A community support program for children with autism and their typically developing siblings: Initial investigation.

Article

A community support program for children with autism and their typically developing siblings: Initial investigation Lauren A Kryzak Queens College of the City University of New York, USA; The Graduate Center of the City University of New York, USA

Journal of Intellectual Disabilities 2015, Vol. 19(2) 159–177 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1744629514564450 jid.sagepub.com

Mirela Cengher Queens College of the City University of New York, USA

Kathleen M Feeley Long Island University, Post, Brookville, NY, USA

Daniel M Fienup Queens College of the City University of New York, USA; The Graduate Center of the City University of New York, USA

Emily A Jones Queens College of the City University of New York, USA; The Graduate Center of the City University of New York, USA Date accepted: 21 November 2014

Abstract Siblings are a critical part of lifelong support for individuals with autism spectrum disorder (ASD). But siblings face their own social–emotional adjustment needs. These needs may be addressed through programs that include support groups specifically for the siblings. This study examined the effects of a community program on typical siblings’ depression, anxiety, ASD knowledge, and peer network as well as reciprocal interactions between the typical sibling and sibling with ASD. The program provided a sibling support group, a skills intervention for children with ASD, and an inclusive recreation time. Siblings reported significant decreases in depression and physiological anxiety and improvements in their peer network. Autism knowledge increased but only approached significance. Direct observations revealed improvement in reciprocal interactions by most children that did not reach statistical significance. Parents, typical siblings, and interventionists indicated positive reactions to the program and its goals and outcomes. Findings are discussed in terms of the need to continue to explore interventions for siblings of children with ASD. Keywords ASD, behavioral observation, community-based interventions, siblings, support group Corresponding author: Emily A Jones, Department of Psychology, Queens College, 65-30 Kissena Boulevard, Queens, NY 11367, USA. Email: [email protected]

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The presence of an autism spectrum disorder (ASD) can drastically impact the relationship between the child diagnosed with ASD and his or her sibling(s) (Orsmond and Seltzer, 2007). Children with ASD demonstrate significant deficits in social–communication skills as well as restricted and repetitive behaviors and interests, resulting in atypical interactions with others, including siblings. Siblings, in turn, may lack skills to effectively react to atypical interactions, prompt positive interactions, or respond to challenging behavior exhibited by the child with ASD. To further complicate the sibling–child with ASD relationship, typical siblings may also experience their own emotional and behavioral maladjustment related to having a sibling with ASD. Research on the maladjustment of typical children with a sibling with ASD is quite varied. For example, a recent review by Meadan et al. (2010) found mixed results regarding behavior problems, depression, loneliness, and sibling conflict. Some studies find siblings of children with ASD do not show significant differences in adjustment compared to siblings of children with Down syndrome and typically developing children (e.g. Hastings, 2007; Kaminsky and Dewey, 2002). There are also studies showing positive outcomes including siblings overall positive perceptions of their sibling relationship, recollections of positive experiences with their siblings with ASD, and a warm close relationship (e.g. Kaminsky and Dewey, 2001; Mascha and Boucher, 2006). Yet a number of studies find siblings of children with ASD show more externalizing and internalizing problems and report more embarrassment than siblings of children with other disabilities and typical development (e.g. Benson and Karlof, 2008; Fisman et al., 2000; Rodrigue et al., 1993; Roeyers and Mycke, 1995; Ross and Cuskelly, 2006; Verte´ et al., 2003). Sibling adjustment may be related to the severity of a family member’s ASD symptoms and problem behavior in that adjustment is more impaired when ASD symptoms and problem behavior are more severe (e.g. Hastings, 2007; Pilowsky et al., 2004). Accordingly, a subset of children who have siblings with ASD may benefit from professional services. Regardless of whether siblings present with clinical levels of maladjustment, their relationship with their sibling with ASD is still often negatively affected. Sibling–child with ASD relationships are characterized by less intimacy, fewer prosocial behaviors, and less nurturance than relationships between siblings when one child has Down syndrome (e.g. Kaminsky and Dewey, 2001). Sibling–child with ASD pairs often spend less time together than typically developing siblings (Knott et al., 1995). Adjustment problems (Petalas et al., 2009) and poor sibling relationships (Orsmond and Seltzer, 2007) may persist or increase over time. As such, providing some kind of intervention to address typical sibling maladjustment and his or her relationship with the child with ASD is likely warranted for many families. Sibling relationships are particularly important because siblings often become a central source of support and caregiving as both children grow into adulthood (Dew et al., 2004; Holmes and Carr, 1991). During formative years, siblings can offer numerous opportunities for development of social, communication, and coping skills for children with ASD (Schreibman, 2000) and provide a normative peer network and opportunities for inclusive experiences. Positive changes in the sibling and sibling relationship may in turn affect the entire family system (Grindle et al., 2009). A number of variables may negatively affect sibling interactions. First, children with ASD may engage in high levels of aggressive (Ross and Cuskelly, 2006) and ‘‘weird or strange’’ behavior (Roeyers and Mycke, 1995: 307). These behaviors by the children with ASD may serve as punishers if they occur during interactions with their typically developing siblings, subsequently decreasing the future likelihood of the siblings engaging in interaction. Second, siblings often lack knowledge about characteristics of ASD and coping


