This week I have been pondering Theory of Mind. And I started reading research papers and it got interesting. What I found was news to me, so I thought it may well be news to you, too!
If you want to skip to the interesting bit, you can find a great paper which brings together, and of course references, a variety of studies into the area
here. My comments are rather simplistic and not particularly well-formed or concise so I would recommend reading it if you are interested (It's only 9 pages and you can just read the intro and discussion if you like!). Or a Google search for "theory of mind high functioning" or similar will yield all the lovely papers and articles I devoured before writing this!
Scroll down for my thoughts on the research or start here for the whole story of my exploration.
So if you know anything much about autism you will have heard that people with autism have impairments in Theory of Mind (ToM). This means that they have trouble attributing mental states (beliefs, intentions, desires, emotions, knowledge etc.) to others and predicting others' actions based on their mental state.
If you've been taught ToM in an autism awareness context you will undoubtedly be familiar with the "Sally-Anne test" shown here. A child who has mastered ToM answers that Sally will look in her basket for the marble, because the child understands that this is where Sally thinks it is (she was not in the room when Anne moved it). The autistic child or child who has not mastered ToM answers that Sally looks in the the box, because the child knows that the marble is in the box and does not recognise the significance of Sally's exit from the room and its implication for her knowledge.
Impairment of ToM brings difficulties in realising that other people's thoughts, knowledge and experiences are different from one's own. This can clearly contribute to the social and communication challenges experienced in autism and the false assumption that people with autism lack empathy.
Now this is all fine and logical, and quite applicable to primary-school aged children. It is expected that a typically developing child would pass the Sally-Anne test aged 4, and therefore the children that I work with in EYFS/KS1 would be unlikely to have acquired these ToM skills, as would their counterparts in mainstream inclusion. So as far as my training goes, nothing is awry.
What was irking me was that this is all I have ever been told about Theory of Mind.
As an autistic adult, I was a touch bemused. I have always assumed that I have no problems with Theory of Mind because this seems so easy to me. Should I not be passing this test? If people with autism have no Theory of Mind or empathy (I discussed empathy a little
quite a while ago) do I really qualify for diagnosis? But surely no psychologist is going to pass out diagnosis without being pretty sure it is at least largely accurate - they certainly would not miss such an obvious loophole.
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| Strange Story example |
I researched a little further and discovered that because the Sally-Anne test is only measuring whether a person has ToM development equivalent to that of a typically developing four-year-old (so even if you pass it, that only ascertains you have 4-year-old level ToM!), more complex tests have since been developed. The second-order ToM test "Strange Stories" is designed to test children and adolescents in understanding of pretence, joke, white lie, misunderstanding, double bluff etc. Again, these present few problems to me. Confusion still stands.
Although I have been diagnosed for over five years and worked in the field for three, I am still learning about myself, autism and how the two play together. Every now and then a situation plants a seed of questioning in the old Brian. Over time I have begun to notice that perhaps I do display some issues related to Theory of Mind.
Logically I can answer every ToM question thrown at me. I absolutely appreciate that everybody experiences the world and each situation or interaction in their own way and that we all have a different point of view shaped by our history, opinions and sensory experience. I think I'm relatively all right at identifying people's feelings even if I don't know how to respond to them, I generally get idioms, sarcasm and humour (though I do slip up and take things literally sometimes) and I definitely understand logic problems such as the Sally-Anne test.
But actually, I do show some weaknesses in attributing mental states to others and inferring the necessary social information from this. Sometimes I only realise minutes or hours after a conversation what somebody actually meant, apparently I sometimes misinterpret emotions and intentions in film and TV and I can find it hard to work out who knows what or understand storylines. I do find it difficult to genuinely compute that people don't know the things I know or see the things I see. I send somebody an article with a disclaimer that it's all basic stuff that we already know, forgetting that they may not be familiar with the information. I assume that from a single blink of my eyes it is inescapably clear that my mind is boggling with shock or surprise or by the pressing together of two of my fingers that I am under immense stress. In fact, I assume that because somebody knows that facts of my situation they automatically know how I am feeling, because surely that's just logic?! And the problem is that if they don't respond to my "obvious" feelings or my "clear" signal I assume that my problem has been seen and rejected and is therefore invalid. So I stop seeking to communicate or get my needs met. All of these issues can lead to or compound the social and communication problems experienced in autism.
The circumstance that sparked my Theory of Mind ponderings this time round was a task in a research study about understanding conversation. I have since discovered that it is the "faux-pas test" and it involves a series of scenarios of an interaction either including awkwardness or not. The participant is then asked whether anything awkward was said, who said it and why it was awkward. Responses are time-limited. Sounds pretty straightforward? I thought so too, and mostly it was. What got me was the time limit: I was surprised by the number of times I clicked "no", thinking there was nothing awkward, and then realised that there had been. This ties in with what I later researched on Theory of Mind in adults with Asperger's or highly-functioning autism.
It turns out that my path is well-trodden by autism researchers.
Spek, Scholte and Van Berckelaer-Onnes conducted the research paper that I found most enlightening as it brings together many of the earlier investigations (but see also Pedreno et al. 2017, which I only read afterwards!).
While most children
with HFA or Asperger syndrome are impaired in first and/
or second order theory of mind functioning, most adults
with HFA or Asperger syndrome show no impairment
(Baron-Cohen 2000; Bowler 1992; Happe´ 1994; Ozonoff et al. 1991a). This does not imply, however, that they are
able to function adequately in social situations, since in
daily life social information is more subtle and difficult to
interpret (Ozonoff et al. 1991b). Therefore, ‘advanced
theory of mind’ has been proposed as a more difficult level
in theory of mind functioning compared to the first and the
second level. Advanced theory of mind involves interpreting complex social situations, based on subtle
information.
