Co-design of digital mental health support for Autistic youth with co-occurring anxiety: a research project
Digital mental health solutions, particularly for Autistic youth, lack research attention. Holly Gray discusses her upcoming research project which aims to find out: what types of mental health support do Autistic youth desire in digital platforms; what are the barriers and enablers in involving Autistic youth in digital mental health support; and how can digital mental health support be culturally responsive to meet the needs of Autistic Māori rangatahi.
Research estimates that up to 94% of Autistic people experience at least one co-existing mental health condition (Hossain et al., 2020). So, why isn’t mental health support more accessible and relevant for tāngata whaitakiwātanga? Despite an increased need for mental health support, there are still inequities between the Autistic community, mental health systems and neurodivergent-specific support systems (Crane et al., 2019; Maddox et al., 2021). Unfortunately, this can lead to Autistic people being turned away from support services. In fact, research shows that over 25% of Autistic participants have been denied mental health support or access to mental health support because of their autism (Hallett & Crompton, 2018). Not only is this an alarming reflection of the large mental health disparity faced by Autistic individuals, it highlights the importance of listening to, and learning from, the Autistic community to ensure their needs and preferences for mental health support are being met (Crane et al., 2019).
Based on emerging research, digital mental health support can be beneficial for youth with anxiety and can improve the accessibility of mental health care (Garrido et al., 2019; Lattie et al., 2022). However, most of this research has been focused on Allistic youth. To our knowledge, there has been no research that considers the specific needs and preferences of Autistic young people in accessing digital mental health supports. Therefore, our project aims to find out: what areas of mental health support Autistic youth would like to see in digital mental health support; what the barriers and enablers are to engaging Autistic youth in digital mental health support; and how can digital mental health support be culturally responsive to the needs of Autistic Māori rangatahi. As a child and family psychology student, my research interests are centred around promoting child and youth mental health and pushing the boundaries of mainstream delivery of interventions to enable accessibility for those who need mental health support. With the guidance and support of Dr Lisa Marie Emerson (senior supervisor) and Prof Laurie McLay (second supervisor) from the University of Canterbury this project strives to meet these goals.
The need to listen to the Autistic community is clear across literature. Why, then, isn’t there a larger focus on creating a space for Autistic people to have their say? The community-led autism research priorities of Aotearoa highlight the importance of understanding the preferences and needs of Autistic people. It is key that this understanding is developed from the voice of Autistic individuals and their experiences across the spectrum of supports (Emerson et al., 2022). Additionally, members of the Autistic community also call for the prioritisation of quality of life, translation of research into real-world change, cultural responsiveness, and mental health in research (Emerson et al., 2022). It is these research priorities which form the foundation of this project.
By considering the mental health experience of Autistic people, described by Autistic people, we can have a greater acknowledgement of, and can begin addressing the disparities faced by Autistic people. We have sought input from Autistic Partnership Aotearoa New Zealand, the wider Autistic community, and Māori advisors during research and question development, and recruitment phases. We intend to continue utilising their feedback while we carry on recruiting participants, conducting interviews and beginning the analysis phase in the coming months. Being an Allistic student researcher myself, insight from Autistic individuals is essential in creating safe space for Autistic people to voice their needs and preferences. In turn, we intend for this research to inspire a culturally responsive and relevant digital mental health support made by Autistic rangatahi, for Autistic rangatahi.
| Glossary | |
| Tāngata whaitakiwātanga | Autistic people |
| Allistic | Non-Autistic person |
| Rangatahi | Young person / people, younger generation |
References
Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019). ‘Something needs to change’: Mental health experiences of young Autistic adults in England. Autism: The International Journal of Research and Practice, 23(2), 477-493. https://doi.org/10.1177/1362361318757048
Emerson, L. M., Monk, R., van der Meer, L., & McLay, L. (2022). Autistic co-led autism research priorities for Aotearoa New Zealand. https://go.exlibris.link/SyC3NsHQ
Garrido, S., Millington, C., Cheers, D., Boydell, K., Schubert, E., Meade, T., & Nguyen, Q. V. (2019). What works and what doesn’t work? A systematic review of digital mental health Iinterventions for depression and anxiety in young people. Frontiers in Psychiatry, 10, 759. https://doi.org/10.3389/fpsyt.2019.00759
Hallett, S., & Crompton, C. J. (2018). Too complicated to treat? Autistic people seeking mental health support in Scotland. Autistic Mutual Aid Society Edinburgh (AMASE). www.amase.org.uk/mhreport
Hossain, M. M., Khan, N., Sultana, A., Ma, P., McKyer, E. L. J., Ahmed, H. U., & Purohit, N. (2020). Prevalence of comorbid psychiatric disorders among people with autism spectrum disorder: An umbrella review of systematic reviews and meta-analyses. Psychiatry Research, 287, 112922.
Lattie, E. G., Stiles-Shields, C., & Graham, A. K. (2022). An overview of and recommendations for more accessible digital mental health services. Nature Reviews Psychology, 1(2), 87-100. https://doi.org/10.1038/s44159-021-00003-1
Maddox, B. B., Dickson, K. S., Stadnick, N. A., Mandell, D. S., & Brookman-Frazee, L. (2021). Mental health services for autistic individuals across the lifespan: Recent advances and current gaps. Current Psychiatry Reports, 23(10), 66. https://doi.org/10.1007/s11920-021-01278-0
Holly Gray (BSc Psychology) is an Allistic student researcher at University of Canterbury, currently studying for her Master in Child and Family Psychology.
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