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strategies, two factors that lead to positive views of children with ASD (McHale et al., 1986) and improved relationships (Roeyers and Mycke, 1995). Third, siblings may be isolated from outside peer networks, which may serve as an important outlet to develop coping strategies and understanding of ASD (Ba˚genholm and Gillberg, 1991). Without knowledge of ASD characteristics and/or appropriate coping strategies, typically developing siblings may not understand the reasons for the behaviors of their sibling with ASD and interpret maladaptive behaviors or limited social–communicative reciprocity as purposeful negative behavior toward them. Thus, there is a need for an appropriate emotional support system for siblings of children with ASD. One approach to addressing the needs of siblings is through support groups, similar to those offered to parents of children with ASD (Lobato, 1990; Meyer and Vadasy, 1994). Sibling support groups typically involve regular meetings in which a group of siblings learn about their brother’s/ sister’s disability, discuss issues and emotions, build a support network, and/or learn about coping strategies. One way in which support groups may improve sibling adjustment and interaction is through formal and informal discussions as well as readings that focus on information about ASD. However, there is limited empirical evidence for the support group approach (Smith and Perry, 2005). In one recent study, D’Arcy et al. (2005) examined the efficacy of Sibshops (Meyer and Vadasy, 1994), group meetings for siblings of children with various physical and/or intellectual disabilities (8–13 years old), which focused on sharing information and relating to others’ experiences. Even though there was no significant change in self-esteem during the 4-month period, D’Arcy et al. (2005) found high social validity (siblings ‘‘enjoyed’’ or ‘‘loved’’ meeting other siblings). Before Sibshops, 13 of 16 siblings did not talk with their families about what it was like to have a sibling with disabilities, but 12 did during Sibshops. Also nine siblings reported hearing stories told by other siblings at Sibshops to which they could relate. Finally, parents reported attending Sibshops was a positive experience for their children. In one of the few studies focused on siblings of children with ASD, Smith and Perry (2005) examined the effects of a weekly support group focused on increasing knowledge about ASD, discussing feelings, sharing ways to cope, and enhancing self-concept. Sibling self-concept improved, but feelings of anger and resentment did not change. Participants’ ASD knowledge improved from chance responding to a mean score of 65%. Although there was significant improvement from pretest to posttest, there may be more knowledge siblings could and should gain. Smith and Perry’s (2005) findings suggest potential for support groups to improve adjustment and relationships for siblings of children with ASD. Across the few support group studies, results also show inconsistent improvement on social– emotional dependent variables (McLinden et al., 1991; Smith and Perry, 2005). In addition, most studies involved siblings of children with a variety of disabilities and illnesses, with only a few specifically focusing on siblings of children with ASD (e.g. Smith and Perry, 2005). In addition, measures are often limited to self-report or parent report, rather than objective measures of changes in behavior of the siblings toward each other (McLinden et al., 1991; Smith and Perry, 2005). Only Lobato (1985) included an objective behavioral-dependent measure of reciprocal typical sibling–child with ASD interactions. Lobato examined a support group for siblings of children with disabilities (e.g. Down syndrome and cerebral palsy), none of whom had ASD. Parent observations of sibling interactions at home revealed no changes over the course of the support group. The Support and Skills Program (SSP) for children with ASD and their siblings was created to meet the multitude of needs of children with ASD and their typically developing siblings, with the


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goals of decreasing typical sibling maladjustment, increasing sibling’s ASD knowledge, increasing sibling social network, and improving sibling–child with ASD interactions. During each meeting, children with ASD received individualized intervention in social, communication, and play/leisure skills. Simultaneously, typical siblings met to participate in a support group focused on developing a network of peers who face similar family challenges, learning about ASD, and learning coping strategies. Then children with ASD and their siblings attended an inclusive recreation time where they practiced what they had learned in their separate groups. This program was relatively unique in its involvement of both children with ASD and their siblings. The purpose of this initial investigation was to evaluate the effects of the SSP on sibling’s ASD knowledge, peer network development, and adjustment as well as interactions between sibling– child with ASD dyads using self-report and observational measures. This provides an examination of a support group specifically for siblings of children with ASD and extends the literature by including objective, behavioral measures of reciprocal social interactions between siblings.

Method Participants This research was reviewed and approved by the institutional review boards at Queens College and Long Island University. All participants provided informed consent. This investigation included two cohorts of participants who attended the SSP in two separate settings across consecutive semesters beginning in the fall. Eligibility for the program required a child to have both an ASD diagnosis from an outside source (per DSM-IV-TR; American Psychiatric Association, 2000) and a typically developing sibling (i.e. with no known ASD diagnosis). Recruitment flyers were distributed to schools, list serves supporting families with an individual with ASD, and agencies/professionals providing direct services to children with ASD. Once families inquired about the SSP, they completed screening questionnaires for review by program staff to determine eligibility. Due to the fact that volunteer interventionists had limited experience with ASD, intervention, and challenging behaviors, potential participants with a history of severe self-injury and aggressive behavior were excluded. Sample. Diagnoses of the children with ASD included pervasive developmental disorder not otherwise specified, autism, Asperger’s, or autism spectrum diagnoses as per parent report of a previously existing diagnosis. The program did not exclude siblings who may have had other disorders, such as attention-deficit hyperactivity disorder. A total of 22 families signed consent forms, and data from 14 families are reported here. One family had one child with ASD and two siblings and one family had two children with ASD and one sibling, resulting in a total of 15 children with ASD and 15 siblings. Figure 1 explains the determination of the final sample of 14 families. Generally, missing data resulted in the exclusion of a dyad, not dropout. The age range for the final sample of children with and without ASD was 4–14 years. Participants were recruited from two cohorts who attended the program in subsequent semesters, although the treatment was identical across semesters. The fall group included six siblings (four males and two females) between 6 and 8 years of age and their seven siblings with ASD (four males and three females) between 5 and 11 years. The spring group included nine siblings (five males and four females) between 6 and 14 years and their eight siblings with ASD (all male) between 4 and 13 years.


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Figure 1. Flowchart identifying the number of participants who completed each measure and exclusion.

Settings Sessions were held at two different university settings in Long Island, New York, USA. Both locations had separate areas for skills intervention, the sibling support group, and recreation time. Children with ASD received skills intervention in a classroom with desks and chairs grouped for individual instruction or separated by cubicles. The sibling support group occurred in an open classroom with siblings seated in chairs in a semicircle and the instructor seated at the opening. Recreation time occurred in a gymnasium or the lawn of the quadrangle. Observations of sibling interactions occurred in a classroom separated into play areas by tables or cubicles.

Materials The first and last authors created curricula for the skills intervention, sibling support group, and recreation time. Materials for the skills intervention included datasheets, timers, writing tools, index cards/wipe boards for visual prompts, art supplies (e.g. markers and construction paper), board games (e.g. Candyland™), and edibles. Materials for the sibling support group included workbooks with weekly activities, board games, playing cards, art supplies, a ball, candy, certificates (e.g. good listening), children’s books about ASD, a shoe box, and ASD trivia questions. Materials for the recreation time were similar to those used in physical education classes and intended for group activities. Recreation time materials included a rule poster, timers, music player, whistle, awards, art supplies, cones, variety of play materials


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(e.g. balls, jump rope, bowling pins, Hula Hoops1), place markers (e.g. plastic dots), and buckets. Materials for the observations of sibling interactions included various board games that were also part of the skills intervention, timers, and video cameras. Siblings, parents, and volunteers completed self-report measures (described shortly).

