Eating disorders and the autism spectrum

I wrote this a while ago but thought it might be relevant for this blog and people might find it interesting 🙂

 For Eating Disorders Awareness Week, I’m writing about the link or crossover between eating disorders and the autism spectrum, particularly in women. I became interested in this area from personal experience of being diagnosed first with anorexia nervosa and then informally diagnosed with an autism spectrum disorder which was genuinely like someone had suddenly explained my whole life experience to me and it suddenly made sense.

 My first introduction to the autism spectrum came from a psychologist I was seeing in an eating disorders service when I was 19. She gave me an article written by Janet Treasure who is a psychiatrist specialised in eating disorders and who has been investigating the link between ED and ASD. I didn’t really know what the autism spectrum was before that time, but the mention of routines and obsessive interests caught my attention straight away as these were something I associated very strongly with having an eating disorder. More recently, I’ve been reading a lot of articles and studies about this area and have been genuinely excited about what has been found.

 I don’t want to go into massive amounts of detail about research studies because that could be very boring to read, but will summarise some of the most interesting studies I’ve read so far as part of research. The majority of research has focussed particularly on anorexia nervosa although there are a few studies that look at bulimia nervosa and EDNOS. I think it’s important to look at all aspects of eating disorders because, for many women with ASD, an eating disorder can be as focussed on controlling overwhelming emotions or feelings you don’t recognise or understand as it is linked to weight or body image. After summarising the articles, I will give a personal perspective which is only one experience of ED and ASD- everyone’s experience of either is different and the interaction of both is unique in every person who is affected by it.

 In the study ‘Aspects of social cognition in anorexia nervosa: Affective and cognitive theory of mind’ in 2008, Russell et al looked at aspects of social functioning in anorexia nervosa (AN), focussing on affective and cognitive theory of mind. They used female participants diagnosed with anorexia nervosa (both restrictive and binge-purge sub-types) and female healthy controls who were screened for Axis 1 disorders, neurological disease, history of head trauma and current use of psychotropic medication prior to the study and administered two tasks which assessed both aspects of theory of mind to identify which, if any, was impaired in individuals with anorexia nervosa. They used theory from previous studies such as Keys et al’s 1950 experiment on the effects of starvation on healthy individuals and Connan et al’s 2003 study into the neurodevelopmental effects of starvation during critical stages of development to pre-empt a possible difficulty of distinguishing between traits associated with AN and the effects of starvation of the brain and focussed their study on aspects of theory of mind associated with social cognition rather than emotional recognition which was formed the basis of the majority of previous studies. The main limitation of this study is that, as with the majority of other studies found, it only used participants with current AN rather than a comparison with weight restored participants which restricts the results to a current AN state which, as the authors note, could be affected by starvation which affects the brain physiologically in a way that mimics some autistic symptoms, and the relatively small sample size of 22 AN participants and 22 healthy controls. The study is interesting because is differentiates between two different forms of theory of mind and finds a sub-group of AN participants with specific ToM difficulties due to the higher proportion of participants performing poorly on the task which is interesting because it suggests that a particular aspect(s) of theory of mind or social cognition could be affected in AN.

 In relation to bulimia nervosa, DeJong et al carried out the 2011 study ‘Social cognition in bulimia nervosa: A systematic review’. They reviewed studies that looked at aspects of social cognition in bulimia nervosa (BN) and evaluated them to examine whether there are deficits in social cognition in individuals with BN. The article is significant because, as a contrast to the majority of previous studies, it focusses specifically on BN as opposed to current anorexia nervosa and is therefore not restricted to a low BMI or possible effects of starvation. They differentiated aspects of social cognition such as social perception, social knowledge, attributional bias, theory of mind and emotional awareness and reviewed each separately looking at studies from PsychInfo, PubMed and Scopus which used participants with BN and healthy controls. They referred to theory about socio-emotional factors associated with BN such as social anxiety and interpersonal difficulties and point out that these could be made worse by the bulimic symptoms and also mention common co-morbidities with BN such as borderline personality disorder (BPD) which I found interesting because some of the symptoms of BPD such as difficulties processing complex social information and social anxiety are also present in both eating disorders and ASD. Although the article did not find significant differences in all areas of the studies reviewed such as theory of mind and emotion recognition, the results in terms of attentional bias are towards specific emotions such as anger are interesting and the finding that people with BN appear to have difficulties with inferring both the emotions of self and others in interpersonal scenarios is interesting in relation to ASD, especially looking at difficulties with emotion recognition.

