Saturday, December 30, 2023

The Questionable Mindblind Theory of Autism

There was a cute social media post recently that asked kindergarten kids what gifts would be best for 30-year-olds. Of course there were lots of hearing aids and hip replacements in the mix. And it struck me that this could be a good exercise to gently raise awareness of our own stereotypes. Considering what give you would suggest for ___  type of person (slotting in an age, race, gender, ability, etc.), might be a way to flush out the tiny prejudices we might harbour about individuals that are part of a group. We always need reminders that we are each individuals despite all the group affiliations we have. This is especially true when we're talking about people with Autism Spectrum Disorder (ASD), who can be dramatically different from one another. This is a super long one with headings to help!

I was recently asked about talking with someone with ASD. The specific issue raised was someone who goes down a long tangent that seem irrelevant to the main topic. I live with that in myself and family members! From what I've experienced and seen, it can be like a compulsion to finish a lengthy train of thought since being interrupted can cause huge anxiety, like being stopped from touching a doorknob the requisite number of times. From the inside, if I have a thing to share, it blocks my brain from doing anything else until I can get it out, which is why I write so much. Once it's on the outside, I can see it and organize it. While it's nice to be read, for me being heard is secondary to being able to release it all. Sharing information on Covid and climate have taken over from prior posts on philosophy and psychology because of the urgency of those issues. But it's all less from a desire than a compulsion. Except what even is a compulsion but a desire to complete something. The difference is the uneasiness that comes when a compulsion is unfulfilled - a painful feeling that lingers until it's fulfilled - rather than just disappointment to not get to go on that ski trip or get that special something for Christmas. I wish I were as compelled to build a cabin up north; it would be done by now! Or do our compulsions just tell us what our real desires are? Maybe my desire for a cabin isn't a true desire; I don't really want it or I would be doing more to make it happen! 

Anyway, sometimes people on the spectrum go down tangents that don't seem relevant from what might be a compulsion, but sometimes the topic can be so interesting to them that the sharing is the important part. You can only know by asking them, each person, individually!  

More importantly, don't buy into stereotypes of what someone with ASD experiences. Two claims are making the rounds again despite studies to the contrary. It's hard to say what's right, but at minimum we can't promote studies on one side of an issue when studies countering it are at least as compelling. The annoying stereotypes I'm seeing these days: Autistic people don't know their own mind, and they have no empathy. 

FML. 

ASD and Gender Non-Conforming Overlap

There's a video that just showed up for me despite being from about a year ago, by Dr. Kanojia, a psychiatrist who I almost always agree with and learn from except when he talks about ASD issues, like in his interview with DesMephisto two years ago. In this more recent one he explains the very strong correlation between gender nonconformity and ASD as described in a new paper (from May 2022), which is a meta-analysis of prior studies. That seems to be fairly well established in the communities I hang out in. He goes further to try to figure out why this is the case, recognizing it could be an epigenetic phenomenon as certain genes are triggered by ASD or gender non-conforming that turn on the other one. But then he goes down the road I personally question: that people with ASD have difficulty mentalizing and understanding their internal environment. 

"When there's a behaviour, human beings have the capacity to know what's in the mind of the other person: -- e.g. someone gave me a birthday present, which means they care about me. . . . This is what leads to social difficulties because they're not really aware of what they're feeling or experiencing on the inside. . . . They look at social relationships like mathematical problems instead of empathically and being able to mentalize and understand it intrinsically. . . . Gender identity is internally determined, especially when we're talking about gender identity variance. . . . My sense of being a man is sort of determined somewhat internally. . . . If we have people who struggle to understand their internal state, it sort of makes sense they would struggle to understand what their gender identity is because a lot of that comes from the inside. This is important because it give us a clue that if you have ASD and you have gender identity variance, maybe what we need to do is insert some kind of mentalization training. If we can do that, we can help people figure out what their gender identity is."

He goes on to make the important point that if someone is being diagnosed for one, maybe look into the other as well. That part makes sense, but I question the rest. Dr. K. is a psychiatrist, and I'm just one person on the spectrum, but I also spent over 30 years teaching teenagers who are on the spectrum. I have anecdotal observations that line up with a different set of research studies. 

