The Autism Society Event and Education Recordings Archive

Family Cohesion

Autism spectrum disorders (ASDs) are developmental disabilities that cause extensive impairments in social interaction and communication, affecting 1 out of every 150 children in the United States (CDC, 2007).  Pilowsky and colleagues (2004) suggest that siblings of children with autism may be affected by more than genetic factors.  They suggest that being raised with a sibling with a severe disability may impact the ‘typical’ sibling’s social and emotional adjustment.  As described by Berk (2006) family is the first context for psychosocial development, and family experiences have long-lasting effects on coping, adapting to change, feelings of self-worth, moral decision-making, and academic achievement.   Sibling relationships, particularly the relationship with an older sibling, can support expansion of social competence (Berk, 2006).  Research supports both adjustment and maladjustment of siblings of children with ASD.  It has been reported that siblings of children with ASD view their relationship more positively when there was a large age difference between siblings; when they perceived minimal parental favoritism; and when they were older than the sibling with autism (McHale et. al, 1984).  It is clear that parents are unable to control some of these factors but they can encourage family cohesion, open communication, positive attitudes, and use of appropriate resources for family support (McHale, et. al, 1984). Family cohesion was defined in 1984 as “emotional bonding that family members have toward one another” (Olson, Russell, and Sprengkle, p. 60). 

Play

One way parents can encourage family cohesion, open communication, and positive attitudes is through play (Parham & Fazio, 2008).  Yet, in a qualitative study on the past and present experiences of 14 siblings of children with autism and mental retardation, Bendrix, Norstrom, and Sivberg (2006) found that families have less recreational time because of lack of respite care.
In 1949 Norma Alessandrini said, “Play is a child’s way of learning and an outlet for his innate need of activity.  It is his business or his career.  In it he engages himself with the same attitude and energy that we engage ourselves in our regular work.  For each child it is a serious undertaking not to be confused with diversion or idle use of time.  Play is not folly.  It is purposeful activity”.  For almost 100 years play has been recognized as important by prominent researchers and theoreticians in occupational therapy. 
Within education, in recent years play has been treated as an expense, something that can be cut to help repair budgets or to leave more teaching time.  Parham and Fazio note that play has even been said to be irrelevant and developmentally trivial (Robin, 1977).  Yet, it is reported that children learn best through active play (Jensen, 1998).  Children need to play, something as simple as going down a slide can help support sensorimotor skill development (Parham & Fazio, 2008).  Parham and Fazio (2008) note that play can include social interaction.  To date, no studies have quantified the effect of having a sibling with ASD on participation in play and leisure within the family context. 

Hypothesis

We hypothesize that having an older sibling with an ASD changes the opportunities to participate in play and leisure occupations, including those engaged in with family.   Exploring this aspect of the effect ASD on children and families may highlight the need for expansion of family-centered Occupational Therapy services for the support of psychosocial health of all members of the family.

Study Design

This will be a cross-sectional, group comparison study examining participation in play and leisure amongst children, 6- to 10-years old of both genders, with older siblings where the experimental group of children with an older sibling who as an ASD will be compared to a control group of children with an older typically developing sibling.  Using a standardized, self-report assessment (see Main Outcome Measure) we will describe not only the quantity and diversity of play and leisure occupations in which the younger siblings participate but also whether they participate in these occupations with their siblings and families or outside of the home.  Data will be assessed for skewness and comparison of the play and leisure participation in the two groups will proceed using appropriate statistical tests. We will control for other factors that may affect child participation in play and leisure through use of the Parent Stress Index (Abidin, 1995) and the Hollingshead Four Factor Social Index of Social Status (Hollingshead, 1972).  Linear regressions will be used, as appropriate, to determine the contribution of the control factors to variance observed in play and leisure participation. 

Participants

We will conduct individual assessments of two groups of 6- to 10-year-old children:  those with an older sibling with an ASD and those with a ‘typical’ older sibling.  Children and families will be recruited to participate through local service providers and organizations.  Children with siblings who have an ASD may themselves represent an at-risk population.  According to Toth and colleagues “siblings, as a group, were below average in expressive language and composite IQ” (Toth et al., 2007).  Given this, all participants will be screened for neurological impairments, using the Quick Neurological Screening Test II (Mutti et al., 1998). 

 Data collection

The child assessments will be administered individually at each participant’s home at a time that is most convenient for the family.  We will attempt to keep the testing room quiet by using a sitting room or another room in the house that is quiet but if there is a door, it will be open to ensure the child’s comfort.  Parents or legal guardians will be asked to complete the Parenting Stress Index with regard to one of the two children (the younger sibling (participant) or the older sibling), randomly selected, and a demographic questionnaire in advance of the visit.  At the time of the visit, the researcher will administer informed consent and then collect these surveys.  During the visit, the same caregiver will be asked to complete the Parenting Stress Index with regard to the other child.  The child assessments will be 60-90 minutes in duration and the parent surveys 30 minutes for a total time commitment of 1.5 to 2 hours per family.

Main Outcome Measure

Our hypothesis will be explored through use of standardized, self-reports of engagement and interest in play and leisure occupations the Children’s Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC). Both the CAPE and the PAC are appropriate for use with children and young adults ages 6-21.  The CAPE is an assessment that uses 55 cards picturing play and leisure occupations for children to rate regarding how much they participate in each occupation; with whom and where they participate; and how much they enjoy it. These 55 items were constructed after a longitudinal study was done with 427 children with disabilities ages 6-15 on a 49 item scale, including 6 items that were added reflecting activities that were common suggestions from the participants.  The responses are scored on three levels, (1) overall scores, (2) domain scores, and (3) activity type scores.  The Overall Score is based on all of the items, in the CAPE and in the PAC combined.  The Domain Scores reflect the classification of formal and informal activities.  The Activity Type Scores refer to the five types of activities.  The 55 occupations are categorized into 5 types of activities: recreational, active physical, social, skill-based, and self-improvement which were determined through principal component analyses (King et al., 2004).  

The PAC, corresponds to the CAPE using the same three levels of measurement, but instead of being a direct measure for participation in activities it measures preference for activities (King et al., 2006).  The PAC measures for this by showing the participants activity cards and asking them how much they would like to do such an activity (King et al., 2004). We will collect data and reporting findings for both the CAPE and the PAC.  The information from the PAC determines participants’ preferences which will allow us to determine if siblings of autism have different interests than siblings of typically developing children perhaps accounting for any differences in participation.

Conclusion

This study is a work in progress and the results of this study may have implications for the design and implementation of Occupational Therapy services that support participation in play and leisure occupations for families that have children with ASD.  This research study will be presented in a poster presentation in April of 2009 at the American Occupational Therapy Association.