Families of Children with Autism Spectrum Disorders: Intervention and Family Supports




© Springer Science+Business Media New York 2014
Jonathan Tarbox, Dennis R. Dixon, Peter Sturmey and Johnny L. Matson (eds.)Handbook of Early Intervention for Autism Spectrum DisordersAutism and Child Psychopathology Series10.1007/978-1-4939-0401-3_24


24. Families of Children with Autism Spectrum Disorders: Intervention and Family Supports



Wendy Machalicek , Robert Didden , Russell Lang , Vanessa Green , Jenna Lequia , Jeff Sigafoos , Giulio Lancioni  and Mark F. O’Reilly 


(1)
University of Oregon, Eugene, USA

(2)
Radboud University Nijmegen, Nijmegen, Netherlands

(3)
Texas State University, Texas, USA

(4)
Victoria University of Wellington, Wellington, New Zealand

(5)
University of Wisconsin-Madison, Madison, USA

(6)
University of Bari, Bari, Italy

(7)
The University of Texas at Austin, Austin, USA

 



 

Wendy Machalicek (Corresponding author)



 

Robert Didden



 

Russell Lang



 

Vanessa Green



 

Jenna Lequia



 

Jeff Sigafoos



 

Giulio Lancioni



 

Mark F. O’Reilly


Parent involvementFamily supportsSiblings


Autism spectrum disorders (ASD) are characterized by communication and social impairments, and restricted and repetitive behaviors and interests (American Psychiatric Association 2000; Diagnostic and Statistical Manual of Mental Disorders). Children with autism also often engage in challenging behaviors such as tantrumming, elopement (e.g., leaving a designated area without adult supervision), aggression, and self-injury (Baghdadli et al. 2003; Conroy et al. 2005; Horner et al. 2002). These core deficits represent a significant disability affecting child development, but also present unique and persistent challenges to the child’s parents and other family members.

Without intervention, the core deficits of ASD tend to persist over time and can negatively affect a child’s educational and social outcomes (National Research Council 2001). Moreover, child-specific characteristics such as delayed communication (Moes 1995), social skills deficits (Baker-Ericzén et al. 2005), challenging behaviors (Baker et al. 2002), and diagnostic severity (Tobing and Glenwick 2002) have been associated with increased parent stress. Challenging behaviors especially are predictive of worsened parent outcomes (Bernhiemer et al. 1990; Lecavalier et al. 2006; Lucyshyn et al. 2004; Seltzer et al. 2001a), impaired sibling relationships (Greenberg et al. 1999; Orsmond et al 2009), and later adjustment difficulties (Hastings 2007). Early intensive behavioral intervention (EIBI) may be effective in reducing the impact of the disorder on child and family functioning (Harris and Handleman 2000; Howlin et al. 2009; Lovaas 1987, 1993, 1996; McEachin et al. 1993; Smith et al. 2000a; Weiss 1999) and may indirectly decrease parent stress through improved adaptive behaviors (Smith et al. 2000b). However, the pervasiveness of ASD often necessitates intensive and prolonged intervention that requires effortful identification and coordination of a family’s resources and a parent’s consistent involvement in their child’s education (e.g., Sallows and Graupner 2005).

Parenting a young child can at times be incredibly positive, stressful, and overwhelming (Crnic and Greenberg 1990). Certainly parents of children with autism experience the typical highs and lows, joys and struggles facing all parents and a growing body of longitudinal research suggests that the negative effects of raising a child with a developmental disability may not be as commonplace or serious as previously thought (Seltzer et al. 2001b; Glidden and Jobe 2006; Singer 2006). Nevertheless, parents of children with developmental disabilities such as ASD often experience heightened levels of stress (Hastings and Beck 2004; Keenan et al. 2010; Koegel et al. 1992; Schieve et al. 2007). Mothers and fathers of children with ASD have reported more stress than parents of children with other developmental disabilities, children with special health care needs, and children without special needs (Keenan et al. 2010; Schieve et al. 2007). Although some researchers have found similar levels of stress for both mothers and fathers of children with autism (Hastings 2003; Noh et al. 1989), mothers especially may be affected by caregiving responsibilities, experiencing more stress, anxiety, and depression than fathers (Meadan et al. 2010; Moes et al. 1992). Typically developing siblings may also be affected by having a sibling with autism in unpredictable ways, both positive and negative (Stoneman 2005). Although the majority of past research has focused on mothers of children with ASD, we know comparatively little about the potential positive and negative outcomes for siblings who have a brother or sister with an ASD (Stoneman 2005; Yirmiya et al. 2001).

