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The Changing Role Social Media Plays in Autism Spectrum Disorder: An Interview with Dr. Evdokia Anagnostou


Zsuzsa Lindenmaier

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Dr. Anagnostou is a Professor in the Department of Pediatrics at the University of Toronto, senior clinician scientist at the Holland Bloorview Kids Rehabilitation Hospital, and Canada Research Chair in Translational Therapeutics in Autism Spectrum Disorder.

Social media is a medium that impacts our lives and our definitions of what it means to be social in modern society. The influence of social media, therefore, impacts disorders that rely on our current definition of “social,” like autism spectrum disorder (ASD). ASD is a neurodevelopmental disorder characterized by restricted, repetitive behaviours and deficits in social communication. Social media is increasingly being used in a multitude of ways, even in the disorders field. Physicians use it as a knowledge translation platform, to share basic scientific findings and information to lay audiences. Autistic people and families self-organize on social media to negotiate service, express frustration with the system, and share information and resources. Many autistic people use it in different ways: some as a place to further clarify their place/position on identity vs. disorder and some as a place to just articulate their daily life and/or thoughts (and therefore their non-ASD-related thoughts too).

Online communities bypass some of the areas that some people with autism find particularly distressing, such as eye contact and smells, that aren't about the social interaction per se. With the removal of these potentially assaulting experiences, there's a pattern of autistics—who otherwise are socially isolated—participating in social communities online. For example, a youth with autism with no friends in school may have a community online that has the characteristics of a true friendship: selective, shared personal experiences, talking about worries, and even disclosing highly personal information such as suicidal ideation. This calls into question whether autistic youth are actually more socially competent than we previously believed, and it opens doors to the possibility that autistic persons may find meaningful social interactions online.

An interesting avenue to explore is how social media use changes with variation in autism diagnosis, for example with social subtypes. Will an individual who is socially motivated but continuously rejected engage differently than an individual with low social motivation? Moreover, social media is, obviously, a medium that targets highly verbal people. Even Instagram, although it doesn't require verbal content, requires verbal intent. Social media, as it is currently designed, excludes people who are lower in cognition, language, and other skills. These characteristics are present in a large proportion of the autistic population.1,2

The disparities in cognitive and communicative abilities amongst persons with autism presents an issue within one of the most recognized autistic social media movements: #ActuallyAutistics. Those who have access to and represent themselves through this movement are able to read and communicate verbally. People with autism who are unable to use social media due to cognitive and language limitations are underrepresented in this space. Thus, while groups have their merits in helping those with autism network and develop a sense of identity, groups that are comprised of a minority of individuals who claim to represent the majority create a concern for skewing the opinion on what autism looks like.

The people who use social media as their platform tend to have a very particular set of characteristics: they have strong opinions, they feel they have good advocacy skills, they feel they represent other peoples' opinions, and, perhaps most importantly, they are highly verbal. This represents a small percentage of people with autism. This can quickly devolve into a debate about who is (and should be) speaking for who. Is a verbal autistic, a sibling, or a parent the best advocate for a nonverbal child?

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People who dominate social media have the phenotype that does well on social media. And nowadays, people who are competent on social media can claim a bigger space in the dialogue surrounding autism - even getting a seat at the table when it comes to making decisions. This is not necessarily a bad thing; including the voices of patients and their families is increasingly becoming a priority in healthcare. Caution, however, must be used when the only voices that are heard are a subset of the population. It may be time for those that are not motivated to engage in social media to consider creating a presence to claim some space for their various views.

Perhaps the most dangerous disadvantage of social media use in autism stems from a deficit in theory of mind in a lot of people with autism. This puts them in a position where, even with the best intent, they cannot represent the views of others (see the Sally-Anne test),3,4 and so it makes them particularly vulnerable for extreme positions. There are a number of insular groups online, promoting extreme views and opinions that can be harmful, and often lead to bullying. Some of these groups are specifically for autistics, and some are for other purposes. A recent example of a harmful social media movement that appealed to autistics was the Incel subculture. Autistics need rigid rules and often, the social media spaces where those rigid rules apply are not safe spaces. There are concerns that autistic people are overrepresented in insular groups because these groups take advantage of their vulnerabilities.

It's important to note though, that there are extreme positions everywhere on social media. There is no reason autism would be spared from that. Similarly, there is an issue with "loud voices" representing a larger population on other fronts on social media, including or excluding autism. Although there are challenges unique to autism and social media use, there are considerations that everyone in today's changing society needs to be aware of and address.

For example, as we are rethinking what it means to be social for all of us, it will have implications on what we define as a deficit in ASD. Our whole world is becoming more virtual (even more so in light of recent pandemics), and that's changing our definition of "friendship" as well. If you have never met a friend online, would you still consider them your friend? Most likely future ASD diagnosis will focus on a relative deficit: instead of an absence of social interactions, it will be a difficulty in real-life settings. Some kids with autism are clearly aloof and find no value in social interactions. Some kids find social interactions so aversive that they tune them out and seem aloof after awhile, but now with a medium where the sensory stuff has been removed, they don't look aloof anymore. Although the question of how the DSM—the handbook for diagnostic criteria in psychiatry—will actually rearticulate that in a specific way remains unanswered.

A deficit in physical activity level is another issue that is consistently brought up both in and outside of the autism population. There have been a number of studies that have observed a deficit in activity level in autistics compared to their peers.5 But the truth is, all kids are at risk for living their lives in virtual spaces and we have to work on that for all kids, balancing virtual and physical activity. For the autistic population specifically, the core reasons that they don't engage in physical activity needs to be addressed. Specifically, experiences in sports environments tend to be abusive, traumatic, and do not facilitate physical activity. Solutions need to focus on reducing barriers, not vilifying alternatives. The ASD group should not be treated differently on this topic; especially because they do get particularly unique benefits from virtual spaces providing safe(r) spaces for them.

With our increasing use of social media, we need to find consensus on many topics, accounting for the benefits and disadvantages that our virtual world brings. Some issues are not unique to autism, like activity level deficits and our definition of friendships. Some issues have elements that are more pertinent to autism, like insular groups and "loud voices," where an extra degree of caution is necessary. Ultimately, social media has a multitude of uses, and impacts both the lives of non-autistics and autistics.

Edited by Emma Syron & Emily Deibert