We know that more than 1 in 5 women who have anorexia are autistic, but we still know very little about how many autistic people are living with other types of avoidant or restrictive eating. This new partnership will help us to understand more about the experiences of children and young people living with these types of disordered eating.

What is the project about?

The project will aim to better understand specific types of disordered eating in children and young people. It will focus on children and adolescents who avoid food or restrict the sort of foods that they eat. This is known as Avoidant/Restrictive Food Intake Disorder (ARFID) and it can lead to weight loss, poor growth, nutritional deficits or poor emotional wellbeing. Because the disorder can present in different ways, there has been very little research or guidance. This can impact referrals and services that are available.

What did researchers do?

The project aims to establish the number of new cases of ARFID presented to secondary health care services. They will look at how each person was referred and how they presented, for example, their eating behaviours, medical complications and co-occurring conditions.

How will the project help?

This will help us to understand ARFID rates, presentation and management in the UK and Ireland as compared to other countries. It will help in the development of more appropriate resourcing and lay the foundation for further research looking at diagnosis, management, co-occurring conditions and outcomes.

How have Autistica supported the project?

To ensure that the project reflects the perspectives of autistic people who have experience of ARFID and their families, the team approached us to support them in gathering information and designing the study documentation. By sharing information about the project with the Autistica Network, the team will share their progress on the development of the project and will be able to circulate their results. This allows both community members and clinicians to feedback on the project.