Interventionists A number of licensed and credentialed professionals with experience with ASD treatment implemented the SSP with the help of student volunteers. A licensed special education teacher oversaw the skills intervention for children with ASD. A licensed school counselor led the sibling support groups with the assistance of a few volunteers. A volunteer, who was familiar with the activities and goals of the SSP and had 3 years of experience working in programs for children, ran the recreation time in the fall session. She was supervised by the third author. A psychology doctoral student, with 2 years of experience at camps for children with special needs, ran the recreation time in the spring session. Approximately 25–30 undergraduate and master’s level student volunteers served as one-to-one interventionists. Volunteers were pursuing degrees in related fields, including special education, physical education, speech–language pathology, psychology, and counseling. Volunteers were primarily college-aged (M ¼ 22.7 years) females (90%) with limited experience working with children with ASD (60% had no prior experience). Volunteers were recruited from the authors’ affiliated colleges. Prior to program onset, the first author held an initial 3-h training for all volunteers. Attending the training was strongly recommended but not required. Training content covered the goals and schedule of the SSP, characteristics of ASD, antecedent-based (e.g. providing choices) and consequence-based (e.g., prompt fading) behavioral strategies, functions of challenging behaviors, targets during skills intervention (e.g. turn taking), and data collection. The special education teacher, first author (PhD candidate in psychology), and third author trained and supervised the volunteers throughout the program.

Dependent variables Sibling self-report. Ten siblings completed the Child Depression Inventory (CDI; for age 7–17 years) (Kovacs, 1985) and eight completed the Revised Children’s Manifest Anxiety Scale–Second Edition (RCMAS-2; for age 6–19 years) (Reynolds and Richmond, 2008). The CDI, a measure of depression, includes an overall score and subscales for negative mood, interpersonal problems, ineffectiveness, anhedonia, and negative self-esteem. The RCMAS-2, a measure of anxiety, includes an overall score and subscales for defensiveness, physiological anxiety, worry, and social anxiety. Siblings completed measures based on his or her age. This resulted in some children completing one or both of the measures. Sibling ASD knowledge. Eleven siblings who were between the age of 6 and 11 years completed the Autism Sibling Knowledge (ASK) questionnaire. The first and last authors developed the ASK in accordance with a similar measure published by Glasberg (2000). The ASK includes subscales about ASD knowledge and presence of a social network. Siblings rated 35 items as true, false, or not sure. Items cover the cognitive, social–emotional, and communicative characteristics associated with ASD (e.g. ‘‘Kids with ASD look like kids without ASD’’) as well as sibling’s behavior with respect to their brother’s/sister’s diagnosis (e.g. ‘‘I talk about my feelings about my brother/


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sister with ASD with adults’’). The questionnaire was designed to be appropriate for children from 6 to 11 years old. We subjected the ASK to statistical analyses regarding split-half reliability, validity, and item analysis. Split-half reliability, as assessed using odd–even comparisons and the Spearman–Brown correction, was found to be high (r ¼ 0.953, p < 0.01). Kuder–Richardson reliability (r ¼ 0.968) indicated the content of the ASK has high internal consistency. Content validity was assessed by comparing questions in the ASK with the Diagnostic and Statistical Manual of Mental Disorders revised 4th ed. (American Psychiatric Association, 2000) diagnostic criteria for ASD, which requires qualitative impairments across three primary areas, namely, language and communication, reciprocal social interactions, and restricted, repetitive, and stereotyped behaviors and interests. Twelve questions reflected diagnostic criteria, whereas 18 questions reflected the biological nature of ASD, impairments in quality of life associated with ASD, treatment, and distracter items. Five items were intended to measure the typical sibling’s support network (e.g. having friends with their own siblings with ASD and talking to their friends about their sibling with ASD). Item analysis was conducted to determine whether items were too easy/difficult. Three questions were deemed to be too difficult, but none were too easy. Further information can be obtained from the first author. Behavioral observations of sibling interactions. Changes in sibling–child with ASD interactions were evaluated through direct observations of social–communicative behaviors. The first and second authors coded video recordings of sibling dyads playing games. Each dyad was videotaped while playing one game for 5 min, followed by another game for 5 min. This occurred during the first and last sessions of the SSP. Volunteers provided minimal assistance or interference during game play. For example, if a child could not open a box, the volunteer provided brief assistance and stepped away, without engaging in any verbal communication. The volunteers provided direct assistance in the form of modeling or physical prompting if the children did not independently engage in the activity for 1 min and then faded their involvement as soon as the children began to play. After 5 min with one game, the volunteer announced that it was time to play a new game, collected the first game, and introduced the new game. Two games were videotaped to ensure we obtained at least one clear video recording of the same game both pre- and posttest. Researchers coded the video recordings in two distinct ways. First, we calculated the total duration for which the child with ASD was (a) off camera, (b) on camera and engaging in play behavior with the sibling, or (c) on camera but not playing with sibling. Second, when the child with ASD was on camera and engaging in play behavior with the sibling (based on the first coding), the authors coded the number of social–communicative behaviors emitted by either the child with ASD or the sibling. A social–communicative behavior broadly referred to behavior emitted by either child directed to the other child in the dyad. The authors then coded frequencies of each occurrence of a social– communicative behavior for who engaged in the behavior, whether it was an initiation or a response, and the type of affect associated with the behavior. Definitions were compiled from similar measures used in the peer literature (e.g. Kamps et al., 2002; Odom and Strain, 1986). An initiation referred to any communicative behavior not preceded within 5 s by a communicative behavior from the partner. Responses were any behavior that occurred specific to and directed to the partner (e.g. eye gaze and verbal communication) within 5 s of a preceding behavior from the partner. Affect, defined as a facial display of emotion, was categorized as positive, negative, or neutral. Positive affect was observed in turning the corners of the mouth up, with or without an open mouth;


