Supporting Autistic Young People with Mental Health Conditions
Rates of mental health problems among the 700,000 children and young people in the UK who have been diagnosed with autism are extremely high. While the national rate of children and young people with mental health problems is 16% (NHS Digital, 2022), around 70% of those with autism face a mental health challenge (Mind, 2015). Furthermore, one in four autistic youths experience suicidal ideation, and one in ten attempt suicide (O’Halloran et al., 2022).
The likelihood of an autistic young person suffering from a mental health condition is increased by the discrimination, bullying and victimisation that their stigmatised condition receives in communities that fail to adapt to their needs or show acceptance of their behaviours (Pellicano & den Houting, 2022; Perry et al., 2022).
Autistic young people often feel forced to ‘camouflage’ their behaviours - including social communication difficulties, repetitive behaviours and sensory challenges - to avoid discrimination. They may make a conscious attempt to copy the behaviours, attitudes, gestures and facial expressions of their non-autistic peers to present themselves in a way that is considered acceptable in society. Camouflaging is a constant and elaborative effort that some feel is needed to maintain relationships, achieve success in school and work, and avoid discrimination and isolation. This is incredibly draining, can result in a reduction of the energy required to process thoughts and control emotions, and is associated with the onset of mental health problems and higher rates of suicidality (Cassidy et al., 2018).
In contrast, higher rates of self-autism acceptance and satisfaction have been associated with greater psychological wellbeing and lower social anxiety (Cooper et al., 2022). To support young people to achieve autism acceptance and satisfaction, autism needs to be viewed not as a life-restricting disability but as something that exists within the natural range of diversity in human neurodevelopment. This is referred to as neurodiversity.
Through the lens of neurodiversity, an autism diagnosis doesn’t exclusively correlate with an individual having a lesser quality of life or being inferior to a neurotypical peer. Instead, it encourages a celebration of difference and autism acceptance is encouraged. Increasingly, it is championed as a social identity.
Greater autism acceptance, and a related improvement in mental health, can be achieved through peer support. Autistic young people can share experiences, develop and share useful strategies, and gain a greater understanding of their own identities (Rosqvist, 2019). It has been shown to increase the confidence of autistic young people to engage successfully in academic, work and social settings without being forced to mask their natural behaviours or feel unaccepted (Crompton et al., 2021; Crompton et al., 2023)
Tellmi offers peer support that has been shown to improve mental health, increase confidence, social connectedness and mental health self-management. Tellmi is the only anonymous, 100% pre-moderated app where young people aged 11-25 can share experiences and support peers. Users can anonymously post on Tellmi’s feed, expressing their feelings and emotions about anything, with their peers able to reply with support and guidance.
Peers are age-banded, with users only seeing posts from young people in a two-year range, and the capability to filter posts by tags such as ‘Autism’ allows autistic users to interact with those sharing similar experiences. With 16% of our users identifying as autistic, our app is a community where young autistic can discuss their challenges, support one another, and build autism acceptance. Greater autism acceptance is also created by our non-autistic users engaging with those who are autistic and helping them to feel less isolated.
“I didn't know Ruby was using Tellmi when she approached me to ask about taking part in the Autism survey. I obviously checked Tellmi out to make sure everything was above board, as you do, especially as a parent of an autistic teenager. I was really impressed with the app. I think Ruby likes it because it makes her feel safe and it has allowed her to connect with other people her age who have similar problems, so she doesn’t feel so alone now. She has been a different kid since she started using Tellmi. She really has. She's been a lot more open. She's just a different kid. If that's what Tellmi can do, I 100% encourage it.” - User’s parent.
Funded by the Government’s Small Business Research Initiative (SBRI), and working in partnership with Tellmi are currently working with The Autism Research Centre and The Autism Centre for Excellence at The University of Cambridge to deepen our understanding of our autistic users and what matters to them.
This will allow us to shape Tellmi to better support our autistic users, encourage greater autism acceptance, and improve mental health among children and young people with autism.
References
Cassidy, S.A., Bradley, L., Shaw, R., & Baron-Cohen, S. (2018). Risk markers for suicidality in autistic adults. Molecular Autism, 9, 42. https://doi.org/10.1186/s13229-018-0226-4
Cooper, K., Russell, A. J., Lei, J., & Smith, L. G. (2022). The impact of a positive autism identity and autistic community solidarity on social anxiety and mental health in autistic young people. Autism: The International Journal of Research and Practice. https://doi.org/10.1177/13623613221118351
Crompton, C. J., DeBrabander, K., Heasman, B., & Milton, D., & Sasson, N. (2021). Double Empathy: Why Autistic People Are Often Misunderstood. Frontiers for Young Minds. 9. 554875. https://doi.org/10.3389/frym.2021.554875
Crompton, C. J., Hallett, S., Axbey, H., McAuliffe, C., & Cebula, K. (2023). 'Someone like-minded in a big place': Autistic young adults' attitudes towards autistic peer support in mainstream education. Autism: The International Journal of Research and Practice, 27(1), 76–91. https://doi.org/10.1177/13623613221081189
Mind (2015). Supporting people living wih autism spectrum disorder and mental health problems: A guide for practitioners and providers. https://www.mind.org.uk/media-a/4400/autism-guide-web-version.pdf
NHS Digital (2022). Mental Health of Children and Young People in England 2022. https://digital.nhs.uk/data-and-information/publications/statistical/mental-health-of-children-and-young-people-in-england/2022-follow-up-to-the-2017-survey
O'Halloran, L., Coey, P., & Wilson, C. (2022). Suicidality in autistic youth: A systematic review and meta-analysis. Clinical Psychology Review, 93, 102144. https://doi.org/10.1016/j.cpr.2022.102144
Pellicano. E., & den Houting, J. (2022). Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science. Journal of Child Psychology and Psychiatry, 63(4), 381-396. https://doi.org/10.1111/jcpp.13534
Perry, E., Mandy, W., Hull, L., & Cage, E. (2022). Understanding Camouflaging as a Response to Autism-Related Stigma: A Social Identity Theory Approach. Journal of Autism and Developmental Disorders, 52(2), 800–810. https://doi.org/10.1007/s10803-021-04987-w
Rosqvist, H. B. (2019). Knowing what to do: exploring meanings of development and peer support aimed at people with autism. International Journal of Inclusive Education, 23(2), 174-187. https://doi.org/10.1080/13603116.2018.1427807