I wonder if mentalization training would help more than, say, being raised in a less discriminatory society with more accepting parents. A good follow-up study might explore the hypothesis:  People who struggle with gender non-conformity have fewer external supports in their lives and experience more vitriol around this expression. But first let's look at what that meta-study actually says and discuss the bolded portions below:

"47 studies that contained information on the overlap between ASD and GD/GI were included.  . . . However, we should note that despite the consistency of the findings, research in these populations is sparse. . . . The targeted population cannot be considered homogeneous, as it includes transgender people, nonbinary individuals, people formally diagnosed with GD, and people who do not conform to the societal expectations of their birth-assigned sex and may or may not present GD feelings. . . . The vast majority of information about the prevalence of ASD diagnoses in this population has been collected from patient files or it is obtained by self-reports. As such, essential information about the diagnosis itself is missing. . . . It is well established that both autistic and GD/GI individuals are at increased risk of mental health conditions and suicidal behavior. When ASD and GD/GI co-occur in a person, it is possible that the risk to mental health is multiplied. . . . It is still unclear whether the overlap between ASD and GD/GI reflects true co-occurrence. As Williams (2017, p. 274) noted, 'just because behaviorally-defined disorders A and B co-occur in a person does not mean that the underlying causes of those disorders are the same as the causes of A or B in isolation'. . . . Autistic people's difficulty to representing mental states has been proposed as one of the mechanisms that could explain the link between ASD and GD/GI. . . . . These links need further investigation."

The paper cautions a few times that there isn't enough information to draw any firm conclusions. The study also uses "GD/GI" together: Gender Dysphoria, which implies some distress around gender and Gender Incongruency, which does not. Dr. K. suggests these people need to understand themselves better to reduce the distress, but it's not clear how many of the people with ASD and gender variance people have distress around determining their gender identity. They might all know their identity, but the distress is around expressing it. The study states this problem explicitly, so it's curious that Dr. K. seemed primed to focus on that one line and make the assumption that the participants were struggling with gender identity. That paper also refers to this paper when discussing causation, which states: "There is no agreement on aetiological factors [what causes it] and on diagnosis and treatment of co-occurring GD and ASD."

What Else Could Cause the Overlap?

I completely agree there's a strong overlap in the ASD and 2SLBGTQIA+ communities. That's been well established in studies since at least 2010. But let's do a deep dive into, "autistic people's difficulty to representing mental states" being used to explain that connection. I think there's a very different reason for it. I looked at this correlation during Pride month, and quoted a study published in Nature in 2020 that concluded,

"Autistic individuals may conform less to societal norms compared to non-autistic individuals, which may partly explain why a greater number of autistic individuals identify outside the stereotypical gender binary."

And another study from 2021, co-authored by Simon Baron-Cohen, cautioned that their data showing a co-relation could be skewed because, 

"Autistic individuals may have been more candid about their experiences than others due to differences in communication style and/or lessened concerns about adherence to social norms."

From these two studies it appears it's not a lack of mentalization that's the problem, but quite the opposite. People on the spectrum do know themselves and present themselves more authentically with less disruption to their identity from the exposure to norms in society. For many people with ASD, what you see is straightforward and exceedingly honest. So why would anyone assume we don't know our internal mental state?

Furthermore, an interesting study from 2022 postulates that instead of lacking empathy, people with ASD have an "imbalance in empathy skills" compared to NTs, specifically, a difference in the ability to recognize what another person is thinking or feeling and the ability to respond to someone with an appropriate emotion in equal measure. Autistic people tend to be better at one or the others, while NTs tend to have a balance of the two for better or worse. 

"Many autistic individuals report feelings of excessive empathy, yet their experience is not reflected by most of the current literature. . . . empathic disequilibrium is related to autism diagnosis and traits, and thus may provide a more nuanced understanding of empathy and its link with autism." 

This one fits with my own experience. There are many times people have told me I don't feel strongly about someone's horrible experience despite being absolutely beside myself about it, because I don't demonstrate my feelings in a way that NTs can perceive as a "normal" reaction. They're reacting to my relatively flat affect and making assumptions about my internal reaction. This is a clear example of the case that the feeling of empathy is excessive compared to the demonstration of it. 

However, I've also see it as a failure to communicate between ND and NT people more than a deficit in empathy in ASD participants. From what I've seen in classes, others on the spectrum tend to recognize distress in someone on the spectrum and ask about it before an NT will notice anything is askew. Is it a lack of demonstration or a difference.  One study found that,

"Communication difficulties arise from a mismatch in neurotype, and thus information transfer between autistic people may be more successful than information transfer between an autistic and a non-autistic person. . . . These results challenge the diagnostic criterion that autistic people lack the skills to interact successfully. Rather, autistic people effectively share information with each other."

