among parents because some celebrity parents and activists have testified to their efficacy in primetime TV or other media despite being considered “fads,” “alternative,” “pseudoscientific,” and “unsubstantiated” (Offit, 2008; Zane, Davis, & Rosswurm, 2008). The testimonials of these parents vary from drastic treatment effect to an actual “cure” and “recovery” from autism (Kirk, 2008; McCarthy, 2008). The majority of unsubstantiated treatments, such as dietary interventions, chelation, or Relationship Development Intervention (RDI®), are expensive and time consuming (Zane et al., 2008). In addition, some treatments, such as chelation, have been recognized as dangerous to the child (Mitka, 2008).

There are educational and therapeutic interventions as well as pharmacological and medical approaches. Though some of these treatments have an empirical basis, others have no scientific evidence to support them. Some interventions require parental commitment around-the-clock. For example, applied behavior analysis (ABA) is an educational intervention with strong empirical validity (Lovaas, 1987; Lovaas & Smith, 2003). However, for it to be effective, parents have to invest a considerable amount of time, energy, and financial resources. Lovaas’s (1987) study of a group of children with autism indicates that when ABA is implemented early in the child’s life for at least 40 hours per week, and when it involves parents carrying out therapy in the absence of the therapist, it may lead to an improvement of the child to a degree where a diagnosis of ASD might no longer be applicable. Other more recent treatment models, such as Floor Time™ or DRI (developmental, individual differences, relationship-based) models (Greenspan & Wieder, 1998, 2006), also require parents to carry out play-oriented therapy sessions with the child several times throughout the day. Although parents of children with autism seem to be tireless in their fight for cause and cure for autism, exhaustion, disappointment, and depression are common early on during the diagnosis and identification of treatment (Keenan, Dillenburger, Doherty, Byrne, & Gallagher, 2010).

Literature Review

Families of Children with ASD and Lifecycle Issues

Asperger syndrome and childhood disintegrative disorder are not usually identified until late childhood. Currently, two disorders, autism and PDD-NOS, can be assessed as early as 18–36 months (Maston & Sipes, 2010). However, traditionally, autism has not been diagnosed before the toddler years. Research is underway to identify specific markers that might be apparent earlier. Thus far, our understanding of early behavioral signs of autism is based on a series of home video studies conducted in the early and late 1990s, which showed that there were a number of symptoms of autism that distinguished infants with ASD from typically developing infants long before diagnosis (Adrien et al., 1991, 1993; Dawson, Hill, Spencer, Galpert, & Watson, 1990; Hobson & Lee, 1998; Osterling & Dawson, 1994; Wimpory, Hobson, Williams, & Nash, 2000). According to these studies, infants with ASD often display a variety of avoidant behaviors during their early development. These behaviors include an initial lack of eye contact and positive affect in face-to-face interaction with their caregivers during the first months of life, repeated failure to raise their arms to be lifted up, a lack of pointing and joint attention, and failing to greet parents and others or wave good-bye. Furthermore, these home videos showed that infants with ASD seem to lack any enjoyment in lap or interactive games, and early on begin showing atypical use of toys and objects, and stereotypical motor mannerisms, like hand-flapping (Hobson & Lee; Osterling, Dawson, & Munson, 2002; Wimpory et al.).

While atypical developmental patterns might be present in some infants from the beginning, in other infants there is a regressive pattern that usually occurs after a period of 1 or 2 years of typical development (Landa, Holman, & Garrett-Mayer, 2007). Furthermore, in another group of infants with ASD, it was concluded that the behavioral characteristics of autism may appear after 6 months of age (Kagan, 2008). In general, there is an assumption that the biology of autism is present in these children even when the behavior characteristics are not (Rogers, 2009).

Given a lack of interactive behaviors in infants with ASD, some parents of children with ASD, especially mothers, report a tremendous amount of stress as a result of a lack of reciprocal behaviors in their infants (Stehli, 1991). In addition, parents may experience exhaustion due to lack of sleep and rest because of the unusual patterns of sleep in infants with autism, who may sleep no more than 3–4 hours per night (Norton & Drew, 1994). A child with ASD usually has difficulties coping with changes and recognizing danger. This frequently creates major challenges for families when deciding whether to relocate or making career decisions.

