24 October 2023 – Anorexia nervosa is an eating disorder that is characterised by significantly low body weight, an intense fear of gaining weight, and persistent, restrictive behaviours which are employed to try and control one’s weight or body shape.  

Despite anorexia nervosa being more commonly diagnosed in women and autism being more commonly diagnosed in men, researchers have found a large overlap between anorexia and autism in women. Studies have shown that between 20% to 35% of women with anorexia also meet the criteria for autism or have a high prevalence of autistic traits (Brede et al., 2020). Research interviews on this topic have unveiled two crucial insights that are essential for understanding and managing eating disorders in Autistic women. Firstly, many women view their autism and anorexia as inseparably linked. Secondly, the underlying reasons for their anorexia often differ from that of neurotypical women. 

In interview studies conducted by Kinnaird, Norton, Stewart, & Tchanturia (2019) and Brede et al., (2020), Autistic women talked about the ways in which their autism contributed to their disordered eating, in ways not typically associated with anorexia. The findings of these researchers will be discussed in this article.  

Low self-esteem, body image issues, and a desire to lose weight were not always the main motivating factors for many of the participants, as is usually the case for neurotypical women with anorexia. Instead, they spoke of the need for control, sensory sensitivities, organisational problems around shopping and cooking, rigid thought patterns, and exercise as a way of stimming (Kinnaird et al., 2019; Brede et al., 2020). Many participants also discussed that their need for predictability led to the development of routines and ritualistic behaviours related to food that they found difficult to change once established. 

“I’ve never really had the thoughts of I want to … be really thin or lose weight … like it’s always just kind of happened. And I think it’s not like – it is a bit about body image and everything like that but … It’s more kind of a way of dealing with sensory things like, yeah, it’s a massive thing of not knowing that I had sensory issues and it was a way of coping with those (Kinnaird et al., 2020).”

Sensory sensitivities were one of the most common contributing factors discussed by participants. In their youth, their sensory sensitivities were not well understood by others or were ignored. This made their difficulties with food worse. Both participants and professionals in Brede et al.’s study (2020) drew parallels between their experiences and Avoidant/Restrictive Food Intake Disorder (ARFID). This is a recently introduced eating disorder that is not driven by weight or shape concerns. Some participants even thought that ARFID may be a more appropriate diagnosis for them than anorexia. 

The hypersensitivity to sensory stimuli discussed by participants also applied to internal sensations. Many of the Autistic women in Brede et al.’s study discussed how the internal sensations associated with eating, like the sensations of digesting food, or the physical feeling of being bloated, were extremely distressing and that they had restricted their eating habits to avoid these feelings.  

“That feeling of putting on weight…that’s what kind of sends me back into restricting food, because it’s not about ‘oh god, my stomach looks really big’, it’s more about ‘I don’t like the sensation of how my stomach FEELS’ (Brede et al., 2020).”

Several women in the study talked about hyposensitivity as well, which caused problems with interoception (the ability to sense the internal state of the body). This resulted in difficulty interpreting the signals and sensations related to eating, like hunger and the feeling of having eaten enough. Some women talked about missing meals because they didn’t notice they were hungry, whereas others would overeat by accident and then feel so uncomfortably full that they would restrict their next meals.  

One woman said of her troubles with interoception: 

“I’m not very good at judging my own emotions or physical sensations. I don’t really fully understand my thirst and hunger responses, or my fullness responses, so that really influences my eating because I can binge or miss meals very, very easily (Brede et al., 2020).”

These troubles with interoception were viewed as a potential cause of disordered eating behaviours, such as restricting food for a lengthy period of time, or binge eating followed by restriction.  

A number of women mentioned that they had never been able to regulate their eating based on internal cues and instead needed to rely on external cues like the time of the day, or the size of the dish. Developing a structured eating routine that is based on external cues may be a key strategy in managing eating disorders for Autistic people (Brede et al., 2020). 

One healthcare professional involved in the study remarked about the difference in presentation between Autistic and neurotypical girls with eating disorders, stating: 

“Girls without autism do feel hunger, but they are actively working against those feelings of hunger. Some of the girls with autism I’ve spoken to don’t seem to recognise it […] there’s something about their sensory profile that possibly means they don’t experience hunger in quite the same way (Brede et al., 2020).”

Many women in Kinnaird et al.’s (2019) study only found out they were Autistic while seeking treatment for their eating disorders. In one sense, anorexia became a way of coping with certain Autistic features that many participants were unaware of. 