Furthermore, from another study:

"Many autistic people are motivated to have friends, relationships and close family bonds, despite the clinical characterisation of autism as a condition negatively affecting social interaction. . . . Participants identified that they often felt they were better understood by other autistic people."

When Dr. K. talks about a neurotypical (NT) person getting a birthday present and being able to infer that the person must care about them, from what I've seen, that ability to infer is present in kids with ASD, but it's far less certain. And that's not from a lack of ability or confidence, but a skepticism. I reject the premise that we can ever actually know a person's intentions without directly asking them. I've muddled through English lit classes well enough to infer that the most charitable interpretation of giving gifts is as a sign of caring, but I've also been alive long enough to know it's not always the case. Some people give gifts with ulterior motives; they might expect a return on their investment or a social reward for being kind to someone they actually despise. People can be nasty and two-faced, and their actions need to be taken in a much larger context. As a teenager, I hated doing character sketches of people from books that spanned short segments of their lives, not because I couldn't make inferences from what they said and did, but because it's too little time to assume I truly understood all their motivations. It always felt a little offensive to me to judge the fictional person based on so little information to "prove" that they're flighty or ambitious or stubborn. Just because someone's ambitious in this scenario, doesn't mean that's how they are forever. I was all too aware that we are in flux, ever changing, and the product of so many different events and ideas that it's impossible to pin us to a board to describe us with any authenticity or veracity. It's offensive to make judgments on anyone from such scant evidence. We each contain multitudes! 

These inferences, or assumptions, are made regularly, all willy-nilly, by most NT people, and it can make interactions smoother and faster, but it's also all potentially based on an illusion of the other person. This might be fine for most people, but it's flippin' annoying to some of us NDs when precision is a higher value. So we might be suspicious of the intention around the gift, or we might ask and hope for an honest answer, yet also question any answer provided, recognizing that we can't actually know. That can make for difficult relationships, and it's definitely less complicated to just assume people love us until proven otherwise and later find out we were the butt of a joke. I wouldn't be surprised if part of this is because people on the spectrum are more often bullied. There's a survival element to rejecting these kinds of seemingly obvious inferences. 

So, there are many possible causes for an overlap between ASD and gender non-conforming besides mindblindness, which means training in mentalization might be a waste of time for all involved. I'd like further studies to separate out the bullied from the accepted, the struggling from those relishing their identity, and look at willingness to conform as a possibility and get someone on the spectrum in the research team to be the one to talk to others on the spectrum before we go all in on the suggestion that they both lack internal awareness. This idea that people on the spectrum don't know themselves came largely from one dubious study that has been referred to and used to backed up many other studies in a chain that needs to be scrutinized. 

Theory of Mind and Testing for Mindblindness

Theory of Mind (ToM) has come to be the name for the series of stages (from Piaget) in which kids develop an awareness that other people know and think differently than themselves as they grasp other people's differing perspectives, which enables them to understand their intentions. It typically starts in young toddlers when they differentiate themselves from their primary caregiver and might realize that mum likes different foods than they do, a stage that happens at a younger age in more individualistic cultures. It takes longer to recognize varying beliefs and knowledge, like that mum doesn't know what happened to you at daycare. This is clear in children who expect they can't be seen by others when they cover their eyes. But it's often still in development in adolescence as teens become better able to attribute different mental states to others. And I'm sure we've all seen problems from a false consensus effect in adults. 

The fact that the false consensus effect is a pervasive cognitive bias indicates that many of us continue to struggle with some complex ToM questions, believing that pretty much everyone thinks what we think on certain issues. I've mainly seen this in arguments around beliefs in God (you must believe to some degree...) and around child-free adults (you really want kids and just don't know it yet). I've also been dumbfounded by people who insist that a particular colour scheme is the right colours for a room: a neighbour told me to paint my walls eggshell white after I just finished painting them dark blue, as if my taste is wrong. They can't believe that I actually like the way I've painted my walls, and if I'd only try it their way, then I'd see! 

Just FYI, despite being ND, I would never, in a million years, walk into someone's newly decorate house to tell them which colours would look better on the walls because I so clearly understand that other people like a whole lot of beige, and that's okay. Some NTs are rude af. 

