Anorexia co-morbidities: Autism and OCD

CW: some discussion of eating disorder behaviours (no numbers), sexism in medical context

I was diagnosed with Autism Spectrum Disorder (ASD) three years ago in 2018. I was 26 years old, an adult, and had struggled for a long time. I had suspected I might be autistic for some time, though many of my peers were sceptical because I was very good at something called ‘masking’ which is a way of hiding my autistic traits to fit in.

Part of the reason that I hadn’t received a diagnosis earlier than this is due to my assigned gender at birth. Significantly less girls are diagnosed with autism than are boys and this is largely due to extreme gender bias in autism research. Autism was (and still sometimes is) referred to as ‘the extreme male brain’ – the idea that autistic traits are that of someone who is exhibiting the extremes of male behaviour. This is more commonly applied to a certain type of autistic person – the ‘auteur’, as it were, the strange genius. I think of it as a male superiority complex and complete lack of empathy for women and autistic people. And they claim that we lack empathy.

What’s interesting is that anorexia has also been described as ‘the female form of autism’, though nobody seriously posits this any more it is, nonetheless, an insight into the way anorexia is theorised. Women and girls are the overwhelming majority of eating disorder and anorexia patients and it is notoriously under-diagnosed in men. There are certain ideas about which disorders ought to be applied to which gender and a lot of sexist assumptions around an outdated idea that ‘male’ and ‘female’ brains are markedly different.

So, autism is a male disorder and anorexia is a female disorder. What happens when you have both?

There is evidence to suggest that around 20% of those with anorexia are also autistic. Studies have primarily been done on diagnosed anorexic patients, screening them for autism, rather than the other way around. They have also only been done on female participants, again due to the gender bias in both diagnosing and treating eating disorders.

To be clear – I think it is likely true that more women/girls than men/boys have anorexia specifically but I also believe that men and boys are very likely to have eating disorders that are undiagnosed because of the way in which they approach it. For example, body building, weight training and other forms of athleticism where men engage in extreme forms of dieting in order to manipulate their bodies. This is a form of disordered eating which does not present as the stereotypical anorexia but is dangerous nonetheless.

The general consensus seems to be that some autistic traits lend themselves particularly well to eating disorders such as rituals, repetitive behaviour, routine, obsessive interests, rigidity and alexithymia (inability to identify your own emotions). One of the key identifying features of autism is ‘restrictive and/or repetitive behaviours or interests’. This was certainly the case for me; it is very easy for me to become obsessive about a topic if I have a mind to. I researched as much as possible the topic of losing weight effectively and then implemented whatever seemed to be the most evidence based. My calorie tracker became a ritual, a routine, a fixation and my life was ruled by the numbers that it produced. I was rigid in my adherence to it and quickly came up with my own ‘rules’ to follow. The exercise I did was very repetitive, it had its routines and I stuck to it every single day. My approach was very ‘logical’ or felt that way to me – but the logic of the rules soon gave way to dogged determination to stick to them regardless of their detrimental effects and extreme anxiety if they were not followed. My behaviour was very repetitive and I was restricting myself in multiple ways. Autistic people tend to carry out rituals to soothe themselves and to feel safe, as do anorexics.

There is also some suggestion that anorexia can help one to ‘numb’ difficult feelings and emotions that one is having. Autistic people often struggle with very strong emotions due to being over-stimulated often or being exhausted from having to ‘mask’ their traits constantly. The outdated assumption that autistic people lack empathy is now being challenged and there is an idea that many of us are actually hyper-empathic which means we struggle because we feel the emotions of others very strongly. I have struggled with intense emotions all my life; when I was younger I was diagnosed with Emotionally Unstable Personality Disorder (EUPD) more commonly known as BPD (Borderline Personality Disorder). I believe this diagnosis was incorrect and it was my autism that led me to struggle as I did, alongside depression caused by the lack of recognition and accommodations. Anecdotally, I know many women and AFAB (assigned female at birth) people to have had this same misdiagnosis issue.

