The Neurodivergent Truth

THE NEURODIVERGENT TRUTH

ABOUT THE PROJECT

The Neurodivergent Truth is a large-scale, self-funded, community-driven project that explores what it is really like to be neurodivergent in Essex today, from the positives and challenges to everything in between.

If you have a formal diagnosis of Autism, ADHD, Dyslexia, Dyspraxia, Dyscalculia, Dysgraphia or Tourette’s, or if you recognise yourself in neurodivergent traits and co-occurring experiences such as OCD, hypermobility or fibromyalgia, we invite adults aged 18 and over who are currently based in Essex, or who have lived or worked there previously, to take part and share their stories with us.

We would like to learn all about your experiences with:

Work and education
Mental and physical health
Housing
Drugs and alcohol use
Family, friendships and relationships
Community and belonging
Getting a diagnosis and the support received afterwards
Any other topics you feel would be important to highlight

Your insights and stories are at the heart of this work. They will help us create free, practical resources rooted in lived experience, supporting neurodivergent people to feel less alone, better understand themselves, and feel more empowered, while also strengthening understanding and practice across workplaces, education, health and social care, and the wider community.

We treat what people share with us with deep respect, and no one involved in this project will ever profit from it. Our commitment is simple: everything we learn is used to inform, empower, and benefit the neurodivergent community.

'It was an eye-opening moment when I got my diagnosis, because I had to go back through my past and re-evaluate how things had been. I already knew I was different, I knew I had to try harder than others, and I’d come to terms with the fact that there were certain things I wouldn’t be able to do. But even after that, there was still this realisation that my life would have been a lot better had I been treated differently. That was the biggest thing for me.'

'I felt like I went into work and was completely numb the whole time. I was constantly being told, "You're not as chirpy as you used to be," but it's because I'd just completely stripped myself back to try and get through my job. It was like I couldn't do anything. I wasn't really able to communicate with my clients how I used to. I was just rushing between meetings, trying to get them done, because I wasn't able to stay on top of my workflow properly. Before, I was able to juggle everything really well. But I was going through a lot, and that, combined with the emotional dysregulation, meant I was just going to the toilet and sobbing between appointments.'

WHY aRE we DOING THIS?

Too often, decisions about neurodivergent people are made without neurodivergent people being involved. We want to change that.

We know firsthand that being neurodivergent in a neurotypical world can involve facing barriers and inequalities, but it can also mean developing unique strengths, insights, empathy, and creative ways of thinking to navigate and overcome these challenges.

These experiences are not just stories, they are expertise that deserve to be heard, respected, and learned from. This project is an opportunity to share your own experiences in your own way, in your own time, and in your own words. It is designed to grow and adapt over time, shaped by the people who take part and what we learn together.

By bringing these experiences together, we have three goals that we are working towards, with the aim of creating meaningful change.

1. Create free resources for neurodivergent individuals and their families.

We will create free resources designed to support neurodivergent people, particularly those who have been recently diagnosed or are beginning to explore their identity. These resources will be grounded in lived experience and aim to help individuals better understand themselves, their experiences, and their needs.

Alongside reducing feelings of isolation or confusion by showing that many others share similar experiences, we also want to support empowerment, self-discovery, and self-acceptance.

Our aim is to highlight both the challenges and the strengths of neurodivergent experiences, helping people feel more confident in understanding and embracing who they are.

2. Create free resources for organisations and service providers.

We will develop free information packs and resources to help employers, colleges, universities, and public services better understand and support neurodivergent people. There are still significant gaps in awareness, understanding, and training across many sectors, which can create barriers to effective inclusion and support.

These materials will also provide practical, lived-experience-informed guidance to improve inclusion across workplaces, education, health and social care. They will be designed to help organisations better recognise and utilise the strengths, skills, and perspectives of neurodivergent people, hopefully leading to improved communication, wellbeing, and outcomes.

3. Amplify lived experience and collective voices by sharing what we learn.

We do not own the stories shared with us. They remain the property of those who share them. All research from this project will be carefully anonymised and made freely available at no cost to public healthcare services, community sector organisations, universities, and public research bodies. It is shared on the clear condition that it is used only for non-commercial purposes and solely for the benefit of the neurodivergent community.

By sharing these insights beyond SUMMIT, we aim to inform research, improve services, and strengthen community initiatives, while also enabling organisations with greater capacity or specialist expertise to build on this work in ways SUMMIT may not be able to. This supports more effective, responsive, and inclusive provision for neurodivergent people across Essex.

Ways to get involved

You can take part in whatever way feels right for you. You might choose to share your experiences once, stay involved over time to help shape decisions and co-produce resources, or take part in a more flexible way by joining in when it suits you. Please let us know if you would prefer to speak with a male or female member of the SUMMIT team.

You are welcome to remain anonymous if that feels more comfortable.

What to share your story? Here's how you can do it.

Complete our secure and anonymous online questionnaire at https://tally.so/r/nW7g4R
Email us to arrange a friendly and informal chat in person, online on Teams or Zoom, or over the phone
Message us using the contact form on this page

Whatever you choose to share is enough. Every experience matters, and each story, no matter how big or small, helps us build a greater understanding of what it is like to be neurodivergent today and informs the development of more inclusive, supportive, and responsive communities, services, and systems.

WANT TO Take part?

You can use this form to tell us your story, or to let us know if you’re interested in learning more about the project.

You are always in control of what you share and how you take part. You can pause or withdraw at any time, with no pressure to continue. All contributions will be handled ethically, with care and respect. If we use any quotes publicly, they will be carefully reviewed to remove or change details that could unintentionally identify you. All contributions will be attributed to an anonymous participant. Your privacy and safety is important to us, so you can take part with confidence.