About 90% of parents recognize something might be wrong in their children by about 24 months, when abnormalities in language become apparent (De Giacomo & Fombonne, 1998). Because autism is often diagnosed after this age, the experiences of the parents are different from those of parents whose children’s disability is apparent from birth. Parents of children with autism may gain validation of their sense that their child’s development was not typical, while conversely, the true implication of the disorder may not be apparent to them initially. It may take some time before the families come to terms with the reality of how the disorder may change their lives (Schuntermann, 2002).

On the other hand, because of the public’s increasing awareness of ASD, there is a possibility of a false-positive diagnosis of autism, where parents suspect their child has autism but the child may in fact have another disorder (Harrison Elder & D’Alessandro, 2009). Indeed, professionals have been reluctant to give an autism diagnosis before age 2, because during infancy and toddlerhood developmental delays look similar in characteristics, and sometimes it is difficult to distinguish general characteristics of one disorder, such as speech delay, from another disorder, such as autism. Therefore, it is important that expert consultation be sought early on to avoid confusion and misdiagnosis. Using specific screening instruments, trained professionals are able to detect a possibility of autism at around 14–18 months. For example, the Checklist for Autism in Toddlers (CHAT) is a screening instrument that uses parent report and observation of the child at 18 months, and presents a number of items that might suggest a possibility of autism in the infant (Baron-Cohen, Allen, & Gillberg, 1992; Baron-Cohen et al., 2000). The Modified Checklist for Autism in Toddlers (M-CHAT) (Robins, Fein, Barton, & Green, 2001) is the advanced version of this screener designed to be used with toddlers in the United States. Early intensive intervention has been found to be crucial for improving long-term outcome and moderating the severity of ASD (Eikeseth, 2009; National Research Council, 2001). Children with autism who are identified early are less likely to be mute and more likely to improve and to become independent in later years (Howlin, 2005).

After the diagnosis, a major task of the family includes securing appropriate education and therapeutic services, as well as establishing and maintaining relationships with service providers. On one hand, this requires a flexible family structure, demanding the understanding and cooperation of all family members to achieve a positive outcome. On the other hand, it requires the service provider’s ability to mobilize a family’s resources and establish a relationship with the family members based on collaboration and partnership. It is naïve to assume both of these qualities would be present in both the families and service providers. As a result, one of the common early issues for families of children with autism is specific stress and hardship related to navigating the intervention system to establish a treatment and educational program for their child. Thus, parents might experience a period of intense stress, which becomes more severe as they struggle to come to terms with the disorder itself while also attempting to secure appropriate services for their children (Marcus, Kunce, & Schopler, 1997).

During the child’s elementary school years, although struggles with school settings are typical, parents seem to experience a relatively good period (Bayat, 2005; Marcus et al., 1997). This may be due in part to the fact that needed services have been secured for the child and the parents have adjusted to the demands of the disorder, having established some stability in their daily routines (Bayat; Marcus et al.). The child may stay in the same elementary school or program for 5–7 years and have the same teacher for the majority of this time, furthering this sense of stability (Marcus & Schopler, 1987). Additionally, the child may show some improvements in sociability, emotional control, and attention span (McAdoo & DeMyer, 1977). For most families, this period is a time to build consistent routines and daily living skills. Typically, the child might show gains in such skills, and the family, who previously had been frustrated when teaching cognitive tasks to their child, may find this time gratifying (Bayat).

In spite of the early gains that may have been made, the adolescent years often prove to be particularly stressful. As the adolescent becomes physically larger, violence becomes a significant problem, especially in families that have children with aggressive behaviors. This makes parents and siblings especially vulnerable (Gray, 2002). In addition, parents face new challenges as a result of the child’s interaction of hormonal and physical changes. Manifestation of openly expressed aggressive behaviors and sexual awareness—which is exacerbated by dysfunctions in communication, social understanding, and cognition—is typical in adolescents with severe ASD (Marcus et al., 1997). At this time, families of children with severe ASD face issues such as the chronic nature of their children’s basic deficits, finding age appropriate services, dealing with the community, and facing the fact that the disability is life-long (Bayat, 2005).

