(Plus, how it is saying it.)
I’ve just finished reading a few pages on autism found within the book “Social” by Matthew Lieberman. The author is a leading researcher in the field of social neuroscience and the book is a sweeping overview of how our social brains work to make us the social creatures that we are. (Of course, the “our”, “us” and “we” here refer to neurotypicals, as they are necessarily assumed to constitute the entirety of the audience for any book that isn’t autism-specific – and sometimes even for books that are autism-specific, but I digress…)
It was simultaneously one of the best and worst things that I’ve read about autism from outside of the field of autism studies and the autism world more generally. It is written by a nonautistic neuroscientist who researches the social brain, but who doesn’t specialise in autism per se. He does, however, have a few things to say about autism and autistic people (or about people “fated” by autism as he so charmingly puts it) in his book.
The actual content of what he has to say about autism is pretty progressive (when compared to some of the more established theories out there), and I will get to this below. The author knows his stuff and does a great job of outlining and reconciling some of the messy data on a few different aspects of the autistic social brain (and on all social brains really), including issues surrounding amygdala functioning, the mirror neuron system, central coherence and plenty more. With some important caveats, which I will get into, the ideas within these few pages are well-worth looking over. They helped elucidate a few points for me and certainly stimulated my thinking.
But first, I want to address what was not so good about what was written, namely how the author wrote about and represented autism. Sadly, this is nothing out of the ordinary and will probably fail to shock just about everyone (after all, the author’s purpose is not to shock – he is simply recycling received ideas about autism). But therein lies the problem. Ableism vis-a-vis autism is rife, it is commonplace and it is taken for granted. So much so, that ableist attitudes are not uncommonly interpreted as signs of someone with lots of “sympathy” and “good intentions” who is simply doing their best to “help”. It often starts with and is most clearly reflected in language use. So here is a list of the not-so-riveting remarks concentrated within just a few pages of the book (warning: sarcasm alert for some of my commentary).
– The author calls autism a “profound disorder” – Apparently just having “disorder” isn’t enough, for autism – devastating as it is – we need to make sure we say profound.
– He calls autism “sad” – Twice. How very sad (*fighting back tears*)
– He calls autism “tragic”. How pitiful. A reflection of society’s pathological (not to mention highly repetitive) need to ostracise, shame and pity those perceived as different perhaps?
– When recounting his drug-induced “autistic-like” experience (see below) which made him appear odd, awkward, and antisocial, he includes the comment: “which, hopefully, is not how I come across the rest of the time” – His attitude is clear, and why think twice before stating it? We all know how awful any sort of social difference or deviance is. God forbid being autistic, what a complete embarrassment that would be. Who could possibly want to be autistic? He certainly doesn’t want it for himself, he’s clearly way too good for that. (Another issue: conflating autism with social avoidance).
– He refers to those who did not develop autistically, compared to those who did, as being “not so fated”. Nice. That’s actually one I haven’t heard before.
– And my personal favourite, he says “If empathy is the peak of the social mind, autism is sadly one of its low points”. Poor autists, so lowly. (But at least we tend not to go around systematically denigrating and shoving an entire group of people to the bottom of a metaphorical pile.)
So there we have it: yuk. I don’t know why I was so affected or annoyed by reading these remarks because, as I said, this sort of language and the attitudes that underpin it are all too common. I have noticed, though, that nonautism-specific books – those books that cover neuroscience or psychology more generally (i.e. focusing on the typical population by default) but which mention autism in passing – seem to contain some of the most pathologising attitudes and language, even if the science they are relating with regards to autism is actually fairly progressive. There are some notable exceptions, but I find that most autism-specific books are not so bad in this regard. This is probably because the people writing them realise that autistic people, their parents and those that work with them constitute the primary audience and probably don’t want to see themselves or their loved ones referred to in such dehumanising and troubling ways.
In these more general neuroscience and popular psychology books, however, where autism is only touched on in passing, it is as though the author could never possibly conceive that an autistic person – or someone close to one – might ever pick up their book. We are simply assumed to be “social aliens” (as one subheading in the book is titled), those situated on the outside of “real people” and their “real social world”. These neurotypical generalist neuroscientists are positioned outside the world of autism, and they are likely not engaging with autistic people in any meaningful way, or at all (outside of neuro-imaging studies).
