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Is Social Media Failing Neurodivergent Youth?

We spoke with Instagram creators and members from Meta to uncover if large-scale social media platforms are meeting the needs of their neurodivergent members.

Misinformation on the web. Illustration by Carlos PX (http://payforlayers.com/)

Lifestyle & Identity

What are you looking for when you’re online, spending hours upon hours scrolling on social media? Are you looking to be entertained? Are you looking to learn something new? Regardless of how you spend your time on the Internet, the primary factor behind your why will always be the social aspect of  “social media.” We crave community and a sense of belonging, and this is especially true for neurodivergent youth.

Harvard Health Publishing describes neurodiversity as "the idea that people experience and interact with the world around them in many different ways; there is no one 'right' way of thinking, learning, and behaving, and differences are not viewed as deficits."

Earlier this year, neurodivergent creators started a trend on Instagram reels where they shared their hyperfixations. I have been able to talk with various neurodivergent creators about their online experiences and receive critical messaging from Meta. These are just some of the responses I have received.

The Impact of Ethnicity

Riot, 25, has ADHD and autism. They identify as neuroexpansive (coined by @ngwagwa), which is "'a rejection of the term 'neurodivergent' and the ideology that undergirds it… Whiteness is not the center of our [Black] experiences. We do not divert from any norm or standard of white nondisabled bodyminds.'" 

Riot shares that it’s usually white people who have the loudest voice, even when it comes to neurodiversity. "Black neuroexpansive people are completely erased. A lot of us [neuroexpansive people] don’t even know we are [neuroexpanisve] until later in life because white neurodiversity is the dominant narrative."

They tell me that they share their experiences and hyperfixations on social media because it makes them happy: "I like talking about these niche interests…and the fact that so many people can relate and I can bring them joy too—it really speaks to a greater community."

"Black autistic people exist. Black ADHDers exist. And, more than that, we have an incredible culture that has been here and will continue to grow. I want our families, guardians, and schools to recognize that we are here. I want social media to stop shadow-banning and actively erasing us. What we have to share is important."

Stereotypes

Kaidence Quinn, 15, has over 20K followers on Instagram. "When it comes to neurodiversity there’s a lot of stereotypes about it and they’re all wrong,” they start. “Neurodivergent people are really not that different from everyone else—we just tend to function a bit differently."

Quinn tells me that the negative stereotypes surrounding neurodivergent people can be extremely harmful, but that the main thing they’re concerned with is the lack of education that breeds these stereotypes. 

"A lot of people are not educated enough on neurodiversity and it’s honestly a problem.

The Media and Neurodiversity

Chloe Henkel, 19, is another Instagram creator. She strongly believes that the mainstream media doesn’t discuss hyperfixations ad neurodiversity beyond basic stereotypes. "I feel like it’s so limiting not to have representation that steps beyond common stereotypes," she explains in our interview.

"Despite my answer to the previous question, I do think that there is starting to be a shift in the conversation around neurodiversity in modern times. New neurodivergent creators (including myself) are taking advantage of social media as a place where we can correct misinformation, connect with one another, and share our own real-life experiences. By sharing our experiences on social media, we’re able to set the record straight about what being neurodivergent really looks like—which is a little bit different for each of us!"

She adds that since she’s used Instagram to post about her hyperfixations, she’s built strong communities and connects with her “fireflies,” which is an affectionate term she uses for her followers.

But social media has its failures.

Chloe tells me that, "while social media can be a powerful tool for spreading information and positivity, it can also be a powerful tool for spreading misinformation and negativity." She paints a picture of constant harassment from bullies and false accusations of fake-claiming, which is where one pretends to have a certain mental illness or disability. "I think it’s really important for social media platforms to take reports of this seriously, and take swift action against accounts bullying people and spreading misinformation online."

