The importance of co-production in neurodiverse communities

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Hi, I’m Prisca Biaye, a mental health advocate and writer passionate about promoting inclusion, mental health, and neurodiversity in collaborative spaces. In this blog, I’ll share my personal experiences and those of others to highlight the challenges of co-production in neurodiverse communities along with practical ways to make these spaces more inclusive.

The Importance of Co-production in Neurodiverse Communities

According to the University of Edinburgh, neurodiversity is the fact that all our brains process information in different ways. There is a difference in how we take information from the world around us and in how we put that information together in our brains. These “information processing” differences lead to differences in how we act, and how we are. Neurodivergent individuals are people whose brains process information in a way that differs from what is considered typical. These includes people with: autism, ADHD, dyslexia, dyspraxia, etc.

Co-production is an incredible approach to creating lasting and meaningful change. By including neurodivergent individuals in the creation of systems, services or policies, we ensure that these initiatives are more inclusive and accessible and that they reflect the diverse needs of the people they are meant to serve. Co-production done right leads to better solutions and outcomes for everyone involved.

As much as co-production offers tremendous potential, it also comes with challenges. Collaborative efforts involve people with different needs, perspectives, and ways of communication. These differences, if not properly addressed and understood, can lead to friction. This makes it harder for everyone involved to engage fully and meaningfully in the process.

These challenges are significant but not impossible to overcome. In this blog, I will explore what they are and how they can be addressed. However, before I go into specifics, it is important to recognise that neurodiversity is broad and that my experience may not reflect those of every neurodivergent individual.

The Key Challenges

Communication Barriers

For collaboration to be effective, clear communication is essential. However, not everyone communicates the same way. Some people process information best through verbal discussions, while others rely on written texts, visuals, or structured outlines. When these styles clash, especially in a fast-paced environment where information is not provided in multiple formats, participation becomes difficult.

I struggle in spaces where verbal exchange is the primary form of communication because I process information better when I can read or visualise it. In contrast, others might prefer verbal discussions and find written communication overwhelming. If these differences are not addressed, neurodivergent individuals can unintentionally end up feeling left out.

While writing this article, I asked another neurodivergent person about the challenges they also face. They shared that even in professional and social spaces where their input was actively sought, they still experienced anxiety and the fear of being too impulsive. This highlights that even in spaces designed to be inclusive, poor communication can still create barriers to participation.

Accessibility Gaps

Many collaborative spaces are not designed with neurodivergent individuals in mind, making participation difficult. Common barriers include

• Sensory overload, bright lights, loud environments, or crowded spaces, which can be overwhelming.
• Rigid schedules and deadlines: Some neurodivergent individuals need extra processing time and work best when they can engage at their own pace.
• Real-time participation expectations and speaking on the spot can be difficult. Some prefer to provide written summaries or feedback later.

For example, in loud, bright, or crowded settings, I get easily distracted and overwhelmed. When too many people are talking at once or when the environment is overstimulating, I struggle to focus. This often leads to zoning out, making it difficult to fully engage.

Lack of Clarity and Structure

This challenge is deeply personal to me. For me to function well, I need a clear structure of what is required of me. When tasks are ambiguous or not broken down into manageable steps, I get overwhelmed and struggle with feelings of being slow or behind. This also makes it difficult to ask questions, especially in a fast-paced environment where everyone seems to understand what to do. At that point, I feel like I am experiencing an information overload. Processing everything happening around me becomes exhausting, making it difficult to contribute effectively. When this happens, I tend to dissociate, meaning I mentally disconnect from the situation, making it difficult for me be present and participate.

Lack of Psychological Safety

Many neurodivergent individuals mask their true selves in professional or social settings out of fear of judgment. When I feel like I can ask questions, take my time with tasks, and process information without being seen as slow or behind, participation becomes easier. Feeling like the odd one out can be exhausting and discouraging, making it harder to fully engage.

The neurodivergent individual I spoke with mentioned that they prioritise being in spaces where they do not feel judged. They specifically look for groups with other neurodivergent individuals or people who are understanding of neurodivergent experiences. Feeling comfortable enough to unmask and express oneself without fear of criticism is essential for meaningful participation.

Overcoming These Challenges

Encourage Inclusive Communication

To make group collaborations more accessible, we need to embrace multiple modes of communication. Verbal exchanges are not the only form of communication. Other methods such as written materials, meeting agendas, summaries, and visual aids like mind maps or bullet points can help clarify key points.

Participants should be allowed to communicate in the way that suits them best. Avoid putting people on the spot. Those who require extra time to process and respond should be given the flexibility to do so.

Prioritise Accessibility Gaps

Accessibility should never be an afterthought. It should be built into the foundation of any group or project. It can be exhausting when accommodations are made only when they are specifically requested.

• Sensory-friendly spaces should be designed with considerations for sounds and lighting. This can include using soft lighting, minimizing background noises in physical spaces. For online meetings, avoid flashing graphics and loud sounds. Captions can be provided for accessibility.
• Flexible pacing and breaks should be encouraged so people can engage without feeling overwhelmed. They should be able to engage at a pace that works for them.
• Participants should be regularly asked what they need instead of waiting for them to request accommodations.

Implement Clear Structure

Providing clear instructions helps participants feel more comfortable and capable in a collaborative environment.

• Breaking down large tasks into smaller, manageable steps makes participation easier.
• Outlining roles and responsibilities ensures that every participant knows what is expected of them.
• Structure does not mean rigidity. It means allowing participants to engage in ways that feel comfortable for them.
• Providing an agenda or session outline in advance helps to reduce anxiety and allows participants to prepare, making it easier for them to engage fully.

Listen to Neurodivergent People First

The most important step in making co-production more inclusive is simply listening to neurodivergent people. Too often, solutions are imposed on neurodivergent individuals without their input, leading to systems that do not meet their actual needs. Instead of making assumptions, neurodivergent individuals should be engaged as equal partners in decision-making.

Just as the neurodivergent individual I spoke with put it:

“We are not a monolith. Do not assume we are. Listen to us before assuming what support we need. Allow us to take breaks, work at our own pace, and participate without guilt.”

Co-production has the potential to drive real and meaningful change in neurodivergent spaces, but this will only be possible if neurodivergent individuals are given the right tools and support to participate fully. True inclusion is not about fitting neurodivergent people into existing structures and expecting them to conform. It is about rethinking these systems so they work for everyone.

By encouraging accessible communication, addressing accessibility gaps, prioritising structure and clarity, and actively listening to neurodivergent people, we can create a space where their voices are not just heard but truly valued.

Photo credit: Canva

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