As with all families, the quality of the sibling relationship varies across families of children with ASD (Orsmond and Seltzer 2007; Sage and Jegatheesan 2010). However, sibling relationships in families of children with an ASD may differ in important ways from the relationships of typically developing siblings, or siblings of brothers or sisters with another developmental disability, such as Down syndrome (Fisman et al. 1996; Wolf et al. 1998). Siblings of children with disabilities and special health care needs often take on caregiving and educational roles (Benderix and Sivberg 2007), may receive less parent attention (McKeever 1983), and may participate infrequently in community activities (Dyson 1989). Siblings of children with ASD may also experience feelings of neglect and overwhelming responsibility (e.g., McHale et al. 1986), and may encounter challenging behavior such as aggression during attempted interactions with their brother or sister (e.g., Ross and Cuskelly 2006). These factors influence the sibling-family relationship over time (Lobato et al. 1988). This influence, however, is not always negative and typically developing siblings may be well adjusted (Taunt and Hastings 2002), experience less sibling rivalry than usual, and benefit from a more cohesive family (Kaminsky and Dewey 2001). Additionally, a sibling’s prosocial overtures toward their brother or sister with an ASD provide models of age-appropriate social skills (Knott et al. 2007) and their involvement in intervention (e.g., Strain and Danko 1995) may directly contribute to positive outcomes for their sibling with ASD and indirectly improve their family’s overall quality of life.

A number of recent reviews have summarized studies evaluating the aforementioned issues relevant to parent and sibling implemented intervention and family supports (e.g., Brookman-Frazee et al. 2006; Friend et al. 2009; Kim and Horn 2010; Lang et al. 2009; Matson et al. 2009; McConachie and Diggle 2007; Peters-Scheffer et al., in press; Schultz et al. 2011; Singer et al. 2007; Warren et al. 2011). Behavioral skills training for parents has effectively addressed child-specific behavior, such as functional communication (e.g., Koegel et al. 1996), and decreasing challenging behavior while teaching skills that have been demonstrated to result in decreased parent stress (e.g., Feldman and Werner 2002; Koegel et al. 1996; Schreibman et al. 1991) and depression (e.g., Bristol et al. 1988). Similarly, siblings have implemented evidence-based interventions with their sibling with autism (e.g., Reagon et al. 2006; Strain and Danko 1995; Swenson-Pierce et al. 1987; Tsao and Odom 2006), and have also benefitted from participating in support groups such as Sibshops (Meyer and Vadasy 1994). Additionally, families often use informal and formal family support services (e.g., respite, parent to parent support groups; Chan and Sigafoos 2001; Santelli et al. 2002) and have benefitted from interventions directly targeting parent stress (Hastings and Beck 2004). However, we are unaware of any review that summarizes extant literature for all of these essential issues.

The purpose of this chapter is to review peer-reviewed studies evaluating (a) parent involvement in EIBI; (b) interventions to improve parent skills in an effort to improve a range of child behaviors (e.g., communication and social skills, challenging behavior); (c) typically developing siblings as interventionists; (d) family support practices; and (e) interventions to decrease parent stress. The main purpose of such a review is to summarize extant literature for practitioners and researchers, to identify gaps in the literature, and to provide recommendations for future research and practice. The remainder of this chapter is organized into findings, and concluding remarks and future research. In the findings section, within each topical area, we provide an overview of the issue, summarize the research, and discuss trends and issues in the literature. The concluding remarks and future research section provides an overall discussion of findings and provides suggestions for future research.


