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Information Sharing Behavior among Parents of Children With Autism Spectrum Disorder (ASD)

Reviewed By: Jennifer Ford, Amanda Osman, Mayra Hernandez, Jennifer Cyphers, & Sara Gain

Link to article: https://digitalcommons.unl.edu/libphilprac/2596

There is a great deal unknown about autism spectrum disorder (ASD) in Indonesia even with the significant protection of rights for children with ASD in the country. It has been hypothesized that children living with ASD live more successful lives when they have parents actively involved in their well-being. This study was conducted to better understand the relationship between involved parents and their children who have ASD in Indonesia.
There were nine people entered in this survey and seven went on to complete it. The study sought to understand the difference between active parents and passive parents. The authors of the study examined how successful activity sharing was viewed, what values were shared, how approval-aggression impacted parents, how parents utilized technology, and their level of productivity. Influential factors on internal and external information sharing behavior were also evaluated. The passive parents all shared common low-intensity behaviors that point to their absorbing of information but choosing not to contribute to conversations. In contrast, the active parents shared a high intensity of information sharing and produced a significant amount of information on social media or in seminars.

Core Research Questions

· How can the information-seeking behavior among parents of children with ASD best be described?
o Can they be those behaviors that are broken down into typologies?
· What factors encourage or inhibit the occurrence of information-seeking behavior among ASD parents?
· What is revealed when the SET is applied to the information-seeking behaviors of ASD parents in Indonesia?
· What are the internal and external factors that affect the information-seeking behaviors of ASD parents?
· How does technology influence the information-seeking behaviors of ASD parents in Indonesia?


The study was conducted in Surabaya, Indonesia. The researchers identified the Autism Awareness Advocacy group as a source of information sharing by parents of children with ASD. A qualitative approach was used to conduct research with researchers asking questions to collect data to find correlations or meanings. The researchers used SET to examine the behavior of the participants. The SET theory argues that human relationships and social behavior are based on an exchange process. Participants in the study were chosen using a snowball technique. The technique starts with the selection of a key informant. This key informant is knowledgeable on the topic being studied and is acquainted with the members of the group. After the key informant is interviewed, the informant selects the next participant. The researchers interviewed nine participants of which seven qualified for and completed the study.

Findings and Conclusions

Much is written about ASD from the perspective of the autistic individual. This study aims to describe the information-seeking behaviors of the parents of children with ASD in an effort to discover factors that encourage and inhibit parental information-seeking behaviors as they seek to be support systems in the lives of their children with ASD.

A study of seven parental informants was conducted through personal interviews. Findings indicated a typology of information sharing behaviors among the parents that revealed differences between “active” parents and “passive” parents. Active parents demonstrated high sharing activities and sought new information to improve their children’s lives. Passive parents demonstrated low sharing activities, were fearful of implementing information they found, and wanted to avoid failure.

Findings also concluded that active parents continued to share their newfound information with others, while passive parents kept information they found about ASD to themselves. When active parents found and used their new information, they shared their information through technology, while passive parents maintained technological silence.

Conclusions suggest that active parents recognize a high value for their information-sharing efforts which motivates their continued use of active information sharing behaviors. The positive feedback loop was motivating and their efforts led to more engagement and opportunities to share information with others. Passive parents demonstrated low information sharing behaviors and did not seek to inform others about the information they discovered and did not participate in rewarding feedback from sharing information in personal communications or through online avenues.


The ultimate success of children with an ASD is dependent on the care and intervention they receive from their parents, guardians, and/or caregivers. The key to such success relies on the sharing of information between parents and multiple resources. Internal and external factors also influence information sharing. External factors include reward, trust, and family support while internal factors include: anger, satisfaction, and self-efficacy. Parents that passively share information become black holes. They may receive information but they do not share it with other parents or via social media. Whereas parents that actively share information are engaged with other parents, social media, their community, and sometimes even the world. These parents may speak at conferences, spearhead support groups, or advocate lawmakers for the cause.

The most significant factor that influences how parents share information is how others respond to the information being shared. Parents that had a positive experience when sharing information were more likely to continue the behavior. Those that had a negative experience sharing information were more likely to hold on to information. Finally, parents that actively shared information, engaged with other parents and helped their children participate in social behavior.

The study did not reveal the accuracy or the type of information being shared, only how participants felt after sharing information related to the topic of ASD.

This study can be used to inform librarians in designing library services for children with ASD and their parents or caregivers. Programs designed for children with ASD should include parental participation. Also, libraries can provide resources and opportunities for parents of children with ASD to interact with each other.


mutia, fitri and Atmi, ragil Tri. (2018). Information sharing behavior among parents of children with autism spectrum disorder (ASD). Library Philosophy and Practice (e-journal). 2596. Retrieved from https://digitalcommons.unl.edu/libphilprac/2596