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the corners of the mouth turned up and sounds of amusement (e.g. laughing). Negative affect was observed in turning the eyebrows and the corners of the mouth down; mouth open, eyebrows directed upward, and eyes wide open; mouth closed tightly, turning the corners of the mouth down, turning the eyebrows down, and wrinkling the forehead (e.g. frown, scared, and angry expressions). Neutral affect was defined as any facial display that did not meet the criteria for positive or negative affect. These codes were collapsed into several summary variables about the interaction. We calculated (1) the total duration of the 5 min during which the child with ASD engaged in play behavior with the sibling, (2) the total number of initiations and responses made by each child, (3) the average length of reciprocal interactions, and (4) the percentage of social–communicative behaviors that were positive, neutral, and negative. A reciprocal interaction was defined as an initiation and all responses that followed, where each response occurred within 5 s or less of the previous response. The length of each reciprocal interaction was averaged for each dyad.

Social validity The fourth and fifth authors developed social validity questionnaires for parents, siblings, and volunteer interventionists to complete at the end of the program. Each questionnaire included several statements related to the goals of the SSP, intervention procedures, and outcomes (Wolf, 1978). Parents and volunteers rated agreement with each statement on a 5-point scale where 1 indicated strong disagreement, 3 indicated neither agreement nor disagreement, and 5 indicated strong agreement. Siblings rated agreement with each statement by circling one of five simple line drawings of faces (i.e. full smile, partial smile, neutral mouth, partial frown, or full frown). The social validity questionnaire for parents contained 21 statements (e.g. ‘‘It is important for my child with ASD and my typically developing child to learn how to interact with each other’’) and two open-ended questions about the program (i.e. ‘‘What was the best part of the program?’’and ‘‘What would you change about the program?’’). The social validity questionnaire for siblings contained 13 statements about the sibling support group (e.g. ‘‘I play more with my brother/sister since we come to the Weekend Program’’). The social validity questionnaire for volunteers contained 23 statements and two open-ended questions. The questionnaire was similar to the parent questionnaire but also included questions related to the volunteer’s additional training in interventions and ASD knowledge.

Procedure Upon acceptance to the SSP, families received application packets containing required forms for the program (e.g. emergency contact information) and the self-report questionnaires described previously. The packet also contained consent forms requesting the use of this information for research purposes. Packets were sent to families approximately 2 weeks before the onset of the program to be completed and returned on the first day of the program. The SSP met for 2 h on seven Saturdays over an 8-week period in the fall and over a 9-week period in the spring (SSP did not meet on holidays or during college events). For the first hour of each session, children with ASD received individualized skills intervention, while siblings attended the support group. The second hour of each session involved all children attending the recreation time together. On the first and last days of the SSP, during the first hour, we also video recorded each sibling dyad playing games for the observations of sibling interactions (described previously). On the sixth week of the program, questionnaires were sent home to families for


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parents and siblings to complete and return on the last day of the program. Families who did not return questionnaires on the last day were asked to mail the questionnaires to the last author at their earliest convenience. Sibling support group. The first and fifth authors developed a 7-week program drawing on sibling support group curricula such as SibShops (Meyer and Vadasy, 1994). Because the group consisted of siblings of children with ASD, we created specific lessons and activities that focused on characteristics of ASD. The weekly topics and activities are outlined in Appendix 1. Each week covered a specific topic; in the first few weeks, topics focused on learning about other group members, while the latter weeks focused on ASD knowledge. Each weekly meeting began with an icebreaker game. During the game, children chose two colored candies, each of which corresponded to one of four specific questions regarding the weekly topic that they answered in roundrobin fashion. To illustrate, one question was ‘‘What is something that your sibling does that makes you angry?’’ during the coping strategy topic week. Following a response, the counselor queried the group for other opinions. Following the icebreaker, siblings engaged in activities to learn more about the weekly topic. For example, during the week focused on sharing similarities, siblings made a tree with green leaves on which they wrote good things about their sibling with ASD and brown leaves on which they wrote things about their siblings with ASD that made them upset. Each session ended with a homework assignment for the sibling. This helped inform parents of the activities in the support group and encouraged siblings to engage in activities with their sibling with ASD at home. The full curriculum is available upon request from the first author. Individualized skills intervention. Children with ASD received instruction to address social, communication, and play/leisure skills that are important for interacting with their siblings (e.g. turn taking, reciprocal commenting, and sitting appropriately). As is consistent with intervention programming for children with autism, performance was monitored each week of the program and decisions about skills to teach and intervention plans were made based upon ongoing data collection about children’s performance. During the first week of the program, volunteers collected data about the skills of the child with ASD related to taking their turn during a game, allowing their partner to take a turn, responding to their name being called, making reciprocal statements (e.g. volunteer said, ‘‘My name is Lauren,’’ child responded, ‘‘My name is John’’), initiating comments (e.g. ‘‘I have this game at home’’), requesting, and use of eye contact. The special education teacher used baseline data to develop individualized intervention plans targeting two to three skills for each child with ASD. An example instructional program for one learner with ASD is shown in Appendix 2. Intervention was typically embedded in game play or other activities, such as drawing pictures. Sometimes children worked one-on-one with the interventionist and at other times played games with peers with the interventionist’s support. Instruction involved setting up a context, delivering an instruction (SD), prompting if necessary, reinforcing behavior, and repeating this structure for 5–10 opportunities. Prompts were individualized for each child and the target response and faded from most to least. Physical and gestural prompts were used for turn taking, while visual (textual or pictorial) prompts were used for expressive communication and eye contact. Prompt fading occurred when children performed at 80% or higher in a session of 5–10 opportunities. Throughout the 7-week program, the special education teacher, along with the first, third, and fifth authors provided weekly feedback for interventionists, including instructions, modeling,


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practicing, and feedback on volunteer’s implementation of intervention. The special education teacher also examined treatment data each week and changed programs (targets and prompt levels) depending upon the child’s performance. Recreation time. Recreation time followed a curriculum developed by the first and fifth authors. The activities and structure were intended to mimic ‘‘field days’’ and physical education classes at schools, including stretching, relay races, cooperative games between siblings (e.g. both siblings in a hula hoop trying to walk around the gymnasium to target locations, catching a ball, or bean bag toss), freeze dance, Simon says, red rover, and red light, green light, 123. Games were those that would likely be played in other settings by peers and were appropriate for children of varied ages and abilities. Volunteers targeted the same responses as during skills intervention, providing opportunities for generalization across settings, partners, and activities. For example, turn taking might be addressed when the child with ASD was building blocks with the volunteer during the skills intervention and when tossing a bean bag with his sibling during recreation time.

