Can you imagine how boring life would be as a child if all you did was go to school, do homework, sleep and do it all over again? Luckily, extracurricular activites provides one with something fun and exciting to look forward to, aside from school and is parent approved. Unforunately, not all children are able to participate in extracurricular activities as certain factors such as having a sibling with autism may hinder them from doing so. Autism spectrum disorder (ASD) is a life-long neurodevelopmental disorder distinguished by restrictions in verbal and non-verbal communication, complications with social relationships and the maifestations of cliche’ behaviours, interests and activities. Not only do these restrictions effect the individual directly however, it effects their siblings as well leaving them less likely to participate in extracurricular activites then typically developing (TD) children with siblings without autism.
Summary of the Article
ASD not only effects the individual directly however, it effects those closest to them. ‘Social interaction and communication deficits, on top problem behaviors associated with ASD may create significant stress for all members of a family ‘ (Karst, & Van Hecke, 2012). Hutton and Carson (2005) reported that parents with children with ASD experienced higher levels of stress effecting the family quality life. Some of these stress factors included finanical burden, little time for family activites, vigilant parenting, and fewer opportunities to work. Although there are several consistent reports and finding on the effects of ASD and parents, siblings on the other hand are not so consistent. Like many findings siblings have both their pros and cons. Kaminsky and Dewey (2002), stated that siblings to children with ASD were satisified with their relationship with their sibling as it has enhanced social competence, awareness of others and their personal qualities such as compassionate nature, patience and persistence. In contrast, Knott, Lewis and Williams (1995), compared children with autism to those with other disorders such Down’s syndrone and reported ASD siblings felt the loneliest out of all other disorders, referred to their sibling as a burden, and reported fewer family interactions than siblings to children with Down’s syndrome.
Participation in extracurricular activities for children with and without siblings with autism spectrum disorder (2017), had six objectives which were to identify the number and types of activities siblings engaged in at different environments, illustrate activity enjoyment, describe how often ASD siblings participated in extracurricular activities, identify the number and activites ASD siblings enjoy doing alone, with friends and with family, describe performance perspectives on self, and lastly identify perferred activities and actual participation in extracurricular activities to reveal particiation resticition while all comparing these individuals to children with TD siblings.
Wigston, Falkmer, Vaz, and Parsons (2017), gathered results using The International Classificatoin of Functioning, Disability and Health-Version for Children and Youth (ICF-CY). The ICF-CY is a biopsycho-social model that is used to analyze and understand perspectives of children and youth functioning.Some of the many findings while using this tool include both personal and environmental factors impact the opportunity to engage in everyday activities, while disrupting not only the child’s participation however, participation patterns for family members.
This study consisted of siblings of children with ASD and TD siblings living in Western Australia between the ages of 8 and 17 years of age. A convenince sampling approach was used to reruit siblings of children with ASD through the Curtin Autism Research Group list in Western Australia. All 250 families listed on the Curtin Autism Research Group had at least one child on the spectrum which was confirmed through registeration requirements with the Disability Services Commission (DSC) in Western Australia. In total 30 children from 28 families participated in this study. All participants selected had to be able to read and write in English, available for a 40 minute phone interview, have a sibling with ASD, or had at least one sibling without any disablities. Self reporting questionnaires such as The Pediatric Interest Profile (PIP), The Preeteen Profile (PPP) and Adolescent Interest Profile (ALIP) were used to collect data on children’s play and leisure interest.
Considering the PPP is designed for children from ages 9-12 years old, 8 year olds were provided with assistance in the form of a telephone interview. The PPP was composed of 59 pictures of play/leisure activties which required participants to circle their response for each activity. This questionnaire aided in indentifying the types of activities , their frequencies, personal enjoyment, proficiency, and activity partners. The ALIP on the other hand is designed for individuals between the ages 12-21 and is composed of 83 pictures of leisure acitivites. Although the ALIP is composed of more questions it serves the same purpose as its counterpart, which is to indentify the types of activites, their freqencies, personal enjoyment, proficiency and activity partners.
To test normality, the Kolmogorov-Smirnov test was conducted on all data. The Chi-square tests and Fisher’s exact tests were conducted for group differences and categorical data. Descriptive statistics were used to illustrate the activity profile of participants. The General Estimating Equation (GEE) was conducted to analyze the differences between percentages of activities perferred alone and those with friends and family. Pearson’s correlations were used to determine the assoications with strength and directions between activities of the PPP and ALIP as well as age, gender and number of ASD syptoms. Frequency of participation and particpiants preferred activities was collected and calculated through Spearman’s rho. A total of 36 activites were analyzed in both the ALIP and the PPP.