I think this is why I find the pathologising language in these books so troubling. These authors form part of the vast majority of the population that are not part of the autism world (comprised of autistics, parents, allies and autism professionals), and so they reflect the attitudes that likely reside outside of the autism world. Although said autism world is a very divided place, and certainly home to plenty of deficit-y and often curebie negativity, it is – of course – also home to the most progressive and enlightening views about autism that there are (usually coming from autistics themselves). Sadly, these progressive views are still unlikely to be found anywhere outside of the autism world (just pick up a popular general overview on social neuroscience or psychology that mentions autism, and you will see), whilst the mainstream views of the autism world (autism-as-deficit-slash-tragedy-and-urgently-in-need-of-cure mentality) do percolate further out into the non-autism world. This could lead me into the importance of advocating more widely and not simply preaching to the choir, but that’s a digression. So, instead, onto the actual content of what “Social” has to say about autism…
Within these few pages, the author is mainly trying to shed light on the intriguing yet ever-complex and as-yet-unanswerable question of what autism essentially is. What lies at the core of autism? What is the primary mechanism at work, and what can be more rightfully thought of as secondary developmental consequences?
Mainstream theories and assumptions about autism centre around the primacy of a theory of mind (ToM) deficit. Lieberman unequivocally states that impaired theory of mind is a thing in autism, and that this supposed fact is not up for debate (stating, rather bluntly I might add, that “there is little debate among scientists over whether autism is associated with impaired theory of mind. It is”). Of course, this position could be subject to all kinds of critique (see, for example, Damian Milton’s “double empathy problem”). But in making this statement Lieberman is also betraying his lack of “interactional expertise” with the autistic community, and failing even to acknowledge that such a community exists – let alone that it could have its own theories and forms of knowledge in circulation. His statement that ToM deficits “appear to explain many of the difficulties autistics face in daily life” is especially revealing in this regard. I’m not sure that many autistic people would immediately identify a supposed ToM deficit as the major source of their difficulties. (It would more likely centre around things like sensory issues, anxiety, mind-body disconnects, or feeling misunderstood by others.)
Instead of troubling received wisdom about theory of mind and autism, the author hones in on the question of causality: is impaired ToM the cause or consequences of autism? This is undoubtedly an important and fascinating question, one that gets right to the heart of the question “What is autism?”. This is where things gets interesting, because Lieberman brings in the Intense World theory. I won’t go into the details of Intense World here, but suffice to say that the theory puts forward a promising set of arguments and findings that are a refreshing departure from the ubiquitous “social-first” accounts of autism. It foregrounds the actual internal experience of autism and, as Lieberman states, because of this very fact, it appears to be rather counter-intuitive (although perhaps only to NTs – intense world theory makes perfect intuitive sense to me as an autistic person and for many other autistics too). Unfortunately, despite some compelling empirical evidence, Intense World theory remains controversial and apparently there are few researchers willing to dedicate themselves to exploring it further. This is a shame given the relative acceptance it has within the autistic community (not to mention the fact that – in my view – it is the closest we have come to an accurate understanding of autism).
In his book, Lieberman includes a personal example to illustrate the core tenet of the intense world theory of autism. This revolves around the notion that an intense internal experience – one arising from chaotic sensory perceptions – results in the sort of social behaviours (namely avoidance and awkwardness) that are seen to be characteristic of autism.
The author recounts a bad drug trip, from his days as a college student, in which two things happen. First, from the outside, he states that he must have appeared very awkward, anti-social and disinterested in the social world around him (for example, he notes that he didn’t say much, distanced himself from others and avoided eye contact). Second, he details his internal experience, describing it as “one of the worst days of my life”. His senses became very intense, dialed up to eleven, and this changed how he perceived and responded to the social stimuli around him:
“That drug had heightened all my senses… It was all just too much for me to process, All the perceptions we have that are usually in the background were suddenly in the foreground and much too intense. An unmoving environment would have been distressing enough, but I was surrounded by people making noise and full of facial reactions, gestures and other sudden movements. All of it was very intense to me, surprisingly unpredictable, and frankly, terrifying.”
I was surprised and fascinated to read about his experience, because it is a rare thing for a neurotypical to be claiming some degree of first-hand insight into the experience of being autistic. Of course, we don’t know the extent to which his senses were heightened by the drug, nor how closely his experience might have approximated an autistic one. The author is right to emphasise that he in no way thinks or wants to imply that taking these drugs made him temporarily autistic. Nevertheless, there is a slight danger in even implying a link between a neurotypical’s bad drug trip and an actually autistic experience, even if there appear to be some superficial similarities in how each side is describing their experience. It is also slightly troubling to see such a negativistically framed experience (described as “one of the worst days of my life”) being equated with autistic experience. It is simply adding to the mass of information already out there which is spreading fears and myths about just how “awful” autism is.