The autism-specific motivations for the development of anorexia have clinical relevance for the treatment of anorexia in Autistic women. Many treatment models do not take these reasons into account and may be ineffective for Autistic patients. The Autistic women in Kinnaird et al.’s study described being seen as difficult or uncooperative patients by the eating disorder services they attended. This was because the eating disorder services were not knowledgeable about autism, Autistic needs, or the autistic/anorexia overlap.  

“The first facility I went to, before the autism diagnosis, was problematic because they thought that I was stubborn and lazy and unwilling to help myself and they let me know it. They ended up asking me not to come back, because my case was too ‘complex.’ (Kinnaird et al., 2019)”

Participants in the study also highlighted that they struggled to make treatment progress within the average timeframes and that the types of treatment or the treatment environments were not made with Autistic people in mind. 

“I’m very, very sensitive to noise. You know, extremely sensitive. Like things like laughter and stuff, I can pick it up so easily and I don’t like loud noises, like when someone’s distressed in the room I get very distressed, it makes me feel distressed … I feel like they didn’t understand that I needed to walk out, because apparently, they handed it over to the other staff for my notes. I feel like they don’t understand I took myself out of the situation because I can’t cope with the noise (Kinnaird et al., 2019)”

Refeeding programmes were particularly difficult for participants with sensory sensitivities because the people running them did not consider their sensory needs. Participants were frustrated because they were often willing to eat and participate in the refeeding programme so long as the foods were adapted for their sensory requirements. Staff, however, misinterpreted these needs as disordered eating behaviours and were dismissive of the participants’ requests. 

“It was sensory and texture and just caused me so much anxiety not because of what food it was but because of like, the sensory aspect of that food … it was always kind of acted as though I was just not really aware, and it was really the food that was causing me distress. And then that made me more angry because it felt like they were saying I was lying (Kinnaird et al., 2019).”

Participants struggled and felt misunderstood when their clinicians mistook their Autistic behaviours for disordered eating behaviours and tried to change them. These experiences led to some Autistic women questioning whether they had been misdiagnosed in this or other areas, such as having their Autistic meltdowns misinterpreted as anxiety or borderline personality disorder. One participant discussed what eating disorder recovery should look like for Autistic people, and that the goal should be less about eliminating all food-related behaviours and be more focused on enabling good lives: 

“Obviously people need to be having a good diet, and they need to be getting to a sustainable weight, and like not having everything controlled, but…like…someone is going to still have, probably, a rigidity around their food …that’s not the battle to be fighting. It should be about how much is that person able to now be like, engaging in life (Kinnaird et al., 2019).”

There is a clear and present need to recognise and address the unique motivations and experiences that underlie anorexia in autistic women. Conventional models of anorexia which are rooted in body image concerns and societal pressures do not always fully cover the diverse range of reasons that may drive disordered eating behaviours in Autistic women. The stories and insights shared by these women underscore the importance of shifting from a one-size-fits-all approach to flexible, individually tailored treatment plans that account for the unique needs and treatment goals of Autistic patients. As one participant in Kinnaird et al.’s (2019) study smartly put it: 

“Treating the anorexia as though it exists in a vacuum is incredibly harmful, because it’s demoralising to the patient, it delays recovery, and it frustrates everyone involved. Emphasis needs to be placed on figuring out which behaviours are anorexia-based, and which are autism-based. If someone is refusing to eat their dinner, it could be because their eating disorder is telling them that it will make them fat, or, the food could be touching, [which] is an Autistic sensory issue. The behaviours are exactly the same, but the causes can be so different. Knowing all of this, if doctors and therapists and dieticians can be flexible regarding Autistic patients, they’re going to see much better outcomes.”

References 

Brede, J., Babb, C., Jones, C., Elliott, M., Zanker, C., Tchanturia, K., Serpell, L., Fox, J., & 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. 

Kinnaird, E., Norton, C., Stewart, C., & Tchanturia, K. (2019). Same behaviours, different reasons: what do patients with co-occurring anorexia and autism want from treatment? International Review of Psychiatry, 1-10. 

• Author Ashe Yee – (B.A. – Psychology) – joined the Altogether Autism team as a researcher in late 2019. She graduated from the University of Newcastle in 2016 with a Bachelor in Psychology (First Class Honours). 
• This article has been shared as a companion piece to the 2023 Altogether Autism Journal. Fill in our online form to get the FREE Altogether Autism Journal delivered to you by post or via email.