Families of children with high functioning autism and those with Asperger syndrome are particularly concerned about the lack of friendship in their adolescents (Bayat, 2005). A period of depression and under-activity has been mentioned in adolescents and young adults with ASD, which might be a reaction to the adolescent’s unfulfilled need for friendships and peer relationships (Mesibov, 1983). In general, parental emotional exhaustion and emotional drain is typical during the child’s adolescence (Gray, 2002).

Adulthood also presents specific stressors and difficulties for families. At this time, the formal school years have come to an end and families often find themselves having to deal with an adult with no occupation and/or practical working skills (Gray, 2002). It becomes increasingly challenging for families to occupy the adult with ASD—especially in the case of those who are nonverbal or have intellectual disabilities—where, for many years, the child’s life routine has focused around going to school from the morning to the late afternoon. Securing appropriate services, including supervised living and working arrangements, are problems for which families struggle to find agreeable solutions during this phase—especially considering the decline of institutionalization and a lack of appropriate services in the United States and Canada (Bayat, 2005; Gray). Therefore, families of children with autism experience an intense stressful period when their children reach adulthood. One of the major issues at this time is the family’s concern about the future of the adult with autism in light of the growing age of the parents (Bayat; Gray).

Other Factors Affecting Familial Adjustment

In addition to the lifecycle issues described, families may deal with other stressors at different periods of time, such as unusually high levels of emotional distress, anxiety, depression, and anger (Gray, 2002). In a study conducted by Olson and Hwang (2001), depression was found to be more pronounced in mothers of children with ASD as compared with depression in mothers of children with intellectual disabilities. Mothers of children with ASD also had higher levels of depression compared with fathers of children with autism. For example, mothers of children with ASD tend to have moderate to serious limitations on their careers, since they are usually the ones who stay home and care for the child after diagnosis (Gray, 2002). Mothers are also more likely to report severe distress due to their increased involvement in child rearing and exposure to negative social reactions by outsiders (Bayat, 2005). In general, parents of children with autism tend to suffer depression more severely as compared to parents of children with other disabilities (Ryde-Brandt, 1990; Sanders & Morgan, 1997).

Social stigmatization, extreme psychological distress, and parental isolation resulting from outside reactions are issues of serious concern. Social isolation and rejection are more pronounced in parents of children with ASD who have aggressive and/or obsessive behaviors. However, the perception of stigma appears to vary with the sex of the parent (with mothers feeling more stigmatized), severity of autism, and age of the child (Gray, 2002). Although stigmatization usually worsens as the child gets older and physically larger (Gray), over time parents seem to care less about society’s perceptions regarding their child (Gray, 1993).

Another important issue in having a child with ASD is the financial cost to the families. Although there is no consistent body of research on the financial cost of having a child with ASD, available studies point to significantly higher costs of education, medical treatment, and supportive services as compared to having a child with another disability, such as Down syndrome or an intellectual disability (Jacobson, Mulick, & Green, 1998; Marcus, Rubin, & Rubin, 2000). Aside from the typical costs of medical treatment or education for children with autism, it is important to consider the broader economic picture in terms of loss of employment and income (which is sometimes the case for one or both of the parents in order to provide in-home therapy for the child), other out of pocket expenses, lost leisure time, and special care (Jarbrink, Fombonne, & Knapp, 2003).

Looking at the life processes in families of children with autism, studies consistently show that family members report higher levels of stress than do those families of children with other disabilities, such as Down syndrome, intellectual disabilities, cystic fibrosis, or other medical conditions (Bouma & Schweitzer, 1990; Kasari & Sigman, 1997). The manifestations of autism—atypical or lack of communicative behavior, social relatedness issues, cognitive delays, and atypical or aggressive behaviors, lack of supportive services, and prolonged dependency of the child—affect family members more severely as compared with other disabilities. In fact, it has been argued that autism should be regarded as a chronic illness, since the effects of autism on families are seen as almost identical to those of having a child with a serious and chronic medical illness (Gray, 1994).