 Another 2011 study, ‘Is Anorexia Nervosa a Version of Autism Spectrum Disorders?’ carried out by Oldershaw et al looks directly at the link between AN and ASD. They aimed to do a direct comparison study looking at the cognitive profile of AS compared to published ASD data using tests to assess empathy, executive function and central coherence. They referred to theory and studies that have examined the crossover of AN and ASD, giving examples of different aspects of this such as eating disturbances and statistics to support the theory. I found this article particularly useful because it covers both AN and ASD perspectives and referred to the work Gillberg et al (1995 and 1996) which suggests that there is a higher proportion of individuals who meet the criteria for ASD in AN population and also that there is a sub-group of people with ASD who will experience a clinical eating disorder (Kalvya, 2009) which is the inverse of the majority of previous studies. They also pointed out limitations to tests used in previous studies such as the systemising scale used by Hambrook et al (2008) which could be seen to have a gender bias towards interests commonly associated with men which might exclude females who could be seen to be high systemisers, and this is particularly interesting for women seeking an ASD diagnosis. I found this study particularly relevant because it focussed on three cognitive features which appear to occur together specifically in AN and ASD (empathy, executive function and central coherence) although the study used participants with current AN so, like previous studies, the effects could be partly a result of starvation and are restricted to current AN rather than other eating disorders or weight restored individuals. As a contrast to this article, which questioned whether AN is a “version” of ASD, I am going to look at the area from an inverted perspective and look at whether high ASD traits could lead to the development of a clinical eating disorder and any differences from eating disorder traits in individuals without ASD traits which is referred to in the article but not fully explored.

 Yet another 2011 study (seems to have been a very busy year for this research!) by Harrison et al looked at ‘Social emotional functioning and cognitive styles in eating disorders’. They looked at the structure of both cognitive and social emotional functioning and how it correlated to severity or duration of eating disorders. I particularly liked this study for its breadth: the study looked at the maintenance of eating disorders as well as their onset and possible premorbid traits, and used a range of participants with variations of current eating disorders (restricting and binge-purge sub-types of anorexia nervosa, bulimia nervosa and EDNOS), participants recovered from AN and healthy controls. The scale of the study which uses 225 participants is also significant. They referred to contemporary models of eating disorders and possible premorbid traits, and they gave several examples of observed behaviours or previous studies to support their theory. The use of a recovered group of participants was particularly valuable because it avoided the possible objection that the results could have been affected by starvation although there is still a possibility that long term starvation could have had an effect on the cognitive or social emotional functioning of the brain. Harrison et al mentioned this in their discussion and suggested that further research could include a longitudinal study into this area to further investigate whether the cognitive or social emotional functioning is a premorbid trait that serves to maintain the eating disorder or if it is an effect of the illness.

 There are many more studies which look at the link between eating disorders and the autism spectrum from a psychological or scientific perspective, but I am aware that summarising them all would be very long and possibly boring to read! I’m definitely not an expert but I do have a strong interest in this area. From what I’ve read about eating disorders and the autism spectrum as well as personal experience, the main areas which I’ve found cross over from one to the other are structure and routines, emotional immaturity or fear of ‘growing up’, possible lack of sexual interest or (perceived) inappropriate sexual attraction, obsessiveness, difficulties in social relationships or ‘reading’ other people, wanting to ‘fit in’, difficulty recognising and/or managing emotions, and logical or ‘black-and-white’ thinking. Obviously not all of these will apply to everyone, but I think they are relevant. Eating disorders develop for different reasons in different people and every case is individual, but a common trigger can be the need for control or control over emotion which can be a reason that EDs often start in teenage years as emotions are often overwhelming at that time and for girls with ASD particularly, a sudden influx of emotion that you don’t necessarily understand can be terrifying.