Design and analysis A within subject pretest–posttest design in which individual participant responding was measured at the beginning and end of intervention was utilized. Measures included behavioral observations of sibling dyads playing games and questionnaires completed by parents and siblings. Pretest and posttest scores were compared using paired samples t tests.

Interobserver agreement Interobserver agreement (IOA) was calculated for observations of sibling interactions by comparing the trial-by-trial independent coding of the first and second authors. Authors practiced coding with videos not included in this analysis, until IOA reached 80%. Agreements were defined as both authors scoring a social–communicative behavior by the same child within 3 s on the video. Disagreements were defined as either author recording a social–communicative behavior that the other author did not record. Coding a behavior as an initiation or response depended upon prior behavior. For example, if a behavior was coded as an initiation by one coder and omitted by the second coder, this was considered a disagreement. However, if the following social–communicative response was within 5 s and it was recorded by both coders, one would consider it to be a response (because they coded the prior behavior as an initiation), but the other would consider the behavior to be an initiation (because they omitted the prior initiation). As such, if multiple disagreements occurred due to one disagreement in the response chain, only one disagreement was included in the IOA calculation and subsequent disagreements were not included in either agreement or disagreement calculation. The authors calculated trial-by-trial IOA for 27% of the video clips by dividing the number of agreements by total agreements plus disagreements, multiplied by 100. IOA for initiations averaged 93% (range, 80–100%) and for responses averaged 82% (range, 73–100%). IOA averages for expressions of affect were 92% for positive (range, 67–100%), 100% for negative, and 100% for neutral affect.


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Results Sibling self-report Mean CDI scores decreased from pretest to posttest for total score (pretest M ¼ 45, SD ¼ 6.86; posttest M ¼ 41.80, SD ¼ 5.59), negative mood (pretest M ¼ 44.30, SD ¼ 4.95; posttest M ¼ 43.30, SD ¼ 4.16), interpersonal problems (pretest M ¼ 45.20, SD ¼ 4.73; posttest M ¼ 42.70, SD ¼ 1.25), ineffectiveness (pretest M ¼ 45.80, SD ¼ 9.51; posttest M ¼ 44.10, SD ¼ 8.46), anhedonia (pretest M ¼ 49.20, SD ¼ 9.16; posttest M ¼ 46.10, SD ¼ 7.89), and negative self-esteem (pretest M ¼ 46.10, SD ¼ 5.49; posttest M ¼ 41.60, SD ¼ 3.84). The total CDI and negative self-esteem subscale scores decreased significantly, t(9) ¼ 2.533, p ¼ 0.032 and t(9) ¼ 2.540, p ¼ 0.032, respectively. The decrease in interpersonal problems approached significance, t(9) ¼ 1.896, p ¼ 0.090. One sibling scored in the clinical range (i.e. t score greater than 65) for ineffectiveness and anhedonia at pretest but within the nonclinical range at posttest. All other subscales from the other nine siblings were within nonclinical ranges at both pretest and posttest. Mean RCMAS-2 decreased from pretest to posttest for total score (pretest M ¼ 46.88, SD ¼ 12.24; posttest M ¼ 42.88, SD ¼ 8.72), physiological anxiety (pretest M ¼ 48.25, SD ¼ 8.38; posttest M ¼ 41.00, SD ¼ 8.04), worry (pretest M ¼ 48.13, SD ¼ 11.79; posttest M ¼ 45.88, SD ¼ 8.53), and social anxiety (pretest M ¼ 46.00, SD ¼ 11.66; posttest M ¼ 42.38, SD ¼ 10.81). Defensiveness remained the same from pretest to posttest (pretest M ¼ 55.00, SD ¼ 9.20; posttest M ¼ 54.38, SD ¼ 13.70). The decrease in physiological anxiety was statistically significant, t(7) ¼ 2.886, p ¼ 0.023. Four siblings’ scores on all subscales fell within the nonclinical range at both pretest and posttest. For two siblings scores decreased from the clinical to nonclinical range on at least one subscale. For three siblings, scores on one pretest subscale remained in the clinical range at posttest. For two siblings, one pretest subscale score (defensiveness) moved from the nonclinical to the clinical range.

Sibling ASD knowledge The ASK questionnaire measured both knowledge of ASD characteristics and sibling social network. Mean percentage of correct responses on the ASD knowledge questions was 56.06% (SD ¼ 27.36) at pretest and 68.79% (SD ¼ 18.64) at posttest. The increase in ASD knowledge approached significance, t(10) ¼ 1.901, p ¼ 0.086. Scores on the social network questions increased significantly, t(10) ¼ 3.525, p ¼ 0.005, from pretest (M ¼ 40.00%, SD ¼ 33.47) to posttest (M ¼ 69.10%, SD ¼ 20.71).