Siblings of Children with Autism

Crocker (1997) was among the first to draw attention to the dilemma of the siblings of children with developmental disabilities, especially to the nature of their attachment and relationships with their parents, as well as to the nature of their inter-sibling relationship. The latter is especially important, since the quality of the inter-sibling relationship often contributes to the overall adaptation of the family. Particular issues of concern about the siblings of children with disabilities are parental preoccupation and siblings’ experience of neglect. These may contribute to siblings’ vulnerabilities (Lobato, Miller, Barbour, Hall, & Pezzullo, 1991).

Research on the effects of having a sibling with ASD has provided variable results (Schuntermann, 2007). Some studies point to the neurotypical siblings demonstrating emotional and behavioral problems, although these have been judged to be not severe, or not to reach clinical levels (Dunn, 1992). When comparing the social competence and self-confidence of siblings of children with autism with those of siblings of children with Down syndrome, brothers of children with autism, especially when the brothers are younger than the affected children, have been found to have more psychosocial and peer problems (Hastings, 2003). One study found that the degree of language impairment in the children with autism correlated negatively with their siblings’ adjustment, and that the severity of the degree of the disability in the child with autism was related to poor adjustment in the sibling (Pilowsky, Yirmiya, Dopplet, Gross-Tsur, & Shalev, 2004).

Bagenholm and Gillberg (1991) reported high levels of loneliness, problems with peers, attention difficulties, and conduct problems in siblings of children with ASD. In another study of 90 siblings, Kaminsky and Dewey (2001) assessed 30 siblings of children with autism matched with 30 siblings each of children with Down syndrome and typical children. They found that siblings reported reduced intimacy and less nurturance in families of children with autism compared to siblings in families of the other two groups.

In a later study, these authors found that the same findings were not duplicated once support services were provided for the family members (Kaminsky & Dewey, 2002). In this study the siblings were older than the child with the disability, and the majority of the siblings and their families attended support groups. These support groups provided realistic information about autism and Down syndrome, facilitated problem-solving activities, and enhanced social support.

Siblings may express concerns about their own physical or psychological wellbeing (Rolland, 1993; Schuntermann, 2009). They may not fully accept that one’s health and wellbeing at a young age may be taken for granted (Safer, 2002). Some siblings may worry about “catching” some of the problems of their siblings with disability (Safer; Schuntermann). Other siblings may feel called upon to “act normal,” perhaps as a result of perceived family expectations and self-appraisal (Schuntermann). Siblings of brothers or sisters with autism may be vulnerable to negative self-perceptions of their own social competence. For example, Schwartz (2003) found that the autistic child’s social skills offered significant predictive value in determining a sibling’s perception of his or her own social competence. In his study, the degrees of severity of autism and of parental stress were found to be vulnerability factors, whereas parental self-esteem and sibling self-esteem were seen as protective factors.

ASDs have strong genetic bases (Brent & Geschwind, 2009; Folstein & Rosen-Sheidley, 2001), and siblings are at a somewhat increased risk for subclinical characteristics known as the “broad phenotype.” These might include mind-reading difficulties, attention-deficit disorder, and language-based learning problems (Ben-Yizhak et al., 2010; Dorris, Espie, Knott, & Salt, 2004; Gamliel, Yirmiya, Jaff, Manor, & Sigman, 2009), and symptoms of anxiety and depression in adolescents (Orsmond & Seltzer, 2009). There may be an increased risk for siblings if these conditions go unnoticed at home or escape clinical attention (Schuntermann, 2009). Finally, adult siblings may strive to find ways toward realistic self-acceptance and adaptive solutions (Willey, 1999).

