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.
https://doi.org/10.3389/fpsyt.2021.668297
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
Hi Emy, thanks for researching this subject. My D14 is Autistic and has Anorexia, and we have found her a unique pathway through towards recovery. Aspects of FBT do work (eg. The structure of the meal plans 3×3) however my D14 needed to do all of the food preparation herself for sensory reasons. Happy to discuss further……
I would be interested to discuss this further.
Hi Polly & Rachel, thank you for your comments – I am glad to hear Polly that you and your daughter have found a treatment pathway that works for her. I would love to hear more about this from a research perspective, particularly with regards what behaviours/processes worked for your daughter and what didn’t!
Dear Polly, I would be very keen to communicate and learn from your experience of what worked.
Thank you thank you thank you. My daughter has had a terrible ten years in and out of hospitals, with not one psychiatrist suggesting she should be assessed for autism EVEN WHEN WE REQUESTED. Finally a (private and extremely well informed) specialist therapist made the suggestion, and did an initial screening, and my daughter was formally assessed and diagnosed with autism last year. This has been a turning point. She’s now 26 and trying to re-order her life.
A psychiatrist whom she was under a few years ago met her yesterday to discharge her from the local ED services and said she was very glad to see that my daughter was still alive. That to my mind says it all.
I hope that in the future the connection between autism and anorexia is researched further, that carers are trained fully in this common co-morbidity and noone has to go through what we have been through.
Hi Joanne. Thank you for sharing your experiences, and I similarly hope that all this research will work towards improving the lives and treatment of autistic individuals with anorexia. While a lot of professionals across both services do the best they can, hopefully by providing an evidence-base we can increase awareness of the importance and necessity of tailored treatment and training! I have attached a link to my PhD blog, which contains information about the research I conducting (with one study currently recruiting for autistic individuals and their parents to discuss these things. Thanks for your comment, and wishing you all the best in the future.
https://blogs.ed.ac.uk/autismandanorexia/2022/01/11/exploring-social-and-sensory-differences-in-autism-and-anorexia-a-qualitative-study/
I am living and breathing this topic with our 13D. She presented with many autistic traits in her ED. Now she is almost 8 months weight restored but still struggling with mental health. Socially and emotionally she is not typical and struggles. We tried to get psychoeducational eval through school system, but D was not compliant with testing. She is on a wait list for re-eval at our local academic medical center but the wait will be about a year. Meanwhile our therapist with ED and OCD expertise has been unable to connect to D and senses if ASD present, it is beyond her scope. She has referred us out and we are trying to connect now with a therapist who is experienced in ASD type communication challenges.
Hi Irene. Thank you for sharing your experiences. I hope you and your daughter find the right fit for her support, and find it soon. Please see the blog post for recommended clinical pathways (if they are relevant to you geographically!)
My AN-D is not ASD but shares many of these similar nuances – sensory issues, need for control, rigidity in thinking, attention to numbers and “rules”, etc. within a long-standing pre-existing diagnosis of OCD. This article helped me feel acknowledged indirectly. It’s hard to see you need to chart a unique path for your child when it starts to veers from “best chance” path. It takes courage, provokes all kinds of added anxieties, and can start to feel lonely. Thank you for writing this.
Hi Lisa. Thank you for your comment. Autism, and eating disorders possibly too, are best conceptualised (in my opinion) as spectrums, as well as displaying overlaps with OCD. There is not a one shoe fits all. These similar behaviours can make treatment or recovery more challenging, and you are right in that in takes a lot of courage – you are stronger than you know! I am really glad that certain elements of my post could be related to your experience.
Dear Emy,
Thank you so much for your work and this highly informative article.
With respect, might I suggest an amendment to one of the opening statements – “anorexia is a severe eating disorder characterised by low body weight,” to one which promotes inclusivity to one which recognises presentation at a more typically ‘normal’ body size and weight?
This would be incredibly helpful support as research now identifies that only 6% of those with AN present as being underweight. It is essential that we promote this message to aid both services and carers in early intervention 💜
Hi Sarah – thank you for drawing this to my attention! I will contact administration to make the right amendments.
Thank you Emy for bringing research attention to this topic!
For any parents not familiar with FEAST, it’s worth putting ‘autism’ in this site’s search box. Also, for more experiences, more links, there’s a busy discussion on FEAST’s forum on https://www.feast-ed.org/forum/?p=%2Fpost%2Fautism-help-and-why-parents-who-help-other-parents-must-know-this-stuff-11422773
Thank you for your work Amy. Can I ask where to find the information on what supports did work for some of these women, where traditional methods for managing an ED did not work, or which of your references would be best to follow, to find out this information?
Many thanks
Hi Emy,
It’s a great work Emy, My son is Autistic and suspecting eating disorder by me. He lost more than 30 KG within a year wants to lose weight more and more everyday. The doctors or psychiatrist don’t quite say he is developing ED but they couldn’t say anything else either. I’m struggling with him a lot.
I’m a mental health nursing student and I am planning to do my dissertation on AN and Autism.
It would be helpful if I could get some more information from you.