By Emma Hyner and Krysia Waldock
A blog post on two Autistic participants’ experiences of participating in a research study to identify Autistic adults’ priorities for research into social media use and mental health
Social media is playing an increasingly important role in people’s lives, and there is evidence to suggest that (some) Autistic people turn to the online world as a preferred means of social connection and communication. Against this backdrop, however, surprisingly little is known about how the technology shapes the experiences -and interacts with the mental health- of Autistic people, for better and/or for worse. In addition, much of the existing research in the field has not been shaped by Autistic people themselves.
This blog details the reflections of two participants (Emma & Krysia) who recently participated in a collaborative, strengths-based and experience driven study, designed to address these limitations. Undertaken with 21 Autistic adults, the study identified research questions that were felt to be of central importance to understanding social media use and mental health in Autistic people. By centering Autistic people’s perspectives, the project aims to guide future research that is empowering, inclusive, and of direct practical relevance to the (many and diverse) Autistic communities that exist.
The study was led by Dr Marc Tibber and Dr Georgia Pavlopoulou and was undertaken in collaboration with a group of neurodivergent and neurotypical researchers, including Kieran Rose, Prof Will Mandy and Prof Elizabeth Pellicano. The work was funded by UCL Grand Challenges as part of the Grand Challenge of Mental Health & Wellbeing “Network and Community Building" call.
Why did you want to participate?
E: As a newly-diagnosed autistic woman I found a lot of solace and support in the online world that I never knew had existed. Being neurodivergent (ND) and a psychologist I’ve always been drawn to helping add to research projects where I’ve felt there is an under representation in the literature; getting to explore and discuss elements of my journey was really cathartic, and Marc gave so many opportunities to reflect on the findings. The whole process was really enjoyable and feels very valuable to the neurodivergent community.
K: Although I am quite ‘comfortable’ in my autistic identity in many ways, I’m starting to discover I am ‘multiply ND’ and I always love the chance to meet other autistic folk and contribute to ‘good research’ - research that values autistic people’s voices and experiences. As a postdoctoral researcher, I also find it incredibly helpful to make sure I know how it feels like as a participant too to keep me grounded! It’s also really interesting to inform research that shapes autistic people’s lives in many different ways. I am a sociologist of religion with a focus on neurodivergent people in lived religion by background, and currently work at Swansea University on a great project that also contributes to improving autistic people’s lives.
What parts of the research were particularly enjoyable?
K: I always love a good interview and a good chat - I think this is why I particularly liked the first interview. I used to be a research assistant who focused on cyber security education in children and young people, and as someone who maintains many friendships and working relationships online, it was great to unpick this more with someone who ‘gets’ why this is important.
E: The first interview for me was really enjoyable. We discussed so many aspects of the online and offline world, as it’s always been an interest of mine. Some of the challenges that misinformation through social media can pose was, and still is, something important to be unpicked. But I’d like to hope that the opportunities for meaningful connections and community building outweigh those potential risks. I think Marc and the team kept autistic voices at the centre of the project, and it felt empowering to be heard.
Were there any challenges?
K: Juggling things is an art and a science. I took part in the project just after submitting my thesis, so I was in a period of transition between universities and moving from student to postdoctoral researcher. I think this was the biggest challenge for me. What did help though was that Marc understood this and that many contributors’ lives are always in flux!
E: To be honest, I’m currently juggling a doctorate and family life so I’m always busy! Team was so flexible and helpful with the different stages of the project. It really felt collaborative, like a journey we were taking as a group.
What did you learn along the way?
E: To be honest, I felt like I was able to unpick a lot of my own perspectives on what I feel I want and need from the online space. It helped me reflect on my own social media use… and had to admit some painful truths about how much I submit to doomscrolling as a way of switching my brain off!
K: I think for me it confirmed how important this area of research is, and how dependent we are as a population (not just autistic people!) on the internet and social media. Social media is only going to get more central to people’s lives, so we need to know more about how to facilitate positive discourse and discussion about it!
What do you hope this research can bring to the neurodivergent community as a whole?
E: I think (and hope) there’s real opportunity to move away from a wholly negative narrative regarding social media use and mental health. There are huge opportunities held in those connections - seeing a 30 second TikTok of a stranger and seeing parts of yourself in that clip can reaffirm aspects of your own neurodivergent identity that you might not be fully at peace with yet. It helps spark conversation and brings understanding - my partner and I are constantly sending and receiving clips of neurodivergent creators and saying ‘that’s like you’. I’d never had that kind of representation as a child or teenager, so finding it as an adult has been affirming.
K: I believe by focusing on priorities set with autistic people, it sets the precedent for scholarship and practice that we want as neurodivergent people. I also think there is enough ‘bad press’ about neurodivergence currently, work and dialogue like this helps counteract some of the nonsense that is currently live and kicking. I also agree with Emma - even though I was identified earlier in life, there was still no one ‘like me’ and I was so misunderstood by many people in my life. I was just a ‘problem to be solved’ by many! But this work, and much other research which centres neurodivergent people’s lived realities allows for us to ‘speak back’ and say we’re not the problem!
For more details of the study and its findings, please read our pre-print paper
(An update version of this paper is also In Press at Autism in Adulthood Journal).
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