Current Issues

The Concept of Family Resilience and Families of Children with ASD

The emerging picture of the lifecycle of families of children with autism is one that is grim and filled with stressors and negative life-altering factors, as just reviewed. However, this view has shifted during the last decade, due to the research in the fields of social work and family therapy (cf. Walsh, 1996, 1998, 2003) focusing on family resilience, as well as contributions from the field of positive psychology (cf. Antonovsky, 1987; Seligman & Csikszentmihalyi, 2000), culminating with this decade being termed as the “age of resilience” (Ganong & Coleman, 2002). Today a disability such as ASD no longer carries one-dimensional, deficit-focused assumptions; it has instead been replaced by a fresh, multidimensional perspective of strengths and challenges. In fact, there are a number of interacting factors and resilience processes in these families that may help them function well and grow stronger despite their child’s autism.

Family resilience is considered a construct at the level of the family unit. As formulated by Walsh (2010), family resilience involves struggling with, and effectively working through and learning from adversity. Walsh (1998) articulated several key factors in family resilience, such as making meaning out of adversity, affirming strength and keeping a positive outlook, and having spirituality and a belief system. In advancing her family resilience model, Walsh (2010) has articulated resilience to mean more than the ability to bounce back from adversity unscathed. Rather, from her point of view, resilience “involves struggling well, effectively working through and learning from adversity, and integrating the experience into the fabric of individual and shared life passage” (Walsh, p. 149).

Family resilience is not merely a collection of “resiliences” held by individual family members (Hawley, 2000). Walsh (1996) believes that families take their own unique pathways to resilience. In her concept of “relational resilience,” she emphasizes family processes and the manner in which families link these processes to their unique challenges, both immediate and long-term. Walsh (2006) also points to family processes that mediate the impact of stress for all members and their relationships and can influence the course of many crisis events, such as having a child with autism in the family. Family resilience sets the focus on the family as a functional unit, the family’s interpersonal and developmental dynamics, their histories, and supra-ordinate values such as loyalty and responsibility.

Although studying resilience in families of children with ASD is relatively new, there is evidence both in research and in clinical practice that many families of children with ASD meet the criteria by which Walsh defines resilience, and possess key processing factors of and capabilities for resilience (Bayat, 2007; Schuntermann, 2009). In one of the first surveys on resilience in families of children with autism, Bayat (2007) found that about 40% of the families of children with autism described feeling stronger as a result of living with the affected child: they became less judgmental, more patient, and more compassionate. Bayat identified specific resilience processes, including the capacity to balance an appreciation of strengths against the developmental challenges (positive meaning-making) to grow closer as a family, to find greater appreciation of other people, and to gain spiritual strength through the process of living with an autistic child.

Understanding the process of meaning-making is central in promoting resilience in families of children with ASD. The role of perceptions and meaning-making in resilience is best understood by integrating family resilience and family stress theory (Patterson, 2002). Patterson (1988), in her Family Adjustment and Adaptation Response Model (FAAR), explains the process of coping and resilience in families of children with disabilities. According to this model, the process of meaning-making in the family is central to the family’s ability to successfully cope and adapt to the demands of the disability. In fact, the way the family member makes meaning out of the disability determines whether he or she is able to utilize the family’s resources (protective factors), arrange its structure, and ultimately balance—or fail to balance—the family’s resources against the demands and stressors (risks) of having a child with a disability. In some cases, the event is only experienced as stressful according to the meaning that one attributes to the event.

In the Bayat (2007) study of family resilience in autism, not only did parents of children with autism frequently make positive meaning about having a child with autism, but the process of meaning-making in these families often was intertwined with spirituality. Another study similarly found that parents considered having been chosen to parent a child with ASD had occurred by divine intervention (Levine, 2009).

Resilience and Siblings of Children with Autism

The findings in family resilience studies are consistent with research on the resilience of children who have lived through sustained hardships other than growing up with a brother or sister with a developmental disability. This literature identifies important individual attributes including good judgment, social competence, self-agency, and intelligence (Hauser, Allen, & Golden, 2006; Masten, 2001; Sroufe, Egeland, Carlson, & Collins, 2005; Werner & Smith, 1982). Family strengths supporting resilience generally are based on the qualities of relationships. Siblings grow up in their families amidst “relations of relationships” (Dunn, 2005). Sibling roles and relationships are intricately engaged within the fabric of their families (the family-systems perspective), indirectly through triadic interactions with their parents (differential parental treatment), and directly with the other siblings (inter-sibling relationships). In addition, there are the bidirectional influences with extended family members, and beyond the family, with friends, peers, and institutions in the community.

