Developmental Neurorehabilitation

ISSN: 1751-8423 (Print) 1751-8431 (Online) Journal homepage: http://www.tandfonline.com/loi/ipdr20

Participation in extracurricular activities for children with and without siblings with autism spectrum disorder Christine Wigston, Marita Falkmer, Sharmila Vaz, Richard Parsons & Torbjörn Falkmer To cite this article: Christine Wigston, Marita Falkmer, Sharmila Vaz, Richard Parsons & Torbjörn Falkmer (2015): Participation in extracurricular activities for children with and without siblings with autism spectrum disorder, Developmental Neurorehabilitation, DOI: 10.3109/17518423.2015.1046091 To link to this article: http://dx.doi.org/10.3109/17518423.2015.1046091

Published online: 26 Jun 2015.

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Date: 12 November 2015, At: 01:41

http://informahealthcare.com/pdr ISSN: 1751-8423 (print), 1751-8431 (electronic) Dev Neurorehabil, Early Online: 1–15 ! 2015 Informa UK Ltd. DOI: 10.3109/17518423.2015.1046091

Participation in extracurricular activities for children with and without siblings with autism spectrum disorder Christine Wigston1, Marita Falkmer1,2, Sharmila Vaz1, Richard Parsons1, & Torbjo¨rn Falkmer1,3,4 School of Occupational Therapy and Social Work, Curtin University, Perth, Western Australia, Australia, 2School of Education and Communication, CHILD programme, Institution of Disability Research Jo¨nko¨ping University, Sweden, Jo¨nko¨ping, 3School of Occupational Therapy, La Trobe University, Melbourne, VIC, Australia, and 4Rehabilitation Medicine, Department and Health Sciences (IMH), Faculty of Health Sciences, Linkoping University & Pain and Rehabilitation Centre, UHL, Country Council, Linko¨ping, Sweden

Developmental Neurorehabilitation

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Abstract

Keywords

Objective: To compare the number, frequency, enjoyment and performance in extracurricular activities of siblings of children with autism spectrum disorders (ASD) to their typically developing (TD) peers, and to identify differences between actual and desired participation. Methods: A case-control study with 30 siblings of children with ASD and 30 siblings of TD children was conducted using the Paediatric Interest Profiles and a questionnaire. Results: Siblings of children with ASD participated in fewer extracurricular activities than those with TD siblings. ASD symptoms were significantly associated with the sibling participating in fewer extracurricular activities. Children with TD siblings had higher enjoyment scores in relaxation activities than children with siblings with ASD. Conclusion: While results were mainly positive, some differences indicated that having a sibling with ASD may impact participation in extracurricular activities. Assessments of participation barriers, as well as support to minimise participation restrictions among siblings of children with ASD are required.

Adolescents, adolescent leisure interest profile, engagement, leisure, paediatric interest profiles, preteen play profile

Introduction Autism spectrum disorder (ASD) is a life-long neurodevelopmental disorder characterised by impairments in verbal and non-verbal communication, difficulties with reciprocal social relationships and the presence of stereotyped behaviour, interests and activities [1]. ASD affects approximately 1/160 children aged between 6 and 12 years in Australia. This can be extrapolated to predict that there may be around 125 000 Australians living with ASD [2]. However, it has been suggested that as many as 1/100 boys and 1/500 girls are diagnosed with ASD before the age of 6 years [3]. Approximately 1/3 of people living with ASD require assistance with self-care, mobility, communication and emotional tasks on a daily basis. This assistance is primarily provided through informal caregivers, such as relatives or friends [4]. Social interaction and communication deficits, along with problem behaviours associated with ASD may create significant stress for all members of a family [5]. Parents of children

Correspondence: Torbjo¨rn Falkmer, School of Occupational Therapy and Social Work, Curtin University, GPO Box U1987, Perth, WA 6845, Australia. Tel: 61 8 9266 9051. Fax: 61 8 9266 3636. E-mail: [email protected]

History Received 28 October 2014 Revised 17 April 2015 Accepted 25 April 2015 Published online 24 June 2015

with ASD report having little time for family activities, as well as a lack of spontaneity, due to the stress associated with raising a child with ASD [6]. Issues, such as financial burden, greater investment in health care, time pressures, the constant need for vigilant parenting and fewer opportunities to work, may also have a significant impact on family quality of life [5]. However, when considering the effect on the siblings of these children, the findings are much less consistent. Positive findings include reports stating that siblings to children with ASD were well adjusted, had high levels of social competence [7] and were satisfied with their relationship with their sibling/s [8, 9]. Siblings have also reported that they perceived that their tolerance and awareness of others [10] and personal qualities, such as a compassionate nature, patience and persistence [11], were enhanced by their experience of having a sibling with ASD. In contrast, other research has found that siblings of children with ASD report more feelings of loneliness than siblings of children with no/other disabilities [12, 13], viewed their sibling as a burden [14], had decreased closeness in their relationships and report fewer family interactions [12] than siblings to children with Down’s syndrome. Parents report financial restraints, which limit family holiday and educational opportunities, as well as the purchase of material goods, an increased sense of responsibility to assist with caring, and a sense of embarrassment and ostracism by their peers [15]. The heterogeneity in these findings has been attributed to diverse data collection methods, or the wide age range of siblings in the samples,