Types of activities participants engaged in, their frequencies, activity partners, proficiency, enjoyment and preferred profile activity were all analyzed. Non-parametric test found no significant difference between ASD and TD siblings in the total of number of activities participants engaged in. No significiant difference was found in the frequency of participation. Adolescent participation mean scores ranged from 1.57 to 3.40. GEE results also pointed to no significant diference between acitivity partners. Overall, there was no significant difference in how participants rated themselves in acitivites however, lessons/classes were rated higher by TD siblings than ASD siblings. In regards to enjoyment findings illustrated that TD siblings enjoyed relaxation activites more than those with ASD siblings as well as winter activities. Overall, there was no significant difference found in enjoyment. Siblings with ASD showed a significant correlation between actual and preferred activity particpation. ‘Strength of correlation within significant values of Spearman’s rho was strong (ρ = 0.7–0.9) for two activities (drawing or painting; and going to the mall or shopping), moderate (ρ = 0.4–0.6) for 17 activities, and weak (ρ = 0.1–0.3) for the remaining one activity (gardening).’ (Wingston, et. al, 2017)
Overall this study found no association between having a sibling with ASD and restricted participation. Although, researchers found an assoication in the group of preteens the effects were minimal. This current study illustrates the understanding that parents have in regards to having balance in a child’s life. However, this study also supports previous research finding which found that having a child with ASD is associated with finanical burdens. Parents with ASD children reported finanical restriants play a role in limiting opportunities for extracurricular activites. This was illustated through correlations between ASD and engagement of fewer extracurricular activities. This study also relieves that siblings of children with ASD enjoyed relaxtion activities significantly less than TD siblings. These activites consisted of watching TV, listening to music, and playing video games.
Several limitations were presented in this study. Considering that there are not many instruments that allow young children to self report the instrument choice was limited. Also, it is more likely to not detect differences due to a sample size of 30 once compared to a larger same size. Another limitation presented was the method in which the participants were selected. All participants selected had a personal interest in research participation, therefore these families were more aware of the impacts of living with ASD. The activites presented were not a representative of all activities as the questionnaire that was adminstered missed several Western Austrialia activites that most engage in on the daily. Finally, this study relied on the memory of young children as they had to remember details about an activity that they completed a year ago.
In conclusion, this study provided evidence of differences in participation in children with siblings with and without ASD. Although some differences were presented in this study they were minimal and may not be a result of having a sibling with ASD. However, it should be noted that results illustrated that a child’s severity is important when considering engagement of an activity. Overall this study can serve as a useful tool for educators and health professions to help locate where siblings of children with ASD may be at risk of participation restrictions
Analysis of the Article
This article had some strengths as well as weakneses. Some of the strengths consisted of tackling such a topic that has limited resources. This article gets its audience thinking about how stress factors such as finanical burdens, limited family interaction, vigilant parenting, and fewer opportunities to work limit the opportunities for children to engage in extracurricular activites. In contrast, some weaknesses were the sample size and requiring young children to self-report experiences that they had a year ago. This study consisted of 30 individuals which eliminates statistical power. Considering the sample size is small this increases the likelihood of a Type II error resulting in skewed data.
This aritlce can be useful for my profession in Applied Behavior Analysis as it is a snapshot of how children with ASD siblings are effected by the disorder in their everyday life. In this field therapist are always figuring out how to be a support system to parents whose children have autism however, there are not too many support groups for ASD siblings. The study takes the lens off the parents and focus on the effects of ASD siblings through actual self reports.The information collected support previous findings from 1995 that due to finanical restrictiions children with siblings who have ASD are not able to participate in extracurricular activites due to certain stress factors that inturrept the quality of family living.
In conclusion, this scholary article collected data from children ages 8-17 through self reports to illustrate the disconnect between extracurricular activities and siblings while exposing the many different stress factors that hinder children from being able to participate. Although, this study lacked a large sample size data collected helped shred light on possible restrictions families undergo hindering children in engaging in extracurricular activites.
- Hutton AM, Caron SL. (2005). Experiences of families with children with autism in rural New England. Focus on Autism and Other Developmental Disabilities 2005;(20):180–189
- Kaminsky L, Dewey D.(2002). Psychosocial adjustment in siblings of children with autism. Journal of Child Psychology and Psychiatry 2002;(43):225–232
- Karst JS, Van Hecke AV. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review 2012;15:247–277
- Knott F, Lewis C, Williams T. (1995). Sibling interaction of children with learning disabilities: A comparison of autism and Down’s syndrome. Journal of Child Psychology and Psychiatry 1995(36):965–976
- Kaminsky L, Dewey D. Psychosocial adjustment in siblings of children with autism. Journal of Child Psychology and Psychiatry 2002;43:225–232
- Wigston, C, Falkner, M, Vaz, S., Parsons R., Falkner, T. (2017). Participation in extracurricular activites for children with and without siblings with autism spectrum disorder. Developmental Neurorehabilitation Jan 2017, Vol. 20 1, p25-39 15p.