Empirical findings suggest that close family relationships, good boundaries (Wood, 2001), effective communication, and consistent, workable family rules (Dugan, 1989), communal behavior, friendliness, and helpfulness (Yunger, Corby, & Perry, 2005), along with the capacity to reach out for support from friends, teachers, or members in the extended family, are qualities that support coping and resilience in the child (Dugan, 1989; Hauser et al., 2006; Sroufe et al., 2005; Werner & Smith, 1982). Similar protective factors have been identified in longitudinal studies (Fergusson & Horwood, 2003; Werner & Smith, 1982). Nurturing parent–child relationships (Masten et al., 1999) as well as affectionate sibling relationships (Gass, Jenkins, & Dunn, 2007) and, potentially, grandparents, may serve as moderators of stress (Hayslip, Shore, & Henderson, 2000; Jenkins & Smith, 1990). On the other hand, children who are easier temperamentally elicit more positive reactions from those in their environment, a phenomenon referred to by Rutter and Taylor (2010) as evocative-gene environment correlation.

Social competence, a major area of research in resilience, includes children’s abilities to develop positive relationships, to effectively coordinate and communicate actions and feelings in relation with others, to construct and communicate shared meaning through language and play, and to be increasingly able to control and to adjust their emotions (Fabes, Gaertner, & Popp, 2006, p. 297).

Self-regulation in the presence of hardship is strongly associated with outcome measures in the areas of mental health, behavior, academic achievement, and social competence (Buckner, Mezzacappa, & Beardslee, 2009). Positive peer relationships and good friendships are seen as protective factors in resilience research. They enhance self-worth and coping skills, and possibly diminish psychosocial risk and vulnerability (O’Dougherty, Wright, & Masten, 2005).

Friendships may provide compensatory psychosocial and adaptive support for siblings of children who are on the spectrum. On the other hand, the siblings’ friendships also may be risk-enhancing since school-age children—away from home and with friends—are more exposed to events arising from their school and neighborhood, especially as the children age and then engage in more unsupervised activities (O’Dougherty et al., 2005).

Clinical and Research Implications

A Resilience-Based Approach to Intervention for Families of Children with ASD

An overarching goal in working with families that have a child with autism—as Werner’s (2005) explanation might be applied—is to shift the balance between vulnerability and resilience. Innovative strategies—both for research and for interventions—will spring from a systems level approach that aims for the simultaneous assessment of multiple domains of variables both within and outside the developing person (Cicchetti & Curtis, 2007). Such information is central to the goal of designing preventive interventions with strategic timing and targeting by clinicians, communities such as schools and other agencies, and by policy makers (Masten & Cicchitti, 2010; Rutter, 2009).

With a view to capturing these multilevel dynamics, Luthar, Sawyer, and Brown (2006) proposed guidelines for the selection of risk and protective processes in future research on resilience. This model focuses on the family as a unit, such as the family’s life context (e.g., societal prejudices, service provision for the child’s behavior problems), risk modifiers that are amenable to change through external interventions, and areas that tend to be relatively enduring in the life situation. Luthar and colleagues emphasized that critical attention needs to be given to indices that generate other assets. These are factors that set into motion “cascades,” wherein they catalyze other protective processes. For example, when a child’s behavior problems improve, there will be less negative impact on the family, which results in increased positive family interactions and activities. Cascades, or developmental cascades, refer to an ingenious paradigm in resilience research that conceptualizes the functionality of protective and risk factors over time.

Masten and Cicchitti (2010) recently elaborated developmental cascades as the cumulative consequences for the development of many interactions and transactions occurring in developing systems. These result in spreading effects across levels, among domains at the same level, and across different systems or generations. Thus, the consequences of the developmental cascades alter the course of development. Developmental cascades may be positive or negative in their consequences with respect to adaptive behavior. Negative cascading may result when a child has a disability or a chronic condition. For example, as was reviewed in an earlier section, cascading may originate with the compromised functioning of a child with autism to far-reaching consequences for the entire family, the extended family, and the availability of resources in the community.