For those struggling with emotional regulation, in some ways the effects of anorexia, the emotional numbing, can be a coping mechanism. The effects of starvation mean that you are able to focus only on your most basic functions, your obsessions are limited to food and movement, you can only feel irritation really. The sadness is not so intense but neither can you truly feel happy. This certainly bears out for autistic women and AFAB people who may not have been diagnosed until later in life and have struggled intensely because of it. I was told that because I was a ‘high functioning’ autistic that I would receive no follow up treatment or support at all upon my diagnosis.

To expand – the idea of ‘high functioning’ and ‘low functioning’ autism has primarily been a way of allistic (non-autistic) professionals perpetuating eugenicist ideology within the autism community. These functioning labels arose from Nazi scientists attempting to decide whether autistic people were ‘low functioning’ thus useless to society and should be murdered en masse or if they were ‘high functioning’ enough to be of use to the Nazis. Incidentally, one such scientist was Hans Asperger and this is where the term ‘Asperger’s Syndrome’ arose from (for ‘high functioning’ autistics). It is no longer used diagnostically and I would suggest that people do not use it due to this association.

This aside, functioning labels also serve as a way to determine the level of struggle one has in handling one’s autism. If you are ‘low functioning’ then you will never amount to anything, you are ‘stupid’ and need to be ‘looked after’ and belittled. You are sub-human, in a way. If you are ‘high functioning’ you must be extremely talented, super human and need no support at all. Both of these seek to further disable the person in question by denying them agency to explain their own needs and get the right support. Different autistic people need different levels of support, that much is clear, but it ought to be on a case by case basis. My experience of being ‘high functioning’ is that I can function very well…up to a point. Then it all comes crashing down rather dramatically, as it has done repeatedly throughout my life.

Autistic people are highly likely to suffer from mental illness such as depression and anxiety. I don’t believe this is a natural outcome of autism but one that arises from an inhospitable world. Autism is a natural variation in neurotype, a different way of one’s brain functioning, which does not necessarily have to be negative at all. If it were accommodated and not ridiculed I truly believe that autistic people could be perfectly happy and functional. Unlike anorexia, it is not harmful to the person experiencing it – rather suppressing it is harmful, trying to function within neurotypical, capitalist limitations is harmful.

Another interesting aspect of the literature on this topic is the presentation of autistic women in their anorexia. They are often presented as ‘not caring’ about their body image in the same way a typical anorexic presentation would manifest. The diagnostic criteria for anorexia states that one must have a fixation on body image and weight or a fear of gaining weight. There also needs to be an inability to ‘see the seriousness’ of one’s condition and a low body weight. I find the focus on these particular criterion quite strange considering the vast array of other symptoms that present very commonly in anorexia (e.g. compulsive behaviour, food rules). I think it betrays a bias in medicalised pathologising models that see the disorder as primarily a physical issue to be rectified (i.e. increase weight). This makes it difficult for people who may not neatly fit into this presentation to seek treatment. (To be clear, I do think the physical side of recovery is the most important in the initial stages before psychological intervention takes place but in helping people understand they need help I think this focus can be limiting).

That said, I think there is a level of internalised sexism in anorexia communities that causes some people to protest too much about their supposed disinterest in body image. They don’t want to be seen as shallow in some way, they’re ‘not like the other girls’ and their reasons for doing this are much deeper than those other girls. I don’t think anyone with anorexia is only doing it because they ‘want to look like a model’ – simply because I don’t think that could be the only cause of such an intense, obsessive illness. I think clinicians try to minimise and belittle women constantly and because this is something that seems to primarily affect women they believe it is a shallow, vain thing rather than a deep rooted issue. This seems particularly true since the majority of people in anorexia treatment are teenage girls, who’s every thought, idea and action is seen as inherently trivial.

