The Internet and social media have become increasingly central in our daily lives leading to polarised debates on the benefits and risks of social media use for young people. When it comes to young autistic people the risks and concerns (such as about cyberbullying) tend to dominate the discussion. However, a recent study found that autistic youth were highly aware of safety concerns associated with social media and took appropriate steps to protect themselves online, such as changing their privacy settings. In contrast, the non-autistic teenagers were more likely to downplay these risks.
As well as risks, social media participation has significant benefits in terms of finding social connections and developing a sense of identity which we would like to highlight in this blog post.
Current research has mostly focused on autistic online communities where people come together to raise awareness and advocate for autistic rights. But autistic people increasingly find connections in communities built around interests, where they interact with non-autistic and autistic people alike.
As Valerie, a parent to a 19-year old autistic son, explained on a radio broadcast:
“So I have a 19-year-old son and obviously he has been on the spectrum all of his life and has quite a significant intellectual disability, and also with the pandemic has an immune disorder. So his life is very much centred around home. But completely off his own bat he has found communities online who love things like Thomas the Tank Engine that he loves. And they have linked together amazingly, beautifully, spontaneously.”
Autistic interests are often ‘intrinsically motivating’ which means that you engage in these interests simply because you find them fun and enjoyable. Someone could spend hours each day researching their interest and talking to other people about it. When it is a young person, this is often met with a mix of parental relief as well as worries about ‘excessive’ screen time. What is ‘excessive’ and disruptive to the daily routine, however, should be put into context (‘excessive’ from whose vantage point? Who sets the norm for the daily routine?) While Valerie’s son struggles with school and sports activities, he enjoys participating in livestreams. He has a YouTube channel with thousands of subscribers, where he makes videos about his favourite interests. Through social media, he can more easily connect with other people and engage in activities that he wouldn’t be able to offline.
When asked if she was concerned about her son spending ‘too much’ time online, or if social media was ‘distracting’ him from more important activities, Valerie said:
“I guess what I think is really important as a parent of someone on the spectrum is, you learn over their life that you can’t look at everything from a neurotypical perspective. You can’t say ‘I would like that, therefore my son would like that.’ You know, we sent him off to school and it was torture. We sent him off to sport and it was torture.
[…] I think, you know, obviously there are things we need to do, and as the professor was saying exercise is really important and, you know, interaction with family. Also kind of responsibility within his own life, you know cleaning up after himself and whatever he’s capable of doing, he’s gotta have that sort of reinforced as well. But at the same time, face-to-face contact with other people? Completely overwhelming for him.”
Perhaps parents would prefer that their teenagers spend less time on YouTube and more time talking to people ‘in real life.’ But why are we holding autistic people up to neurotypical standards? Online communities are real communities. Just because the interaction is taking place via a screen, that doesn’t mean it’s not valuable or meaningful. When face-to-face communication is difficult, online affinity spaces offer ways to connect and interact with others on your own terms, at your own pace.
Intense focus on activity or objects of interest to autistic individuals plays a crucial role in their personal development and sense of identity. Despite its positive impact, intense focus in the context of autism is frequently misunderstood, stigmatised, and pathologized. This disparity highlights the pervasive societal biases that undermine the experiences and contributions of autistic individuals, emphasizing the need for greater acceptance and understanding. We therefore want to end this post with the words of Valerie, who when asked how the world should be set up for autistic people, responded: “Oh with kindness, with respect, with understanding that we’re not all the same”.
References and further reading
ABC News (2022, November 3). Social media can be a lifeline for people with autism. https://www.abc.net.au/listen/programs/sydney-afternoons/andrew-whitehouse-3rd-nov/101618630
Rocheleau, J. N., & Chiasson, S. (2022). Privacy and safety on social networking sites: Autistic and non-autistic teenagers’ attitudes and behaviours. ACM Transactions on Computer-Human Interactions, 29, 1-39. https://doi.org/10.1145/3469859
Sparrow, M. (2017, November 22). Autism and intense interests: Why we love what we love and why it should matter to you. Thinking Person’s Guide to Autism. https://thinkingautismguide.com/2017/11/autism-and-intense-interests-why-we.html
