The Neurodivergent Truth is an independent, community-led initiative bringing together the voices of neurodivergent people from across Essex.
We are building a free online library of anonymised stories that explores what everyday life can really be like, from education and employment to friendships, relationships and parenting. The positives, challenges, differences, and everything in between.
By sharing your story, you could help someone make sense of their own journey, see things from another perspective, or simply feel less alone. The collection will also give professionals, services and organisations the opportunity to learn directly from first-hand experiences of the people they work alongside and support.
Together, we can create a more authentic picture of what being neurodivergent can look like. One that captures the diversity of people, perspectives and circumstances. One that helps raise awareness, deepen understanding and break down shame and stigma. One that encourages more inclusive approaches and brings lived experience into the wider conversation in a way that is accessible, impactful and empowering.
Over 80 people have taken part so far.
Your voice matters. Be heard.
Why we are doing this
For many people, discovering that they are neurodivergent is just the beginning.
It can change how you understand your past, see yourself in the present, and make sense of the world around you. Things that once felt confusing, overwhelming or like personal failures can suddenly begin to make sense.
But finding clear, accessible information about what being neurodivergent might actually mean to you isn't always easy.
Clinical definitions and diagnostic criteria are important, but they can only tell part of the story. They don't always capture what it is like to navigate everyday demands, sensory overload, social situations or unexpected changes, or what it can mean to need more time to recover.
They may not reflect the impact of busy environments, interruptions, deadlines and changes to routines. Nor do they always capture the ways that fatigue, burnout and masking can affect identity, self-worth, and mental and physical wellbeing.
And there is no single way to be neurodivergent.
Two people with the same diagnosis can have completely different experiences. Something that feels easy for one person might be incredibly difficult for another, while something one person enjoys might leave someone else exhausted. You might strongly identify with one aspect of neurodivergence and not recognise yourself in another.
What you need, want, prioritise or struggle with can also change over time, depending on your environment, circumstances and stage of life.
Stories can help bring these differences to life. They give us insight into experiences that can be difficult to explain, and help us understand not just what neurodivergence is, but what it can actually look and feel like.
That’s why the Neurodivergent Truth isn't about finding one defining answer for what it means to be neurodivergent. It's about building a collection of firsthand accounts that show how creative, unpredictable, complicated, contradictory, challenging, funny, frustrating, isolating and rewarding neurodivergent life can be.
Our commitment is simple: to use what we learn to inform, empower and ultimately benefit everyone.
For neurodivergent people
The Neurodivergent Truth is for anyone who may be neurodivergent, wherever they are on their journey. You might be waiting for an assessment, recently diagnosed, have known for years, or be just starting to explore what neurodivergence might mean for you.
Perhaps you have spent years wondering why certain things seem harder for you than they appear to be for other people, or why you have often felt like an outsider in a world that does not always seem designed with you in mind.
Maybe you have learned to hide parts of yourself to fit in, or have been told you are too sensitive, too emotional, too disorganised, too intense, too quiet, too difficult, too much, or simply not trying hard enough.
Finding words for these experiences can be difficult, especially if you have spent years believing you were the only person who felt this way.
Sometimes, hearing another person describe something familiar can change how you see yourself and your life, turning uncertainty into understanding, remind them they are not alone, and helping you move forward with greater confidence.
For professionals and services
Too often, decisions that affect neurodivergent people are made without their voices being heard, understood or accepted. We want to change that.
The Neurodivergent Truth will provide employers, educators, healthcare professionals, social workers, researchers, councils, policymakers, charities and other organisations with access to a growing collection of anonymised, first-hand accounts from people with a range of neurodivergent experiences.
By making lived experience freely available and easy to access, the library can help encourage more inclusive and collaborative approaches to communication, environments, healthcare, employment and services, creating wider, long-lasting benefits for the neurodivergent community across Essex.
The collection is not intended to replace direct conversations with neurodivergent people or their involvement in decision-making. Instead, it offers another way to learn from lived experience, complementing other forms of evidence and insight to strengthen knowledge and understanding, and inform research, training, funding applications, policy and service design.
FAQs
Neurodivergent Truth is for neurodivergent adults who live or work in Essex, or have done so in the past.
If you are autistic or have ADHD, dyslexia, dyspraxia, dyscalculia, dysgraphia or Tourette syndrome, we would love to hear from you.
You do not need a formal diagnosis to take part. We welcome people who are waiting for an assessment, wondering whether they may be neurodivergent, are parents of children who have recently been diagnosed, or simply recognise neurodivergent traits and experiences in themselves.The interview is relaxed, flexible and led by you.
You’ll have a conversation with someone who is neurodivergent themselves and understands how important it can be to have a space where you can speak openly and honestly, without judgement.