More importantly, however, positive cascading also occurs. Ecological resources associated with parenting are linked to individual self-regulatory behaviors (Lewin-Biza, Bowers, & Lerner, 2010). For example, competence may lead “upward” to further competencies, where “one good thing leads to another.” Bidirectional cascading also may begin at the level of overall family functioning “downward” to the level of adaptation of children over time.

Yunger et al. (2005) described self-regulatory and proactive behaviors, such as assertiveness, leadership, curiosity, and pursuit of special skills as agentic behaviors. Therefore, a parental agentic behavior, such as exercising problem solving skills, supports the functioning level of the child with autism and other siblings in the family. Thus, innovative prevention and intervention programs designed for the family should aim to set in motion cascades that will enhance factors of resilience in the family.

A cascading intervention program aiming to promote resilience in families of children with ASD should be designed at multiple levels and consist of several components in order to address the various factors influencing the lifecycle of these families. An emphasis on implementation of each component depends on the severity of the child’s disorder, the time in the lifecycle of the family, the structure of the family, and the need for support of one member as opposed to the other. Siblings of children with ASD and their capacity for resilience merits special attention and intervention in this regard.

An Intervention Model for Siblings

Levels of developmental cascades as they relate to the family may be envisioned beginning with neurotypical siblings of the child with autism and their levels of adaptive functioning. Intervention models currently emerging are focusing on the population of at-risk children, and have yet to be formulated for siblings of children with developmental disabilities and their families. Most models aim at several levels of the cascades. These evidence-based preventive intervention programs for at-risk children and adolescents are strength-based programs that emphasize capacity building (Beardslee, Ayoub, Avery, Watts, & O’Carroll, 2010; Maton, Schellenback, Leadbeater, & Solarz, 2004). For example, the Beardslee Preventive Intervention Program (Beardslee, 2003; Beardslee, Wright, Gladstone, & Forbes, 2007) is a manual-based intervention involving parents and children with long-term preventive effects for children at risk for depression. This program has been adapted to include preschoolers and their families in a Head Start Center in Boston (Beardslee et al., 2010), children of low-income Latino families (D’Angelo et al., 2009), and as a multilevel public health intervention for children displaced by war in Uganda (Betancourt, Speelman, Onyango, & Bolton, 2009).

Strategies of intervening at multiple systemic levels for proactive and preventive interventions are similarly promising for families who have a child with ASD and their siblings. Schuntermann (2009) developed guidelines for a clinical model of preventive intervention for siblings based on time-­limited, focused conversations utilizing a semi-structured interviewing technique. This intervention can be implemented in individual sessions combined with family sessions or in sibling groups with collateral parent groups.

The Schuntermann (2009) model addresses the family system and its subsystems: inter-sibling relationships, parent–child relationships, differential parental treatment, and possible involvement of grandparents. In addition, going beyond the family context, other factors such as school adjustment and peer relationships and recreational activities also are addressed. During a discussion session, siblings talk about their own self-perceptions and possible concerns about their own life stages into adulthood (especially in adolescence). Goals for these sessions include supporting siblings’ overall relatedness to the affected children, enabling siblings to overcome difficulties of being entrenched in negative interactions, and generally enhancing siblings’ capacities for taking a reflective stance.

In this model, there is an orientation toward problem solving, the effective and modulated expression of feelings, self-regulation, and practicing social sensitivities such as empathic listening and being accepting of the feelings of others. Family support and support found in friendships and peer relationships are also discussed. The framework for these discussions was adapted from Allen, Fonagy, and Bateman (2008), with their format of mentalizing interventions with adults, and from Bateman and Fonagy (2006), with the paradigm of mentalization as an ongoing developmental process of understanding oneself and others.

Recommendations for Practice: A Multilevel Program for Parents of Children with ASD

An intervention program for parents of children with ASD should take into account the severity of autism, the functioning level, the age of the child, and the timing of the intervention during the family’s lifecycle. In other words, a family’s needs and resources might vary at different points in time, for example during diagnosis vs. later in life.