The study that set people down this "ASD are mindblind" path was conducted in 1985 by Simon Baron-Cohen (Borat's cousin) who is well known in the field. He used a Theory of Mind test for children involving a false belief test. Kids watch a puppet show featuring Sally and Anne: "Sally puts a marble into a basket and then leaves. Anne takes the marble out of the basket and places it inside a box. When Sally returns, the clinician asks the child where Sally will look for the marble." By age four, most kids will be able to hold in their heads that the marble is actually in the box and that Sally will still think it's in the basket and look there. But one study found that ASD kids at age 11 still think she'll look in the box because that's where it is - as if she had knowledge of what happened when she was gone. The conclusion drawn by the study is that they are still operating at Piaget's preoperational egocentrism stage in which they can only perceive their own perspective and have no awareness of different perspectives. He compared 20 kids with ASD, 14 with Down's Syndrome, and 27 NT kids. He thinks what makes ASD kids different is in the realm of "knowing that other people know, want, feel, or believe things" separately from themselves, aka second-order representations. (He also noticed ASD kids don't pretend play as much as NT kids which is a conversation for another day involving Mark Solms work.) If they don't show evidence of employing a theory of mind, then they could have a deficiency in second-order representations. 

And, boy, does this study have sticking power!! 

It might sound convincing, but it's just one study from almost 40 years ago that found 16 of 20 ASD kids with low IQs (mean of 82) picked the basket instead of the box. The study was scrutinized in 2012

"It is possible that despite having the capacity to represent another person's mental state, children fail the standard false belief test because of a weaker cognitive control or difficulty in pragmatic understanding. Secondly, individuals with ASD with higher verbal skills do pass the standard false belief test." 

That analysis went on to explain that people with ASD do have difficulties in understanding non-literal utterances or infer mental states from photographs of eyes, but those are typical ASD traits, not ToM traits. They also used eye-tracking in adults with ASD, and found they look at different things than NT, and then concluded they have no ability to make inferences! The study showed a video of a person about to go to a cupboard, and found NTs demonstrate a lot of anticipatory looking at the cupboard, while ASD don't, and concluded that they "do not spontaneously anticipate others' actions in a nonverbal task". 

Seriously, WTF?? I often don't look to things as I'm thinking about them. I listen for them. When people are talking to me, I look down to hear and think, and they sometimes think I'm not listening, and I have to convince them that this is how I listen!! If people could just understand all these things a bit better, i.e. if NTs could better recognize the different perceptions of people with ASD, by maybe ask them instead of making random assumptions born by minimal evidence, then life would be so much easier. 

Another study found that if people close their eyes and let their mind wander for five minutes, NTs think about other people a bit more than people on the spectrum. This is also considered proof that autistic people don't understand that other people have a different perspective than they do. Maybe I'm missing something huge here, but I really don't understand how measuring how often people come to mind when relaxing is used as a measurement of Theory of Mind. That conclusion seems like quite a stretch to me.

People on the spectrum can understand that others have different beliefs, thoughts, and feelings even though they can't always identify the emotion other people are currently feeling from just seeing their eyes and even though they look at objects as much as people! We need to be very clear what ToM is when testing for it. Several studies appear to be concluding that ToM causes ASD when they've really just conflated the two conditions. 

In a study on adults in 2020, the test of Theory of Mind used (ToMI:SR-Adult) appears to be a test of ASD specifically, and not a test of ToM. After taking a course in assessment, and looking at the very questionable ASD assessments in particular (see my own AQ-27 ASD test here based more clearly on the DSM criteria), I think it's vital that we take a closer look at the tools used to assess various conditions. This adult ToM test mainly asks questions around the ability to perceive metaphors, idioms, and time passing, and to recognize facial expressions and tone in other people. Out of 60 questions, only 17 seemed even remotely related to Theory of Mind categories, i.e. understanding that people's behaviour is a function of their internal subjective mental states that can be different from our own. Most of the questions would definitely pick up traits from ASD people who are more literal or who can't read people well, and several were geared towards assessing empathy even though one is not a measure of the other: "empathy concerns our ability to share affective states with others; on the other hand, Theory of Mind represents our ability to interpret their mental states, their intentions and beliefs."

A good ToM assessment would need more scenarios between Sally and Anne. "Will Sally look in the box or basket for the marble that she left in the basket but Anne moved to the box?" does a good job of assessing understanding of false belief for children, but I'm not sure how many adults would have a problem with that one. Maybe we need more complex questions around Sally and Anne arguing over the best way to decorate a room, or the nature of God, about their respective childhoods, and about how they feel about one another! Just going through the list to consider what questions would be necessary to test theory of mind raises so mainly examples of NT people in my life who, in my perceptions, very over-confidently believe they know exactly what I think or feel in a situation. I'm often stunned by NT people's insistence that they know me better than I know myself. It can't be that uncommon because it's pretty recent that psychotherapy, as a field, has decided that the client is the expert on themselves, not the therapist. Therapists now are trained not to use their own experiences to relate to clients, but instead to ask clients more questions to better understand their line of reasoning that led to whatever behaviour they hope to change.

