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 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.
This questionnaire is an opportunity to share your story in your own words.
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 experiences with us.
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.
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.
There are no right or wrong answers, and you can share as much or as little detail as you feel comfortable with. You can answer as many or as few questions as you like, skip anything, take breaks, or come back later.
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 accurate for you. You may have a formal diagnosis, be waiting for an assessment, or identify with neurodivergent traits.
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 exact location or 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 are warmly invited to take part in an optional one-to-one interview. These are informal, judgement-free conversations with a neurodivergent member of our team, where you can share your experiences in your own way and at your own pace. Both male and female interviewers are available.
There is no pressure to prepare anything in advance. You can choose a time that suits you, and we can meet in whatever way feels most comfortable, whether that is by phone, online, or in person.
If you are interested, you can leave your name and a phone number or email address below so we can get in touch. Your contact details will be kept private and confidential.
Ownership and use of your story (it looks scary, but it's not)
The intention of this project is that the resulting anonymised lived experience materials remain an open community resource for public benefit, so they can continue to be shared, adapted and used to improve the lives of neurodivergent people regardless of who hosts them or creates new resources from them.
Anonymised quotations and story excerpts from the above may be published under the Creative Commons Attribution–NonCommercial 4.0 International (CC BY-NC 4.0) licence. This means that anyone may copy, share, adapt and reuse them for non-commercial purposes, provided they give appropriate attribution and comply with the terms of that licence.
By taking part in The Neurodivergent Truth, you are not giving SUMMIT ownership of your experiences or an exclusive right to use your words. Your lived experience is your own. SUMMIT does not claim ownership of any quotations or anonymised story excerpts resulting from your participation. These materials are not considered work product belonging exclusively to SUMMIT.
By agreeing to take part, you give a perpetual (does not expire), worldwide, non-exclusive and royalty-free licence for anonymised quotations and story excerpts to be copied, shared, adapted and used to support neurodivergent people. This includes, but is not limited to, education, teaching, training, research, awareness raising, publications, funding and grant applications, service design and improvement, policy development, and the creation of other resources that benefit and inform the neurodivergent community.
Because this licence is non-exclusive, you are not giving these rights only to SUMMIT. SUMMIT does not have the right to control who else may use the published quotations or story excerpts. This licence also does not give SUMMIT any exclusive right to host, manage, approve, publish or control the future use, adaptation or development of those anonymised quotations or story excerpts. Any individual or organisation may host, publish, adapt, reuse or develop resources using them independently of SUMMIT, provided they comply with the terms of this licence.
Once published, anonymised quotations and story excerpts may be hosted, archived, shared, adapted and reused by individuals, charities, community groups, educational establishments, public bodies and other organisations without needing permission from SUMMIT, provided the use benefits the neurodivergent community or improves public understanding of neurodivergence, the material is not sold or licensed as a commercial product or service, its primary purpose is not private commercial profit, and appropriate attribution is given to The Neurodivergent Truth project.
No individual or organisation, including SUMMIT, may claim an exclusive right to use the published anonymised quotations, story excerpts or materials created from them.
Please be aware that once anonymised quotations or story excerpts have been published under this licence, they may be copied and shared by others. This means it may not be possible to remove every copy if you later decide to withdraw your consent.
When you are ready, please select the Submit button to send your responses.
