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    Autism Learning Line (A.L.L.): An Online Community for All Who Are Touched by Autism

    Autism Learning Line (A.L.L.) and the Benefits of Online Community

    Stages Learning Materials is excited to announce the launch of Autism Learning Line (A.L.L.), an online community designed to support parents, teachers, therapists, homeschoolers, and anyone else touched by autism. Working with interns from the Harvard Graduate School of Education, and after several years of planning, Stages is happy to have found a way to give back to our community. This new support group connects with our Autism Resources and Community blog that was launched 5 years ago and now has over 500 articles to support families, educators, and therapists. Our autism blog received the award for Top 25 Autism Blogs of 2020 by Action Behavior Center and is also the winner of the Feedspot Top 50 Blogs on Autism Award.

     

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    Why Launch a Private Autism Support Group?

    Based on research and planning coming out of the Technology, Innovation, Education program at Harvard, A.L.L. is designed to support a diverse group of members who parent or work with children with autism. During an initial needs analysis and environmental scan, we concluded that though there were public Facebook groups and groups on other broad based platforms, there was a strongly felt need in the autism community for a specialized online group where this community could find a sense of common purpose and connect freely without interference from marketers or others outside the community. A.L.L. encompasses smaller areas of interest within the autism community: for teachers, parents, homeschoolers, therapists and others. Users can also create their own groups for specific areas of interest related to autism, where they can share ideas and support one another.

    A.L.L. also grew out of work on Stages’ Global Autism Awareness Project (GAAP). Also a project that stemmed from work at the Harvard Graduate School of Education, GAAP recognizes a need for more information on autism outside of the United States. International students from Harvard helped translate some of our most popular articles about autism to different languages to reach countries including China and Pakistan, and some Stages products have been translated into 17 different languages such as our Lang-O-Learn Cards. Over 50,000 people in China each year read our translated article: Recognizing Signs and Symptoms of Autism. We are also currently translating many of the over 500 articles on our collection into Spanish.

     

    Social Support and Positive Impact

    Making-videocall-536794Researchers have found that online communities of interest can provide social support and have a positive effect on self-efficacy, self-esteem and well-being.[i] One of the key factors that leads to a successful online community experience is for the community to have a shared focus on a specific interest or need that gives people a reason to belong and a feeling that they are not alone.[ii] Online communities exist for every topic imaginable, and joining and participating in a community can provide many social and psychological benefits.

    One of the benefits of A.L.L. is that it is not simply an open Facebook or other social media group where anyone can join. Members of A.L.L. have to opt in and there is a great value to groups where people who belong are all experiencing similar challenges, such as parenting a child with autism or providing education or therapy to a child with autism. Research shows that benefits come from participation in online communities, but participation can take many forms including exchanging information, providing support to others, or sometimes just contributing a simple thumbs up to someone’s post!

     

    Feeling a Sense of Community

    We take joining an online community for granted now, but special interest online web-based communities date back only to the 1990s. Online communities connect people who share a common interest or purpose spanning an enormous range of topics from knitting, to ping pong, to cancer support groups, to caring for and educating children with special needs. Researchers note that these communities share significant experiences and provide important meaning for their members.

    Successful communities often provide emotional connections and feelings of belonging: Members feel a “sense of community.”[iii] All successful communities help fulfill a need. Communities help us stay informed and help us feel safe and most importantly, they help us know that we are not alone. For many people who parent or work with children with autism there is a strong need for social support and acceptance. Online communities such as A.L.L. can help fill that need.

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    Participation = Belonging = Better Psychological Health

    The key component of an online community is participation: both as a contributor and as someone who uses the resources in the community. Research has found that people who participate the most in an online community feel the most connected to the community and benefit the most.[iv] Participation in online communities promotes psychological well-being and there is a great deal of research, especially in studies of patient health communities, that indicate a positive correlation between the amount of participation in an online community and psycho-social well-being over time. [v]

    For our Autism Learning Line we did a soft launch in March of 2020. In the first week, we had several hundred members join up and start participating and now the community has over 800 members! Clearly there was a need out there and we continue to see membership climb, especially for our teacher, parent, and therapist groups.

     

    The Importance of Connectedness

    clasped-hands-541849_640Community psychologists have found that the importance of being connected to others is essential to our sense of well-being. Researchers note that this connectivity involves two aspects:

    • A sense of community that comes from a perception of similarity with others and a sense that we are part of a larger community.
    • Social support that can provide a buffer against feelings of anxiety, depression and stress.

    There is a large body of research that indicates that social support is a key factor in maintaining psychological and physical health.[vi] Social support systems provide protective effects and contribute to resilience. Social support systems can actually result in better health and lessen the impact of any trauma a person is experiencing. [vii] People who have good social support systems – both online and offline – actually experience greater longevity. Relationships with others, in general, seem to buffer the impact of challenging life events and circumstances. Research has demonstrated that people who interact with others and have close supportive relationships are happier, healthier, and have less stress. [viii]

     

    Increased Well-Being and the Benefits of Belonging

    There are different types of support provided by online communities, and in a study of members who belonged to disability-specific online support groups, researchers found that participants in the community received the following types of support:

    • Personal advice
    • Moral support
    • Practical help
    • Companionship

    The researchers’ key finding for members who belonged to online support groups was that there were significant effects for improving:

