Interview by Katy Campbell
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Amended: August 21 (correction to e-mail address below)
When I was training at the Maudsley 30 years ago, anorexic girls were treated as little more than malfunctioning machines. Even when a friend at medical school became terribly thin and suddenly “disappeared” from class one day, no one talked about it.
Very little research had been done on eating disorders and the causes remained a complete mystery to most psychiatrists. The view was that it was an illness that mainly affected middle-class, intelligent, white girls and was little more than an awkward phase of adolescence. Back then services were generally lacking, and treatments were borrowed from other areas of psychiatry and adapted to fit – a catch-all approach that spectacularly missed the incredibly complex causes of anorexia and bulimia.
Ten years later, while studying for my Medical Research Council fellowship, I became fascinated by the idea that brain mechanisms could contribute to a biological understanding of eating disorders. Twenty years on, there has been a huge change in the technologies available in understanding disease. The ability to decode the human genetic sequence means that, if a large enough sample of a particular disease is examined, and the DNA of those it affects is looked at, common risk factors emerge.
What we now realise is that we need to be looking at underlying neural networks in the brain – how patterns of information are processed, how this affects both behaviour and the way an individual reacts to her environment, and why this goes wrong. We need to consider those aspects of how the brain functions that increase the risk of someone falling prey to an eating disorder.
I and others have been working hard to examine such processes and the research so far has produced very interesting findings that we have already been able to put into treatment programmes. We have found, for example, that people with eating disorders find it difficult to change self-set rules and learnt behaviour once fixed in the brain. They also see the world in close-up detail, as if they are looking at life through a zoom lens – but this can be at the cost of having an ability to see and think about self-identity and connections with others without getting lost in the details.
We also discovered that this distorted pattern of processing information has a strong similarity to autistic spectrums. It has even been described as the female form of Asperger’s. Traits that may appear present in childhood, such as obsessive-compulsive disorder or overperfectionism, can often indicate a vulnerability to developing an eating disorder later in adolescence.
Of particular interest are difficulties in “set shifting” – being able to shift back and forth between different tasks or mindsets. Problems may show up in a variety of forms: for example, cognitive inflexibility – an overrigid approach to problem-solving; and response inflexibility – excessively stereotyped behaviour. An example of this is an inability to deal with a last-minute change of plan, such as a meeting. Interestingly, we have found poor set-shifting ability even after recovery, and have found it in the healthy siblings of patients with anorexia.
This trait among healthy sisters implies set shifting or cognitive inflexibility could be an underlying aspect of eating disorders and therefore a possible target for treatment.
As well as poor set shifting, people with anorexia can show weak central coherence, which can be defined as a bias towards the local processing of information rather than placing it into a broader context. For example, if they were in a meeting, they would be distracted by somebody’s fingernail and be unable to switch back to the matter in hand. This is one of the core features in cognition in autism spectrum disorders.
This trait became of great interest in eating disorders after a study a few years ago found the same kind of weak central coherence in people with anorexia as those with autism and Asperger’s. The study also found that more than 20 per cent of the anorexic group could be described as having a disorder from within the autism spectrum.
So how can this translate into therapy? The new Maudsley model of individual treatment includes interventions focused on traits such as perfectionism and rigidity. With this new genetic-based research, it is helpful for us to know whether the markers we determine of underlying brain function run in families – and how much the external environment moderates them.
Examining other family members is very important, especially when there is another young woman in the family. The children of women who themselves have had an eating disorder are particularly interesting in this new area of research, as comparing patterns of the illness across generations can enhance our understanding of environmental as well as genetic factors and how they interact.
But it’s not just about girls. Boys and young men seem to be more protected, perhaps by cultural factors in our society. But looking at the underlying brain function in male cases of eating disorders can improve our overall understanding. The risk factors, though rarer, tend to be more clearly defined.
Work on brain function, of course, does not exclude social and cultural triggers for eating disorders, the kind of thing that generates headlines about size zero models. It is clear that exposure to media images depicting thin women really does reduce body-related self-esteem. And the young models used to promote such images themselves may be at an increased risk of developing eating problems. But much of it happens in the home or playground, far from anything to do with fashion. Teasing and bullying focused on food and weight and body shape, particularly from family members, increases the risk of developing an eating disorder.
Eating disorders still have the highest mortality rate of any psychiatric illness. But there is a trend towards the numbers declining. I personally think a more optimistic outcome is within our grasp as we understand more and more the way the brain works.
Janet Treasure is Professor of Psychiatry at King’s College, London, and head of the Eating Disorders Unit at the South London and Maudsley NHS Trust.
Do you want to take part in research?
Professor Janet Treasure is seeking participants for a variety of research projects into all aspects of eating disorders, including a comprehensive support programme for carers.
If you think you could help, contact Frankie Bishopp on 020-7188 0186 or e-mail f.bishopp@iop.kcl.ac.uk. Further information from the KCL website: www.eatingresearch.com.