Developmental Neurorehabilitation

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which may obscure relevant findings. Furthermore, it has been suggested that there are additional factors that impact on sibling wellbeing, that are currently under researched in existing literature. One such factor, which is of central interest in this study, is ‘participation in everyday activities’. The International Classification of Functioning, Disability and Health – Version for Children and Youth (ICF-CY) is a bio-psycho-social model that can be used to understand various perspectives of an individual’s functioning [16]. The ICF-CY has contributed to increased attention on participation, defined as ‘. . .involvement in a life situation’ (p.10), as an outcome. For children, this comprehensive definition incorporates participation in both school activities and in voluntary extracurricular and leisure activities [16]. The ICF-CY clearly suggests that both personal and environmental factors impact on an individual’s ability to be involved in everyday activities [16]. The family constitutes an important part of the environment and family characteristics have a strong impact on participation [17]. It has been reported that the presence of a family member with a disability often results in a changed participation pattern for family members [17]. However, in order to understand this influence, it is important to obtain an understanding of ‘typical participation’ and participation patterns across different groups [17]. The issue of participation has strong links with health [17–18] and well-being [17–19]. Participation in meaningful activities has been associated with a sense of competence, improved social, emotional and psychological skills and enhanced life satisfaction [17, 20, 21]. Furthermore, through participation, individuals are provided with the opportunity to discover preferences and associate with others (both adults and peers) and thereby generate social and human capital [21]. In leisure activities, participation has been found to be associated with decrease incidences of behavioural and emotional difficulties [17] and to enhance development in children and school engagement and academic accomplishments in adolescents [17–21, 23]. Although the positive links between participation and positive development in young people have been established, it is rare that studies regarding participation distinguish between the frequency (how often the child participates in activities) and the breadth (how many different activities in which the child participates) of participation [22]. It has been suggested that participation breadth has a stronger link to positive development in children than the frequency in which it occurs [22]. Most definitions of participation include some aspect of enjoyment/involvement and motivation [23]. Similarly, they also include the ability to exert one’s autonomy, or the ability to control one’s life as crucial aspects of participation [24]. Consequently, although some aspects of participation can be rated by others, participation includes subjective/perceived features that, wherever possible, should be rated by the individual [25, 26]. It has been reported that parents of siblings to children with ASD rated the siblings as having a lower rate of participation in social activities, hobbies and recreational classes, compared to children with typically developing (TD) siblings [27]. Furthermore, it has been reported that siblings of children with ASD do not present more depressive symptoms than siblings of TD children [28], however, another study reported

Dev Neurorehabil, Early Online: 1–15

that depression was more common in siblings of boys with ASD, when compared to siblings of TD boys [13]. For parents, having a child with ASD has been reported to elevate stress levels, especially in mothers, and this has been associated with a negative impact on the adjustment of the TD sibling of the child with ASD [29]. However, a recent study found that parental satisfaction, siblings’ gender and the families’ financial situation were even stronger predictors of adjustment in these siblings [30]. Siblings of children with ASD have also been reported to show the same level of adjustment in the home and school environment [31] and to consider themselves as more responsible and reliable [32] compared to siblings of TD children. Studies have shown that in measures of self-concept, siblings of children with ASD score higher than, or equal to, [28] siblings of TD children. Studies using parents’ rating of behaviour have not reported any differences between siblings of children with ASD and their control populations [28, 33]. Therefore, despite the discrepancies in existing research, it appears that behaviours do not differ between groups of siblings of TD children, children with ASD and children with other impairments [34]. Even though the existing research provides inconclusive findings regarding the impact of having a child with ASD on the TD sibling, the complexity of ASD may contribute to a family environment that set the sibling at risk for negative outcomes [34]. Evaluations of the sibling’s situation should therefore be considered as an important aspect of improving outcomes for all family members. The lack of research explicitly exploring participation outcomes for siblings of children with ASD is surprising considering the strong links between participation, health and wellbeing, which have been widely recognised in research related to children with [35–38] and without impairments [19]. Indeed, knowledge about how participation in extracurricular activities in siblings of children with ASD differs from that of a child with TD siblings is still very limited. Therefore, the aim of the current study was to explore the impact of having a sibling with ASD on the participation of TD children in extracurricular activities. The objectives of the study were to:  Identify the number and types of activities (the breadth of participation) that siblings of children with ASD reported that they engaged in, at home, at school and in the community, and compare this to a group of children with TD siblings only;  Describe the frequency, or how often, siblings of children with ASD participate in extracurricular activities and compare this to a group of children with TD siblings;  Identify the number and types of activities siblings of children with ASD reported that they do alone, with friends and with family and compare this to a group of children with TD siblings;  Describe how much siblings of children with ASD enjoy the activities they participate in, and compare this to a group of children with TD siblings;  Describe the perceived performance, or how well siblings of children with ASD report that they do an extracurricular activity, and compare this to a group of children with TD siblings; and

Comparison of siblings of children with and without ASD

DOI: 10.3109/17518423.2015.1046091



Identify the relationship between the participants preferred activity profile and actual participation in extracurricular activity, to uncover possible participation restrictions, and compare them to a group of children with TD siblings.

Methods This study included administering questionnaires to siblings of children with ASD, as well as their peers with TD siblings. The participants were aged between 8 and 17 years and lived in Western Australia. The peers with TD siblings were matched as closely as possible on age and gender with the participating siblings of children with ASD.

Developmental Neurorehabilitation

Participants A convenience sampling approach was used for recruitment. Siblings of children with ASD were recruited through the Curtin Autism Research Group’s list of 250 families, residing in Western Australia, all of whom had expressed their interest in participating in future research initiatives. All of the families on the list had at least 1 child with a recognised ASD diagnosis, which was confirmed by registering with the Disability Services Commission (DSC) in Western Australia. Inclusion and exclusion criteria The following inclusion and exclusion criteria were applied.

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Siblings were included if they met all of the following criteria:  aged between 8 and 17 years;  able to read and write in English;  available for a 40 min telephone interview between February and August 2014;  had a sibling with an ASD (cases); and  had at least one sibling, and parents reported no disabilities within either the participating child or their siblings (controls). Siblings were excluded if:  parents reported the presence of ASD or any other disability that may significantly impact function including; developmental disability, epilepsy, Attention Deficit and Hyperactivity Disorder (ADHD) in either the participating child (cases) or their siblings (controls); or  they spent less than 50% of their time living with their sibling. In total, 31 children from 28 families having siblings with ASD participated in this study. Based on the inclusion/ exclusion criteria, 1 participant was excluded due to the diagnosis of ADHD. The 30 siblings of children with ASD (63% male, n ¼ 9) had a mean age of 12.2 years. In addition, 30 children from 18 families with TD siblings only (53% male, n ¼ 6), mean age 12.4 years, participated; 1 child was recruited through a sibling of a child with ASD while rest of the control group were recruited through contacts of the researchers including colleagues and church communities. Table I outlines the demographic characteristics of the ASD

Table I. Demographic characteristics. ASD Variable Gender of child (n (%))