    • Self-acceptance, meaning positive evaluations of oneself
    • Personal relations, in terms of the quality of relationships with others, and
    • Personal growth, meaning a sense of continued growth and development as a person.[ix]

    In a study looking at online support groups for people experiencing hearing loss, researchers found that creating social connections with others who were experiencing similar circumstances had a positive impact on their self-esteem.[x]

    Researchers investigating the psychosocial benefits of belonging to an online breast cancer community found that a significant number of women participating (ranging from 1/3 to ¾ of the women) benefit from:

    • Exchanging information (getting or giving)
    • Social support
    • Increased coping abilities
    • Improved mood
    • Decreased psychological distress
    • Improved strategies for managing stress.[xi]

     

    The Importance of Ownership  

    People who interact regularly on an online community begin to feel a sense of ownership and belonging that contributes to greater self-esteem, higher levels of satisfaction, and increased feelings of inclusiveness. In a survey of 300 people from a range of backgrounds, researchers found that those who regularly interacted with an online community feel ownership of that community and are protective of the community and provide others outside the community with positive information about the community. This survey also found that time spent with other community members online was perceived as even more valuable than the content provided by the community;[xii] it seems that above all, while information sharing is helpful, it’s all about the connection.

    For families of children with autism, in particular, there is a strong need for support and community. Parents face many obstacles in getting the proper services and education for their children with autism and in making treatment decisions. Knowing that you are a part of a caring and helpful community of families and professionals struggling with similar challenges goes a long way toward relieving stress and helping community members know that they are not alone in their struggles. We hope the AutismLearningLine will provide its members with a sense of community and connectivity. We look forward to seeing you on ALL! Come join us.

     

    References:

    [i]Chao-Min ChiuHsin-Yi HuangHsiang-Lan ChengPei-Chen Sun (2015). Understanding online community citizenship behaviors through social support and social identity. International Journal of Information Management 35(4): 504-519.

    [ii] Preece, Jenny. (2000). Online Communities: Designing Usability and Supporting Sociability. New York: Wiley.

    [iii] Blanchard, Anita & Markus, M. (2004). The Experienced “Sense” of a Virtual Community: Characteristics and Processes. Database, 35. 64-79. 10.1145/968464.968470.

    [iv] Laine, Michael & Ercal, Gunes & Luo, Bo. (2011). User Groups in Social Networks: An Experimental Study on YouTube. Proceedings of the Annual Hawaii International Conference on System Sciences. 1 - 10. 10.1109/HICSS.2011.472.

    [v] Lampe, C., Ellison, N., & Steinfield, C. (2007). A familiar Face(book): Profile elements as signals in an online social network. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (pp. 435–444). New York: ACM Press.

    [vi]  Ozbay, Fatih, Johnson, D.C. et al. (2007). Social support and resilience to stress: from neurobiology to clinical practice. Psychiatry 4 (5).

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921311/

    [vii]  Ozbay, Fatih, Johnson, D.C. et al. (2007). Social support and resilience to stress: from neurobiology to clinical practice. Psychiatry 4 (5).

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921311/

    [viii] Louise F. Pendry, Jessica Salvatore (2015). Individual and social benefits of online discussion forums. Computers in Human Behavior, 50 (211). DOI: 10.1016/j.chb.2015.03.067

    [ix] Obst, Patricia & Stafurik, Jana (2010) Online we are all able bodied: Online psychological sense of community and social support found through membership of disability-specific websites promotes well-being for people living with a physical disability. Journal of Community and Applied Social Psychology, 20(6), 525-531.

    [x] Obst, Patricia & Stafurik, Jana (2010) Online we are all able bodied: Online psychological sense of community and social support found through membership of disability-specific websites promotes well-being for people living with a physical disability. Journal of Community and Applied Social Psychology, 20(6), 525-531.

    [xi] Shelly Rodgers, Qimei Chen (2005). Internet Community Group Participation:
    Psychosocial Benefits for Women with Breast Cancer, Journal of Computer-Mediated Communication, 10 (4).  https://doi.org/10.1111/j.1083-6101.2005.tb00268.x

    [xii] Lee, Jumin & Suh, Ayoung. (2015). How do virtual community members develop psychological ownership and what are the effects of psychological ownership in virtual communities?. Computers in Human Behavior. 45. 10.1016/j.chb.2014.12.002.

     

    Topics: Autism and Language, Advice for Parents and Caregivers, COVID-19 Emergency Response, Parents, Articles

    Leslie Stebbins, M.Ed. M.L.I.S.

    Written by Leslie Stebbins, M.Ed. M.L.I.S.

    Leslie Stebbins has more than twenty-five years of experience in higher education with a background in library and information science, instructional design, research, and teaching. She has a Masters in Education from the Technology Innovation & Education Program at the Harvard Graduate School of Education and a Masters in Information Science from Simmons College. For twenty years she created and led information literacy and research skills programs for students and faculty at Brandeis University. Currently she is the Director for Research at Consulting Services for Education (CS4Ed). Her clients both at CS4Ed and as an independent consultant have included Harvard University, the California State University Chancellor's Office, the U.S. Department of Education, Facing History and Ourselves, Tufts University, and the Joan Ganz Cooney Center. She is the author of numerous articles and four books including Finding Reliable Information Online: Adventures of an Information Sleuth. For more about Leslie visit LeslieStebbins.com.