Shaping autism and ADHD support with families at the heart

We helped Assembly make sure parents and carers shaped the development of their AI chatbot and screening tool, which supports children waiting for an autism or ADHD assessment. 

The challenge  

Families across the UK can wait more than three years for an autism or ADHD assessment, often navigating complex systems while trying to understand and respond to their child’s needs with little support.  

What we did  

Assembly’s co-founders, a parent and a clinical psychologist, developed an AI-powered chatbot and screening tool designed to provide tailored information, support and signposting for families awaiting neurodevelopmental assessment. Development was funded by the NIHR and Assembly worked with researchers to shape and test the tool.  

We were commissioned to lead the patient and public involvement and engagement programme for the project, ensuring that families’ experiences directly informed the design and development of the chatbot and screening tool. We recruited a diverse lived experience group of 11 parents and carers from across England and facilitated collaborative workshops to understand their challenges, priorities and expectations for digital support. 

Impact 

Insights from the workshops helped shape the tool’s functionality, language and user experience. Families provided feedback on everything from the information presented to how sensitive topics should be discussed, helping ensure the tool was accessible, relevant and responsive to the needs of people navigating lengthy assessment pathways. 

The project has now progressed to wider user testing, with more than 50 parents and carers providing feedback on the latest version. Early findings suggest users find it supportive and easy to use, with many reporting that it helped them better understand their child’s needs. By placing lived experience at the centre of development, we have helped create a stronger foundation for future NHS testing and adoption. 

“UCLPartners has helped us refine our objectives and improve the process so that it fully involved parents of neurodiverse children in shaping our product.”   

Dr Frank Burbach, Assembly Co-founder & Chief Clinical Officer

“Our role was to make sure this tool was not only clinically robust but also genuinely useful and acceptable to families. By embedding PPIE throughout the project, we’re building something with, not just for, the people it will support.”  

Dr Natt Day, Head of PPIE, UCLPartners