In my experience, a lot of autistic women and girls do end up with some level of internalised sexism because they struggle to perform femininity and are heartily punished for it. Girls can be cruel and the harshest police of performative gender, particularly when young. I don’t mean to say that anyone is lying when they say that their anorexia is not about body image but I do think the way it is presented is problematic insofar that it betrays a form of sexism in its account. It implies that this is not the case for any others or that patients don’t emphasise their body image issues because they’d like to access treatment, for example.

The assessments for eating disorders put a lot of emphasis on your feelings about your body under the presumption that this must be what is driving the disorder. For me, I think I did want to lose weight initially by going on a diet but the weight loss became much more about reaching goals I’d set, sticking to safe routine, feeling unable to stop my behaviours, than necessarily thinking about my body. My body itself didn’t really matter, it felt a million miles away from me, unreal. I didn’t or couldn’t comprehend my body at all sometimes. Once your compulsion begins then it seems to become far less about the body. It actually became far more about my body in recovery than in the midst of the disorder.

Anorexia also often ends up bringing in OCD (obsessive compulsive disorder) tendencies – these are repeated patterns of behaviour stemming from obsessive anxiety about a particular event/ill affect happening if the behaviour is not completed. This can involve things like ‘checking’ (if the door is locked/oven off) or touching something a certain number of times (tap light switch 10 times) and a number of other similarly compulsive behaviours to provide reassurance to the sufferer. If these actions are not completed the sufferer feels panic and even terror of the consequences. This sometimes mirrors the autistic need for repetition and use of repetitive behaviour and routines to feel ‘safe’. The distinction lies in the usually more positive motivations that autistic people have – it provides them reassurance rather than feeling negatively compelled to do it.

I raise this because I think there are similarities in behaviours which might have given rise to some of the similarities in autism and anorexia. It is well established that many anorexia sufferers also struggle with some form of anxiety disorder, of which OCD is common. I was never diagnosed but many of the behaviours within my eating disorder seemed to go from being a more autistic, comfort based routine to one that I felt I could not possibly forgo for fear that something completely terrible would happen. Often this was a fear of gaining weight but it felt more than this. It felt catastrophic, somehow. I’ve described some of these compulsions before – many were around exercise and some around food. I also picked up some seemingly unrelated behaviours that became compulsive as well and I am working on this with my therapist at the moment. There are some links between autism and OCD simply because many autistic people become very anxious due to how difficult navigating the world is for them. To me, OCD is simply one manifestation of anxiety that arises in a certain proportion of people. In a way, it feels like a method of managing that anxiety – though not one you ever consciously thought of or consented to.

The treatment for anorexia and OCD are somewhat similar – ‘exposure therapy’. As in, exposing oneself to the thing that one is afraid of. This is done gradually and with support. You are teaching your brain that the scary thing is not really scary and you teach it this by giving it data to support that notion. I had to do this without any professional support initially. They say that autistic anorexics are difficult to give treatment because they are ‘stuck in their ways’ and routines. This is especially true if they’ve had the eating disorder over a long period of time.

I found it very challenging to change my routines – anyone who knows me well is aware of how I hate to change plans. But I was sick of feeling so powerless and how awful I felt so I forced myself with the help of friends and partners. I don’t think they fully understood how far my fight/flight mode was constantly activated at first. It truly felt like hell. But then it felt less like hell, sometimes. Now it feels like that maybe 50% of the time. Things fluctuate. Some days I have to ask my partner to bring me food and take me out of the decision making process entirely. Some days I eat a full cooked breakfast and pizza. Some days it’s a slog just to stick to my meal plan.

Creating new routines is my next plan, to help me stay on track. I think autism can be a positive thing in recovery because your new interest can be in how to recover, as I feel mine has been. I’ve researched it a lot, I’ve taught myself everything I can. You have to repeat things a lot – create a new eating routine, repeat yourself on challenges. One day I will not be worried about the amount of oil in my food any more! I believe autism can be a strength, although this world beats us down constantly we are also amazing people with lots of knowledge that we can use to help ourselves. Turn that knowledge in on yourself – that is what I am learning to do!

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