What we heard: neurodivergent lived experience in Gloucestershire

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Why we asked

We invited neurodivergent adults, children and young people (and some parents responding on behalf of their children) to share their lived experience. We did this because words like neurodiversity and neurodivergence are often used interchangeably, and we want to make sure local planning uses language that reflects real life.

You did not need a diagnosis to take part.

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Your privacy

This questionnaire was anonymous. We did not collect names, email addresses, phone numbers, or any contact details. We are sharing themes only, so nobody can be identified. 

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Who responded

We heard from people across the lifespan, including:

• Children (under 12)

• Young people (12–17)

• Adults (18+)

• Older adults

People of different genders responded, including women, men, non-binary people, and people using other gender identities. 

 

The main themes

1) Neurodivergence is about difference in how people experience the world

Many people described neurodivergence as a difference in how they:

• Communicate

• Process information and learn

• Experience sensory environments (noise, light, crowds)

• Manage emotional wellbeing

• Use strengths, interests, and ways of thinking

A key message was that these differences are not automatically “problems”, they become harder when environments and expectations don’t flex.

2) Systems and environments can create barriers

Across ages, people described difficulties in schools, healthcare, workplaces, and public spaces when systems are:

• Rigid or “one size fits all”

• Not sensory-friendly

• Heavy on phone calls or unclear communication

• Built around assumptions of “neurotypical” behaviour and communication

3) “Listen to me” came through again and again

The clearest repeated message was the need to be heard, believed, and understood.

Many people, especially children and young people, said they felt dismissed, misunderstood, or treated as though they were doing something wrong when they were distressed or overwhelmed. 

4) Neurodivergence is lifelong

We heard from people at different life stages, including older adults who felt they had gone unrecognised for decades and were still looking for understanding and support. 

5) Diagnosis isn’t the only way people understand neurodivergence

Some respondents said diagnosis helped them understand themselves, but that it didn’t always change the support available. Others highlighted that support should not depend on having a diagnosis. 

 

A few voices (shared anonymously)

These quotes are included to reflect common themes. They are anonymous and cannot be linked to individuals. 

• “Being listened to.”

• “Clear communication and flexibility.”

• “No phone calls… written communication.”

• “Stop punishing me… be kind.”

• “I slipped through the net.”

 

What this means for Gloucestershire

Based on what people told us, support works best when services and systems:

• Listen and believe neurodivergent people

• Communicate clearly (including written options)

• Offer reasonable adjustments proactively

• Reduce sensory barriers where possible

• Value strengths as well as challenges

• Design support with neurodivergent people, not just for them

 

What happens next

We will use these findings to:

• Support a lived-experience-informed understanding of neurodivergence

• Inform local planning and improvement work (including the Gloucestershire One Plan)

• Share a summary with partners to encourage more inclusive, accessible services

Limits of what this can tell us

This was a voluntary questionnaire and not everyone will have seen or completed it. It shows strong themes from the people who responded, but it is not a full picture of every neurodivergent person’s experience in Gloucestershire.

 

Support

Some responses described distress, especially in relation to school and being misunderstood. If reading this brings anything up for you, please consider reaching out to someone you trust, or contact local support services in your area.