Spek, Scholte & Berckelaer-Onnes 2009 (emphasis added)
These researchers studied groups with high functioning autism (HFA) and Asperger's Syndrome (AS) and a neurotypical group on the Strange Stories test, Faux-Pas test and 'Reading the Mind in the Eyes' test (Eyes test) as well as completing the Emotional Quotient (EQ) self-reporting questionnaire regarding empathising tendenices (which overlap considerably with ToM).
The HFA and Asperger syndrome groups
were impaired in performance of the Strange stories test
and the Faux-pas test and reported more theory of mind
problems than the neurotypical adults. The three groups did
not differ in performance of the Eyes test. Furthermore,
correlations between the Eyes test and the three other
theory of mind tests were low or absent. Therefore one can
question the ability of the Eyes test to measure theory of
mind. Of all theory of mind tests used, the self-report
questionnaire had the largest discriminating power in differentiating the two disorder groups from the neurotypical
group.
Ibid.
When examined in more detail, the paper confirmed all the thoughts I had been working on. "A considerable proportion of the participants with HFA and
Asperger syndrome performed faultlessly" on the Strange Stories test, which echoed my experience and is noted as being unsurprising since the expected age of passing the test in typically developing children is six. Those tests developed to explore more advanced ToM displayed even more statistically significant impairment in the autistic groups. Many in the neurotypical group also did not perform faultlessly on the Faux-Pas test, perhaps denoting that it measures quite advanced ToM skills. The EQ found large differences between the ASC groups and the non-ASC group, lending weight to its validity in diagnosis as well as highlighting the level of self-awareness in 'highly-functioning' autistic people that has sometimes been overlooked.
As a side note, no difference was found between the "HFA" and "AS" groups. This is now widely accepted and although both labels are still used the two are considered one by most professionals, Asperger's having been removed from the DSM V. Even in 2009 this supported findings of previous studies questioning the validity of diferentiation between the conditions (Volkmar & Klin 2005).
So, after all that, what I have discovered is that there is a whole lot more to Theory of Mind than I had appreciated. Although I have learnt very well from observation and trial and error and have developed a pretty good Theory of Mind that passes in most situations, this doesn't mean that I don't have difficulties in this area. For the life of me I now can't find where, but in one article I read that
delay as well as impairment is common in ToM with autism, which sheds light on the way I often realise what has happened only after a situation has moved on. I found it fascinating to explore the path of research as academics discovered more and more about what it looks like in differently-presenting autistic people (and me!) and the implications of this in diagnosis and support. I'm sure there is plenty left to uncover, too!
Some further reading (or just Google!):
Tony Attwood website section on advanced ToM:
http://www.tonyattwood.com.au/index.php?option=com_content&view=category&id=144&Ite.
S. Baron-Cohen et al.: Another Advanced Test of Theory of Mind: Evidence from Very High Functioning Adults With Autism or Asperger Syndrome (1997).
http://docs.autismresearchcentre.com/papers/1997_BCetal_Anotheradvancedtest.pdf
S. Baron-Cohen: Theories of the Autistic Mind (2008).
https://thepsychologist.bps.org.uk/volume-21/edition-2/theories-autistic-mind
D. Mathersul et al.: Understanding advanced theory of mind and empathy in high-functioning adults with autism spectrum disorder (2013).
https://www.tandfonline.com/doi/full/10.1080/13803395.2013.809700?scroll=top&needAccess=true
Sadly I only had access to the abstract of this, but it looked interesting! If you have journal subscriptions you may have better luck!
C. Pedreno et al.: Exploring the Components of Advanced Theory of Mind in Autism Spectrum Disorder (2017).
https://www.researchgate.net/publication/317017028_Exploring_the_Components_of_Advanced_Theory_of_Mind_in_Autism_Spectrum_Disorder
I only read this one after I wrote the post, but also very interesting.
A. A. Spek et al.: Theory of Mind in Adults with HFA and Asperger Syndrome (2009).
https://pdfs.semanticscholar.org/068c/db96e5db4cf31e00cbc6ce2c0e1eb88c6e79.pdf
Recently it was suggested that I may find it beneficial to have some kind of advocate or support person to help me in certain situations such as medical appointments. I took this as very caring overdramatisation (definitely a word, if you were wondering), along with many of the other things that were said at that time. People who care about me and want the best for me but take things a bit too far.
You see, I have autism and a mental health condition, but I am highly functioning. I am fiercely independent and a perfectionist. I have always been a high achiever; someone who doesn't need help. This now means in my head that I don't deserve help, I am not eligible for help and that I am being greedy, wasting people's time and resources and being attention-seeking if I accept (or, perish the though, ask for) help. And if I tried asking once and was rejected, then no chance! And anyway, I've had loads of help for my mental health and my workplace go above and beyond to support me and let me perform to my potential.
But half an hour later I found myself in tears. I realised my colleagues were absolutely right. She hadn't asked any of the right questions, and because of that I hadn't given her the right information. I didn't know how to tell her, or correct her mistakes, or question her conclusions. I didn't even process that she had got it so wrong until after that. When the people that know me - Mr Peggy, work Peggies, CMHT Peggies, urgent care practitioner Peggies and even mental health charity Peggies - are all concerned, that should make me question the judgment of one GP who gives a different opinion. I let her tell me it was all fine. That's what my sick brain wanted to hear anyway - it will have a field day with that. But there's a part of me somewhere that wants to be well, and if it saw this happening to someone else it would shout, and shout loudly.