Age of child (months) M(SE) Parent Age (years) Family Income (n (%))

Relationship status

Categories

PPP

Comparison ALIP

PPP

M F Total number M Total number F

ALIP

9 (56) 10 (71) 9 (56) 7 (50) 7 (44) 4 (29) 7 (44) 7 (50) 19 16 11 14 124.88 (4.5) 172.00 (3.9) 122.31 (4.7) 178.71 (4.7) 146.9 (5.28) 148.6 (6.2) M (SE) 42.26 (0.84) 44.0 (0.67) $5,000-74,999 6 (20) 0 $75,000-149,999 14 (46.7) 14 (46.7) $150,000+ 10 (33.3) 14 (46.7) Unsure 0 2 (6.7) Married 20 (66.7) 25 (83.3) Member of unmarried couple 6 (20) 4 (13.3) Separated 2 (6.7) Divorced 1 (3.3) 1 (3.3) Widowed 1 (3.3) 2.67 (0.2) 2.73 (0.18)

Children in family (M(SE)) Parent level of education Year 11 or below (n (%)) Year 12 TAFE or alternative diploma Trade qualification Bachelor’s degree Postgraduate qualification Parent work hours Home ownership Own outright (n (%)) Own with mortgage Rent Occupy without payment

2 (6.7) 8 8 1 6 5 21.46 5

(26.7) (26.7) (3.3) (20) (16.7) (3.23) (16.7)

23 (76.7) 2 (6.7)

0 2 3 1 14 10 24.14 7

(6.7) (10) (3.3) (46.7) (33.3) (2.57) (23.3)

17 (56.7) 3 (10.0) 3 (10.0)

Test 

2

p Value 1

0.695

0.432 t-Test t-Test Fisher’s exact

0.695 0.828 0.118 0.021

Fisher’s exact

0.456

t-Test

0.118

Fisher’s exact

0.016

t-Test 2

0.520 0.218

0.281

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and comparison groups. There were no significant differences between groups in age or gender. Significant differences (p50.05) were, however, found for family income and parent level of education. Instruments

Developmental Neurorehabilitation

Pediatric interest profiles The Pediatric Interest Profiles (PIP) are self-report profiles of children’s play and leisure interests [39]. The Preteen Play Profile (PPP) and Adolescent Interest Profile (ALIP) versions of the PIP were used. A self-report measure was chosen because participation is multifaceted and partly subjective. Most definitions of participation involve both the completion of the activity, as well as the motivation behind the activity [23]. This subjective aspect of participation is best rated by the individual through self-report [25, 26]. The PPP is designed for children aged 9–12 years [39]. This questionnaire was also completed with children aged 8 years as it was thought that the pictures, as well as providing assistance in the form of a telephone interview, would make the assessment appropriate for this age group. The PPP comprised of 59 pictures of play/leisure activities and required the preteen to circle their responses to each activity. The questions asked what activities they do (types), how often they do the activity (frequency), how much they enjoy the activity (enjoyment), how well they do the activity (proficiency) and with whom do they undertake the activity (activity partner) [39]. Respondents reported on each of the domains of enjoyment (how much do you enjoy) and proficiency (how well) on a scale of 1 to 3 where 1 would indicate not very well or not very much, and 3 would indicate very well, or very much. Frequency of activity was also reported on a scale of 1 to 3, where 1 referred to once a year or more and 3 referred to once a week or more. The activity partner questions collected information regarding whether the child usually performed the activity alone, with friends, or with an adult. Overall, 8 categories of leisure activities were included: sports, outdoor, summer, winter, music, creative, socializing, and indoor activities [39]. Across all categories, the internal consistency has been reported to be reasonable which indicates a reliable use as a tool ( ¼ 0.72) [39]. Internal consistency for each category ranged from 0.16 to 0.71. Test/ retest reliability of the tool in a sample of 32 children aged 9 and 10 years was found to range between 0.05 and 0.94. For questions 1 (do you do this activity), 2 (how often), and 4 (how good are you at this activity), correlation coefficients were between 0.70 and 0.93 [39]. The remaining questions (how much do you like the activity, and who do you do the activity with), had low correlation coefficients [39]. The lowest correlation (r ¼ 0.05) was found for the questions relating to preteen activity partners in the winter activities category. These activities were changed in the questionnaire used in this study, as a result of the pilot test described below. The Adolescent Leisure Interest Profile (ALIP) comprised of 83 leisure activities in which adolescents are commonly engaged and is designed for use in adolescents aged 12 to 21 years. Like its preteen counterpart, the ALIP asks the

Dev Neurorehabil, Early Online: 1–15

respondents to report on their interest, how often they do the activity (frequency), with whom do they complete the activity (activity partner), how much they like the activity (enjoyment), and how well they perform the activity (proficiency) [39]. Respondents reported on each of these domains on a scale of 1–3, where 1 corresponded with not at all, and 3 corresponded with very much or very well. The domain of frequency (how often), was reported using a scale of 1 to 5, where 1 is never and 5 is 3–7 times per week. Internal consistency a coefficients of 0.93 and 0.87 have been reported for the total scores for the10 subscales based on the questions ‘‘how interested’’ and ‘‘how often’’, which exceeds the total score for acceptable internal consistency reliability [39]. Test/retest reliability, for the ALIP, ranged from 0.61 to 0.85 in a sample of 28 TD adolescents aged 14–19 for the first two questions [40]. The total question coefficients for ALIP have been reported to range between 0.83 and 0.93 [41]. Items were scored according to the instructions for the assessment [39]. Higher scores indicate higher levels of enjoyment, frequency or proficiency. Preferred activity profile An additional questionnaire based on the activities listed in the PPP and ALIP was designed by the researchers to allow exploration of self-determination and participation restrictions. The question asked how often the child would like to do the activity. The answers were rated on a 5-point Likert scale with the options ‘always’, ‘more often than now’, ‘as they do currently’, ‘more seldom than now’ and ‘never’. This addition recognised the dimensions of participation, such as selfselection of activities and self-determination, that have been described as essential aspects of participation [23, 26]. The added question took the participants’ ability to make choices into account by allowing for an exploration of the associations between what the sibling reported that they currently did and what they wanted to do. Socio-demographic questionnaire Socio-demographic information was gained through a short questionnaire provided to caregivers. Questions on the relationship status, employment status, family income, and the number of people in the household were based on a questionnaire used in a larger study on the cost of ASD in Western Australia [42]. Autism symptom checklist Parents of children with ASD were provided with a diagnostic checklist of DSM-IV/TR/ICD-10 items [43]. This consisted of 20 symptom characteristics divided into 4 domains: impairments in social interaction; impairments in communication; restrictive, repetitive and stereotyped patterns of behaviour, interest or activities; and the presence of impairments in at least 1 of the above before the age of 3 years. Parents were asked in the telephone interview if any of these criteria applied to their child with ASD, and the presence/absence of any specific characteristics were recorded by the parents answering yes/no. The internal consistency of the items on this checklist has been reported to be 0.84 [43].

