Social media and autism

Jenny McCarthy once famously addressed the audience of the Oprah Winfrey Show by stating that her qualifications to speak about autism and vaccinations stemmed from “The University of Google”.  Indeed, a lot of our health information is presently being obtained through the internet.  Whether true or false this information influences our decision making and health-seeking behaviors.  This is more so the case in social media platforms where user-generated content is shared widely in real-time.

Social media specifically refers to websites intended to create and share information or to participate in social networking. These websites are usually interactive, guided by user generated content and meant to facilitate connections between the user and other individuals or groups. The advent of social media is a recent development.  A short history of the more prominent players would have to start with SixDegrees.com.  This was the first recognized social media site established in 1997 and lasting until 2001.  The website combined user’s profiles along with friend’s lists and school affiliations.  Shortly afterwards, MySpace started in 2003. The site allowed you to customize profiles and embed them with music and videos. It had blogging capabilities and allowed users to post classified ads. Facebook services started in 2003 as “FaceMash” but later changed its name to “TheFacebook” on February of 2004.  It was initially restricted to Harvard students but subsequently expanded to Ivy league students. It became open to the public in September 2006.  This social media platform was meant to keep people connected, to build a community of users and, in doing so, help participants discover what was going on in the world. Soon afterwards, Twitter was designed (2006) by two entrepreneurs who had previously worked at Google.  Their mission statement states that they would like empower users with the ability to share ideas and information instantly and without barriers -a free and global conversation. One of the newest members of the social media family is Instagram (also known as IG or Insta).  This platform is owned by Facebook and was launched in 2010.  It provides filters to transform mobile photos and share them in multiple other sites.

Out of the 7.7 billion people in the world, approximately 3.5 billion (45%) are active social media users! The average person has multiple accounts and spends over 2 hours per day on social media platforms. By the age of 15, 80% of children have at least one social media account.  Most social media applications require that users be at least 13 years of age to access their services or establish their own accounts.  This is in-keeping with the Children’s Online Privacy Protection Act, a United States federal law, that prevents collecting personal information from anyone under the age of 13 without parental permission.  This rule is written into the Terms and Conditions which users have to agree when they sign for services.  The fact that users do not abide by this rule is readily evident; indeed by 12 years of age 50% of kids have multiple social media accounts.

Social media has the potential to be a positive influence in the lives of many autistic individuals.  Social media decreases shyness and makes children and teens feel more confident. It enhances learning opportunities, collaboration, and the exchange of ideas. Social media allows participants to overcome social communication challenges and avoid face-to-face communication. Eye contact and body language are non-issues in social media. Unfortunately, there are also negatives of salience for the autistic population.

Probably the most important side effect of social media is cyberbullying; that is, the deliberate use of digital media (e.g., cell phones, computers, tablets) to communicate embarrassing or hostile information about another individual.  Cyberbullying can occur at any time and at any place.   Cyberbulling can be anonymous and, many times, can’t be traced or punished.  It provides  a risk for academic struggles. Cyber bullied children end up avoiding school, have difficulties concentrating, and are at increased risk for depression, anxiety, sleep disturbances and substance abuse in later life. About 34% of teens have reported being cyberbullied in their lifetime, a prevalence that has doubled since 2007.  In many cases, cyber bullying includes sexting: sending or receiving sexually explicit messages, photographs or images via a digital device. 20% of teens have sent or posted nude photographs or videos of themselves.  In many cases these individuals could be charged with felony child pornography charges or be forced to register as a sex offender.

The most common site for cyberbullying is Instagram, where people can create fake profiles. According to a recent article: “Teenagers have always been cruel to one another. But Instagram provides a uniquely powerful set of tools to do so. The velocity and size of the distribution mechanism allow rude comments or harassing images to go viral within hours. Like Twitter, Instagram makes it easy to set up new, anonymous profiles, which can be used specifically for trolling. Most importantly, many interactions on the app are hidden from the watchful eyes of parents and teachers, many of whom don’t understand the platform’s intricacies.”

Social media can be the source of anxiety, depression, and suicidal thoughts in many autistic individuals.   “Facebook Depression” is a mood disorder that develops after spending a great deal of time on social media sites. 78% of users have reported a pressure to look popular on social media platforms. It is highest among girls 12-15 years of age and many times is related to cyberbullying. According to the American Academy of Pediatrics (AAP): “Facebook depression… may result if, for example, young users see status updates, wall posts, and photos that make them feel unpopular. Social media sites may have greater psychosocial impact on kids with low self-esteem or who are already otherwise troubled. The report recommended that pediatricians help families better understand the potential harms of social networking sites and encourage parents to monitor Internet usage and talk to their kids about cyberbullying, sexting, and exposure to social media content that could negatively affect mental health.” https://www.socialworktoday.com/archive/exc_080811.shtml

Social media has a digital footprint.  28% of children and teens report sharing information that they would not have shared in other places.  Many times, they end up regretting such disclosures. If you post it in social media, it is there forever. This can lead to damaged reputations with future implication regarding schooling and employment.

Social media sites are working hard to combat misinformation.  Some sites like YouTube will promote videos that give a balanced account of information. Unfortunately, even when the social media site can receive complaints about inappropriate usage (content and conversations), kids seldom report transgressions (note: only 13% have used online reporting functions). In the end, it is up to parents to provide boundaries for their children.  Parents need to monitor their kid’s use of social media (available apps include Norton, TeenSafe, MobSafetyRangerBrowser, PhoneSheriff) and regulate access depending on symptoms.  According to an article in Psychology Today, there are a number of signals a young person naturally sends that they’ve spent too much time on social media platforms or on their mobile device in general:

  • Withdrawing from face-to-face social interaction.
  • Consistent anxiety, stress or feeling overwhelmed by normal routines.
  • Grades begin to slip and assignments reflect poor work or are left undone.
  • Avoidance of real life responsibilities, such as chores or homework.
  • Ill at ease, ill-equipped or unresponsive to people in front of them.
  • Phubbing—teens snub people next to them by looking down at their phone.
  • Phones begin to create conflict in their closest relationships.

In the end it is up to parents to serve as examples of social media users to their children.  If you spend too much time on the telephone, don’t be surprised that your children acquire the same habit.

References

Manuel Casanova (2019): Autism Updated: Treatments, Symptoms and Controversies

Cortical Chauvinism (2015): Autism: The importance of social interactions and the internet

Cortical Chauvinism (2017): Social connectedness and autism

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