Findings



Parent Involvement in Early Intensive Behavioral Intervention


A growing number of alternative therapies claim positive outcomes for children with ASD (Schreibman 2005; Schreck and Miller 2010; Smith and Antolovich 2000), but applied behavior analytic interventions have the most empirical evidence of effectiveness for treating ASD and at this time are the only evidence-based interventions (National Research Council 2001; Schreibman 2000; Sherer and Schreibman 2005). Therefore, best practices for treatment following diagnosis include EIBI, or comprehensive applied behavior analytic intervention delivered to children 5 years old and younger (see Peters-Scheffer et al. 2011 for a review of comprehensive EIBI programs). Unlike focused interventions, which are implemented for a limited period of time to improve specific targeted behaviors (Hall 2009; Machalicek et al. 2007, 2008), comprehensive applied behavior analysis (ABA) models of intervention center around intensive intervention (typically 20–40 h each week for 2 or more years). Intervention consists of carefully structured, massed teaching trials or discrete trial training (DTT; Leaf and McEachin 1999; Lovaas 1981) and/or naturalistic ABA intervention approaches including incidental teaching (e.g., Hart and Risley 1975), pivotal response training (PRT; e.g., Koegel et al. 1987, 1989) ; and enhanced milieu teaching (e.g., Kaiser et al. 2000; Kaiser and Hester 1994). Communication and social skills, play, self-help and independent living skills, challenging behavior, cognition and preacademic skills are often targeted with consideration of typical child development (Leaf and McEachin 1999; Vismara and Rogers 2010). Additionally, some EIBI programs first teach foundational or readiness skills such as joint attention, compliance, attending/orienting to stimuli, choice making, and imitation (e.g., Frea and McNerney 2008). Currently, EIBI models that are procedurally well described, have been replicated, and have some evidence of efficacy include or are associated with: (a) the Denver Model, (b) Learning Experiences: An Alternative Program for Preschoolers and Parents (LEAP), (c) the Lovass Insititute, (d) May Institute, and (e) the Princeton Child Development Institute (see Odom et al. 2010 for a review of comprehensive EIBI models). Across each of these models, well-prepared clinicians supervise program development and delivery and rely on significant parent involvement. Although researchers continue to debate the number of required hours and methodology of intervention, and the targeted skills and curriculum, there is general consensus that intensity of the program contributes significantly to positive child development, (Eldevik et al. 2006) as does parent participation (Sallows and Graupner 2005). Empirical evaluations of the effectiveness of EIBI programs have included both clinic-based (Ben-Itzchak and Zachor 2007; Eikeseth et al. 2000; Fenske et al. 1985; Harris et al. 1991) and home-based programs (Anderson et al. 1987; Birnbrauer and Leach 1993; Eikeseth et al. 2002; Howard et al. 2005; Lovaas 1987; McEachin et al. 1993; Sheinkopf and Siegel 1998). Although center-based programs encourage and often require some level of parent participation, for logistical reasons, parents are generally more actively involved in home-based programs.

There are a number of benefits of involving parents in EIBI. As the primary caregivers, parents can improve the quantity and quality of intervention, their involvement can improve the generalization of positive educational outcomes to home and community settings, and their participation may decrease stress and improve coping strategies. Moreover, active collaboration with parents in assessment and the selection of goals and objectives, intervention procedures, and outcomes aligns with family-centered practices in early intervention (Dunst et al. 1994) and may improve the contextual fit of interventions and contribute to improved treatment adherence (Hieneman and Dunlap 2001). This section reviews intervention studies involving parents as part of an EIBI program.


Summary of the Research


Parents have been involved in many aspects of EIBI programs including identifying intervention goals, managing their child’s program(e.g., hiring and training therapists), and participating in parent education programs aimed at teaching basic ABA principles and their application to their child’s daily routines. The outcomes of parent-directed EIBI programs for children with ASD and their parents have varied with mixed results reported in the literature. The research can be grouped into child outcomes following parent-directed EIBI and parent outcomes following parent-directed EIBI.


Child Outcomes


Parent-directed EIBI programs may result in outcomes similar to clinic-based EIBI programs (Sallows and Graupner 2005). Sallows and Graupner’s experimental group design study compared the outcomes of a clinic-directed program and a parent-directed program for 24 children with autism, who were assigned to the two groups through a matched random process. Children in the clinic-based group received an average of 38 h of intervention a week and the parent-directed group received 31.5 h of intervention a week (one child received 14 h a week) with less frequent professional supervision. Somewhat surprisingly, children in both groups showed similar, positive improvements in adaptive behaviors, language, social skills, academics, and IQ. Sallows and Graupner suggested that the positive results might be explained by parents’ motivation and willingness to ensure high quality intervention (e.g., filling cancelled therapist shifts themselves, arranging play dates, taking on the senior therapist role).

