Introduction
Social media can connect people to communities, potential employees, and other resources crucial for successfully navigating the world. However, people with autism experience more online harassment and harm than the general population (2:35). Page acknowledges preferences for person-first and identity-first language within the autism community, noting that her studies assume the language her participants use (3:50). The presenter outlines data collection methods for a recent survey study including interviews, observations, and feedback from autistic people (with and without intellectual disability), support networks (family, service providers), and field sites (day programs, community members) (4:45).
For people with autism, the most frequently cited positive outcomes of social media were social connection, especially with people who moved away, and interest-based immersion, or the ability to focus on a special interest with others who are passionate about the same thing (7:38). Negative outcomes include risk of physical harm due to misinterpreting intent, social/relational damage due to not understanding social etiquette, and psychological harm like increased anxiety from intense rumination about online communications (10:17).
Many of these outcomes, Page explains, could be avoided if social media were designed with neurodiversity in mind. She describes common autism characteristics not supported by social media rules or interfaces:
Number 1: Literal interpretation of the interface
Interpreting things in a literal sense is a common characteristic of people with autism. The speaker explains how taking things at face value can lead to dangerous interactions with deleterious parties online (12:07). Many study participants report that it can be difficult to understand what labels like “friend” on social media mean. For example, assuming that a “Facebook friend” is the same as a “real-life friend” can create tensions in relationships (14:07).
Number 2: Suggestions as instructions
Many autistic people follow online prompts as if they were directions. For example, the Facebook status section asks, “What’s on your mind?” or the comments section asks, “Respond” or “Write an Answer.” When read as instructions, these can lead to oversharing about work or personal life online, affecting employment and relationships (16:00). Likewise, in the profile section, many people with autism share too much sensitive information, assuming that if it asks for an email or current residence, that you have to provide it (18:50).
Number 3: Always engaging
Page explains that numerous study participants cited a need to respond to everything that appears on the interface, which can lead to anxiety and stress (19:55). Similarly, many autistic adults report feeling stressed by other people’s conflicts and often comment on the amount of drama online. The speaker highlights that the ability to “just ignore” it does not apply to many autistic people’s lived experiences (21:45). Respondents also describe uncertainty and anxiety related to the ambiguity of check marks and a lack or misinterpretation of feedback from other users online (22:45).
Number 4: Clear expectations
In many cases, people with autism expect friends to be completely accessible online and feel like they’re not liked when their friends post photos of them hanging out with other people. Page reminds viewers that social media allows us to see things we wouldn’t otherwise, which makes it challenging to manage the feeling that you’re friends, so you should be doing everything together (25:15). The speaker notes single rule-based decision-making and how this can be dangerous. For example, a female only accepts friend requests from other females and not males (thinking this will keep her safe), although people frequently lie about their identities online. Many autistic people also assume a single audience and may post things publicly that could lead to unintended consequences (27:30).
Chapman summarizes attendees’ responses to the first part of the presentation (29:17).
How adults with autism are supported by their networks
Page explains that most study participants were open about online issues with caseworkers and care staff by default. They even talk openly about instances where they may have done something unusual and ask their parents’/caretakers’ opinions (30:55). Support networks are critical to the well-being of autistic adults, and siblings can be a huge source of support because the power dynamic is balanced. The speaker describes how communities can detect problems and work together to support autistic young adults. For example, someone says, “Hey, you should check on [name], they’ve been making some odd posts online.” (32:35).
Having people who understand privacy rules and online safety involved in care strategies for autistic youth and adults is critical (34:15). Many study participants cited rules about what to share and who to friend that are externally defined (e.g., I won’t do this because my family told me so, or this person will get upset). These results underscore the importance of defining rules and providing guidelines for online interactions. Page iterates the need for ongoing conversations around online safety to support learning via repetition (35:20).
Immediate mediation for online safety is more effective than delayed support. For example, care staff report that, even though clients share what happens to them online, it’s after the fact, so there is little they can do to support them at that point (36:55). However, clients who can reach out to an adult sibling or parent to ask about what’s happening can troubleshoot in real-time and understand more about the situation. Page reiterates the importance of having someone to reach out to in real-time (online or in person) and having parents or others checking social media regularly to scan for conflicts and safety (38:45).
The benefits of online safety mediation included socio-emotional co-regulation (both parents and young adults learned more about each other), digital literacy (real-time troubleshooting), collective effort for safety (staff and family work together), and general alignment and understanding of specific problem points for the individual (39:20).
A significant tension of social media mediation is the general overwhelm that support networks feel across the U.S. Social media is often low on the list due to other physical needs that take priority (42:15). Page highlights the balance between safety and independence and suggests avoiding taking kids off of social media altogether. She notes that young adults who felt someone would remove their social media were far less likely to be open about their experiences. The speaker underscores that social media is a lifeline to social interests and community and that many individuals shut down due to the threat of losing this connection (43:40).
Chapman summarizes attendee responses to this point in the presentation (45:00).
The presenter outlines six recommendations for working with young autistic adults on social media and online safety:
Number 1: Establish a common vocabulary
- Understand what it means to be a “friend” and take time to define anything on the interface labeled as “friend” or any other social relationship.
- Understand what the message indicators mean (sent, received, read) (47:50).
Number 2: Understand audience and purpose
- Purposefully consider online audiences and know how to set privacy settings accordingly (e.g., public vs. friends vs. private posts).
- Understand that posts can be interpreted differently than intended.
Number 3: Cooling-off period before reacting
- Do not post, comment, or message immediately when you are upset or feeling a strong emotion.
- Take a pause period and, where possible, consult with an ally for advice on the situation (50:30).
Number 4: Do not take content at face value
- Understand that someone sending you a friend request isn’t necessarily telling you the truth.
- Check for spelling errors, missing profile pictures, and other signs of fake accounts.
- Where possible, consult with an ally to understand whether to accept friend requests.
Number 5: Do not follow the interface prompts without a good reason
- Ask why you would want to share or do something instead of following online prompts as directions.
- Even though they’re worded like instructions, they are meant to show what you could do (52:25).
Number 6: Remember that what people say and do is not always clear
- Remember that just because the technology makes it look like someone has read your message does not mean they have or are available to answer.
- When you read something that upsets you, talk to an ally to see if it might mean something different than you think.
Page reiterates that these recommendations require ongoing conversations to reinforce these ideas and learn about their experiences, individual pain points, and how the community can support them.
The speaker outlines aspects of a social media literacy course currently in its fourth iteration, including social media norms, privacy settings, how to identify fake profiles, types of social media groups and associated interactions, misinformation, and social media vs. reality. The course provides educational slides on each topic and practice modules for navigating each situation (53:00).
Initial results from the fourth iteration show that repeated practice questions and gamification help autistic adults with and without intellectual disabilities learn (56:16). Future plans for this research include covering more social media platforms and enrolling more field sites. Page gives acknowledgments and provides sign-up links for interested participants before the Q&A (57:40).
