Neurodiversity and youth mental health

This Team started with lots of questions in the areas of “Diagnosis”, “Masking”, “Support” and “Origins/ Causes”. The Team discussed their knowledge and experiences of struggles in getting a neurodivergent diagnosis and in accessing mental health support when someone is neurodivergent. This led the Team to want to look at how mental health and neurodivergence overlap or how they affect someone experiencing both.  This came together into a question about young people's mental health while they are waiting for a diagnosis.

The co-developed evidence mapping question asked:

What evidence exists on the mental health of young people waiting on a neurodiversity diagnosis?

The Evidence Mapping showed very little research done on this area. There was little work done with individuals prior to diagnosis, and little work exploring their mental health needs. 

The Evidence Map also indicated that more research looked at the family experience than the experience of the individual themselves. There was also very little intervention for this group, meaning very little on what could be done to support people during this time. 

Given these challenges and gaps, the team proposed a study which would firstly complete a full synthesis of work on neurodiversity to get a better understanding of different definitions and labels and ways of looking at neurodiversity (for example, using diagnoses or considering shared traits). The next phase of work would be to analyse data from different services to gather any evidence collected about the impact of being on a waiting list and to get a clearer picture of waiting times.  Finally, there would be focus groups and interviews with both young people and their families/carers to ask them how being on a waiting list was affecting them. Taken together, this would combine secondary evidence synthesis and data analysis with first hand accounts, to inform what can be done better for this group.

The purpose of this proposal is to share the priorities and ideas of young people with the research community, with a hope that these ideas are taken forward and youth voices embedded in future mental health research. Please feel free to use the ideas presented here to support future research bids, we would just ask that you let the Youth LIVES team know, and acknowledge the Youth LIVES project in any bids and papers published. Additionally, we would strongly recommend the use of participatory approaches with young people in future research inspired by these proposals, and can share details of your project with the young people involved in Youth LIVES if you are interested in working with them.