The Neurodivergent Truth
Thank you for your interest in being part of this project. We’re really glad you’re here.
The Neurodivergent Truth is an independent, community-led initiative bringing together the voices and lived experiences of neurodivergent adults across Essex.
If you are autistic, have ADHD, dyslexia, dyspraxia, dyscalculia, dysgraphia or Tourette syndrome, or recognise these traits and experiences in yourself without a formal diagnosis, and you are aged 18 or over with a current or previous connection to Essex through living or working there, we would love to hear from you.
Created by neurodivergent people, for neurodivergent people, we are building a free online library of carefully anonymised personal accounts that explore the realities of being neurodivergent and how it shapes the way we experience, understand and engage with the world around us.
By sharing stories from all areas of life, from education and employment to friendships, relationships, parenting and everything in between, we hope to help others recognise their own experiences, feel less alone, and develop greater self-understanding, self-acceptance, self-compassion and confidence.
But the impact doesn’t stop there.
The library also gives professionals, services and organisations the opportunity to learn directly from the people they employ, work alongside and support. By making lived experiences easily accessible to a wider audience, we want to ensure that neurodivergent voices are meaningfully included in important conversations and decisions, helping to build greater understanding, challenge stigma and assumptions, and contribute to positive change and better outcomes for the neurodivergent community.
The truth is that there is no single neurodivergent experience. However, by bringing our voices together, we can create a fuller, more authentic picture of what being neurodivergent looks and feels like. One that recognises both strengths and challenges, celebrates our differences and shared experiences, and reflects the diversity of people, circumstances and perspectives across Essex.
Please visit
our website to learn more about The Neurodivergent Truth and how we will use the information you share with us. If you have any questions, you can contact us via the
contact page on our
website, email us at
info@summitservices.org.uk, or call us on 01255 429778.
This questionnaire is an opportunity to anonymously share your story in your own words.
Before anything is published, we will carefully review your responses and remove or amend any information that could identify you or someone else. This may include names, specific locations, employers, organisations or other personal details. We will also consider whether a combination of details could make someone identifiable, even if their name has been removed.
There are no right or wrong answers, and we encourage you to share as much detail as you feel comfortable with.
Please allow at least 45-50 minutes to complete the questionnaire. You can answer as many or as few questions as you feel comfortable with, skip any that aren't relevant or feel too personal, and take breaks or return to it later whenever you need to.
If you find the questionnaire overwhelming and would prefer to speak with someone directly, please skip to the "Next Steps" section at the end of the page where you can leave your contact details and a member of our team will get in touch with you.
None of the information you provide will ever be used to identify you.
Please select your age range
How do you identify in terms of neurodivergence?
Please select as many options as feel relevant to you. You do not need to have a formal diagnosis to take part. We welcome responses from people who are awaiting an assessment, wondering whether they might be neurodivergent, or recognise neurodivergent traits and experiences in themselves. This includes parents whose child has received a neurodivergent diagnosis and who recognise similar traits, experiences or patterns in their own lives.
Do you have any other health conditions?
Common neurodivergent co-morbidities can include:
Obsessive-Compulsive Disorder (OCD), Hypermobility, Fibromyalgia, Chronic Fatigue Syndrome, Anxiety Disorders, Depression, Post-Traumatic Stress Disorder (PTSD), Emotionally Unstable Personality Disorder (EUPD) or Borderline Personality Disorder (BPD), Sensory Processing Disorder, Sleep Disorders, Epilepsy, and Gastrointestinal Disorders (such as acid reflux, constipation, diarrhea, food intolerances and allergies, and Irritable Bowel Syndrome).
Would you let us know the district or unitary authority of Essex you live or work in (e.g. Tendring), or alternatively the first half of your post code (e.g. CO15)?
This information is generalised and does not reveal your work or home address.
What have your experiences of working been like?
Some guiding questions (optional):
1. How has being neurodivergent affected your experiences at work?
2. What (if anything) has gone well or felt positive?
3. What challenges or barriers have you experienced (if any)?
4. Have you experienced any discrimination or unfair treatment? If so, please describe.
5. How have you found social interaction at work?
6. How do you usually recognise when you’re becoming overwhelmed or burnt out?
7. Has there been any support, strategies, or accommodations that have helped you?
3. YOUR HEALTH & WELLBEING
How has being neurodivergent affected your mental or physical health?
Some guiding questions (optional):
1. How has your mental health been impacted, if at all? (e.g. stress, burnout, anxiety)
2. Has being neurodivergent, or any co-occurring conditions, affected your physical health (e.g. Fibromyalgia, Irritable Bowel Syndrome)?