Claims of Mindblindness are Questionable and Harmful

A study in 2019 by Gernsbacher and Yergeau questions this entire path. Here's the abstract in full because it's so vindicating! 

"The claim that autistic people lack a theory of mind—that they fail to understand that other people have a mind or that they themselves have a mind—pervades psychology. This article (a) reviews empirical evidence that fails to support the claim that autistic people are uniquely impaired, much less that all autistic people are universally impaired, on theory-of-mind tasks; (b) highlights original findings that have failed to replicate; (c) documents multiple instances in which the various theory-of-mind tasks fail to relate to each other and fail to account for autistic traits, social interaction, and empathy; (c) summarizes a large body of data, collected by researchers working outside the theory-of-mind rubric, that fails to support assertions made by researchers working inside the theory-of-mind rubric; and (d) concludes that the claim that autistic people lack a theory of mind is empirically questionable and societally harmful."

Specifically, they found that many other groups of people fail the False Belief task including NT kids who are low SES or have fewer siblings. Furthermore, many ASD kids and adults pass theory-of-mind tasks to the extent that many argue 'mindblindness' cannot be considered a characteristic of autism, much less a cause. Some have found that language comprehension was a greater factor in failing the test than ASD. For instance, with the marble scenario, some kids thought they were being asked where the marble is, not where Sally thinks it is: "complex language comprehension can be the task's 'only' predictor, and vocabulary can account for more than 3/4 of the variance."

Anecdotally, I've taught many kids on the spectrum, and they all appear to understand that other people have different thoughts and beliefs that motivate them differently. That's never the crux of any problems in the classroom. The issues are more typically the frustration with the inane reasoning of the NT kids. "I get why he thinks that, but he's wrong, and here are the piles and piles of evidence to demonstrate that reality!" Many love a puzzle and seek out exactly where someone has made an error, and might be surprised when others don't thank them for their efforts! Often it's a matter of precision, and, on a few occasions, I've had to slide between a student and EA to resolve an escalating argument because the EA has made an error in something they believe is superfluous to the conversation, but it's a sticking point for the ASD student, like continuing to say "get out your pen" when the student prefers to write in pencil.  

Some NT people get really upset when you ask them to be precise and actually say what they mean!! 

I've also known many men who are weirdly surprised that the new woman they're dating has different likes and dislikes than the last woman they dated and might be very different than a stereotypical version of women, leading them to implore exasperatedly, What do women want???, but that's a whole other conversation! The inferring that's seen as the mark of ToM is often so horribly in error, yet it's still seen as preferable than just asking people specific questions about themselves, which is seen as weird. So curious!

If anything, kids on the spectrum - at the very least those slated in level 1 - can clearly perceive and understand all the possible perspectives, but some just don't accept that it's possible to truly know which one another person would choose without overtly asking them. They don't want to assume an understanding that isn't certain and precise. 

It's just so tiring to be told that being in the minority means lacking qualities expected of human beings. We're always measuring to a standard, but the standard doesn't have to so narrowly focus on what the majority does. Want to reduce suicidality in this population? Get NTs to learn more about different ways to communicate and interact so that they stop treating autistic people like garbage, and work on stopping discrimination to anyone gender non-conforming. 


2 comments:

Ann Mark said...

As a NT with a ND adult child, I found this very informative. My 30 years as a teacher took me from having zero students with an ASD diagnosis (keep in mind that it was 1984) to a classroom with several, each term. But this is the first I’ve seen of there being a crossover with gender identity. I did observe, contrary to these new studies, that most (90%) of my ASD students were male, and though awkward around the opposite gender, very certain of their own. I will have to read more to see if those observations were informed by my own prejudices.

I’m stealing the poster from the end of the blog. It’s gold!

Marie Snyder said...

OMG, you actually read my blog!! And this was a crazy-long one! I noticed a lot more males as well but I think that's because girls hide it better. Teachers were stunned that my youngest has autism. In outdoor ed, one teacher told them to bring bus money and I sent her with a $10 bill thinking it was a school bus. Then he left them to take a city bus home from the edge of the city, which she could not do AT ALL, so she called her dad to get her. Then the teacher openly made fun of her for it in class. He never thought to check her IEP to see she's got ASD! She hides it well until she doesn't. I got away with being "that quiet girl" for decades.