@chloe.creating CBT 👏 is not 👏 OCD treatment 👏 #ocd #obsessivecompulsivedisorder #exposuretherapy #cbttherapy ♬ original sound - 900k 🕷

Meta’s Message

The GEN-ZiNE team reached out to Meta earlier this month, but we weren’t able to speak with an Instagram spokesperson directly. However, we did receive the following message regarding the company’s policies and how they’re working to make Instagram a safer, more welcoming space for all.

On youth and well-being:

  • We're committed to raising the standard for protecting teens and supporting families online.

  • We've recently taken a number of steps to do this, including introducing new default settings for teens and launching 'Take a Break' to encourage teens to spend time away from Instagram.

  • In March, we also launched our first set of parental supervision controls on Instagram, available in our Family Center. 

  • We worked closely with experts, parents, guardians, and teens to develop our Family Center, which also includes a new education hub where families can access expert resources and tips on topics like how to talk to teens about healthy social media usage.

  • We also just launched our new 'nudges' feature that will encourage teens to switch to a different topic if they've been dwelling on the same type of content for some time.

Tools to prevent bullying and harassment:

  • We don’t allow people to bully or harass other people on Instagram and have rules in place that prohibit this type of content. We’ve also built tools that help prevent bullying from happening in the first place and empower people to manage their accounts so they never have to see it. More on these tools below.

  • Limits: We announced a new tool called Limits that lets people automatically hide comments and DM requests from people who don’t follow you, or who only recently followed you.

    • We developed this feature because we heard that creators and public figures sometimes experience sudden spikes of comments and DM requests from people they don’t know. In many cases this is an outpouring of support — like if they go viral after winning an Olympic medal. But sometimes it can also mean an influx of unwanted comments or messages. Now, if you’re going through that — or think you may be about to — you can turn on Limits and avoid it.

  • Message controls: 

    • Instagram accounts have the ability to filter messages so that they never have to see abusive messages from strangers again - this is known as our ‘Hidden Words’ feature. More info here. This also works in comments (see below).

    • All accounts on Instagram have the option to switch off DMs from people they don’t follow. This means athletes, among others,  never have to receive a DM from anyone they don’t know again. 

    • Messenger also gives you the option to ignore a conversation and automatically move it out of your inbox, without having to block the sender.

  • Comment controls: 

    • ‘Hidden Words’ comment filter: Anyone can add emojis, words, or phrases they find offensive to their comment filter, and comments containing these terms won’t appear under the post. Even with this filter turned on, we will still take action on people who send comments that break our rules.

    • Comment warnings: We have machine learning in place that alerts people when a comment they’re about to post could be potentially offensive and gives them a moment to pause and reflect on whether they really want to post that language. 

    • Who can comment: On Instagram, you can choose to limit certain people from commenting on your posts. 

  • Blocking profiles and accounts: To prevent contact from those you do not wish to interact with on Facebook or Instagram. Blocking someone also means they cannot search for your profile.

    • On Instagram, we also recently announced that we’re making it harder for someone who you’ve already blocked from contacting you again through a new account. With this feature, whenever you decide to block someone on Instagram, you’ll have the option to both block their account and preemptively block new accounts that person may create. 

  • Managing who can tag/mention you: We’ve seen that tags and mentions can be used to target or bully others, so we have controls that allow you to manage who can tag or mention you on Instagram. 

    • You can choose whether you want everyone, only people you follow, or no one to be able to tag or mention you in a comment, caption, or Story.

  • Restrict: With ‘Restrict,’ you can protect your account from unwanted interactions in a quieter, or more subtle way. 

    • Once Restrict is enabled, comments on your posts from a person you have restricted will only be visible to that person. You can choose to view the comment by tapping “See Comment”; approve the comment so everyone can see it; delete it; or ignore it. You won’t receive any notifications for comments from a restricted account.

Are large-scale social media companies doing enough to support the people who keep them in business or are we being failed by the same companies who vowed to keep us safe? That’s for us to decide.