Behavioral observations of sibling interactions On the observational measure, duration of engagement of sibling interactions remained unchanged (pretest M ¼ 227.8 s, SD ¼ 92.5; posttest M ¼ 218.1 s, SD ¼ 115.8), but dyads engaged in longer reciprocal interactions at posttest (M ¼ 4.3, SD ¼ 6.7) than at pretest (M ¼ 2.5, SD ¼ 1.7). Children with ASD increased their initiations (pretest M ¼ 3.5, SD ¼ 2.9; posttest M ¼ 4.1, SD ¼ 3.5) and responses (pretest M ¼ 7.5, SD ¼ 7.3; posttest M ¼ 11, SD ¼ 10.8) to their siblings from pretest to posttest. Siblings also increased the frequency of their initiations (pretest M ¼ 6.1, SD ¼ 3.6; posttest M ¼ 6.5, SD ¼ 5) and responses (pretest M ¼ 7.6, SD ¼ 7.5; posttest M ¼ 10.4, SD ¼ 10.1) to their sibling with ASD from pretest to posttest. The changes observed in initiations, responses, and reciprocal interactions for children with ASD and siblings did not reach statistical significance. Of the 11 participants with ASD, two increased both initiations and responses from pretest to


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posttest, seven increased initiations or responses, and two showed either a decrease or no change. Of the 11 siblings, three increased both initiations and responses from pretest to posttest, five increased initiations or responses, and three showed either decreases or no change. The sibling who had two siblings with ASD was video recorded with each sibling with ASD separately. He showed increased initiations with both siblings and increased responses toward only one child with ASD but decreased responses to the other child with ASD. The percentages of social–communicative behavior that corresponded with positive, negative, and neutral affect showed that no children demonstrated negative affect at pretest. At posttest, one child with ASD showed negative affect during 11% of her social–communicative behaviors. Eighteen children showed neutral affect during all of their social–communicative behaviors at pretest, which decreased to 11 children at posttest. Four children demonstrated some positive affect (two children with ASD (5–30% of social–communicative behavior) and two siblings (13–22%)) at pretest. At posttest, the number of children showing some positive affect increased. Ten children showed positive affect during some social–communicative behaviors. One child with ASD did not show any social–communicative behaviors at posttest (five children with ASD (7–50% of social– communicative behavior) and five siblings (3–33%)).

Social validity Parents (M ¼ 4.57, SD ¼ 0.70), siblings (M ¼ 4.56, SD ¼ 0.67), and volunteers (M ¼ 4.82, SD ¼ 0.44) rated the goals of the program as important. Parents (M ¼ 4.61, SD ¼ 0.58), siblings (M ¼ 4.46, SD ¼ .81), and volunteers (M ¼ 4.68, SD ¼ 0.54) rated the individual skills instruction for children with ASD, sibling support group, and recreation time as positive interventions. Parents (M ¼ 3.98, SD ¼ 0.86), siblings (M ¼ 4.09, SD ¼ 1.13), and volunteers (M ¼ 4.33, SD ¼ 0.79) reported positive outcomes at the end of the program. The lowest rated outcome was the parents’ ratings of sibling outcomes in terms of developing a social network (M ¼ 3.15, SD ¼ 0.80). This mean rating still fell within the middle of the scale indicating neither agreement nor disagreement. The most common parent response for the best component of the program related to having both siblings included in the same program where they had the opportunity to engage together rather than being separated throughout the session. The most common parent response of components to improve related to increasing session length and/or program duration. Volunteers reported the best aspects of the program were the skills they learned and the relationship they were able to develop with the children by working one-to-one with the same children each week. The most common volunteer response about components to improve related to increasing session length and/or program duration, organization during the recreation time, and training for volunteers.

Discussion This initial investigation of the effects of a community-based support group showed significant improvements in the siblings’ adjustment and peer network as well as some changes in ASD knowledge and sibling–child with ASD interactions. The SSP was a broad program that included several components, namely, a support group for typical siblings of children with ASD, skills intervention to children with ASD, and recreation time for all children. These results contribute to the literature by evaluating a support program focused specifically on typical siblings of children with ASD and by providing direct behavioral observation outcomes.


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Sibling self-reports revealed decreases in depression and anxiety, though all the changes were not significant. Total CDI and negative self-esteem decreased significantly and decreases in interpersonal problems approached significance. Improvements in self-esteem and interpersonal problems fit with topics in the support group that focus on feelings and relationships. Mood, another subscale of the CDI, would also seem to be an area that might be affected by the discussions of feelings at the support group but scores did not decrease significantly. In contrast, anhedonia and ineffectiveness did not decrease significantly and we might not expect to be effected by the support group as structured. On the RCMAS-2, the only significant decrease was in physiological anxiety. We might expect worry and social anxiety to decrease more, given the topics discussed in the support group. It is not clear why only this subscale decreased significantly, but it is important to note that all subscale scores decreased except for defensiveness. The limited number of statistically significant changes may reflect the small number of participants in this study and suggest the need for further investigation with a larger number of participants. It is also worth noting that siblings presented with varying pretest levels of maladjustment. Notably, the majority of siblings did not score within the clinical range on the CDI at pretest or posttest and half of the siblings did not score within the clinical range on the RCMAS-2 at pretest or posttest. This is consistent with the findings about maladjustment in typical siblings in which some siblings show clinical maladjustment and others do not. It will be important to explore the effects of support groups with subgroups of siblings who present with different levels of maladjustment and create programs tailored to those different needs. The heterogeneity of sibling needs may also relate to the limited changes observed in this study. ASD knowledge increased, but this improvement did not reach significance. The improvement is promising and consistent with findings from Smith and Perry (2005). Clearly further gains could be made. Teaching siblings about ASD may be particularly challenging compared to teaching siblings about other developmental disabilities. ASD is a heterogeneous disorder with nonvisible characteristics that may be difficult to act out to help children understand the disorder. Lobato (1985) found siblings who attended a workshop gained the most in defining characteristics of disabilities that were the most concrete, visible, and able to be reenacted. It will be important to continue to develop a measure of knowledge about ASD to evaluate the effects of support programs as well as explore additional interventions to improve ASD knowledge in siblings. Siblings reported significant improvements in their peer network, an important outcome of support groups. Interestingly, on the parent, sibling, and volunteer social validity measures, all responses indicated positive views of the program and its goals and outcomes, but the lowest rating was for parent perceptions of their children’s peer network. Perhaps siblings gain a peer network within the support group (as reported by siblings) that does not generalize outside of the support group (as reported by parents). One benefit of support groups is creating those connections that exist outside of the time spent in the group. If parents’ ratings indicate that changes in peer network are not occurring outside the group, then the effects of the program over the long term will be limited. Such findings suggest the need to continue to make changes to the intervention provided to the siblings and determine ways to form lasting peer networks. Parents and volunteers also both reported duration of program as one area in need of improvement. The program was 7 weeks long. This fit within a semester so that students could volunteer to participate in the program while attending school. But, this duration may be too short and, in fact, may have limited the changes observed in this initial investigation. Expansion of the program to additional weeks would allow us to increase siblings’ exposure to more topics in more