You don't need to prepare anything beforehand. There is no rigid list of questions. We can have a more structured conversation if you prefer, or simply explore the subjects that you’d most like to talk about.
You can tell your story in your own words and at your own pace. If you become tired, upset or overstimulated, you can pause, take a break, change the subject or end the conversation at any time.
Interviews can take place in person, over the phone or online using Microsoft Teams or Zoom. We'll explain how long the conversation is expected to take when we arrange it.
Before you take part, we'll explain what information we collect, how it will be used and what choices you have, so you can decide whether taking part feels right for you.
If you would rather not speak to anyone, you can also share your story anonymously through our online questionnaire.We want to explore the different aspects of being neurodivergent, so there are many things we talk about.
These could include work, education, friendships, relationships, family, parenting, community, belonging, mental and physical health, drugs and alcohol, assessment and diagnosis, getting support, masking, sensory experiences, fatigue, burnout, executive functioning, routine, change, demand avoidance, special interests, self-esteem, people-pleasing, rejection sensitivity, injustice, time blindness and many other aspects of everyday life.
We may also explore common co-occurring conditions and other experiences that some neurodivergent people report, such as OCD, hypermobility, digestive conditions, fibromyalgia, ARFID, trauma, BPD, EUPD and CPTSD.
These are examples, not a checklist. You will never be expected to discuss everything or disclose anything you're uncomfortable with.
There are no right or wrong things to talk about. Your contribution does not need to be unusual or extraordinary. We want to hear about everyday life, including things that might seem small, ordinary, mundane or difficult to explain.With your permission, we'll record and transcribe the conversation so that we can accurately capture what you tell us. Parts of your interview will then be edited into shorter, anonymised quotes for publication on The Neurodivergent Truth website. We will take care to preserve the meaning of what you said. These will be organised into different categories and themes so that people can explore experiences that are relevant to them.
Sharing your experiences with us does not give SUMMIT, or anyone else, ownership of your words or exclusive rights to your story.
The library will be available under the Creative Commons Attribution-NonCommercial 4.0 International licence.
This allows other people and organisations to copy, share, publish, archive, adapt and reuse material from the library, provided they give appropriate credit and do not use it primarily for commercial advantage or monetary compensation.
For example, material may be used as part of paid work such as training, consultancy or service design, or to support funding applications. Whether a particular use is considered commercial will depend on its purpose and circumstances.
By making the material available under an open licence, we hope it can reach people who need it and continue to be useful long after an individual contribution has been published.Yes. Protecting your privacy is extremely important to us.
Before you take part, we'll explain what information we collect, who can access it, how it is stored and how it may be used.
Before anything is published, we will carefully review it for information that could identify you or someone else. This might include names, specific locations, employers, organisations or other personal details. We'll also consider whether a combination of details could identify someone, even when their name has been removed.
For example:
Original quote
“I was diagnosed with ADHD when I was 29, and I was really struggling working as a project coordinator at a construction company in Ipswich. I kept missing deadlines because I was trying to juggle too many things at once, but Sarah, my manager, helped me find a much more flexible way to manage my workload.”
Published quote
“I was diagnosed with ADHD in my twenties, and I was really struggling with my role in construction. I kept missing deadlines because I was trying to juggle too many things at once, but my manager helped me find a much more flexible way to manage my workload.”
Your personal information will be kept confidential and handled in accordance with SUMMIT's privacy notice and applicable data-protection law.
If you tell us something that indicates that you or someone else may be at serious risk of harm, we may need to share relevant information with appropriate professionals or authorities. This would be handled in accordance with our safeguarding procedures and legal obligations.That's okay. Participation is completely voluntary. You decide whether to contribute, what to discuss and how much information to provide.
Before we publish any quotes from your interview, you can ask to see what we plan to use, ask questions or request changes.
You can also tell us that you no longer want to take part, without giving a reason. We'll explain what options are available depending on how far your contribution has progressed.
Once something has been published online, other people may have copied, shared or adapted it. This means we cannot guarantee that every copy can be removed from third-party websites, archives or other places where it may have been reproduced.
We will always do what we reasonably can to respect your wishes.
What's the next step?
If you would like to find out more or are interested in taking part, please complete the form or email us directly.
Contacting us does not commit you to taking part.
We will answer your questions, explain what happens next and give you time to decide whether you would like to contribute. We can also discuss any adjustments that would help you feel comfortable and supported, such as taking breaks or having your camera off.
If you would prefer to speak with a male or female member of staff, please let us know and we will do our best to accommodate this.
Rather not speak to anyone? Contribute anonymously by completing our online questionnaire: https://tally.so/r/nW7g4R