Quick-read summary
School can be an incredibly overwhelming and challenging experience for autistic young people for many reasons.
This young-person initiated and led project aimed to explore autistic young people’s experiences of mainstream secondary school and consider the impact this has on mental health. We were particularly interested in the role of the school environment, and training and information school staff receive to support them in working with autistic pupils.
We carried out an anonymous survey with school staff in the region and conducted peer-led focus groups and workshops with neurodivergent young people (aged 11-19), who had experience of attending mainstream secondary school.
During the study, some of the young people we worked with preferred the term ‘neurodivergent’ given they, and other autistic people, often have a range of co-occurring conditions such as dyslexia, dyspraxia, Tic disorder, ADHD and/or sensory processing disorder.
Findings highlighted the differences between national policy and young people’s everyday experience.
We suggest intervention is needed to better resource and equip mainstream secondary schools to meaningfully support neurodivergent pupils.
You can read about the background to this project, in this blog
Who is this evidence useful for?
Those working in education policy and practice, teachers, Special Educational Needs and Disabilities Co-ordinators (SENDCo’s), local authority, researchers, parents/carers and members of the public.
What is the issue?
Autism is a lifelong neurodevelopmental disability which has high levels of co-occurrence with mental health conditions. For example, it is estimated around 80% of autistic people experience common mental health issues such as anxiety and depression throughout their lifetimes and are at higher risk of suicidal thoughts and behaviours than the general population.
Past research has found that mental health often declines in adolescence and is linked with pressures and challenges experienced within secondary school. It is estimated that 70% of autistic pupils are educated in mainstream (i.e. non-specialist) schools.
It is important to understand how we can best prevent poor mental health and promote wellbeing for autistic pupils attending mainstream schools.
As a lot of previous training and research around autism has been conducted and led by non-autistic people, it is also vitally important that any school-based policies and/or staff training packages centre the experience and perspectives of autistic young people themselves.
Research summary.
A team of neurodivergent young people, autistic and non-autistic researchers and public involvement professionals came together across several meetings to develop the study, explore topics from a young person’s perspective and support data analysis and interpretation.
We asked mainstream secondary school staff from across the region to complete an anonymous survey highlighting existing training and any barriers/facilitators to engagement.
We also held three peer-led focus groups and a participatory workshop with neurodivergent young people in the North East of England, to explore factors that impacted upon their mental health and identify key areas of change
Key findings
Mainstream school staff training and information
- Most commonly, staff reported taking part in in-person, in-school training via a SENDCo and/or accessed training and information themselves (for example through self-directed reading and/or online resources).
- Participants described challenges in accessing suitable autism-focused training opportunities and implementing training into their everyday work.
- Learning from those with lived experience helped to develop greater understanding of autism and neurodivergence, and supported translation of knowledge into practice.
- Suggested ways to improve training provision included greater inclusion of practical examples and ‘real life’ successful strategies supporting autistic pupils in the classroom.
School-based factors impacting neurodivergent pupils’ mental health
- Young people described four broad areas that impacted their mental health and wellbeing related to 1) Interactions with the school community 2) Policies and procedures 3) Ability to access meaningful support and 4) The general school environment.
- Overall, the cumulative and unpredictable nature of school-based stressors often resulted in overwhelming distress, negative anticipation, anxiety and exhaustion.
Young-person led recommendations for change
- While all of the topics raised during the focus groups were felt to be of high influence, interactions with school staff, poor understanding of autism (amongst staff and peers) and availability of meaningful support were the top three areas deemed most influential on mental health.
- Peer researchers developed a range of recommendations to support wellbeing, focused on the development of neuro-affirmative, co-created approaches to increase feelings of belonging and safety in schools.
Why is this important?
Our findings suggest that mainstream secondary schools may struggle to adequately and meaningfully support neurodivergent pupils without additional training, support and staff resource.
In particular, wider understanding and acceptance of neurodivergence is needed.
It is also likely that existing school policies and approaches may be having the opposite effect of what was intended (For example, approaches to increasing attendance resulting in greater absence and disengagement for those most at-risk of school-based distress).
Often, simple adaptations or changes to attitudes/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.
Genuine involvement of autistic young people is critical to improving outcomes and addressing ongoing mental health inequalities within this group.
How were people/community groups/patients involved in this work?
This project was initiated and led by neurodivergent young people and researchers. We also worked alongside wider groups of neurodivergent young people to develop our project protocol and findings.
Young people were part of our core research team and peer researchers throughout, supporting in data collection, analysis and sharing of findings. Our project steering group also included young people and other public and community sector partners.
Recommendations for policy/practice
It is important that poor mental health is not normalised within this group – autistic and other neurodivergent young people can and do thrive in the right environment.
We suggest that, despite existing national policy, intervention is needed to address inadequate resource and training for schools, particularly in terms of increasing genuine opportunities to involve autistic young people when developing school-based policies and approaches that impact upon them.
Attendance and other policies should be urgently reviewed to consider the disproportionate impact on neurodivergent pupils and families.
Schools should prioritise working closely with young people, parents and carers to find ways to recognise, support and value neurological difference across the school community.
Our findings also highlight a range of key topics that can inform and refine existing training provision.
What happens next?
A full report of project findings is being prepared. We are also currently sharing our findings with local authority colleagues, research special interest groups and networks, local communities and at an international conference.
Policy briefs can be downloaded below.
The research team have shared more information and guidance on working in partnership with neurodivergent young people within this book: Championing Co-production in the Design of Inclusive Practices: Positioning Children and Young People’s Voices at the Heart of Education.
For more information please contact
Dr Angela Wearn
Email: angela.wearn@newcastle.ac.uk
X: @AngWearn
Bluesky: @ang-w.bsky.social
Project partners
This project was a partnership between North East and North Cumbria ARC Young Person’s Advisory Network, Newcastle University, Durham University, CNTW NHS Trust, Children North East and Gladstone Terrace Centre for Young People.
How was this work was funded?
This work was funded by the NIHR ARC NENC Mental Health Capacity and Capability fund.