However, a larger number of researchers have reported less than optimal progress when parents, rather than experienced behavior analysts manage the child’s EIBI program (Bibby et al. 2002; Smith et al. 2000b; Smith et al. 2000c). Bibby et al. (2002) evaluated the effects of parent-initiated approximations to the UCLA workshop model (Lovaas 1996) that included significant parent participation on the developmental outcomes of 66 children with ASD using an accelerated multicohort longitudinal design (Kazdin 1998). Participating children began EIBI at a mean age of 45 months, and at the time of the first assessments in this study, the majority of the children were in their second year of intervention. Children received a mean of 30.3 h of therapy each week with parents managing aspects of their child’s therapy, but the extent to which paid therapists and parents directed and/or implemented intervention was unknown. Standardized assessments, parent interview, and direct observations of the child in their family home were conducted twice, approximately 12 months apart. Adaptive behavior gains were identified in 33 % of children and 27 % experienced significant IQ gains. However, among the findings of this study was that none of the 42 children that were at least 72 months of age and had received 2 or more years of intervention had outcomes meeting Lovaas’s (1987) criteria for “best outcome.” Bibby et al. (2002) suggested that pretreatment variations in participating children, or the quantity and quality of received intervention might have contributed to these outcomes. There is growing evidence to support an explanation of differential responding to intervention due to individual child characteristics (Ben-Itzchak and Zachor 2007; Howlin et al. 2009; Sherer and Schreibman 2005). Additionally, variation in EIBI program implementation (e.g., quality and frequency of supervision) is common (Love et al. 2009).


Parent Outcomes


Although parents have long been involved in or directed their child’s EIBI program, we know little about the impact of participating in EIBI programs on family functioning (Grindle et al. 2009; Howlin et al. 2009). The findings of recent studies examining the effects of mothers’ participation in EIBI suggest that many parents will desire some level of participation in EIBI, find EIBI beneficial (Boyd and Corley 2001; Dillenburger et al. 2004; Grindle et al. 2009), and are unlikely to suffer serious negative consequences from participating (Birnbrauer and Leach 1993; Hastings and Johnson 2001; Smith et al. 2000b). These findings do not discount the stress of daily experiences that families participating in EIBI encounter, such as the potential loss of privacy due to therapists regularly entering their home; and difficulties obtaining funding, managing therapists, and administering the program (e.g., Cattell-Gordon and Cattell-Gordon 1998; Grindle et al. 2009). However, for many families, the stress of participating in EIBI may not be more than the day-to-day stress they experience as a parent of a child with an ASD. For instance, Hastings and Johnson (2001) found that mothers participating in EIBI reported similar amounts of stress to mothers of children with autism who were participating in other research studies.


Trends and Issues


Parent involvement in EIBI is naturally aligned with early intervention philosophies and family-centered practices. Additionally, mothers and fathers may indirectly benefit from their child’s improved behaviors (e.g., communication, play, and social skills) and directly benefit from increased knowledge about ABA , and increased social support and respite (Grindle et al. 2009). Moreover, parents may not experience higher levels of stress when participating in their child’s EIBI program. However, there are several issues that should be further examined.

Research evaluating parent and clinic-managed EIBI programs suggests that parent-managed EIBI, while resulting in positive child outcomes in adaptive behaviors, IQ, and language (Bibby et al. 2002; Smith et al. 2000b; Smith et al. 2000c), may not result in outcomes as promising as those obtained in clinic-managed EIBI programs (e.g., Harris and Handleman 2000; Harris et al. 1991; Lovaas 1987). These differential results may be partly explained by the fewer weekly hours of intervention received by children in parent-managed programs (Smith et al. 2000b). Smith et al. (2000b) reported that children, on average, received a mean of 30.3 h each week; that is almost 10 fewer hours of one-to-one intervention each week when compared to Lovaas (1987). Future research evaluating parent-managed and/or implemented programs should evaluate methods to increase the quantity and quality of one-to-one intervention in the child’s home. Additionally, clinic-based EIBI programs might improve family outcomes by systematically including and evaluating beneficial aspects of parent-directed programs, such as parent education, family choice of targeted objectives and therapists, and family supports such as respite care.

