“No one was coming to save us”: an interpretative phenomenological analysis exploring the experience of parents supporting their autistic daughter through anorexia nervosa

TL;DR

This study explores the challenges parents face when supporting their autistic daughter with anorexia nervosa, highlighting the need for better services and support.

Contribution

The study provides new insights into the unique experiences of parents of autistic daughters with anorexia nervosa.

Findings

Eating disorder services were perceived as unprepared to support dual diagnosis cases.

Parents often had to modify or abandon treatments due to their child's autism.

Parenting roles changed significantly, with impacts on family wellbeing.

Abstract

Caring for someone with anorexia nervosa is associated with high levels of carer burden and burnout, however, there is a lack of research into caring for individuals who have anorexia nervosa and are also autistic, despite high levels of co-occurrence. This study aimed to offer an in-depth exploration of experiences for this group of caregivers.

Semi-structured interviews were conducted with six parents with an autistic daughter who had experienced anorexia nervosa. Data was analysed using Interpretative Phenomenological Analysis which enabled in-depth exploration of carers’ lived experience.

Three themes and seven sub-themes were identified. These explored the experience of eating disorders services as largely unprepared to work with dual diagnosis; the impact of their daughter being autistic on carers’ experience of anorexia nervosa treatment and recovery, with variation depending on several factors; the journey of parenting through anorexia nervosa, and changes to parenting as a result.

This adds to our understanding of the lived experience of this group of carers, highlighting a need for early detection of autism spectrum conditions, enhanced staff understanding of autism spectrum conditions, tailored treatment, and specific carer support for this group.

Parents of a young person who is autistic and also has anorexia nervosa face unique challenges because of the needs that come with both conditions. The study looked at the experience of parents supporting their autistic child through Anorexia Nervosa. Parents told us that eating disorders services did not feel prepared to meet their child’s needs. In response to this, many felt that they had to change or even stop treatments because they didn’t work well for their child. Parents also spoke about the impact this had on their own wellbeing and their family. They described how they often had to step into unexpected roles, such as advocating for their child with professionals. The findings suggest that treatment for anorexia nervosa may be more helpful if it included adaptations for autistic people, and that providing support for carers could make a big difference for both parents and their children.