 For teenage girls with ASD in particular, emotional changes which are already intensified in neurotypical adolescents can seem overwhelming for an autistic girl. Autistic sexual development is the same as neurotypical sexual development but usually occurs over a much longer period of time- although a person with ASD matures physically at the same rate as their peers, social and emotional development is often delayed and typical adolescent characteristics such as sexual interest might not occur until a person is in their 20s or even 30s. The combination of both of these factors can seem unbearable for teenagers, particularly teenage girls, on the autism spectrum and especially if the autism is undiagnosed or not fully understood as this impacts on a person’s self esteem and how they perceive themselves, or how others might perceive them. This also links with the difficulty that a lot of people with ASD have with understanding and expressing emotions and this again can lead to eating disordered behaviours as a way to manage or reduce intense emotions.

 From a personal perspective, my eating disorder began when I was a teenager and I’m still not totally sure when. I’d always been very routine-oriented anyway, and this became a coping mechanism for when I felt completely overwhelmed in the first few years of secondary school and I owed seemingly endless amounts of late homework (organisation has never been a strong point) and I seemed to have no ‘real’ friends. When I became a teenager, I realised that I was ‘weird’ compared to most people in my year group because I was still obsessed with Disney films and children’s books, and had no sexual or romantic interest in either sex. The feeling of weirdness got stronger when I developed an obsessive interest in one of my subjects at school, which then transferred to the teacher of that subject. At the time, I had never heard of the autism spectrum and was totally unaware that obsessive interests are very common, and that, in girls particularly, these can often be transferred to people you look up to or who are associated with your special interest. I knew there was no sexual or romantic attraction but this was confused in my mind because I had no interest in any form of relationship with anyone at all, and the idea of any form of sexual relationship terrified me (at 29, it still does). I was completely confused and felt really guilty about what I was thinking and feeling, and it was made worse as my obsessive interests began to annoy or bore other people and I was convinced I was a weird, obsessive freak. Most of my friends were at least three years younger than me because I felt more comfortable with them, partly because I genuinely felt much younger than people in my year group and partly because being friends with people outside of your year group takes away a lot of the social pressure.

 I know now that a lot of this is typical of girls with ASD and that what I was experiencing was a natural part of adolescent development but at the time, ASD was not commonly talked about (I’d never heard of it) and Asperger’s syndrome or high functioning autism often went unrecognised. For me, the most distressing part of it was the obsession with a person which I didn’t understand and which made me feel like there was something seriously ‘wrong’ with me or that I was some kind of creepy stalker. Obsessiveness also led to a lot of rejection, both in friendships where I would often over-text people because I was worried they weren’t talking to me or that if I didn’t contact them they’d forget I existed, and also (more obviously) with people I’d ‘latched on’ to or become obsessive about. The hardest one to deal with as a teenager was a fixation I had on the teacher who taught my favourite subject and at the time, that was all I could think about and it completely took over my life which sounds like an exaggeration and now, I find it hard to imagine, but she was my ‘default thought pattern’ and everything I did was to try to make her like me or to be like her. That was the most important thing to me at the time- if she was nice to me, it made me feel amazing for the rest of the week but if she ignored me or told me off for something, it felt like the worst thing that could ever have happened. This sort of fixation with people continued into my 20s with various people (the ‘obsessions’ would usually last a couple of years, or until the person asked me not to contact them again) and over the last few years, they have gradually become less intense which I think is partly due to more acceptance and understanding of ASD and partly as a result of taking anti-depressant and mood stabilising medications.

 I first began to experiment with my food intake when I was 13 because, as many teenagers seem to think, I thought that losing weight would somehow make me more ‘cool’ or acceptable at school. I had no idea how to diet, and my obsessiveness took over as I became obsessed with not eating any form of fat or ‘junk’ food. I lost a small amount of weight but the anxiety over it increased which led to bingeing. After a binge, I would restrict or stop eating completely for the weekdays, then binge again at the weekend. This continued for the next few years as I realised slowly that restricting numbed feelings of not fitting in or not being good enough, and bingeing reduced anxiety. My weight fluctuated slightly but not drastically, and at that point, it was much more about controlling how I felt and numbing overwhelming emotions which I couldn’t understand or, much of the time, even recognise and I felt like I was in a constant state of vertigo and guilt.