Comparison of siblings of children with and without ASD

DOI: 10.3109/17518423.2015.1046091

Pilot study A pilot study using the PPP and ALIP was conducted with 10 TD children aged between 8 and 17 before the study commenced. The pilot study provided the opportunity for the researchers to adjust the activities in the questionnaire based on children in a West Australian context. As a result of the pilot study, four activities were changed on each profile. In the PPP, the four winter activities (play in snow, go sledding, ski or snow board and ice skate) were changed to tennis, netball, cricket, and jumping on a trampoline for cultural relevance. In this article, these activities are still categorised as winter activities. In the ALIP, cheerleading, sledding and skiing/snowboarding were changed to netball, surfing and cricket respectively. Internal consistency of the changed subscales (winter activities on the PPP and sport and outdoor activities on the ALIP) after adjustment ranged from 0.35 (winter) to 0.76 (outdoor). The pilot study also showed that the PPP was easily understood by the children aged eight years who participated in the pilot study.

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Procedure Figure 1 displays how information was gathered. Initially, 63 of the 250 families provided permission for the researcher to contact the TD sibling. After the preliminary contact with the 63 families, 43 families agreed to receive further information. Of the 43 questionnaires that were sent out, 31 siblings to a child with ASD agreed to participate. Recruitment of children with TD siblings was conducted and aimed to purposively create a matched group. The same procedure regarding the distribution of information material, questionnaires and telephone interviews was followed for the children in the control group. Telephone interviews, in which the interest profiles, parent information sheets and additional questionnaires were completed, reduced the dropout rate, confirmed that questionnaires were answered by the child and ensured correct interpretation of the questions. Guidelines outlined by the tool developers were followed to ensure consistency of cues to all participants and to minimise bias. Data analysis The Kolmogorov–Smirnov test was conducted on all data to test for normality. For total scores, all were normally distributed except adolescent frequency, preteen frequency and adolescent enjoyment. The total number of activities was not normally distributed for adolescents in the categories of relaxation, community and intellectual activities. The total

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number of activities was not normally distributed in the categories of sport, outdoor, creative, lessons/classes and summer activities for preteens. Due to this, as well as the small sample sizes, non-parametric tests were primarily used for analysis. When analysing demographic and clinical characteristics, Chi-square tests and Fisher’s exact tests were performed for categorical data, in order to test for between group differences. Independent samples t-tests and Mann–Whitney Utests were also performed. A cumulative score of ASD symptoms was calculated. The total number of activities in each category, as well as the overall total of activities performed was calculated. Descriptive statistics were used to describe the activity profile of the participants. Independent samples t-tests and the Mann–Whitney U-test were performed on the means or medians of each category for the number of activities, and the proficiency, enjoyment and frequency scores for each category, to determine the differences between the groups of children with and without siblings with ASD. Where no activities were completed in a particular category, results were excluded from analysis. While Bonferroni adjustments of a-levels is usually undertaken on a set of tests where correlation is expected, each of the tests in this study was essentially measuring a different aspect of participation in activities of interest in its own right, therefore for the purposes of this study, Bonferroni corrections were not applied [44]. Consequently, the a-level was set to 0.05. When analysing the differences between the percentage of activities completed alone, with friends or with family, the General Estimating Equation (GEE) was performed, in order to take into account the multiple variables for the same participant (up to 36 activities across 60 participants). Pearson’s correlations were run to determine the strength and direction of associations between activity components of the PPP and ALIP and age, gender and number of ASD symptoms. Spearman’s rho was used to calculate the associations between current frequency of participation and the participants preferred activity profile. Overall, 36 activities were assessed in both the ALIP and the PPP. The scores for frequency in the ALIP were recorded to match the PPP. In the PPP, 2 pairs of items (skating and skateboarding; board games and card games) were combined to match the ALIP. Total scores were calculated for the number, frequency, proficiency and enjoyment of these activities.

Figure 1. Flow chart of procedures.

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Figure 2. Number of activities engaged in by adolescents, preteens and combined in each activity, by group (* ¼ p50.05). Error bars represent standard error.

Ethical considerations Written informed consent was obtained from the primary caregiver, as well as written or verbal assent from the sibling participating in the study. All participants were made aware that they were not obliged to participate and were free to withdraw from the study at any stage without providing any justification and without incurring any negative consequence. At all stages, the study conformed to the National Health and Medical Research Council Code for the Responsible Conduct of Research [45]. Ethical approval was obtained from the

Curtin University Human Research Ethics Committee (HR 213/2013) in Western Australia.

Results Number of activities (types/breadth) Figure 2 displays the number of activities engaged in by adolescents, preteens, and adolescents and preteens combined. The total number of activities adolescents engaged in ranged from 18 to 74. Non-parametric tests found no

DOI: 10.3109/17518423.2015.1046091

significant difference between siblings of children with ASD and siblings of children with TD siblings for any category or in the total number of activities in which the participant engaged. The total number of activities preteens engaged in ranged from 17 to 49. Non-parametric tests found that preteens who had siblings with ASD did significantly fewer (p ¼ 0.043) leisure activities than their peers with TD siblings only. Across the 36 items that appeared in both questionnaires, there was no significant difference between groups in the mean number of activities participants engaged in (range: 12–35). A moderate negative correlation existed between the number of leisure activities the participant engaged in and the number of ASD symptoms their sibling had (r ¼ 0.395; p ¼ 0.031).