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depth in the support group. For example, we could spend more than just portions of 2 weeks discussing autism knowledge, which may result in greater improvements in autism knowledge. In addition to self-report measures that are often used to examine the effects of support groups and sibling adjustment, we included objective, behaviorally defined measures of reciprocal interactions between sibling–child with ASD dyads. As with sibling adjustment and knowledge, we observed improvement in sibling interactions, though changes did not reach statistical significance. The significance of this finding is that, during game play situations, sibling interactions changed in a positive manner from the beginning to the end of the program. We observed more instances of siblings initiating, such as handing a game piece to one another or making comments about the game. We also observed a higher rate of siblings responding to those initiations, such as accepting a game piece or making a reciprocal comment. This is in contrast to Lobato (1985), the only study of a support group to use a behavioral observation measure, who found that parents’ observations of siblings’ interactions remained the same over the course of the intervention. These are important findings because they are direct measures of change in a treatment area that has been primarily evaluated using indirect measures of change. As with siblings’ self-report measures, the lack of significance may relate to the small number of participants and the wide ranges in social–communicative behavior demonstrated by both children with ASD and their siblings. In addition, as the number of responses increases, the opportunity to initiate decreases as an effect of the measurement procedure. For example, if the children continued to engage in social–communicative behaviors without a 5-s lapse, then all behaviors would be coded as responses. Whereas if there were breaks, then the first behavior after the 5 s lapse would have been coded as an initiation. Therefore, if the children become more fluid with their reciprocal communication, as the SSP attempts to achieve, then the lapse duration would decline and, as a result, initiation frequency would not increase at the same rate as responses. Although we observed changes with the behavioral measure, these changes must be viewed with caution. Mean percentages of interobserver agreement were above good, but the ranges for responses and positive affect included low percentages. Even coding from video recordings, some of the children’s responses were difficult to see. For example, if the child only looked to his/her sibling and gestured with his/her hand, one coder may have easily missed this. Changes in video recording should help improve IOA in the future. Coders were also not blind to the purpose of the study or whether they were viewing pre or post program videos. Continued improvements to the video recording and observational measure, including examining more aspects of behavior such as communicative function and problem behavior, as well as use of blind coders, will improve future use of behavioral observations to evaluate sibling support groups. The developmental level of the typical siblings and level of functioning and behaviors of the child with ASD may influence the extent of the effects of the SSP on behavioral observation or social–emotional measures. Since we did not assess sibling developmental level or symptom severity or overall functioning in the children with ASD prior to their enrollment, we cannot determine whether and how these characteristics moderate response to treatment. Future research should consider including additional measures for descriptive purposes for each child. Sibling support network, ASD knowledge, and adjustment are all areas that we expected to increase after participation in the support group. Coping is another area hypothesized to be affected by support group participation, but no measure of coping was included in this initial investigation. This is a targeted topic throughout the support group; siblings discuss feelings, learn that other children have similar circumstances, and practice positive ways to deal with difficult situations. It


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is unclear which components of the curriculum are likely to result in functional coping skills and continued research is needed to flesh out effective and nonessential components. Future research should investigate whether support groups are the most appropriate intervention to affect changes in sibling–child with ASD interactions. In this study, social–communication changes only approached significance. Another intervention strategy, sibling training, specifically targets interactions and directly teaches siblings strategies to facilitate interactions with their siblings with ASD (e.g. Celiberti and Harris, 1993; James and Egel, 1986; Schreibman et al., 1983). There is a large literature demonstrating the benefits of training typical siblings in strategies to facilitate interaction with their brother/sister with ASD (Ferraioli et al., 2012). Perhaps a combination of support to address various adjustment and knowledge needs with training to address skills to facilitate interaction would maximize improvement in sibling relationships. A combination of support and training may also be relevant when considering that not all typical siblings present with the same needs with respect to their sibling relationship. Some typical siblings show significant maladjustment and may be in need of extensive support group or even individual counseling. Others may not show such maladjustment, instead needing to learn ways to facilitate interaction. Our findings suggest ways to improve the sibling program in the future. A longer program would allow for more discussion of some topics such as autism and peer network that may improve outcomes. We may also create subgroups for siblings presenting with different needs. This may include different groups for siblings who present with clinical levels of maladjustment and who do not but need to learn ways to better interact with their sibling with ASD. Findings also suggest ways to improve future investigations of the sibling program including improving upon our existing measure of sibling knowledge about ASD and observations of sibling interactions while adding a measure of coping skills. Limitations of the current study can inform future research. The sample size was limited, and replications of this work will help to illuminate whether larger samples of families have similar outcomes. The current sample may have been too small to allow us to detect significant changes. Larger samples will allow researchers to determine whether the nonsignificant outcomes are truly unaffected or whether statistical power explains these findings. Additionally, although we have manualized the curricula, which is a first step to ensuring treatment fidelity, we did not directly measure the extent to which the curricula were followed. It will be important in future research to include treatment fidelity measures to ensure this broad intervention program provides the intervention intended. In addition, the study design was a pre–post comparison of one group who participated in the sibling program. This design cannot control for a host of confounds. Comparison to a control group who receives a different intervention or no intervention would provide a more rigorous demonstration of the effects of support groups on siblings of children with ASD. Given that 5-week test–retest reliability for the RCMAS-2 is 0.77 (Wisniewski et al., 1987), our correlations suggest that the changes observed for pretest to posttest may relate to the siblings’ involvement in the program rather than just test–retest or good subject tendency.

Summary These initial findings, though limited, suggest the need for further investigation of sibling support groups for brothers and sisters of children with ASD. Building on the limited sibling support group literature, this program and research contribute by focusing on siblings of children with ASD and including objective observations of sibling interactions in addition to self-report measures of adjustment.


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Acknowledgements We are grateful to the children, parents, and volunteers who devoted time and effort to this program. Special thanks to Nicole Neil for her analysis of the Autism Sibling Knowledge questionnaire.