Practitioners and researchers have long suggested that one way to increase the amount and quality of intervention received by a child with autism is to prepare the parents to deliver the intervention (Schopler and Reichler 1971). However, the creation and management of an effective, long-term EIBI program requires sufficient time, resources, and the involvement of trained, experienced professionals such as board certified behavior analysts (BCBA). When parents are in charge of managing their child’s EIBI program and have received insufficient support from professionals or are unable to regularly achieve weekly therapy hours, their child’s outcomes may be less positive than expected. Parents will likely benefit from increased access to consultancy to maintain necessary levels of treatment fidelity to ensure child progress and technical assistance to identify, hire, train, and supervise in-home therapists. The quality of an EIBI program is largely based upon the quality of the delivered intervention and practitioners should anticipate that many parents will approach EIBI lacking some or all of the skills needed to adequately manage their child’s program.

In summary, parents can and often do play an essential role in the management and delivery of EIBI, but family members participating in EIBI will benefit from ongoing support from behavior analysts and other professionals (e.g., speech and language therapists, physical therapists, special educators, and mental health specialists) on their child’s treatment team, as well as parent education and supports focused on skill acquisition and stress reduction.


Behavioral Skills Training


Parents often have an active role in guiding the education and social-emotional development of their children (e.g., Hart and Risley 1995; Kaminski et al. 2008). Research has demonstrated that parents of children with autism can be taught to accurately deliver interventions designed to improve their children’s communication (e.g., Vismara and Rogers 2008), social skills (e.g., Mahoney and Perales 2003), and challenging behavior (e.g., Moes and Frea 2002). Parent-implemented interventions have ranged in complexity from simple single-component interventions (e.g., differential reinforcement) to complex multi-component intervention packages (e.g., DTT; Lafasakis and Sturmey 2007). A considerable amount of research has focused on identifying procedures that can be used to teach parents to accurately implement behavioral interventions to their children with autism. This section presents a selective review of studies involving behavioral skills training for parents of children with ASD.


Summary of the Research


Across the body of research involving parent-implemented interventions, a variety of different training procedures have been used (Lang et al. 2009; Matson et al. 2009; Meadan et al. 2009). The two most common training procedures are verbal and written instructions (Lang et al. 2009). Verbal instructions involves providing parents: (a) an explanation of the intervention’s mechanism of action (i.e., why the intervention is likely to be effective), (b) a detailed description of specific intervention procedures, and (c) question-and-answer-based discussions. For example, R. L. Koegel et al. (2002) and Symon (2005) used trained therapists to deliver verbal instructions to parents on how to implement PRT. While verbal instructions were provided, parents and therapist observed the children together, discussed the goals of the intervention, built rapport, and reviewed the intervention procedures.

Written instructions are often provided to supplement verbal instructions (Schultz et al. 2011). Written instructions can range from simple one-page formats used during intervention to prompt specific intervention procedures to more extensive published treatment manuals that provide details on intervention components and implementation (Schultz et al. 2011). Stiebel (1999) provided parents with a manual that included a template designed to guide parents through a decision-making process involving the Picture Exchange Communication System (PECS) . Specifically, the template was designed to help parents identify communication breakdowns and use PECS to address those breakdowns. The parents then used the written instructions to successfully implement PECS to three children with autism, 4–6 years of age, in their homes.

Role-play is a parent training strategy that involves the parent implementing the intervention with the trainer (or other person) pretending to be the child. Role-play allows the parent to practice the intervention procedures without the complexity of the child with autism being involved. For example, R. L. Koegel et al. (2002) taught four fathers, five mothers, and one grandmother to implement PRT with five children with autism (each child had two participating parents) using a multi-component parent training approach that included role-play. The parents took turns pretending to be the child and implementing PRT while receiving feedback and coaching from the trainers. The children’s expressive verbal communication improved as a result of the intervention and the parents’ ability to implement PRT was maintained at 3 and 12 months.

Modeling is a parent training procedure that involves the trainer demonstrating how the intervention should be implemented. Hames and Rollings (2009) implemented a group-based parent training program that involved video-modeling designed to improve parents’ ability to interact with their children who had intellectual and developmental disabilities and engaged in challenging behavior. A questionnaire sent to the parents that attended the group training sessions over an 8-year period identified that 64 % of the parents believed the training had led to improvements in their children’s challenging behavior.