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Thisarticle made profound sense to me. I have recently been identified as having Asperger's..My near anorexic ED Is EXTREMELY ORDERED eating, and this is how I coped with my need to release the strain of an environment which was not validating . However, new info = new day!
Cherie Hanley, Kingston, USA
I have anorexia, my brother is aspergus. My mum had anorexia and one of her brothers had autism whilst here other brother has suffered bouts of a generalised anxiety disorder.
maybe there is some connection between us all.
natasha, london,
Very interesting. I felt I was misdiagnosed with Anorexia when I was in high school. I never thought I was fat. I was just so dang anxious all the time, I couldn't eat anything. One of the Psychologists pointed out that I had Social Anxieties, but stopped short of diagnosing Autistic Tendencies. Now that I'm an adult and my 8 year old son has been identified with Aspberger's, my own childhood finally makes sense to me!
Brenda, Bloomington,
If you cured yourself of Asperger's Syndrome, you never had it, or you are doing a good job of imagining you are cured (which is not uncommon I have found). Ultimately, people with Asperger's do themselves a dis-service by thinking they must become "normal." Trying to be "normal" will result in very chronic levels of high anxiety and breakdowns. Best to learn how to socially interact as best you can, and accept one's limitations in a healthy way--that ultimately means accepting that for people with Asperger's, long periods of solitude are healthy because it gives the brain time to rest. When Asperger' personalities become convinced that the need for solitude is bad, they are headed down the wrong path.
John, Cedar Falls, Iowa
When, oh when are all these 'experts' going to see that there are MANY more people on the spectrum than they'd like to think (i.e. currently poorly under estimated at c. 1:160-200).
What if many young anorexic women are actually on the spectrum but are mis-assessed? Just as I was misdiagnosed with whatever flavour of neurosis was in fashion for the first five decades of my life. We now know that I am simply another Aspie- one who doesn't have eating disorders but who can lose weight sensibly and, thanks to Aspie determination, at the flick of a switch!
I am so fed up with all these 'experts' pontifications. I am even more sorry for all my fellow Aspies - assessed and those unrecognised - for having to put up with such poor and even abusive medical opinion (and make no mistake, much of it is simply opinion).
Dr Quirk, Frome, England
Very interesting - as a child I suffered Asperger's Syndrome, although now (as a woman in my mid-20s) I'm virtually cured of it I still harbour traits of the syndrome, though nobody would know I have it as I 'cured' myself through sheer determination in my early teens. I've never suffered an eating disorder but have often noticed the similarities between myself and a bulimic friend; I strongly feel it is only my acute awareness of my syndrome and of what behaviours I have to look out for in myself in order to stop myself doing them that has stopped me developing mild eating disorders in the past. I've suffered various behavioural quirks and severe, crippling, all-encompassing panic attacks in the past - that this theory has been put forward is of no surprise to me at all!!
Sarah Humphreys, West Sussex,
I found this article very interesting also as I suffered from anorexia from the age of 17 to around 22 (I am now 29) and thankfully have put those days behind me. My father suffers from aspergers as well as my older brother and another brother has OCD and is somewhat of a perfectionist. I struggled for a long time to understand why I became this way in the first place -although I do tick the boxes for intelligent, middle-class, perfectionism etc, it is intersing to know that I may have been genetically 'programmed' to be this way...
Lorna, Edinburgh,
it is interesting to read this article as i had an eating disorder many years ago and this link may help me understand why my son aged 6 has aspergers, as this is a genetic condition and was passed onto him, and from the research it may have been passed on from me to him. i do feel not enough help is out there as people dont belive in this link. so it is nice to see that people are begining to take notice. i often wonder whether i show signs of aspergers. so there may be the mental imbalnce in the brain that shows the trait of them both. so would welcome more research on this
karen jones, shrewsbury, england
Andy and Andrew P, Gerda Fitz-Saltmarsh;
Your points don't make any sense; yes, there are plenty of male sufferers, but they too could be Autistic Spectrum....the point therefore would be that less male AS sufferers become anorexic than female AS sufferers. It is totally obvious that alot of anorexia is anti-social, rigid, obsessional...to call anorexia in females a form of AS is not in any way a ''crass generalisation''. If we step away from always seeing eating disorders in their own category, seperate from other anxiety/mental health problems, we can gain more insight into what sufferers are actually experiencing. People seem to have some irrational fear of making these connections....especially judging by your replies. Read the replies on here by female sufferers.....they speak volumes.
Phoebe, Beverly,
I have struggled with anorexia in varying degrees of severity for the past 10 years. A few years ago I began to notice how many similarities the illness has with autism/aspergers and was so struck by the sheer number that I actually wrote down a list of them (I still have it somewhere...). To know that this link is gradually being recognised by professionals has given me a wonderful sense of relief and hope.