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Frequency (intensity/how often?) Mean scores for the frequency of participation for adolescents ranged from 1.57 to 3.40. No significant difference was found between adolescent siblings of children with and without ASD in the frequency of engagement in all leisure activities, or in any single category. Mean scores for frequency of participation in the total number of activities for preteens ranged from 1.77 to 2.79. Preteens who had siblings with ASD engaged in leisure activities more often than preteens who had TD siblings only (p ¼ 0.049). Across the 36 items in both questionnaires, no significant difference between groups was found. Refer to Figure 3 for total scores in each category. Activity partner After GEE analysis, no significant differences were found between groups in the ratio of activities undertaken with family or friends or alone. The participants with a sibling with ASD spent between 56.6% (PPP) and 60.5% (ALIP) of their time with friends, 42.8% (PPP) and 40.4% (ALIP) of their time with a family member and 38.4 % (PPP) to 32.2% (ALIP) of their time alone. Proficiency (how well?) Figure 4 displays the mean self-rated scores of performance for adolescents and preteens who have siblings with or without ASD. Mean scores for self-rated proficiency in adolescents ranged from 1.76 to 2.96. There was no significant difference between adolescent siblings of children with and without ASD. Mean scores for self-rated proficiency in preteens ranged from 2.06 to 2.96. There was no significant difference between preteen siblings of children with and without ASD in the overall score, however preteens with TD siblings rated themselves as better at lessons/classes than children with siblings with ASD (p ¼ 0.021). In the 36 items across both questionnaires, mean scores for how well the child rated themselves in doing the activity ranged from 1.82 to 3.00. No significant difference was found between groups. A weak negative correlation between the age of the child and their mean score of proficiency was found (r ¼ 0.280; p ¼ 0.030).

Comparison of siblings of children with and without ASD

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Enjoyment Figure 5 displays the enjoyment scores for adolescent and preteen siblings of children with and without ASD. Mean scores for enjoyment for adolescents ranged from 2.14 to 2.88. No significant difference between groups was found in the overall score for enjoyment. However, adolescents with siblings with ASD enjoyed relaxation activities less than adolescents with TD siblings (p ¼ 0.016). Mean scores for enjoyment in preteens ranged from 2.18 to 3.00. No significant difference between groups in the overall enjoyment score was found, but preteens with TD siblings enjoyed the winter activities more than preteens with siblings with ASD (p ¼ 0.029). Across the 36 activities in both questionnaires, overall enjoyment scores ranged from 2.00 to 3.00. No significant difference was found between siblings of children with and without ASD. A negative correlation was found between the age of the child and their overall enjoyment score (r ¼ 0.255; p ¼ 0.049) (a comparison between the mean scores and standard errors of the groups with regard to all activities is presented in the Appendix). Preferred activity profile Correlation between actual and the preferred activity participation profiles within the group of children with siblings with ASD was significant for 21 activities (p50.05) (Table II). All significant relationships were positive. Strength of correlation within significant values of Spearman’s rho was strong ( ¼ 0.7–0.9) for two activities (drawing or painting; and going to the mall or shopping), moderate ( ¼ 0.4–0.6) for 17 activities, and weak ( ¼ 0.1–0.3) for the remaining one activity (gardening). Correlation coefficients are reported in more detail in Table II.

Discussion Overall impact of having a sibling with ASD on participation Overall, no association was found between restricted participation and having a sibling with ASD. In the group of preteens, this association was present, however, the effects were minimal. These findings are positive and may indicate that the parents to the participating siblings in the current study are able to successfully balance the needs of their child/ ren with ASD and the needs of their TD child/ren. However, the fact that ASD severity was correlated with fewer extracurricular activities undertaken was congruent with previous research which found that having a child with ASD is associated with significant financial strain, and further that ASD-related costs are strongly associated with the cumulative presence of ASD symptoms [42, 46, 47]. These financial restraints, as previously reported by parents, are likely to limit opportunities for participation [15]. Furthermore, families with children with ASD report significant stress and that ASD symptoms and behaviour severity are significant predictors of that stress [48]. This indicates that, in order to provide a family oriented service, assessing the sibling’s participation profile in low-income families and in families with a child with severe ASD is required.

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Figure 3. The frequency of participation in activities engaged in by adolescents, preteens, and combined. Adolescents: 1 ¼ never, 2 ¼ less than once a month, 3 ¼ once or twice a month, 4 ¼ less than 3 times a week, 5 ¼ 3–7 times a week. Preteens and combined: 1 ¼ once a year or more, 2 ¼ once a month or more, 3 ¼ once a week or more.

A significant point to note is that differences in participation were mainly found in the children aged 8–12. This indicates that participation restrictions may be more frequent in younger children possibly due to their dependence on adults for providing opportunities to participate in a number

of their activities. It may also be due to the fact that autism symptoms and maladpative behaviours decline through adolescence and adulthood [49]. Younger children are likely to have siblings with ASD who are younger, and therefore have more maladpative behaviours and autism symptoms and as a

DOI: 10.3109/17518423.2015.1046091

Comparison of siblings of children with and without ASD

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Developmental Neurorehabilitation

Figure 4. Performance ratings in extracurricular activities engaged in by adolescents, preteens and combined, by group. 1 ¼ not very well, 2 ¼ well, 3 ¼ very well (*p50.05).

result, are likely to experience more restrictions to their participation. Frequency, breadth and intensity of participation Preteen siblings of children with ASD participated in fewer extracurricular activities than their peers with TD siblings.

This finding is congruent with parent reports of siblings of children with ASD that suggest they participate in fewer social activities, hobbies and recreational classes [27, 32]. A reduced number of activities is associated with a smaller breadth of participation. Preteen siblings of children with ASD also engaged in extracurricular activities more often than their peers with TD siblings. This indicates higher

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Figure 5. Enjoyment ratings by adolescents, preteens, and combined, in extracurricular activities, by group. 1 ¼ not very much, 2 ¼ somewhat, 3 ¼ very much (*p50.05).

intensity of participation and previous research have reported that intense participation in extracurricular activities may result in lowered academic performance in primary school children [50].

