Carers of people with co-occurring autism spectrum condition (ASC) and eating disorders experience additional needs and difficulties compared to those caring for people with eating disorders only, new research shows.

The study published in Journal of Eating Disorders found that carers of loved ones with both ASC and eating disorders experienced a lack of support from healthcare services and described the experience as having a significant personal impact on their lives.

It concluded that this population therefore required specialised support such as peer-based support for carers and longer-term approaches as people with ASC may have lifelong support needs and so remain dependent on their families for longer periods.

Eating disorders are characterised by disturbed eating, food consumption, and related behaviour that significantly impacts physical and psychosocial health. Typical eating disorder onset is in adolescence/ early adulthood, at a time when people with eating disorders may still be living at home and reliant on family support.

Personal impact of caring for someone with autism and an eating disorder

This study used a qualitative interview design, utilising peer interviews. Eleven carers participated in interviews about their experiences as a carer, and their views on existing support systems and potential improvements. As the study took place during the initial UK coronavirus lockdown, the impact of the lockdown also emerged as a topic during the interviews. Interviews were transcribed and analysed using thematic analysis.

Five themes were identified: challenges associated with co-occurring autism and eating disorders, a lack of existing support for carers from healthcare services, the personal impact of caring for someone with both ASC and eating disorders, ideas for how carers can be best supported, and the impact of the coronavirus pandemic on carers.

The study found that the perceived lack of appropriate support by services for their children resulted in participants in this study making significant personal sacrifices in order to provide their loved ones with necessary care. This included carers giving up their careers and continuing to look after their offspring into middle age and later years.

Therefore, it is possible that carers of people with ASC and eating disorders may have longer term support needs compared to carers of people with eating disorders only. Existing interventions for carers of people with eating disorders tend to be focused and time-limited, such as psychoeducational or skills-based workshops, and their benefits may diminish over time.

The study concluded that further research should consider what kind of support options are most appropriate for this population, including rather than focusing on clinical service-provided interventions for carers, whether peer-based support would be particularly beneficial.