Background: Communication via the internet is a regular feature of everyday interactions for most people, including autistic people. Researchers have investigated how autistic people use information and communication technology (ICT) since the early 2000s. However, no systematic review has been conducted to summarize findings.
Objective: This study aims to review existing evidence presented by studies about how autistic people use ICT to communicate and provide a framework for understanding contributions, gaps, and opportunities for this literature.
Methods: Guided by the Preferred Reporting Items for Systematic reviews and Meta-Analyses(PRISMA) statement, we conducted a comprehensive review across five databases, searching for studies investigating how autistic youth and adults use ICT to communicate. Authors reviewed the articles for inclusion and assessed methodological quality.
Results: Thirty-two studies met the eligibility criteria, including 19 quantitative studies, 12 qualitative studies, and 1 mixed methods study, with data from 3026 autistic youth (n = 9 studies) and adults (n = 23 studies). Ratings suggest that the evidence base is emergent. Underrepresented groups in the sample included autistic women, transgendered autistic people, non-White autistic people, low income autistic people, and minimally speaking and/or autistic adults with co-occurring intellectual disability. Three main themes emerged, including variation in ICT communication use among autistic youth and adults, benefits and drawbacks experienced during ICT communication use, and the engagement of autistic youth and adults in the online autism community.
Conclusions: Further exploration of the positive social capital that autistic people gain participating in online autism communities would allow for the development of strengths-based interventions. Additional research on how autistic people navigate sexuality and ICTs is needed to identify mechanisms for reducing vulnerability online. Additional scholarship about underrepresented groups is needed to investigate and confirm findings regarding ICT communication use for gender, racial, and socioeconomic minority groups.
Lay summary: What was the purpose of this study?: People use the internet to communicate (talk and connect) with one another. Some research has found that autistic people may prefer to communicate using the internet instead of in person. Over the past 20 years, there has been research about how autistic people use the internet. To understand what research has discovered so far, we collected published research about how autistic youth and adults use the internet to communicate.What did the researchers do?: We used scientific best practices as described in the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines to collect research about how autistic people us the internet to communicate. We included research that uses words (qualitative research) and numbers (quantitative research). First, we searched several places that list research studies to find research on autistic people and the internet. Then, we removed research that did not fit what we were looking for (our criteria). Finally, we then read the full articles, collected their most important findings, and looked for patterns.What do these findings add to what is already known?: Thirty-two studies met our criteria, including 19 studies that used closed-ended survey questions that tested relationships between variables, 12 studies that used open-ended interviews and looked for patterns and connections among participants, and 1 mixed methods study. In total, 3026 autistic youth of ages 10-17 years (number of participants = 9 studies) and adults (number of participants = 23 studies) participated in these 32 studies. We rated each of the 32 studies for quality and learned that the evidence base is preliminary, meaning that more rigorous high-quality studies are needed before we can be confident in the findings. We found three main themes: (1) differences in the ways that autistic youth and adults used the internet to communicate, (2) benefits and drawbacks experienced when using the internet to communicate, and (3) the engagement of autistic youth and adults in the online autism community. Some of the benefits of social media for autistic people include more control over how they talk and engage with others online and a greater sense of calm during interactions. However, findings suggest some drawbacks for autistic people, including continued feelings of loneliness and the desire for in-person friendships. Social media provides opportunities for autistic people to find others on the autism spectrum and form a stronger identity as part of the autism community. The study also showed that there is little research about autistic women, autistic transgender people, autistic racial/ethnic minorities, or autistic people from lower socioeconomic status (SES) groups.What are potential weaknesses of this study?: We only included research in scientific articles, and there may be useful information on this topic in books, student research, or online.How will these findings help young adults on the autism spectrum now or in the future?: This study can help identify gaps and opportunities for new research, support the importance of online autistic communities, and suggest possible training opportunities about how to support autistic people when they use the internet for communication.
Keywords: autism community; autism spectrum disorders; internet communication; social interactions; social media.
Copyright 2021, Mary Ann Liebert, Inc., publishers.