Both breadth and intensity of participation are important factors for child development and have positive relationships with wellbeing, higher academic orientation, stronger interpersonal bonds and less risk behaviour. However, it appears

Comparison of siblings of children with and without ASD

DOI: 10.3109/17518423.2015.1046091

Table II. Spearman’s correlation between preferred and current participation.

Developmental Neurorehabilitation

Activity

ASD (rho, p)

Comparison (rho, p)

Baseball 0.475 (0.008)** 0.625 (50.001)*** Basketball 0.348 (0.060) 0.204 (0.280) Soccer 0.633 (50.001)*** 0.621 (50.001)*** Football 0.579 (0.001)** 0.750 (50.001)*** Hockey 0.308 (0.098) 0.643 (50.001)*** Netball 0.553 (0.002)** 0.719 (50.001)*** Camping 0.470 (0.009)** 0.189 (0.317) Hiking 0.267 (0.154) 0.277 (0.139) Fishing 0.457 (0.011)* 0.662 (50.001)*** Gardening 0.390 (0.033)* 0.641 (50.001)*** Canoeing Rowing Sailing 0.508 (0.004)** 0.344 (0.063) Cricket 0.432 (0.017)* 0.541 (0.002)** Horse Riding 0.302 (0.105) 0.515 (0.004)** Cycling 0.477 (0.008)** 0.687 (50.001)*** Skating Skateboarding 0.540 (0.002)** 0.569 (0.001)*** Swimming 0.324 (0.081) 0.560 (0.001)*** Tennis 0.451 (0.012)* 0.377 (0.040)* Gymnastics 0.248 (0.187) 0.188 (0.320) Martial Arts 0.000 (1) 0.417 (0.022)* Watching TV 0.422 (0.020)* 0.337 (0.069) Listening to music 0.316 (0.089) 0.153 (0.419) Talking on the phone 0.353 (0.055) 0.653 (50.001)*** Playing videogames 0.512 (0.004)** 0.458 (0.011)* Reading 0.240 (0.201) 0.435 (0.016)* Computers 0.403 (0.027)* 0.083 (0.661) Drawing or painting 0.795 (50.001)*** 0.582 (50.001)*** Cooking or baking 0.440 (0.015)* 0.231 (0.218) Making jewelry 0.596 (0.001)** 0.632 (50.001)*** Playing an instrument 0.418 (0.022)* 0.616 (50.001)*** Hanging with friends 0.589 (0.001)* 0.137 (0.472) Going to movies 0.091 (0.634) 0.143 (0.450) Going out to eat 0.074 (0.697) 0.003 (0.988) Shopping 0.726 (50.001)*** 0.201 (0.287) Going to the beach, 0.255 (0.173) 0.002 (0.991) lake or river Playing board games or 0.243 (0.196) 0.195 (0.301) card games Scouts 0.221 (0.241) 0.432 (0.017)* *p50.05, **p50.01, ***p50.001.

that the breadth of participation has a more robust relationship with these variables than intensity [22, 51, 52]. Breadth of participation is particularly important in younger children as it provides more opportunities for belonging; supportive relationships; support for self-efficacy; chances for skill building; and a sense of safety [53]. Therefore, while it is positive that the preteens who had siblings with ASD were engaged in activities more often than the preteens who had only TD siblings in the current study, it is worth noting that the siblings to children with ASD had a smaller breadth of participation in the activities, and may still be at risk of negative outcomes associated with reduced participation. Consequently, professionals should be aware that when assessing a child’s participation in extracurricular activities, both the breadth and the intensity should be taken into account, in order to obtain a comprehensive participation profile. Furthermore, the association between specific activities and positive/ negative developmental outcomes has not been thoroughly explored [22]. Hence, more research is needed to explore the association between specific activities and participation breadth, frequency and wellbeing in TD children and in children who might risk participation restrictions, for example, siblings of children with ASD. This research could

11

result in more specific knowledge that may guide parents and professionals in how to support a healthy participation pattern in children. It was expected that siblings of children with ASD would engage in fewer activities with parents or other family members, due to the increased familial burden associated with having a child with ASD. However, there appeared to be no difference in the preference of activity partner between children with and without siblings with ASD. This finding contrasts with previous research, where caregivers of children with ASD have reported having less time for TD siblings, due to the child with ASD’s increased need for care and attention [47], and that siblings of children with ASD spend less time engaging in shared activities with their sibling than children with siblings with other disabilities [12]. Enjoyment and perceived performance of participation An unexpected finding of this study was that adolescent siblings of children with ASD enjoyed relaxation activities significantly less than their peers with TD siblings. There is little research available to explain this difference. The relaxation activities included watching TV, listening to music, lying in the sun and playing video games. A potential reason for this may be due to the sibling with ASD’s TV viewing or video game preferences. Therefore the TD sibling may have less control over these activities and thus do not enjoy the activity as much as their peers, who may have a greater influence over this choice. The fact that siblings of children with ASD wanted to watch TV more often than they currently did, may also indicate that siblings of children with ASD may have a higher need for alone time, or have a higher level of stress. Although not explored in the current study, it should be noted that other possible reasons may be that siblings of children with ASD have been reported to experience more depressive symptoms, [13, 28, 33] and may perceive having a responsibility for their sibling [10, 34, 54] and as a result, may enjoy relaxation activities less than their peers. Part of these reasons could be considered as having a seriously negative impact on the sibling’s wellbeing. Hence, practitioners involved in family-centred services should be aware that if reduced enjoyment in activities that should be relaxing is discovered, this may warrant further investigation into the siblings’ stress level and further assessment of the sibling’s situation is required. There was no significant difference in how well siblings of children with ASD rated their performance in activities to how well siblings of only TD children rated their performance. This finding contrasts with previous research, which suggests that children who have siblings with ASD have a more positive view of themselves in terms of academic performance, behaviour and intelligence [28], but agreed with other research, which found no significant difference between siblings of children with high functioning autism and TD children in terms of their self-concept [27]. However, it was noted that overall, younger children tended to rate themselves as better at the activity than older children. Self-rated performance is related to self-concept, and is an important part of child development. This finding is congruent with other research which shows that children tend to rate

12

C. Wigston et al.

themselves more poorly compared to others as they get older, and that children’s self-perception of their competence tends to be more accurate as they get older [55–57].

