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Preventing poor mental health and promoting wellbeing in autistic secondary school pupils: the benefits and challenges of co-production.

In this blog, ARC North East and North Cumbria Research Fellow Angela Wearn describes the background to an Inclusive Schools project (Developing inclusive school environments: Optimising staff training to support positive mental health in autistic young people.), where diverse and inclusive partnership working has helped to address young people’s priorities.

Background to our project

Autism is a lifelong neurodevelopmental condition that is broadly diagnosed in relation to differences in social communication, focused interests and/or repetitive behaviours and sensory challenges.

Whilst research and practice has traditionally focused on the challenges of autism from a non-autistic perspective, there is a growing recognition of the strengths commonly found within the autistic community such as honesty, a strong sense of social justice, good long-term memory and heightened pattern recognition.

Most important though, is the understanding that no two autistic people are exactly the same and, just like everyone else, we all have our own strengths and challenges. Because of all of this we, in line with many within the autistic community, ask people think about and describe autism as a neurological difference, rather than a ‘disorder’.

Although autism isn’t a mental health condition, our community are much more likely to develop common mental health conditions such as anxiety, depression and eating disorders. These mental health challenges often begin in adolescence and link to experiences within high school. This is an area that was particularly important and relevant to some young people within the NENC ARC’s Young Person’s Advisory Network.

Through a priority-setting discussion, the group decided to develop a research project that explored the wellbeing of autistic young people in more detail. We decided to focus on training and information that school staff receive to support them in working alongside autistic pupils, as this was felt to be particularly influential on pupils’ wellbeing.

We linked with other autistic and non-autistic researchers and professionals to take our ideas forward and also sought input from a wider group of autistic young people. Here are some things autistic young people wanted to share during the co-production of our research proposal:

• School can be an incredibly overwhelming and challenging experience for autistic young people for many reasons – many of us experience sensory issues that are hard to ignore, particularly at break and lunchtimes and in PE lessons.
• There is lots of variation between and within schools – but one of the hardest things is when we experience a lack of understanding from school staff; sometimes we are labelled as ‘challenging’ or ‘difficult’, even when trying to make sense of school rules. We might get punished or shouted at when we aren’t intentionally ‘misbehaving’ – all of this can feel very unpredictable and can make us feel constantly on edge or anxious when attending school.
• A lack of understanding from school staff can also link to a lack of understanding amongst other pupils. For example, schools deliver information and raise awareness on a range of topics, but this does not tend to cover autism/autism acceptance. As a result, the general school population are not familiar with autism and what that means.
• The main desired outcome for this project would be ‘more understanding of autism within schools’ and more widespread available information delivered across schools.
• The group would also like to see other outcomes of the project: boosting the confidence of autistic young people to advocate for themselves, be involved in research and real change.

Benefits and challenges of a co-production approach

Following development of our research proposal, our project was successfully funded through the ARC’s Mental Health Capacity and Capability Fund. Work is now underway with our first work package. Even though our project is ongoing we are already making impact with our work – we have presented to a range of researchers, practitioners and members of the public, we are writing about our experiences of working together to help others include autistic young people in areas that affect them, and also have some work planned with other marginalised groups to explore how this topic affects their communities.

Working together in this way is a form of social justice, as autistic young people are very often excluded from genuinely contributing to research and decision-making around areas that affect them. Beyond that, it has also allowed us to draw from rich and varied real-life experiences when designing and conducting our research project. Despite the many positives, it’s important to acknowledge that it isn’t always easy. There can be differences in opinion to resolve, unexpected delays and challenges in bringing people together in a way that works for all (for example, some of us have school/work commitments during the day, whilst others have caring or other responsibilities on evenings and/or weekends).

What remains important is our commitment to valuing all voices within our team, having flexibility and an appreciation of individual circumstances and doing the best we can to ensure our activities are accessible as possible, for research participants and all members of our team, no matter what age!

Working in a diverse partnership takes a lot of time, and a lot of trial and error, but we are hopeful that our work together can generate valuable knowledge and conversation that will ultimately highlight the real-life experiences of autistic young people in mainstream schools.

A project summary is available here: Developing inclusive school environments: Optimising staff training to support positive mental health in autistic young people.

Further information is available by contacting Dr Angela Wearn, Research Fellow in Public Involvement and Community Engagement ([email protected])

If you are interested in joining our Young Person’s Advisory Network please contact Dr Felicity Shenton, ARC Public Involvement and Community Engagement Manager ([email protected])