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  • Laura Rudderham

Enhancing Autism Genomics Research with Dynamic Public and Patient Involvement

The Family Genomics Research Group is enormously grateful to our autistic volunteers and their families – past, present, and future – for incorporating our research projects into their daily lives.

They not only graciously provide valuable data that contributes to scientific advancement, but also through lived experience they highlight valuable insights that enhances our overall understanding of autism.

To further improve a more collaborative and inclusive approach to research in autism genomics and the genetics of circadian rhythms in families with autism, we have had the pleasure of working with Public and Patient Involvement (PPI) contributor, Claire Hayes since she officially joined the research team in March 2023.

I also joined the research group in March, and in working with the team I have learned a great deal about the research world. Claire and I even attended a PPI Training Day at Maynooth University together, so I wanted to learn more about Claire’s journey in PPI for autism genomics research and emphasise how her experience has impacted the research group.

She joyfully allowed me to pick her brain for what inspires her as a PPI contributor, what she likes about working with the Family Genomics Research Group, what she hopes to accomplish, and where she envisions PPI work will be in the future.

When I asked about Claire’s decision to join the Family Genomics Research Group, I was inspired by her serendipitous progression from research participant to PPI contributor.

Why did you join the research group, and what motivates you to do PPI work?

I was involved in a previous research study as a participant and the research assistant made me aware that the Family Genomics Team at Maynooth were looking for a PPI contributor with good communication skills and lived experience of autism. I wasn't looking for a job at the time, but the role seemed so peculiarly well suited to me that I felt I really had to apply! Autism has been part of my life for 16 years and the more I learned about Public and Patient Involvement, the more I felt it was something I really wanted to contribute to.

Claire’s favourite part about working with the group is not only a lovely sentiment to hear as her colleague, but also a meaningful example for how every moment is a learning opportunity and why we should all learn from one another’s lived experiences.

What is your favourite part about your PPI role with the research group?

As a parent in a neurodivergent family, over time you learn a lot from your children. You also do a lot of research, and, in that research, there are a lot of false starts and dead ends! You learn about interventions and approaches that are subsequently discredited, or just fall out of fashion, or don't work for your family. It can be disheartening. It's really nice to know that the knowledge and perspective that you've distilled over a decade or more of thinking and learning can become useful to other people! I think that's the really great thing about PPI. Also, there is a warm and supportive environment in the Family Genomics Team that is really lovely. I felt so welcome from my very first day. That attitude and flexibility is a huge plus for me. 

Unfazed by my tough question, Claire’s answer exemplifies how scientists and research volunteers share a common goal for impactful science that drives collective efforts in research areas.

What do you hope to accomplish as a PPI contributor?

That's a tough one! I hope to bring to an academic environment the perspective of normal life in a neurodivergent family; what is likely to be possible for autistic participants in a research study and what might be really challenging for them. That may be hugely different to what's possible in a typical family and it's a perspective that I think is essential to have when doing any academic research about autism. I would also hope to act as a conduit to bring in the perspectives of other neurodiverse families and in particular, the voices and opinions of neurodiverse individuals themselves. 

Claire and I share a vision for the future that includes greater inclusivity in the sciences, and we’re both excited to see the impacts of ongoing PPI contributions in upcoming research projects.

The Family Genomics Research Group is exceptionally grateful to Claire for her longstanding participation in our research and we look forward to continuing our work with her and other PPI contributors in the future.

It is also important to acknowledge that the group’s dedication to PPI is nurtured by our relationship with the PPI Ignite Network. Through this partnership we have gained beneficial guidance, expertise, and a shared set of values that have helped us embed PPI into everything we do.

Together with the invaluable contributions and support from PPI Ignite, research volunteers, and PPI contributors like Claire, we can advance knowledge and impact the lives of autistic individuals and their families for a world that is more accepting of neurodiversity.


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