During the diagnosis process, a major need for the family is the identification of an appropriate treatment and related services for their child with ASD. As was mentioned, parents of children with ASD are likely to be influenced by the experiences of other parents (Green, 2007). Indeed, expanding the family’s network of friendship with other parents and siblings in similar situations has been found to be an important source of support and empowerment for these families (Taunt & Hastings, 2002).

Accordingly, one important component of a comprehensive support program aiming at promoting resilience for parents of children with ASD is parent-to-parent information-sharing groups. Such groups could help families of children with ASD take on an appropriate level of advocacy and activism as they see fit (Ryan & Runswick, 2009). In this component of the program, the professional roles should consist of consultation on evidence-based treatments available. In addition, professionals should be able to locate and provide information to address various family questions about the disorder itself, public and private educational services, and other issues that might arise after the diagnosis (Harrison Elder & D’Alessandro, 2009).

Some family members of children with ASD deal with depression and psychological distress (Bouma & Schweitzer, 1990; Norton & Drew, 1994; Olson & Hwang, 2001). Although focusing on strengths is central to a resilience-based approach, reducing risk is also important. Therefore, an intervention and support program for parents should include addressing depression and other psychological distress in family members through referral or direct intervention if possible.

Depending on the severity of ASD in the child (e.g., presence of aggression, level of language, cognitive development), any cascading program also should include a behavior support plan for the child at home. Positive behavior support (PBS) is an intervention framework that provides behavioral methods for supporting children and adults with disabilities to reduce inappropriate and aggressive behaviors, to achieve educational outcomes, and to have a better quality of life with their families (Ruef, Poston, & Humphrey, 2004). Providing PBS for the child at home to improve social behaviors and reduce inappropriate behaviors could help families manage their daily life in order to lessen stressors that might be related to a specific behavioral characteristic of autism.

Since the process of meaning-making is central in promoting resilience in parents, providing professional support to guide the family members to form their own narratives about their experiences is one of the most important aspects of support. Similar to Schunterman’s (2009) model described for siblings, discussion and interview sessions with parents should aim at helping them explore the meaning of having a child with autism. Such sessions could be conducted at various times and over certain periods with the family, since meanings are dynamic, have multiple levels, and shift over time (Levine, 2009; Patterson, 2002). For example, in the first level parents might make meaning about autism as a disorder and what it might mean for the child and the family. In the second level, parents might construct meaning about their identity as a family. At this time, parents of a child with ASD might decide on family members’ roles, specifically in relationship with the child’s treatment and new demands. Finally, parents may construct meaning about their view of the world. Helping parents make specific and global meaning about having a child with autism may help them cope with the situation, promote resilience, and ultimately cascade successful family functioning.

Finally, since spirituality and meaning-making often are entwined, professionals should be respectful of the family’s articulation of their belief system. Spirituality is a key family dimension that promotes family adaptation as a unit, and might buffer the family during a crisis (Walsh, 2003). Therefore, when applicable, spirituality is one aspect of resilience that could be capitalized on to help foster the family’s resilience. Acknowledgement of and respect for the family’s belief system is one way of utilizing this resource. Families also could be encouraged to use their spirituality as an already present resource to draw upon (Greeff & Loubser, 2008).

Conclusion

In this chapter we have analyzed the contemporary and lifecycle issues faced by the family members, including siblings, of children with ASD. We also have presented a rationale for a multilevel intervention program that aims at promoting resilience in all family members. This program focuses on supporting positive family processes, and strategies are designed to enhance the resilience of families and their individual members by augmenting family-protective factors. The multilevel cascading intervention program includes an intervention model for sibling groups. The sibling model targets and seeks to develop important individual-protective factors in children and youth as identified in resilience research, which thereby secondarily enhances family resilience. Other components of the program aim at providing support for parents, through the provision of research-based information, mental health referral and intervention, positive behavioral support for the child with ASD, and parent–professional interview sessions—in which parents are encouraged to make meaning about having a child with ASD.