This case study reports on a pilot study undertaken by the authors as part of their on-going interest in, and long-term research project relating to, people at the margins of society. This pilot study investigated the level of undiagnosed and misdiagnosed neurodiverse conditions and related adversities in children who have been excluded from school. The study was conducted in pupil referral units. These are specialist units for children who typically have been repeatedly and/or permanently excluded and may be referred to them for a variety of reasons, often relating to their behavior.
Working with this population raised many ethical and practical considerations. It was particularly important that the study was as accessible as possible, to enable equitable and representative participation, that participants were protected during the study and that they were personally benefited by the study in a meaningful way. We discuss the measures we took during planning and data collection that ensured these aims were met. We also discuss several unexpected issues that occurred during the pilot study, which resulted in modifications to our study method prior to carrying out the subsequent, main study.
Working with hard-to-access populations is challenging. However, it has potential to enrich both scientific knowledge and the lives of people in these populations. We encourage students considering working with such populations to take up the challenge while taking into consideration how best to enable participation and ensure participant protection.