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Young people lead research to help autistic pupils feel safe and included in school

Neurodiverse young people from the North East and North Cumbria have led new research highlighting the day-to-day challenges that autistic pupils face in mainstream high school, and how this impacts their mental health.

The research has led to recommendations setting out steps that could be taken to help autistic pupils feel safer and more included in school.

Figures suggest approximately 70% of autistic pupils are educated in mainstream schools, but a recent report from the National Autistic Society found that less half of autistic children were happy in their school environment.  Previous research also indicates that many autistic young people begin to develop serious mental health issues during adolescence.

The work has been led by peer-researchers from the NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC) Young Public Advisory Network (YPAN), supported by autistic and non-autistic academic researchers.

Peer research is a method that empowers people with lived experience to lead and conduct research, aiming to generate knowledge and create positive change within their communities.

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

They linked with other autistic and non-autistic researchers and professionals to take their ideas forward and sought input from a wider group of autistic young people. Following development of their research proposal, the project was successfully funded through the NIHR ARC NENCs Mental Health Capacity and Capability Fund.

Dr Angela Wearn, a Research Fellow funded by the NIHR ARC NENC, guided the peer researchers throughout the project.

She said: “Although autism isn’t a mental health condition, the autistic 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 young people within the NENC ARC’s Young Person’s Advisory Network.

“It’s important to understand how we can best prevent poor mental health and promote wellbeing for autistic pupils. As a lot of previous training and research around autism has been conducted and led by non -autistic people, it is also vitally important to understand and centre the experience and perspectives of autistic young people themselves.”

The research team co-developed and carried out peer-led focus groups and a participatory workshop with neurodivergent young people aged 11-19 who had experience of attending a mainstream secondary school within the North East and North Cumbria.

Mainstream secondary school staff across the region also took part in a survey where they shared their experiences of existing training and any barriers or facilitators to engagement.

What did the research uncover?

Lack of understanding – many autistic pupils described a lack of understanding from school staff.

Sensory challenges – pupils experienced overwhelming sensory challenges throughout the school day, which influenced negatively on their mental health.

Anxiety – some pupils described anxiety about teachers, students and feeling trapped.

Blame and punishment – pupils felt additionally punished when needing time out, or time away from school, to recover. Parents being fined for pupils’ non-attendance due to mental health puts additional pressure on pupils.

Policies – the work highlighted some of the negative impacts of existing policies and procedures, for example, approaches to increasing attendance resulting in greater absence and disengagement for those most at-risk of school-based distress.

Lack of support – there was a minimal ability to access meaningful support

More acceptance – participants suggested acceptance from school staff and peers, as well as feeling heard had a particularly positive impact on how they felt.

Doing things differently – some individuals highlighted differences in how they were treated between school and sixth form, feeling such approaches could result in better outcomes across year groups.

Recommendations for change

The group developed recommendations to support wellbeing, focused on development of neuro-affirmative, co-created approaches to increase belongness and safety within schools.

Recommendations include:

• Improve interactions between school staff and pupils
• Improve understanding of autism amongst staff and peers, including through better staff training
• Make meaningful support more available.

Dr Wearn added: “Our findings suggest that mainstream secondary schools may struggle to adequately and meaningfully support neurodivergent pupils without additional training, support and staff resource. Often, simple adaptations or changes to attitudes and language can have a big impact on how safe and included young people feel in school and prevent or minimise poor outcomes.

“School staff, and the training they receive, have a particularly influential role in developing more inclusive environments. Alongside this, genuine involvement of autistic young people is critical to improving outcomes and addressing ongoing mental health inequalities within this group.”

The research team are currently developing a detailed report detailing the project’s full findings.

Read more about the work on our Evidence Hub, including briefings which summarise the focus groups with pupils, and surveys with staff.

This work was led by the NIHR ARC North East and North Cumbria Young Person’s Advisory Network; Newcastle University; Durham University; CNTW NHS Foundation Trust; Children North East and Gladstone Terrace Centre for Young People.