TOM - theory of mind, not the shoes or the time of month

When I see "ToM" I have a quick blush at "time of month" and then my favorite shoes and then: one of my favorite concepts: "Theory of Mind."

Those familiar with autism and Aspergers know this idea well - but I think parents can add it to my hit parade of vocab words: alexithymia, anosognosia, ego syntonic.

In the best description I've seen, by my friend Cathy, ToM is "the ability to mentalise; i.e. to identify and understand your own emotions and others' emotions - and to respond 'appropriately' to such emotions....It is suggested that while 'normal' (non autistic/non-Aspergian) children learn intuitively to 'read' other people (and themselves), children with Asperger's syndrome (AS) learn this process intellectually. Most 5 year old children are quite adept at 'reading' other people - by their facial expressions, body language, tone of voice etc., but children with autism/AS have difficulties with reading body language and using it in a way that other people understand. When I was a child I related relatively OK to my close family, but I couldn't work out other people, including other children. As a consequence I became sullen and depressed at school, and at times, mute. And, I was very, very gullible and easily 'set up' or taken advantage of by other children."

How can this relate to eating disorders? "If a child with autism/AS develops an ED it may because they're struggling with their own emotions/feelings, and they are less likely to understand the effect that their illness is having on other people."

There is a growing awareness that Aspergers may be going undiagnosed in girls, especially, as it presents in a different way than in boys. More and more researchers and clinicians are noting similarities between the ToM thinking of eating disorder patients and those with Aspergers - some even calling anorexia a form of female Aspergers.

But then, one researcher I know dismisses this idea, saying "The brain has only a certain number of ways it can malfunction, and ToM is one of them - many brain problems may present in the same way, but that doesn't tell us something essential about this particular illness or how to treat it."


  1. Interesting post Laura, and I'm happy if my description of ToM (not Time of Month - LOL) was helpful :D

    I think that the link between Asperger's Syndrome (AS) and Anorexia Nervosa (AN) is more complex than ToM alone. People with AS also have restricted, repetitive behaviours, which may look like OCD, but unlike OCD, which is egodystonic, repetitive behaviours in AS are egosyntonic - as are the behaviours of people with AN; at least at the outset.

    If there is a relationship between AS and AN then one needs to question how and why this is so? There are a number of possible ways that the two conditions might relate; e.g.:

    1. AN may be a manifestation of AS, or having AS may somehow increase the risk of developing AN.

    2. People with AS may develop AN, as separate conditions, but through chance.

    It is known that people with AS are not all the same, just as people with AN are individuals in their own right, and so either 1 or 2 (above) may be at play in individuals who have both AN and AS.

    But children with AS are almost invariably bulled. Perhaps AN provides a means of enforced isolation when life is tough? Tony Attwood's clinical experience suggests that while boys with AS may be prone to aggression and 'acting out', girls with AS tend to be passive and therefore to remain unnoticed. And girls with AS can find puberty very, very difficult, for a variety of reasons.

  2. But I forgot to add, in terms of treatment... Here are my thoughts:

    If a person has AN and showed signs of AS before they developed AN (or they were diagnosed with AS before developing AN) - then of course the person needs to be re-fed, because starvation will only increase the symptoms of AS. However, it cannot be expected that the person with both AS and AN is going to find it easy to understand why their family is trying to save them - perhaps until they are recovered and much older. They may be much more rigid than the person with AN who doesn't have AS. And, if other family members also have AS, then the situation will be at least doubly difficult. There's unlikely to be much understanding on anyone's behalf.

    Personally, I think that the person with both AN and AS needs supplemental therapy that focuses on the more challenging aspects of their AS and self-understanding + self-acceptance; otherwise they may be more vulnerable to relapse.

  3. Does ToM reflect trait or state?

    Conclusion: "These findings indicate almost complete normalization of emotion recognition ability as well as the restoration of eToM in recovered patients, despite the observation of difficulties in both domains in currently ill patients. Findings suggest that similarities between AN and ASD in poor eToM are restricted to the currently ill AN state and such difficulties in AN may be a factor of starvation."

    An autism spectrum disorder may well complicate treatment, but calling AN "female Asperger's" doesn't clarify understanding of AN. (Asperger's is on the way out as a diagnosis anyway.)

    If most ToM and emotion recognition difficulties improve dramatically with recovery then it makes sense to focus on restoring health as quickly as possible at diagnosis. IMO it would be a mistake to assume that ToM difficulties in AN are permanent (and drawing parallels to ASD might suggest to many that they are) if the patient doesn't have a pre-existing ASD.

  4. But I will also add that I don't view the brain of someone with AS to be malfunctioning - or necessarily problematic. It's just different and has a better understanding of systems than people. Of course, that doesn't necessarily make life easy for people with AS because our world is socially constructed mainly by people who are neurotypical. People with AS can learn to understand themselves and others better, and most with AS want this. They want friends and to get along well with others, even if they are more introverted than most. Furthermore, most people with AS don't lack ToM, they more often have delayed ToM.

  5. @Anonymous:

    I think many clinicians would suggest that difficulties with eToM in starved individuals with AN usually reflects state rather than trait - and that only 15-20% of individuals with AN have a diagnosis of AS as based upon characteristics pre-AN.

    However, the study you cite is cross-sectional. It compares a sick and a recovered group. What is unknown is whether the recovered group showed difficulties with ToM when they were underweight, because this was not possible to measure in the study. Hopefully the researchers will be able to follow up the sick group longitudinally.

  6. I have some sympathy with your friend "The brain has only a certain number of ways it can malfunction, and ToM is one of them - many brain problems may present in the same way" if only because in our own specific case I don't think the family traits that made treating ED so hard (shared by most of us) were Aspergers. I don't, however, see that as an inevitable block towards developing understanding and treatment of this illness. Surely if different types of distress can present in the same way, they can be treated in the same way, NOT with a one size fits all mechanical response but by considering the individual needs of the patient in all cases.

  7. @Cathy
    Right, and I think those types of studies are underway. I don't think it makes sense to designate AN "female Asperger's" given the current state of knowledge though.

  8. My daughter has Asperger's and anorexia. Yes, she was bullied too on her competitive swim team and remembers it (has recurrent nightmares) incredibly clearly. Poor kid! She does have such a heart of gold too, she's truly a dear, kind young lady who would never ever hurt anyone in any way.

    I wish I had known the link between these two and then, hopefully, would have been more aware when the restricting of food began. I do fervently hope that parents of autistic children become aware of the link and that eating disorders are treated first with evidence based treatment so other families don't have to suffer like we are day by day during this refeeding/recovery. Keep going, Laura!

  9. Interesting. I am a former ED sufferer, and my problem has always been being too sensitive to and aware of other people's feelings and emotions.

  10. Anonymous above: a lot of women with Aspergers say they are hyper-aware of others' emotions, but may struggle to know how to respond to them. I certainly am. I feel distressed when I'm with emotional people but I cannot always make sense of my feelings and so I worry that I might not be doing the 'right thing' - because it's important to me that I do the 'right thing' and treat people compassionately.

  11. Somehow I missed this post...must have been gone when it appeared. I think the last 2 posts seem most like my daughter. Overly sensitive. Instead of being unable to take another person's point of view, I felt she over-read into the viewpoints of others. She often mis-interpreted intentions, but she did consider the viewpoints of others (often too much so)rather than just her own.


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