Developmental Neurorehabilitation

Limitations There are several limitations to this study. The instruments used lacked information on psychometric properties. However, very few instruments are available that allow young children to self-report on their participation in activities [58] and therefore, the overall choice of instruments was limited. The lack of valid and reliable instrument indicates that future studies exploring the psychometric properties of measures of children’s/adolescents’ self-rated participation are warranted. The sample size of 30 participants in each group may limit the ability to generalise the findings to a larger population. Small sample sizes may imply that possible differences were not detected due to type II error. However, despite the small sample sizes, a standardised difference (Cohen’s d) of 0.74 was detected when the a-level was set to 0.05, and a b-level of 0.2 was used. This is considered to be a large standardised difference between groups and is commonly regarded as sufficient for a study of this kind. Furthermore, since the participation in extracurricular/leisure activities is unknown, the case-control design allowed for exploration of possible differences between the two groups despite the relatively small sample sizes [59], which can also inform further studies in this area. Due to the method of sampling, a possible selection bias also needs to be considered. No data were available on those who chose not to participate in the research and therefore it is difficult to know in which direction bias may have occurred, given that participants in the current study were recruited from a pool of families that had already expressed an interest in research participation. It is therefore possible that these families are more aware of the impact that a child with ASD may have on their family than the ‘typical’ family of a child with ASD. The differences between siblings of children with ASD and their peers with TD siblings may be larger in a more representative sample. No independent diagnostic screening was undertaken by the researchers to confirm the ASD diagnosis in the siblings with ASD. However, the participants with a sibling with ASD in this study were recruited from a Western Australia Disabilities Services Commission (DSC) registered participant list. Inclusion on this list is based on a confirmed professional diagnosis of at least one child in the family. Furthermore, all parents confirmed their child’s ASD diagnosis during the telephone interview and noted the child’s Autism symptoms on the diagnostic checklist of DSM-IV/TR/ ICD-10 items. The aim of this study was to explore the participation in extracurricular activities of a sibling to a child with any ASD; it was therefore considered unethical to conduct a re-evaluation of the child with ASD’s diagnosis. The activities investigated as part of the questionnaire were limited in number, and may not be representative of all activities, in which children or adolescents living in Western Australia engage in on a regular basis. Although the activities were adjusted following a pilot study, several activities were completed by none or very few children, and therefore may

Dev Neurorehabil, Early Online: 1–15

not be culturally appropriate activities within a West Australian context. A significant difference existed between the group of siblings of children with ASD and siblings of TD children in family income and educational level of the mother. Studies on children with and without disabilities have shown that children have lower participation diversity and intensity in families with lower income or lower respondent education level [60, 61]. However, on average, having a child with ASD is associated with lower family income, and despite the differences, the families participating in this study had a higher income and level of education, than those participating in another study in a West Australian context [42]. It is not possible to know whether socio-demographic factors may be more influential in participation than having a sibling with ASD based on the results of the current study, and further research in this area is recommended. Finally, the study relied on the child remembering activities they had completed in the past year. This may skew their perceptions about performance and enjoyment, and may not provide an accurate reflection of their true participation. Consequently, further research that explores perceived participation in ‘real time’ could add crucial information regarding participation in siblings of children with ASD [62].

Conclusion This study provided a snapshot of the differences in participation in children with and without siblings with ASD. While there were differences between children with ASD and their peers with TD siblings, in terms of the number of activities engaged in and their enjoyment, differences were small and may not be a result of having a sibling with ASD. However, the results clearly indicated that ASD severity is of importance when considering participation in a TD sibling. This study indicates that assessment of exposure to a variety of activities and siblings’ level of engagement or enjoyment should be considered, in order to detect participation restrictions, particularly in those siblings of children with more severe ASD, and in younger children. This research is a first attempt to provide information that could assist educators and health professionals to identify where siblings of children with ASD may be at risk of participation restrictions. Further research that focuses on perceived participation in everyday activities as an outcome to explore barriers and enablers to participation is recommended. Furthermore, parents’ perception about their ability and resources to accommodate for the sibling’s participation needs could be studied, in order to explore how this may affect parental stress.

Acknowledgments The authors thank the participating siblings and their parents. We would also like to thank our knowledgeable colleagues Alison Blane and Melissa Black for the language editing.

Declaration of interest The authors report no conflicts of interest.

DOI: 10.3109/17518423.2015.1046091

Developmental Neurorehabilitation

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Appendix. Means and standard error. ASD Variable

Profile

Category

Number of activities

ALIP

Sport Outdoor Exercise Relaxation Intellectual Creative Socializing Club/Community Total Sport Outdoor Summer Winter Indoor Creative Lessons/Classes Socializing Total

PPP

Frequency

Com ALIP

PPP

Sport Outdoor Exercise Relaxation Intellectual Creative Socializing Club/Community Total Sport Outdoor Summer Winter Indoor Creative

Comparison

No of items in category

No. of participants

Mean (SE)

No of participants

8 11 10 8 9 9 18 10 83 5 9 8 4 9 7 7 10 59 36 8 11 10 8 9 9 18 10 83 5 9 8 4 9 7

14 14 14 14 14 14 14 14 14 16 16 16 16 16 16 16 16 16 30 14 14 14 14 14 14 14 14 14 11 16 16 14 16 15

2.93 (0.58) 3.79 (0.54) 3.71 (0.54) 6.29 (0.40) 7.00 (0.45) 3.93 (0.64) 11.86 (0.76) 1.57 (0.31) 41.21 (2.82) 1.56 (0.35) 4.50 (0.45) 4.00(0.43) 1.56 (0.24) 7.06(0.43) 3.44 (0.46) 1.38 (0.27) 5.00 (0.32) 27.13 (1.52) 19.53 (0.72) 1.79 (0.15) 1.63 (0.10) 1.89 (0.14) 3.64 (0.17) 3.50 (0.18) 1.99 (0.16) 2.13 (0.09) 1.34 (0.07) 2.19 (0.08) 2.40 (0.14) 2.39 (0.08) 1.81 (0.13) 2.30 (0.12) 2.64 (0.07) 2.35 (0.12)

