How Can Young People with ADHD and Autism Actively Participate in Research About Their Conditions?

What you need to know

• A new research model integrates young people with ADHD and autism into the core research team, allowing them to actively shape and conduct studies about their conditions.
• This approach, called participatory translational science, aims to improve research by incorporating the unique insights and perspectives of neurodivergent individuals.
• The model has shown early success in enriching research methods, data interpretation, and knowledge dissemination in ways that could lead to more effective interventions for ADHD and autism.

A New Approach to ADHD and Autism Research

For many years, research into neurodevelopmental conditions like attention-deficit/hyperactivity disorder (ADHD) and autism has primarily been conducted by scientists and clinicians without the direct involvement of individuals who have these conditions. While there have been efforts to include patient perspectives through advisory panels, these have often been limited in scope and influence.

Now, a groundbreaking research program called RE-STAR (Regulating Emotions – Strengthening Adolescent Resilience) is pioneering a new approach that places young people with ADHD and autism at the heart of the research process. This model, known as participatory translational science, aims to harness the unique insights of neurodivergent individuals to improve our understanding of these conditions and develop more effective interventions.

The Youth Researcher Panel: From Advisors to Co-Researchers

A key component of the RE-STAR program is the Youth Researcher Panel (Y-RP), consisting of ten young people aged 18-25 who have diagnoses of ADHD and/or autism. Over a 24-month period, these individuals transitioned from serving in an advisory capacity to becoming integrated co-researchers within the core RE-STAR team.

This process involved several key steps:

1. Assembling a diverse team of young people interested in contributing to the research.
2. Establishing ground rules, building trust, and developing a shared vision for the project.
3. Increasing the confidence of Y-RP members to co-create research materials and methods.
4. Developing the skills needed for Y-RP members to actively participate in conducting research.

Throughout this journey, Y-RP members received training in research methods and were given opportunities to contribute to various aspects of the study, from designing interview questions to analyzing data and presenting findings at scientific conferences.

Principles of Effective Participation

The RE-STAR team identified several key principles that were essential for successfully integrating young neurodivergent individuals into the research process:

1. Shared passion for improving the lives of young people affected by ADHD and autism.
2. Development of trust and open communication among all team members.
3. Recognition that diverse perspectives can bring new insights to research questions.
4. Willingness to embrace uncertainty and take risks in developing new approaches.
5. Respect for different forms of expertise, whether gained through personal experience or formal training.
6. Understanding the value of different types of evidence, including creative and non-verbal forms of expression.
7. Sensitivity to the diverse needs of all team members and provision of appropriate support.
8. Recognition and reward for the contributions of Y-RP members, both academically and financially.
9. A flexible leadership style that allows for exploration of ideas while maintaining focus on research goals.

Challenges and Solutions

Implementing this new participatory model wasn’t without its challenges. Some of the key issues faced by the RE-STAR team included:

1. Calibrating the level of support and responsibility given to each Y-RP member based on their individual needs and circumstances.
2. Communicating complex scientific concepts in an accessible way.
3. Accommodating the varying schedules and availability of Y-RP members.
4. Ensuring diversity within the Y-RP, particularly in terms of ethnic representation.

To address these challenges, the team invested significant time in understanding each Y-RP member’s situation and tailoring the process to their needs. They also worked on improving communication of scientific ideas and remained flexible in scheduling to accommodate Y-RP members’ other commitments.

Contributions and Benefits of Y-RP Involvement

The integration of Y-RP members into the research team has already yielded significant benefits for the RE-STAR program:

1. Influencing theoretical ideas about the link between neurodivergence and mental health, particularly highlighting the importance of context in shaping emotional experiences.
2. Enhancing research methods by co-designing creative ways to gather information, such as using art, poetry, and prose to capture experiences that may be difficult to express verbally.
3. Changing the dynamic of data collection by having Y-RP members co-conduct interviews alongside academic researchers.
4. Providing unique perspectives in data analysis, helping to identify themes that might be overlooked by traditional researchers.
5. Driving creative knowledge exchange through multimedia public engagement events and conference presentations that combine scientific insights with personal experiences.

Expanding the Model

As the RE-STAR program progresses, the team is working to expand the participatory model by including younger individuals (ages 11-16) who will be mentored by the original Y-RP members. This expansion aims to further enrich the research process by incorporating perspectives from across the age spectrum of those affected by ADHD and autism.

Conclusions

• The RE-STAR participatory translational science model demonstrates that it is possible and beneficial to actively involve young people with ADHD and autism in all aspects of research about their conditions.
• This approach has the potential to lead to fundamental changes in our understanding of neurodivergence and mental health, potentially resulting in more effective interventions.
• While developed for ADHD and autism research, the principles of this model could be adapted for studies involving other forms of neurodivergence or mental health conditions.

By embracing the perspectives and talents of neurodivergent individuals, the RE-STAR program is not only advancing scientific understanding but also empowering young people to play an active role in shaping research that directly affects their lives. This innovative approach represents a significant step forward in making neurodevelopmental research more inclusive, relevant, and impactful.