Why do we need participatory research into autistic young people’s mental health?

The MWAY project’s Young Persons Advisory Group (YPAG) recently had their first meeting! The YPAG is a group of autistic young people aged 13-19 who are shaping the project. In this first meeting, the YPAG gave us advice about how to do interviews with autistic young people and how to make sure we’re reaching young people from diverse backgrounds. After the meeting, we spoke to two YPAG members, Lily (16 years old) and Thee (15 years old) about why research into autistic young people’s mental health is important to them and why we need to involve young people in research.

Research into autistic young people’s mental health is important

Thee emphasised that mental health issues are very common for autistic people and can have a big impact on autistic people’s lives, especially for young people who are going through a pivotal stage in their life.

‘The likelihood of suffering from anxiety and depression as an autistic young person is very high. Personally, I have suffered a lot from both anxiety and depression, which ended up with me having weekly therapy sessions for months. This was largely because of the toxic environment that is cultivated in schools. Even for non-autistic students, the most pivotal developmental years of one's life can be hell, and so it is important to take into account autistic young people's views.’

Despite the importance of the topic, Lily and Thee both felt autistic young people’s mental health is overlooked. Lily emphasised that there is a lack of awareness about anxiety and depression in autistic young people and this can make it more difficult to identify and cope with these challenges.

‘I think it’s really important for young individuals’ study about anxiety and depression as it isn’t spoken enough about how they affect people with autism. Having autism can come with lots of challenges and some of that is anxiety and depression. It needs to be studied to help others be aware of these issues as well as of the individual themselves. If you’re not aware that you’re dealing with either of these it can be really challenging to deal with these feelings.’

Lily went on to say that the lack of understanding around autism and mental health could mean a lack of support.

‘Getting help and support is still very challenging, yes maybe more people are being diagnosed with autism which is great that it is finally being recognized but there is not enough help and resources to help with dealing will the challenges this brings such as anxiety and depression. We need to have more research done on this to help with how to cope with these conditions. […] I have massively struggled and still do with my mental health. I wish I had more support to deal with it. So, it’s really important to me that other autistic people get the help and support’

The value of participatory research with autistic young people

Lily and Thee spoke of the value that personal experience can bring to research.

‘we are the ones that are dealing with these challenges that autism brings. Yes, professionals are useful in research but not all have autism, so they have never experience what autistic people face in day-to-day life. Autistic young people are useful to the research as we can give suggestions on things that work and don’t work for them […] we know so much about autism and how it makes us feel.’ (Lily)

‘It's necessary in all research to have a say from people who are directly impacted by the topic. Autistic young people are an important part of the autistic community […] its important to ensure that young people are having their voices heard.’ (Thee)

Thee additionally felt that it is especially important that young people who are less heard from in research are given a voice.

‘I wanted to be able to put in my own opinion on what will be a really fascinating piece of academic research as someone who is not a stereotypical autistic person, being that I was diagnosed when I was slightly older, I was born female, and I'm queer. Being able to share my thoughts about something integral to my identity that people overlooked for so long is really important to me.’

What having a voice in research can mean for young people

Lily and Thee spoke about the benefits of being involved in research as a young person, including the opportunity to connect with others with similar experiences and gain new knowledge.

‘I think the MWAY study and young persons’ advisory panel is doing good, its helping others discover what anxiety and depression is as well of being able to connect to others who experience the same thing. I am really interested in what other participants think about what is currently offered and what needs more work on to support us. Another reason I chose to be part of the MWAY study is so I can learn more on anxiety and depression as this massively affects my life and others.’ (Lily)

‘having the ability to discuss the difficulties of my life that actually affect me is really refreshing - so much of my life I have experienced people saying the difficulties of being autistic is just having bad social skills, and completely ignoring the disabling mental aspects of it. Additionally, it is really impactful to have a group of people, all vastly different from you, but still having a common thread between all of you - studies such as the MWAY study always help me feel seen, especially when I spent such a long time in my childhood feeling alienated and ostracised by my peers.’ (Thee)

Thanks to Thee and Lily for sharing their perspectives on this topic.

The next YPAG meeting will be held in the autumn when we’ll be working with the YPAG to understand some of our findings!