 When I was in my final years of school, the obsessive interests became more of a problem and less acceptable, as did my friendships with people several years younger than me. I also began to realise that soon I would be leaving school and that terrified me- much as there were a lot of things I found difficult at school, particularly socially, the idea of leaving behind a ‘safe’ structure and routine seemed much worse. When I turned 18, I made my own ‘routine’ around timings, food and exercise and decided to stick to that as a sort of bridge to leaving school and becoming an adult. The bingeing stopped and I stuck to the routine religiously, and my weight began to go down. As it dropped, my obsessive thoughts became focussed on food and weight instead of focussing on a particular interest or person, or what people at school thought of me, and this felt much safer. When my weight went below a certain point and my periods stopped, I realised that my ‘teacher obsession’ had gone away completely which was the biggest relief of my whole teenage years and I became convinced that I was weird because I had been so fat and that I had to stay under a certain weight to be ‘normal’ or acceptable.

 After that, my obsessiveness took over and I lost a lot of weight very quickly and was admitted as an inpatient in an eating disorders service later that year. I did not identify as having an ‘eating disorder’ as my experience seemed different to most of the other people there, and I found the ‘social’ aspect of living with the same people every day very difficult although the highly structured environment of an inpatient ward definitely helped while I was there, but I have found it very hard to ‘break’ that routine and even now still stick to ‘safe’ foods and the same timings for meals. I had three admissions over two years until I realised several months into my last admission that, for me, being an inpatient was not helping much beyond weight restoration and could even be detrimental because of the social difficulties and the obsession with routine. I discharged myself and have not been an inpatient since. I think that inpatient ED services can be very useful and are often essential for people who are at a very low weight or whose physical health is affected but they can also be detrimental for some people, particularly people with ASD, because they are necessarily structured which can reinforce the difficulty with breaking routine or initiating change, and because of the intensity of living so closely with other people. I know that an admission is sometimes unavoidable but I also think that there should be more focus on developing new strategies to deal with ED thoughts and behaviours and particularly how they link to other issues such as managing emotions or identity issues which are common in both people with EDs and with ASD, and working on flexibility or spontaneity rather than enforcing another ‘routine’ which can be even more difficult to break. I haven’t been an inpatient since 2007 but I still stick to the same meal times and basic foods which I have found it very, very difficult to even try to change.

 It was later that year that the psychologist I was seeing in the ED service first mentioned the autism spectrum. I had never heard of it but once I read more about it, something seemed to ‘click’ and suddenly things seemed to make a lot more sense. I did a lot of reading about the autism spectrum and started to use online message boards and forums, and it was as though someone had explained my whole mindset to me in a way that made sense. Self esteem-wise, it was about the most useful thing I have ever discovered because, slowly over the following few years, I realised that I was not ‘just weird’ or an ‘obsessive freak’ and that there was an explanation for why I got so panicky without a routine, or annoyed people without realising it, or didn’t seem to ‘fit in’.

 I still have obsessive interests now but I make use of them in a constructive way- my current obsession is the television programme ‘Homeland’ and I have a very detailed blog written from the point of view of Carrie Mathison, the main character, who has a diagnosis of bipolar disorder but also displays a lot of autistic traits (if anyone’s interested, it’s called Carrie Mathison’s Diary and I also have a Facebook page under the same name). Amazingly, there are actually people who read it (!) and it really helps to channel emotions and overwhelmingness by writing through Carrie’s perspective. My ‘people obsessions’ are a lot less intense than they were as a teenager, and I think this is partly because I have come to accept them more and am often relatively open with people about them which really, really helps. And writing fiction can be a very powerful tool- I wrote a creative writing piece a few years ago about a teenager who has a non-sexual ‘crush’ on a teacher which really helped to deal with the underlying feelings I hadn’t realised I still had, and I also play the Sims PC game which helps to ‘practise’ all sorts of social situations- I would recommend it to anyone on the spectrum. Fiction can be a great way for expressing or dealing with feelings or emotions if you don’t necessarily know what they are. For teenagers especially, it’s important that emotional awareness is taught in an explicit and clear way, and that strategies to manage difficult emotions are explained specifically in a way that the person can relate to and use effectively, which will be different for each person.

