Personal stories
Josh's research participation story
Josh shares his experiences of his first time getting involved in a research study.
Josh recently took part in some research he learned about through the Autistica Network. He visited researchers at the University of Birmingham to offer feedback on their project, which is trialling a new method to use brain scans to diagnose autism.
I recently had the opportunity to take part in an exciting research project. It concerned "exploring diagnostic methods in autism," run by researchers at the University of Birmingham, who were exploring a different method for brain scans as a diagnostic tool for autism in young people. I first heard about this study as I’m part of the Autistica Network, and receive emails about research opportunities.
Emily, a research assistant on the project, has kindly provided a summary of the study, which you can read below.
About the research
About the project
Our project ‘Developing Early Diagnostic Methods for Autism using MEG and Novel Graph Neural Network’ aims to explore potential autism diagnosis methods using a more child-friendly brain imaging technique. Dr. Kyungmin An leads the project at the University of Birmingham.
Why it matters
Autistic people experience the world differently from early age, and brain imaging techniques can capture these differences. Currently, autism diagnosis has been mainly based on behavioural information, which leaves more room for error, such as bias from a practitioner.While plenty of studies have used brain imaging for autism diagnoses, these methods are not suitable for young children. Most existing techniques require people to stay in a narrow and noisy space or to attach sensors, which can be challenging for young children.
Magnetoencephalography (MEG)
Our team have been using a brain imaging technique called magnetoencephalography (MEG), which is more suitable for children. With MEG, we can create a more comfortable recording environment and capture fast-changing brain activity in children. We use mathematics and deep learning methods to help us see patterns and trends in complex information. We use this technique to see how MEG data matches up with information about a child’s behaviour.
At the moment, there isn’t much research exploring MEG as a diagnosis for autism, but we think this has lots of potential as a new way to diagnose young autistic children.
Working together across disciplines
Multiple people from different disciplines have collaborated on this project at the University of Birmingham, including neuroscientists (Dr KyungMin An and Emily Wilson), computer scientists (Dr Hyung Jin Chang and Tze Ho Elden Tse) a mathematician (Dr Leandro Junges) and an artist (Emily Scarrott). By working together and pooling our expertise, we can learn more about brain activity in autistic children and explore a child-friendly brain imaging technique to support autism diagnosis.
We are delighted that Josh enjoyed participating in our project's public engagement event. Josh and other participants provided valuable feedback that is vital to supporting the project moving forward. We are excited to publish our findings in the coming months.
We would also like to thank Autistica and the Autistica Network for supporting participant recruitment and enabling crucial autism-affirming research.
To find out more about the project visit Dr KyungMin An’s Lab or the project information page.
Why I got involved
I was interested in getting involved as I want to help autistic people get diagnosed sooner. I found out I was autistic in my 20's. Before knowing I was autistic, life was incredibly confusing and overwhelming for me and led to significant challenges. I am passionate about enabling others to receive their diagnosis earlier, so they can access the self-understanding and support they deserve sooner.
Also, when advertising the opportunity, it mentioned brain activity as a possible diagnostic tool. I am fascinated by the human body and brain, so I wanted to learn more.
Before knowing I was autistic, life was incredibly confusing and overwhelming for me and led to significant challenges. I am passionate about enabling others to receive their diagnosis earlier, so they can access the self-understanding and support they deserve sooner."
What happened on the day
After we arrived, we introduced ourselves and told the group what our personal connections to autism were. The researchers then presented their current findings. They wanted to know whether we believed this is worth continuing to explore and eventually use as a diagnostic tool for adults. This led to some brilliant group discussions.
Many participants shared their personal stories of delayed diagnosis and the turmoil and distress that this caused to them and their families. So many of us had similar experiences. It felt validating to know I wasn't alone in this.
After the discussion, we had lunch. I was nervous about this part, as it was likely to be less structured, which I can find challenging. But it turned out to be fantastic! I got to meet other like-minded people, both the participants and the researchers. It was totally inspiring! Together, we shared our experiences, ideas, and coping strategies that help us as autistic people in a neurotypical world.
In the afternoon, Emily Scarrot artist in residence for the project gave a short presentation. She had been translating the research method and findings into an art project, and shared her progress with us. I love art, so this was my favourite part of the day. I especially enjoyed seeing the research presented in an alternative format. I am excited to return to Birmingham in future to catch her work from this project in an upcoming exhibition.
We finished the day with an interactive feedback session. We answered the researchers’ questions on post-it notes and shared our thoughts with the group.
What I learned from taking part
I came away feeling significantly less isolated and alone, knowing that there were others who understood the long, hard journey I had been on."
I learnt a huge amount from participating in this study. I found out that, unfortunately, timely diagnosis is a problem for many autistic people. Although I was saddened by this, I came away feeling significantly less isolated and alone, knowing that there were others who understood the long, hard journey I had been on.
I was extremely encouraged to discover that in the future, there could be scope for brain activity to be used as part of the diagnostic process. Although there is still a long way to go, I feel like this could be an absolute game-changer.
When I received my diagnosis, I finally felt like I was able to accept my differences as a part of who I am. In the past, I used to punish myself for my behaviours and emotions, because I couldn't understand why they were happening. I would get incredibly frustrated and disappointed with myself. Now, I am learning that being neurodivergent isn't a bad thing - I am finally giving myself the space to be 'me', without feeling the need to mask my differences. This is the freedom and liberation that having an autism diagnosis can bring to people. And this is why I came away from the research project feeling so uplifted.
Throughout the day, many of us spoke passionately about the quality of life of a neurodivergent person. We agreed that life shouldn't be just about survival, but so much more than that! It should be about thriving in the same way that everyone has the right to do. We didn't want the world to consider autism as a 'problem' which needs to be overcome, but as a part of who we are - something to be embraced. Given the right understanding and environment, autism can be a superpower.
Participating in this study made me feel like my story, my past and the challenges I’ve faced could all be used for change, and to help others and drive positive change in the future. I felt like a valuable, useful member of society for the first time in years. Being involved in research has had a significantly positive impact on my mental health and my self-worth. It is so empowering, and I would recommend it to anybody!