Rachel, Sheffield,
Thank goodness someone has finally made this connection....nonsense? You must be joking! This couldn't be more spot on. I myself have suffered from severe forms of anorexia and bulimia from early adolescence onwards. I had severe OCD as a child and was seen at the Maudsley. I spent four years in residential units and therefore met what must have been a good range of sufferers. I cannot express strongly enough the blatant Asperger traits in a great many of the girls (and boys). The more chronic ones were usually the ones with relationship/social problems, ocd and general AS tendencies. Some did not fit that description ofcourse...but an overwhelming number did, myself very much included. I feel that societie's general understanding of eating problems, especially that which is cycled through the media, is very limited. A trajectory of rigidty and anxiety has existed in human behaviour long before Heat magazine....
Mary, London,
I strongly agree with Andy P and Andrew P.
I witnessed several men and women (family and friends) with ASD who became anorexic. Most were not even aware of their weight losses (and gains).
Maybe a sensory and proprioceptive system issue?
"Anorexia a female form of Aspergers"? What utter nonsense!
Gerda Fitz-Saltmarsh, Cairns, Australia QLD
My son aged 13 has had Anorexia since he was 11. When he was first diagnosed I read through a list of the typical personality traits of an eating disordered person and was immediately struck by the similarity between Anorexic traits and Autistic traits. I had concerns long before my son became Anorexic that he had many of the symptoms of Asperger's Syndrome. My youngest son was diagnosed with Asperger's Syndrome some years ago and I always felt that both boys were very similar. However, my eating disordered son doesn't quite tick enough boxes to qualify for a diagnosis. I searched the Internet many times looking for any literature on a possible link between Autism and Anorexia and could never find anything. This is the first time I've actually found something that verifies what I've been saying for the last two years! Unfortunately I think it's a case of very few clinicians who have expert knowledge in both fields.
Jane Watson, Basingstoke, UK
While it may be true that images in the media cause a reduction in "body-related self esteem" it is entirely unclear what this has to do with the development of an eating disorder. The fact of the matter is we do not know what "causes" an eating disorder. What is clear from clinical evidence (e.g. twin studies) is that ED have an heritability rate of approx. 70% (the rate for height is 90%), so there is a role for environmental factors, though this may just as readily turn out to be a virus, not the media. Personally I think the media hypothesis suffers from the co-mingling of science and politics (i.e. anorexics are victims of a patriarchal society rather than victims of a disease, much like diabetes). After all, would you believe one could develop type 2 diabetes from looking at pictures of cheese burgers? Would anyone?
Morgan O'Toole, Portland, Oregon
I am male & had Anorexia in my teens. I am now 38 & have left this experience far behind. I take issue with the view Anorexia is a female Asbergers, as it ignores people such as myself. I may be statistically inconvenient, but I know I'm not unique, so I & those like me seem to disprove such a crass generalisation of a complex condition which affects both male & female.
Andrew Potter, Dereham, Norfolk
I have Asperger's myself. At the age of 14, I developed panic attacks. The fear I put up with cannot be described, it pervaded every moment of my thoughts for years (I finally got over my panic attacks in 1998 at the age of 26). I am sure that if I was female, I would have had an ideal body image obsession rather then the "male" obsessive fear of losing strength and appearing weak. I could have been severely anorexic. So I agree with the connection between autism in women and eating disorders, it seem obvious to me as I believe I had the male equivalent. I have just finished a PhD myself.
David, Dublin, Ireland
Very interesting article and accurate from own personal experiences. Both my daughter and my sister have experienced eating disorders. Before I realized my sister had an eating disorder I always thought she was slightly autistic. Although my daughter's ED is very different she also displays the characteristics described in the article. What I would like to know is how to help my daughter?
tina dhillon, Vancouver, bc canada
My daughter develpoed anorexia around 12years old and in spite of being seriously ill managed to get a degree from Oxford and start a Phd. After this she got much worse and had hospital admissions. Now at age 29 she has beendiagnosed with Asperger's. As a carer it is hard to know what to do to help her. I would like to help in research in anyway possible to find answers, I live in London and she now lives in Devon managing a life of sorts independatly.
Anyhelp I can give you I will.
Sue Barker
sue barker, london, uk
If Anorexia is the female Asbergers, where does this leave the male suffers of Anorexia? I suffered from it in my early teens & I was male last time I looked!
Andy P, Dereham, Norfolk
Anorexia and other eating disorders are probably unlikely governed by a set of "genes", per se - but it is known that these disorders are often clustered in families with certain personality disorders - such as OCD, high anxiety, and addictions. Gender plays a role in the type of disorder which precipitates. Women's reward circuitry is very highly linked with both food and anxiety - which is confirmed in the gender disparity seen in eating disorders. It is also known that a relatively high percentage of anorexics were exposed to sexual abuse at some at critical times of psychological development., and these behaviors are adopted to relieve anxiety built around control issues.
Shirin Kalyan, Vancouver, Canada