Another common parent training approach is performance feedback from the trainer. Performance feedback involves the trainer observing the parent implementing intervention and then providing reinforcement for correctly implemented procedures or verbal instructions contingent upon errors in implementation. Feedback can be provided in real time or during review of video recordings of the parent implementing intervention (Lang et al. 2009). For example, Vismara and Rogers (2008) videotaped a parent implementing the Early Start Denver Model (ESDM) intervention to a 9-month-old infant suspected of having autism. As part of a multicomponent parent training approach, the researchers watched the video with the parent and provided feedback. Results of this case study demonstrated that the parent was able to accurately implement ESDM and, ultimately, reduce the child’s severity of autism symptoms.

The majority of studies that involve teaching parents to implement complex multicomponent interventions (e.g., DTT and PRT) have involved a combination of the above teaching procedures, and it is not uncommon for a study to utilize all of the above approaches (Lang et al. 2009). For example, Kaiser et al. (2000) taught parents to implement EMT using verbal instructions, role play, and review of videotaped sessions with feedback. This combination of parent training procedures resulted in parents learning to implement the environmental arrangement strategies, responsive interaction, and prompting and reinforcement inherent to EMT. Additionally, parents generalized skills from the university-based clinic (training setting) to their homes.


Trends and Issues


Although the above parent training procedures are often effective, the range of symptom presentation in ASD, level of parent education and experience, and other pragmatic issues (e.g., time parents have available to implement intervention) would seem highly likely to influence the success of parent training and parent-implemented intervention (Matson et al. 2009). Therefore, additional research focused on the factors that influence the successful training of parents and the effects of parent-implemented intervention is warranted. For example, Lang et al. (2009) reviewed research in which parents were trained to implement communication interventions to children with autism. Studies were excluded from the review if the parents’ ability to implement specific intervention components was not measured in baseline. This ensured that improvement in parent ability was measured in at least a pre/post test or AB design. The result of focusing only on studies with baselines of parent behavior was that only 11 studies involving only 60 parents qualified for inclusion in the review. Of that group, none of the studies involved a component analysis to determine the contribution of individual training procedures, and an absence of parent demographic information was noted across studies. Similar issues regarding research designs and the absence of parent participant characteristic information have been reported in other literature reviews covering parent-implemented social, communication, and challenging behavior interventions (Matson et al. 2009; McConachie and Diggle 2007; Meadon et al. 2009; Schultz et al. 2011). Therefore, definite statements regarding the most efficient and effective approaches to training parents to implement interventions to autism are not yet possible and additional research in this area remains warranted.


Sibling-Mediated Intervention


Historically siblings have often been informally included as part of the home-based intervention process for children with ASD (Ferraioli et al., in press). There are many benefits for both the target child and other family members as a result of this inclusion, including improved family functioning and stronger bonds between the sibling and target child. The sibling is also likely to develop a greater understanding of the target child’s condition and needs (Reagon et al. 2006) and may be motivated to learn to play appropriately with him or her. Furthermore, siblings are considered to be ideal models because of their daily proximity to the child with ASD and their perceived status. There is also an opportunity for the transferability of skills between home and school (Celiberti and Harris 1993).

However, the formal inclusion of siblings as natural change agents did appear in the literature until the 1970s. These early studies focused on specific skills including dropping chips in holes (Cash and Evans 1975) and bead stringing (Colletti and Harris 1977). During the 1980s the skills being taught by siblings became somewhat more functional and included self-help (Lobato and Tlaker 1985) and domestic skills (Swenson-Pierce et al. 1987). Schreibeman et al. (1983) took the procedure of including siblings in the intervention process to a new level of functioning by teaching them how to implement a series of behavior modification skills, including shaping and reinforcement (Tsao and Odom 2006). These early studies indicated that siblings could be an important and successful part of the therapeutic process. This section presents a selective review of studies evaluating sibling-mediated interventions for children with ASD.


Summary of the Research


When siblings are unable or unwilling to play with each other in a productive and positive way additional stress may be put on parents. Thus, if one of the key aims of therapy for a child with autism is to improve family functioning, it is somewhat surprising that it was not until the 1990s that researchers in the ASD field began to focus on improving the relationship between siblings. Strain and Danko (1995) were among the first to study sibling-implemented interventions using a withdrawal of treatment design to teach parents to encourage positive interactions between young children with autism and their siblings. They implemented a school-based social skills intervention package that had been adapted for caregivers. It included video clips of sibling pairs playing together appropriately by displaying five different interactional strategies. The findings demonstrated that all three families were able to effectively implement the package, which resulted in marked improvements in the percentage of positive interactions between siblings.

