By Emy Nimbley, second year Clinical Psychology PhD student at the University of Edinburgh
Over the past decade or so, it has been increasingly observed that there seems to be an overlap between autism, and anorexia nervosa (AN). At face value these two conditions appear to be very different. Anorexia is a severe eating disorder characterised by an intense fear of gaining weight, persistent attempts to restrict energy intake and disturbances in the experience of one’s body or shape, that typically emerges during adolescence in females, while autism is a neurodevelopmental condition, characterised by differences in social interaction and communication, as well as differences in rigid and sensory behaviours, that typically is diagnosed in childhood in males. However, clinical observation and increasing research attention suggests that autism is over-represented in anorexia, ranging from estimates of between 20% to 30%.1
Attempts to understanding the impact of this overlap, or comorbidity, are just beginning. It has been suggested that the presence of autism in anorexia may be detrimental to treatment outcomes, leading to longer inpatient stays and challenging the success of traditional treatment approaches. However, it is important to note that this does not mean that these individuals are “failing” to recover or are “resisting” treatment; it merely means that they may have unique thoughts, feelings and behaviours that need to be heard, respected and incorporated into their treatment plans.
Indeed, several recent research studies that have explored the lived experiences of autistic individuals with anorexia have found they report that current treatments fail to meet their unique set of needs, calling for more accessibility and engagement by eating disorder services that are frequently found to misunderstand autism.2, 3 Frustration is also felt by parents of autistic individuals with anorexia, who perceive that current services fail to adapt to their child’s needs and, in some cases, even fail to accept autism as part of their eating disorder diagnosis.4 Watching someone you love struggle with an eating disorder can be an incredibly distressing experience; add the (often undetected) presence of autism and healthcare professionals that report a lack of knowledge and confidence in treating autism with an eating disorder framework,5 and this distress and frustration will reach overwhelming levels.
But you are not alone.
Researchers and clinicians are starting to translate lived experiences into treatments and interventions that will help work towards improving the lives of autistic individuals with anorexia. While increasing awareness of the overlap between autism and anorexia is a starting point, it is by no means the final destination.
A possible route towards achieving a more comprehensive understanding of how to treat these co-existing conditions are studies that seek to identify possible thoughts, feeling, behaviours and processes that may be unique to this population. A recent paper developed a model of autism-specific mechanisms in restrictive eating disorders that were reported by autistic women, parents of autistic women and healthcare professionals working in the field, citing a broad range of behaviours and processes including sensory processing, social interaction and relationships, self and identity, difficulties with emotion, rigid, intense or literal thinking styles, and a need for control and predictability.6 While these behaviours were frequently reported to play an important role in the development and maintenance of restrictive eating, it should be noted that such attempts do not try to create definitive categories or criteria. Studies that are routed in these lived experiences bear witness to differences between individuals, even within individuals, as certain behaviours may also fluctuate in “importance” across the development of, maintenance of and recovery from anorexia.
Identifying possible factors and behaviours should be a first step in increasing awareness of autism in eating disorder services; the second step should be informed, person-centred care. This will involve applying such research findings to real-life clinical pathways and services. Historically, much has been lost in translation between the seemingly distinct pathways, with a lack of awareness of and training regarding autism and neurodiversity frameworks in eating disorder services, and a similar lack of knowledge or training in eating disorders observed in neuro-developmental pathways. Communication between multidisciplinary professionals and the development of person-centred, or autism-focused, interventions are vital in supporting the treatment and recovery of autistic individuals with anorexia. A recent clinical pathway that has sought to do just that has been implemented in England, known as the PEACE (Pathway for Eating disorder and Autism developed from Clinical Experience), and it is hoped that a similar clinical approach will be adopted soon in other UK countries. Further information regarding the PEACE pathway can be found at their website (https://www.peacepathway.org/).
Navigating and supporting a loved one through anorexia when they are also autistic presents many challenges. The start of your journey is to inform; yourself, your loved ones and your services. This knowledge and awareness will help you forward on your journey, and hopefully get your child and your family the suitable and autism-specific support that you need.
DISCLAIMER: While the current post discusses the overlap between autism and anorexia, this does not mean to say that similar relationships do not exist between autism and other eating disorders. In fact, recent evidence suggests that a similar relationship exists beyond anorexia to other restrictive eating disorders, such as Avoidant and Restrictive Feeding Intake Disorder (ARFID), as well as between bulimia nervosa (BN) and binge eating disorder (BED).7, 8 Further information regarding autism and these eating disorders is out with the scope of my expertise, and more detailed knowledge or advice can be found elsewhere.
1 Westwood, H., Mandy, W. & Tchanturia, K. (2017). Clinical evaluation of autistic symptoms in women with anorexia nervosa. Molecular Autism, 8(12). https://doi.org/10.1186/s13229-017-0128-x
2 Kinnaird, E., Norton, C., Stewart, C., & Tchanturia, K. (2019). Same behaviours, different reasons: what do patients with co-occuring anorexia and autism want from treatment? International Review of Psychiatry, 31(4), 308-317.
3 Babb, C., Brede, J., Jones, C, R, G., Elliot, M., Zanker, C., Tchanturia, K., Serpell, L., Mandy, W., & Fox, J, R. (2021). ‘It’s not that they don’t want to access the support…it’s the impact of autism’: The experience of eating disorder services from the perspective of autistic women, parents and healthcare professional. Autism, doi: 10.1177/1362361321991256
4 Adamson, J., Kinnaird, E., Glennon, D., Oakley, M., & Tchanturia, K. (2020). Carers’ views of autism and eating disordered comorbidity: qualitative study. BJPsych Open, 6(3), doi: 10.1192/bjo.2020.36
5 Kinnaird, E., Norton, C., & Tchanturia, K. (2017). Clinicians’ views on working with anorexia nervosa and autism spectrum disorder comorbidity: a qualitative study. BMC Psychiatry, 292.
6 Brede, J., Babb, C., Jones, C., Elliott, M., Zanker, C., Tchanturia, K., … & Mandy, W. (2020). ‘For me, the anorexia is just a symptom, and the cause is the autism’: Investigating restrictive eating disorders in autistic women. Journal of Autism and Developmental Disorders, 50, 4280-4296
7 Koomar, T., Thomas, T, R., Pottschmidt, N, R., Lutter, M., & Michaelson, J, J. (2021). Estimating the prevalence and genetic risk mechansism of ARFID in a large autism cohort. Frontiers in Psychiatry, 12, 668297.
8 Gesi, C., Carmassi, C., Luciano, M., Bossini, L., Ricca, V., Fagiolini, A., Maj, M., & Dell’Osso, L. (2021). Autistic traits in patients with anorexia nervosa, bulimia nervosa or binge eating disorder: a pilot study. European Psychiatry, 41(S1), S100-S100, doi:10.1016/j.eurpsy.2017.01.310