The Neurodivergent Truth

ABOUT THE PROJECT

The Neurodivergent Truth is an independent, community-led initiative that brings together the voices, stories and perspectives of neurodivergent people across Essex. Created by neurodivergent people, for neurodivergent people, it ensures lived experience is at the heart of conversations about neurodiversity.

If you’re autistic or have ADHD, dyslexia, dyspraxia, dyscalculia, dysgraphia, or Tourette syndrome, we’d love to hear from you. We also welcome those who do not have a formal diagnosis but recognise themselves in neurodivergent experiences or traits, including having co-occurring conditions such as OCD, hypermobility, or fibromyalgia. To take part, you simply need to be aged 18 or over and have a connection to Essex.

The project captures and shares what everyday life is really like for neurodivergent people, from the positives and challenges to everything in between. We want to understand not only the difficulties, barriers, and inequalities some may encounter, but also the strengths, achievements, creative approaches, and unique perspectives that deserve to be recognised and may inspire others.

Some of the topics we are exploring include:

Work, education and employment
Mental and physical health
Family, friendships and relationships
Community, belonging and social connections
Drugs and alcohol use
Seeking a diagnosis and the support you received afterwards
Parenting as a neurodivergent person
Anything else you feel is important to share

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.

By sharing your story, you’ll help us build a collection of free resources where neurodivergent people can learn from one another, recognise shared experiences, and gain a deeper understanding of themselves. Learning about the challenges others have encountered, the strengths they’ve discovered, and the strategies that have helped them can reduce feelings of isolation, build confidence, and support greater self-acceptance and self-advocacy. The project will also improve knowledge and raise awareness among employers, educators, healthcare professionals, and public services, helping to challenge misconceptions and create more inclusive environments across Essex.

As more people take part, The Neurodivergent Truth will continue to grow and evolve, shaped by the stories and ideas shared with us. Every perspective contributes to a more accurate, authentic, and inclusive picture of neurodivergent life in Essex today, ensuring that future support, services, and policies are shaped with, and informed by, the lived experiences of the community they are designed for.

Let's build something amazing

1. Free digital resources that support neurodivergent people through shared experiences, information and reassurance.

We will develop and co-design with project participants free and accessible resources that combine lived experience, clear information and practical guidance. For neurodivergent people, they will provide reassurance, help people better understand themselves, and show that others share many of the same experiences, reducing feelings of isolation while building confidence and self-acceptance.

For employers, educators, healthcare professionals and public services, they will offer insight into the everyday realities of being neurodivergent, helping to challenge misconceptions and support more inclusive policies, practices and environments. Together, these resources will help create greater understanding, acceptance and inclusion across Essex.

2. Create an online library of neurodivergent lived experience to makes the learning we gain available to everyone.

We will build a free online library of carefully anonymised insights from the neurodivergent community, gathered through the conversations and submissions that form part of this project. Organised by themes and topics, it will make learning from lived experience accessible to all in a simple, practical format and will be freely available to everyone: individuals, public healthcare services, community organisations, universities, and research bodies.

By sharing this collective knowledge in this unique way, we aim to empower both participants and recipients, amplify neurodivergent voices, inform research, improve services, encourage collaboration, and support more inclusive practice. We also hope the library will enable organisations and services with greater capacity or specialist expertise to build on this work, creating wider, longer-lasting benefits for neurodivergent people across Essex.

How to take part

Want to get involved? You can choose which way works best for you.

Arrange an informal conversation by email or through our contact form. We can meet in person, speak over the phone, or connect online via Microsoft Teams or Zoom.
Contribute anonymously by completing our online questionnaire: https://tally.so/r/nW7g4R

There is no right or wrong way to take part. You can contribute as much or as little as you'd like, and most importantly, you can tell your story in your own way, in your own time, and in your own words.

Everyone involved in delivering The Neurodivergent Truth is neurodivergent themselves and bring their own lived experience to the project. We know that speaking to someone you don't know can be daunting, so if you would feel more comfortable speaking with a male or female member of staff, then please let us know when arranging your interview.

Download Flyer

Important information

The aim of The Neurodivergent Truth is to create an open community resource that can continue to benefit the neurodivergent community long after this project has ended. By making anonymised lived experience openly available to all, we hope it can be shared, adapted, and used to improve understanding, research, services, and support, regardless of who develops future resources.

All published quotations and story excerpts will be carefully anonymised and released under the Creative Commons Attribution–NonCommercial 4.0 International (CC BY-NC 4.0) licence. This allows anyone to copy, share, adapt, and reuse the material for non-commercial purposes, provided they give appropriate credit and comply with the licence terms.

Importantly, your experiences remain your own. By taking part, you are not transferring ownership of your lived experience to SUMMIT, nor are you giving SUMMIT exclusive rights to use your words. No organisation, including SUMMIT, can claim exclusive ownership or control over your story. Instead, you are giving SUMMIT a perpetual (does not expire), worldwide, non-exclusive, royalty-free licence to publish carefully anonymised quotations and excerpts from your contribution. These anonymised materials may be utilised by SUMMIT and others to support the neurodivergent community through activities such as education, training, research, awareness raising, service improvement, policy development, publications, funding applications, and the development of other non-commercial resources.

Because this licence is non-exclusive, other individuals and organisations may also use, adapt, publish, or build on the published material without needing SUMMIT's permission, provided they comply with the CC BY-NC 4.0 licence. Please be aware that once anonymised quotations or story excerpts have been published under this licence, they may be copied and shared by others. While SUMMIT will always respect any request to withdraw unpublished material, it may not be possible to remove copies that have already been downloaded, shared, or republished by third parties.

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 with no pressure to continue or withdraw at any time before publication. 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 and assigned a unique 5 digit ID. Your privacy and safety is important to us, so you can take part with confidence.