 Something I have found really useful for both recovering from an eating disorder and dealing with overwhelming emotions and social skills related to ASD is using skills from dialectical behavioural therapy (DBT). I recently discovered a book called ‘The Dialectical Behavior Therapy Skills Workbook’ and it is amazing- would recommend it to anyone on the spectrum struggling with any form of eating disorder, anxiety, depression or almost any other mental health issue. It’s split into four sections on distress tolerance, mindfulness, emotion regulation and interpersonal effectiveness and the structured, practical format is really accessible and teaches a lot of useful skills. Not all of it will be relevant but it’s definitely worth having a look at, and doesn’t involve any interaction with other people so is a lot less intimidating than accessing support can sometimes be. I’ve found the parts about managing emotions particularly useful and have a ‘coping card’ which is a laminated card where one side gives strategies to deal with intense anxiety or anger (such as sensory grounding, running cold water over your wrists, counting sounds or lists and other things I’ve found that work for me) and the other side relates to low mood or being ‘zoned out’ (such as listening to certain music, smelling salts, drawing or colouring, watching TV shows I’m currently obsessed with etc). There are about twenty things on each side and the idea is that if you’re experiencing intensely distressing emotion of any type, the ‘rule’ is to try at least two things from the card before resorting to bingeing or self harm. The idea is that by using distraction techniques, the intensity of the emotion will reduce and become easier to manage.

 I think the concept of ‘recovery’ from an eating disorder is very complex anyway, and even more when it comes to people with ASD because of the need for routine or structure and difficulties with change. I’ve been a ‘normal’ weight for the last six years and am physically ‘recovered’ but the ED thoughts are much stronger and harder to deal with at this weight than they ever were when I was a low weight. When you are severely underweight and your periods have stopped, your emotions, obsessions and difficult thoughts are much less intense and this is one of the factors that I think can make it particularly difficult for people with ASD to fully ‘recover’. It’s also very difficult for anyone with an ED to vary their diet but especially for people with ASD who often like to stick to the same things and routine in all aspects of life, not just food. As an inpatient, I was able to eat a more varied diet because that was the ‘rule’ but as a general rule, I eat the same few foods (even when bingeing) and I haven’t managed to change that yet because of the intense anxiety it causes which I know is typical of people with EDs but I think it’s also related to ASD because I also don’t want to change the times of meals or how I eat them and this extends to most things I do and not just food (I need to be in bed by a particular time, get up and be dressed by a particular time and get very anxious if I don’t have a routine for the day). It’s also an issue with accessing support because many ED and mental health services don’t want to work with people with ASD because it’s a neurological difference rather than a ‘mental health issue’ and some areas don’t have autism services for adults. Some psychiatric medication can be helpful for people with ASD in relation to managing obsessions or anxiety, with low mood and with sleep but it is not a long term solution and there still needs to be a lot more awareness of ASD and co-morbid mental health issues such as eating disorders or obsessive compulsive disorder.

 I think that eating disorders can develop in women on the spectrum for many different reasons, and everyone is unique- my experience is personal to me, and every person is different. But having said that, there are many traits of ASD which are similar to ED traits which can increase susceptibility to eating disorders, particularly if self esteem is already low as it often is with women on the spectrum. Both eating disorders and ASD are self-focussed and isolating, which can also increase the possibility of other mental health issues such as anxiety or depression and this makes it even more important to raise awareness about eating disorders on the autism spectrum. Women are underdiagnosed with ASD compared to men and it is often harder to spot, which makes it vital that people are aware and accepting of it. Autism is a difference and not necessarily a negative, and it’s so important that people know and understand what it really is and how it impacts on people’s lives.

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