As noted by Tsao and Odom (2006), despite the publication of a few exemplary articles the specific use of siblings as change agents to improve social behavior in children with ASD is still a relatively under-researched field. Celiberti and Harris (1993) published the first study in this area and highlighted the importance of learning to play appropriately with their siblings in the overall social development of children with ASD. This skill was considered to be age appropriate and likely to result in an improved sibling relationship. They utilized a multiple-baseline design across three activities with three sibling pairs. The siblings were taught to elicit play related speech, praise play behaviors, and prompt when the target child failed to respond. Clear differences were found between baseline and intervention for all sibling pairs on all three activities. In addition, the generalization and follow-up data revealed that the newly acquired skills were also displayed with different toys and in different settings for up to 16 weeks after the completion of the study.

Taylor et al. (1999) conducted two play based, multiple baseline probe design studies with two sibling pairs. Each child viewed their respective sibling producing positive play related statements with an adult while engaged in three different play activities. In the first experiment the target child viewed the video three times and then practiced the scripted play statements with an adult. During probe sessions, which were conducted before the intervention/practice sessions the sibling pairs were instructed to play together. The sibling made scripted statements. Results revealed that the target child had learned to make the scripted comments during all three activities. In the second experiment the authors used a forward chaining method that focused on the number of unscripted comments made by the target child. The child viewed the video, which depicted his sibling playing with an adult and was then able to play with materials represented in the video. A nearby adult praised him for any relevant comments he made about the play materials. Probe sessions were conducted with the sibling after the target child had completed the forward chaining procedure and met acquisition criteria. The results showed a meaningful increase in the target child’s unscripted comments about the play materials as compared to baseline.

Reagon et al. (2006) also implemented a video-modeling intervention. The aim of the study was to teach pretend play skills to a 4-year-old child with autism, using his sibling as both a video model and a play partner. The authors sought to replicate and extend the Taylor et al. (1999) study by simplifying procedures and conducting the study in a center rather than in the child’s home. Four play scenarios were implemented in an AB design. During intervention the pair watched a video clip and were then instructed to “Go play” with no additional instructions or prompts. The results revealed that the number of scripted play actions and scripted statements increased during intervention and were maintained during a follow-up session in the child’s home. The number of spontaneous words did not appear to be influenced by the intervention, however, the authors note that there was an increase in complexity from single words to longer statements. Again, as noted by the authors this study was limited by the research design and inclusion of only one participant.

A recent focus in this area has been joint attention. As Tsao and Odom note in the introduction to their 2006 article, it is an early emerging skill, which is critical to the overall development of social behavior in children with ASD. One of the aims of their study therefore was to see if they could see an improvement in the amount of joint attention exhibited by the children with ASD. Their study involved a multiple-baseline design across four sibling dyads. The siblings participated in 10-min social skills lessons targeting a range of social interaction skills. The results revealed modest positive changes in the social behavior of the target children and moderate changes in the behavior of the nondisabled siblings. There were also significant increases in the amount of joint attention exhibited by the target children; however, the skills taught did not appear to generalize to an alternative setting.

Ferraioli and Harris (2011) included four sibling dyads in a multiple baseline across participants design. Siblings were trained to teach joint attention skills to their sibling with ASD using a procedure developed by Whalen and Schreibman (2003), which involves eight sets of goals and accompanying procedures. The results indicated that all four participants demonstrated gains in responding to joint attention and three participants demonstrated gains in initiation.


Trends and Issues


There are a number of important issues arising from the sibling as change agents literature that are worthy of consideration. In their review of sibling-mediated interventions, Ferraioli et al. (2011) highlight the importance of a sibling’s motivation to be a social agent. Interventions take time and patience and therefore a sibling needs to have as much age-appropriate information as possible in order for them to understand the purpose and procedures of the intervention as well as the learning difficulties that the target child may have. This process is considered to be a vital component in order to ensure high levels of motivation on the part of the sibling. Furthermore the power differential between the sibling and the target child needs to be managed. Finally, materials and activities need to be interesting and engaging, particularly when working with young children, and the siblings need to be reinforced for their involvement.

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Apr 4, 2017 | Posted by in PSYCHOLOGY | Comments Off on Families of Children with Autism Spectrum Disorders: Intervention and Family Supports

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