3. Are there situations or environments that negatively impact your wellbeing?
4. Have you experienced any challenges accessing healthcare or social care?
5. Have you ever avoided seeking support? If so, what influenced that decision?
6. What changes would make healthcare or services more accessible or effective for you?
7. Has there been any support, strategies, or accommodations that have helped you?
4. RELATIONSHIPS & COMMUNITY
How would you describe your experiences with relationships (e.g. friendships, family, romantic, or community)?
Some guiding questions (optional):
1. What positive connections have you experienced, if any?
2. Have you had any difficult or challenging experiences involving others (e.g. conflict at work, feeling unsupported by family, abusive friendships or relationships)?
3. Are there any times when you felt included, understood, or accepted?
4. Have you found it easy or difficult to make and maintain connecions with others?
5. Do you feel able to be yourself around others? Why or why not?
6. Have you experienced any differences or challenges in communication or understanding others? (e.g. humour, flirting, social cues, expectations)
7. Have you experienced feeling excluded or misunderstood? If so, what happened?
5. ASSESSMENT AND DIAGNOSIS
What has your experience been of seeking or receiving a diagnosis (if applicable)?
Some guiding questions (optional):
1. What led you to consider seeking an assessment, if anything?
2. Can you describe your experience of seeking an assessment, including any barriers or delays?
3. How did you feel at different stages of the process (e.g. before, during, and after)?
4. How, if at all, has receiving (or not receiving) a diagnosis affected you?
5. Did you receive any guidance or support following your assessment or diagnosis?
6. What kind of support would have been helpful after assessment or diagnosis?
7. Is there anything you wish had been different about the process or follow-up support?
If you feel comfortable sharing, what role (if any) have drugs or alcohol played in your life?
Some guiding questions (optional):
1. Do you currently use drugs or alcohol?
2. Has being neurodivergent influenced your experiences with drugs or alcohol, if at all? (e.g. social situations, self-medication, relaxation, curiosity)
3. Are there particular situations or environments where you’re more or less likely to use substances?
4. In what ways, if any, have drugs or alcohol affected your mental health or wellbeing (positively or negatively)?
5. How has your relationship with drugs or alcohol changed over time, if at all?
6. Have you ever sought support or advice about drugs or alcohol? If so, what was helpful or unhelpful?
7. Do you feel existing support services understand neurodivergent experiences? Why or why not?
How has being neurodivergent affected your experience of having children?
Some guiding questions (optional):
1. Are there aspects of parenting that you find particularly challenging or rewarding?
2. Have your children influenced how you experience your own neurodivergence?
3. Have you developed any strategies, routines, or approaches that help you parent?
4. Has your experience of parenting changed over time?
5. Has becoming a parent affected your wellbeing, identity, or support needs?
6. What kinds of support, resources, or understanding have been most helpful to you?
7. Is there anything you wish other people understood about being a neurodivergent parent?
Is there anything about being neurodivergent that you wish more people understood?
Have you experienced any trauma or distressing events that have affected you? If you feel comfortable, please describe how this may have impacted you, including in relation to being neurodivergent.
If relevant to you, how, if at all, has perimenopause or menopause affected your experience of being neurodivergent?
What changes in society, workplaces, education, or healthcare would have made the biggest positive difference in your life?
What advice would you give to other neurodivergent people, or to your younger self?
Any other thoughts or experiences you’d like to share?
If you would like to, and feel comfortable doing so, you would be very welcome to take part in an optional one-to-one interview. These will be informal, judgement-free conversations with another neurodivergent member of staff from SUMMIT, giving you the opportunity to share your experiences in your own way and at your own pace. Both male and female interviewers are available, so you can choose who you would feel most comfortable speaking with.
There is no expectation or pressure to prepare anything in advance, and you can choose a time that works best for you. We can also arrange to meet in whatever way feels most comfortable, whether by phone, online or in person.
If you are interested, you can leave your name and either a phone number or email address below, and we will get in touch. Your contact details will be treated as private and confidential.
The aim of The Neurodivergent Truth is to create a freely accessible community resource that can be shared and used to improve the lives of neurodivergent people, now and in the future.
Your experiences remain your own. By taking part, you are not giving SUMMIT ownership of your words or experiences, or exclusive rights to use them. However, you agree that anonymised quotations and extracts from your contributions can be used, shared, copied and adapted on a permanent, worldwide and royalty-free basis. This may include their use in education, training, research, publications, awareness raising, funding applications, service improvement, policy development and other resources that benefit the neurodivergent community.
This permission is non-exclusive, meaning SUMMIT does not own or control the material or have the exclusive right to decide who can use it. Other individuals and organisations can also share, publish, adapt and reuse the material independently of SUMMIT.
The material must be used to support positive change for neurodivergent people or promote greater understanding and acceptance of neurodivergence. It must not be sold or used primarily for private commercial profit, and appropriate acknowledgement must be given to The Neurodivergent Truth project.
When you are ready, please select the Submit button to send your responses.