Funding Support for this project was provided by a Professional Staff Congress-City University of New York Award (grant number PSCREG-41-866, 2010-2011), jointly funded by The Professional Staff Congress and The City University of New York, Autism Speaks (grant number 71354-0001, 2010-2011), and the Doug Flutie Jr Foundation for Autism (grant number 63595-0041, 2010).

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Appendix 1 Support group curriculum Purpose Week 1

Week 2

Week 3

Week 4

Week 5

Week 6

Week 7

Activity example

Meet and learn about the other siblings Three things in common game—Each sibling pairs up in the group. with another sibling. Each pair must find three things that they have in common and write them down on paper. After they finish, each pair shares what they learned with the rest of the group. Share things about themselves and their Similarities and differences game—Siblings grouped into families with the group. groups of two or three. Each sibling uses a different color marker. On a sheet of construction paper, the group draws a Venn diagram with an oval for each sibling. The siblings in each group discuss what the similarities and differences are about themselves and their families. They fill in the diagram showing their similarities and differences. Share how their siblings make them feel. Faces of feelings—On a worksheet with four blank faces, each child draws a different expression of how their sibling with autism makes them feel. Siblings share the different faces with the group. Identify and share good and bad feelings Leaf project—Siblings identify good and bad things about their sibling with autism. Good and bad things are about their siblings, specific examples identified on green and brown leaves, respectively. of home situations, and coping Example of good and bad things include things that strategies. their siblings do that they like, things they do with their siblings that they like, things that their siblings do that they don’t like or may upset them. Siblings share their leaves with the group and place the leaves on a group tree with the green leaves on the top of the tree and the brown on the bottom of the tree. Begin discussing autism and identify to Helping hands—On a picture of a hand in their workbooks, siblings write the name of one person whom the children can turn to for they could go to for help or to talk to about their help, advice or just to talk as one sibling on each finger. Siblings share their helping hands coping strategy. with the group. Autism knowledge Autism trivia—In teams siblings answer true /false to a series of questions about autism. Teams discuss questions to come up with a ‘‘team answer’’ Recap autism information. Good-bye cupcake party – Siblings decorate their own cupcakes with various toppings.


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Appendix 2 Sample instructional program for child with ASD Turn taking Response definition: Turn taking means (1) after another player says ‘‘your turn!’’, learner initiates turn, (2) moves game piece or manipulates game materials as per game rules, (3) says, ‘‘Your turn!’’, ‘‘Go!’’, and so on to other player, and (4) waits appropriately until his/her turn Materials: Board games or card games SD examples: Completion of one step of the task analysis sets occasion for responding Prompt fading criteria: At least 80% of 10 consecutive trials Procedure: Set up the board game. Provide SD ‘‘your turn’’ to the learner to occasion response chain completion. Use physical prompt fading hierarchy with time delay (full physical hand over hand, partial physical at elbow, gesture, 5 s time delay) for responses 1 and 3 of response definition. Use visual prompt fading hierarchy with time delay for response 2 of response chain. Provide prompt at target level within 1 s of completing prior response of chain. If error occurs at target prompt level, provide more intrusive prompt. Provide social praise for each correct, gradually fade to intermittent reinforcement schedule of increasingly independent responses. Reciprocal commenting Response definition: A correct response is defined as learner making a related comment to another person’s comment (rather than question) Materials: A variety of objects. SD examples: Statements with known personal information (e.g. ‘‘My name is Lauren.’’ ‘‘My brother’s name is James.’’) Prompt fading criteria: At least 80% of 10 consecutive trials Program Procedure: State the SD and immediately provide full visual prompt (entire reciprocal comment written out on index card). Begin with a continuous schedule of reinforcement with eye contact and social praise/smile, and so on, for making the statement. Fade prompt by erasing the last word of the prompt until no words remain. Then add a 3- to -5-s time delay before showing the visual card. Once child responds without the visual card, then the reinforcement schedule to a variable ratio schedule with no verbal social praise as long as the child maintains the responses.


Mathematical Word Problem Solving Ability of Children with Autism Spectrum Disorder and their Typically Developing Peers.

Predictors of sense of coherence in typically developing adolescent siblings of individuals with autism spectrum disorder.

Initial Stop Voicing in Bilingual Children With Cochlear Implants and Their Typically Developing Peers With Normal Hearing.

Sleep differences among children with autism spectrum disorders and typically developing peers: a meta-analysis.

Family function, Parenting Style and Broader Autism Phenotype as Predicting Factors of Psychological Adjustment in Typically Developing Siblings of Children with Autism Spectrum Disorders.

high-functioning autism and typically developing peers.

Social functioning using direct and indirect measures with children with High Functioning Autism, nonverbal learning disability, and typically developing children.

Hand leading and hand taking gestures in autism and typically developing children.

Siblings of Children with Autism: the Siblings Embedded Systems Framework.

Nutritional status survey of children with autism and typically developing children aged 4-6 years in Heilongjiang Province, China.

‘What Brings Him Here Today?’: Medical Problem Presentation Involving Children with Autism Spectrum Disorders and Typically Developing Children.

An Evaluation of Imitation Recognition Abilities in Typically Developing Children and Young Children with Autism Spectrum Disorder.

Mothers' expressed emotion towards children with autism spectrum disorder and their siblings.

Validating the Behavior Rating Inventory of Executive Functioning for Children With ADHD and Their Typically Developing Peers.

Developing and implementing a bereavement support program for college students.

Cognitive abilities in siblings of children with autism spectrum disorders.

Task structure complexity and goal neglect in typically developing children.

The attentional blink in typically developing and reading-disabled children.

Caregiver burden and sibling relationships in families raising children with disabilities and typically developing children.

Parents' strategies to elicit autobiographical memories in autism spectrum disorders, developmental language disorders and typically developing children.

Clinical correlates of parenting stress in children with Tourette syndrome and in typically developing children.

Recognition of emotion from facial expressions with direct or averted eye gaze and varying expression intensities in children with autism disorder and typically developing children.

Participation in extracurricular activities for children with and without siblings with autism spectrum disorder.

Iconicity influences how effectively minimally verbal children with autism and ability-matched typically developing children use pictures as symbols in a search task.