14 14 14 14 14 14 14 14 14 16 16 16 16 16 16 16 16 16 30 14 14 14 14 14 14 14 14 14 13 16 16 13 16 15

Mean (SE) 3.50 3.79 3.36 6.21 6.57 4.42 13.64 2.28 43.79 1.94 5.00 5.31 1.81 7.69 4.19 2.19 5.56 31.50 21.70 1.81 1.58 1.71 3.55 3.29 2.34 2.20 2.15 2.32 2.62 2.32 1.68 2.39 2.52 2.27

(0.60) (0.83) (0.48) (0.28) (0.53) (0.57) (0.74) (0.51) (3.18) (0.39) (0.56) (0.49) (0.32) (0.29) (0.50) (0.31) (0.29) (2.02) (0.96) (0.16) (0.15) (0.11) (0.13) (0.14) (0.20) (0.12) (0.72) (0.12) (0.17) (0.11) (0.09) (0.16) (0.09) (0.11)

t-Test p Value

MW p Value

0.496 1 0.624 0.885 0.542 0.566 0.104 0.240 0.532 0.483 0.489 0.053 0.537 0.237 0.278 0.056 0.199 0.094 0.075 0.903 0.781 0.309 0.640 0.349 0.192 0.104 0.275 0.360 0.257 0.640 0.293 0.639 0.285 0.621

0.541 0.603 0.804 0.635 0.541 0.635 0.150 0.427 0.635 0.539 0.119 0.051 0.590 0.341 0.270 0.061 0.270 0.043 0.116 0.804 0.376 0.427 0.454 0.265 0.214 0.112 0.571 0.839 0.449 0.616 0.270 0.458 0.270 0.653 (continued )

Comparison of siblings of children with and without ASD

DOI: 10.3109/17518423.2015.1046091

15

Appendix. Continued

ASD Variable

Profile

Category Lessons/Classes Socializing Total

Proficiency

Com ALIP

Developmental Neurorehabilitation

PPP

Enjoyment

Com ALIP

PPP

Com

Sport Outdoor Exercise Relaxation Intellectual Creative Socializing Club/Community Total Sport Outdoor Summer Winter Indoor Creative Lessons/Classes Socializing Total Sport Outdoor Exercise Relaxation Intellectual Creative Socializing Club/Community Total Sport Outdoor Summer Winter Indoor Creative Lessons/Classes Socializing Total

No of items in category

No. of participants

7 10 59 36 8 11 10 8 9 9 18 10 83 5 9 8 4 9 7 7 10 59 36 8 11 10 8 9 9 18 10 83 5 9 8 4 9 7 7 10 59 36

12 16 16 30 12 13 13 14 14 13 14 11 14 11 16 16 14 16 15 12 16 16 30 12 13 13 14 14 13 14 11 14 11 16 16 14 16 15 12 16 16 30

Comparison

Mean (SE) 2.38 2.19 2.69 2.28 1.78 1.95 2.21 2.47 2.17 1.96 2.35 2.24 2.22 2.08 2.37 2.45 2.32 2.65 2.43 1.71 2.57 2.47 2.41 2.23 2.33 2.34 2.36 2.21 2.23 2.50 2.25 2.36 2.58 2.35 2.53 2.43 2.70 2.56 2.58 2.67 2.59 2.54

(0.18) (0.11) (0.08) (0.05) (0.22) (0.13) (0.09) (0.11) (0.07) (0.15) (0.10) (0.10) (0.07) (0.15) (0.08) (0.10) (0.16) (0.08) (0.11) (0.20) (0.12) (0.06) (0.06) (0.14) (0.14) (0.11) (0.06) (0.12) (0.13) (0.16) (0.16) (0.05) (0.13) (0.07) (0.09) (0.12) (0.07) (0.10) (0.16) (0.07) (0.06) (0.05)

No of participants 15 16 16 30 13 12 13 14 14 14 14 13 14 13 16 16 13 16 15 15 16 16 30 13 12 13 14 14 14 14 13 14 13 16 16 13 16 15 15 16 16 30

Mean (SE) 2.26 2.06 2.47 2.20 2.02 2.04 2.10 2.56 2.21 2.28 2.45 2.28 2.33 2.18 2.43 2.49 2.60 2.60 2.52 2.17 2.59 2.49 2.45 2.47 2.38 2.38 2.64 2.32 2.39 2.65 2.52 2.52 2.71 2.51 2.57 2.80 2.65 2.58 2.68 2.68 2.62 2.61

(0.20) (0.07) (0.06) (0.04) (0.12) (0.08) (0.13) (0.08) (0.04) (0.12) (0.11) (0.19) (0.08) (0.09) (0.08) (0.10) (0.10) (0.08) (0.09) (0.12) (0.09) (0.06) (0.05) (0.11) (0.11) (0.09) (0.08) (0.09) (0.16) (0.07) (0.17) (0.07) (0.11) (0.08) (0.08) (0.07) (0.06) (0.10) (0.08) (0.08) (0.06) (0.04)

t-Test p Value

MW p Value

0.681 0.292 0.049 0.194 0.348 0.571 0.485 0.441 0.679 0.105 0.470 0.838 0.315 0.522 0.631 0.774 0.166 0.644 0.571 0.049 0.894 0.760 0.588 0.178 0.76 0.782 0.010 0.469 0.465 0.142 0.276 0.059 0.421 0.144 0.754 0.012 0.624 0.917 0.929 0.899 0.709 0.344

0.905 0.094 0.043 0.112 0.390 0.844 0.373 0.541 0.910 0.185 0.511 0.494 0.511 1 0.642 0.780 0.259 0.564 0.624 0.021 0.897 0.669 0.690 0.168 0.894 0.880 0.016 0.635 0.325 0.164 0.207 0.137 0.424 0.160 0.867 0.029 0.590 1 0.792 0.867 0.696 0.395

Abbreviations: Com-combined (36 activities from both profiles). ALIP – Adolescent Leisure Interest Profile. PPP – Preteen Play Profile. SE – Standard Error. MW – Mann–Whitney U-Test.