Moreover, I also found it slightly depressing that the story of an NT having what is a possible approximation of an autistic-like experience can seemingly count for more – in terms of providing ideas and evidence for various theories about autism – than the experiences of actually autistic people themselves. Lieberman does include one “anecdotal” piece of evidence from an autistic person in the book. But these “anecdotes” shouldn’t be mere side considerations or supportive add-ons, they should be placed at the core of our theorising about autism. They should be where we start to form our theories and where we should keep returning to see how the science is or isn’t matching up to lived experience. Lieberman is presenting his neurotypical “autistic-like” experience as a form of supporting evidence for the Intense World theory. But why not refer to the masses of evidence coming from the actually autistic who could tell you the very same thing? Shouldn’t our voices count for more, or at least count at all?
Despite all of this, these few pages of the book do contain a lot of value in the way that they spotlight the often large disparity between internal sense-felt experiences and how this translates (or doesn’t) to the outside. It is encouraging us to think twice before making assumptions and judging a book by its cover – a well-worn cliché that applies to all, but perhaps especially where autistic people are concerned. Lieberman is forwarding the important notion that autism is characterised by hyper- as opposed to hypo- sensitivity to sensory, social and emotional stimuli. (Although, curiously, he also appears to contradict his entire argument in later stating that autistics are nevertheless “insensitive to the social world”. Perhaps this is only indicative of just how counter-intuitive all of this is for NTs… He just stated that appearances do not necessarily reflect internal experiences, and yet here he is falling into the trap he outlined only a couple of pages previously.) The author also highlights that internal experience and outward behaviour do usually connect to one another (a fact that behaviourism fails to consider or acknowledge), even if the connections appear counter-intuitive and back-to-front. Here is another pertinent quote along these lines:
“People could not have guessed my internal experience from my outward behaviour. My behaviour and experience were intimately connected, but in a non-obvious way. My outward behaviour was antisocial, but this is not because I was uninterested in the social world. Rather, I was overwhelmed by the social world. To put a fine point on it, I was overwhelmed by everything, but the social world was the most overwhelming part”.
Lieberman then returns to the issue of ToM, suggesting that living in an intense world promotes social avoidance which, in turn, causes a young autistic person to miss out on many of the typical social learning experiences that lead to the maturation of the ToM mechanism and neurotypical social behaviours. Hence, he forwards the view that sensory perceptual differences are primary to autism and that a developmental perspective is needed to explain the subsequent emergence of the social (as well as the repetitive) aspects. This is a very promising avenue (setting aside the assumption that autism must necessarily be associated with ToM deficits) and it certainly makes a lot more sense than the “social-first” accounts.
However, I think the author makes one important oversight in the above theory. He neglects to mention or account for the impact of intense sensory perception in the real-time, here-and-now of any given social interaction. In other words, it is not simply the potential developmental consequences of sensory issues for ToM – via the mediating factor of social avoidance – that we need to account for (for one thing, not all autistics are primarily socially avoidant, not even at a young age). Autistic sensory perception is going to shape social perception and response even if you’ve never skipped out on a social encounter your entire life.
This oversight is made clear when Lieberman notes that autistics miss out on seeing and hearing many social inputs. The reality, of course, is that we do see and hear social inputs – actually far too much – and that the main issue is that we process the input differently (because of its intensity). Thus, it is not simply a question of input, as Lieberman assumes (and as though if we simply had exposure to all the social inputs at a young age that NTs do then we would not continue to develop autistically). It is how the inputs are being processed that is at issue (something likely set in stone very early on, even prenatally), not merely the level of exposure to them.
This then leads us back to some potentially interesting conclusions about ToM. In fact, his bad drug trip illustrates the point I want to make quite nicely. The author is an NT with a presumably typical ToM. He did not become autistic or even “a little bit” autistic that day. Yet his senses were dialed up, he felt socially overwhelmed and was socially avoidant – all aspects characteristic of autism. And yet, despite all this, obviously his ToM had not changed. His sensory perception had changed, though. This suggests that having an impaired ToM is not necessary in order to experience social overwhelm and subsequent avoidance. Alternatively it could also point to the possibility that ToM can be subject to temporary suppression during overloading situations.
Perhaps this is what Lieberman was experiencing (a ToM that was present but which couldn’t be outwardly expressed or perhaps even internally accessed due to overload), and perhaps this is what is happening for autistics too. Autistic ToM likely does exist, but may well be functioning differently (e.g. perhaps in a delayed or overly conscious manner) and in a situation-dependent manner that is largely related to the intensity of perceptual inputs and the availability of processing bandwidth. In sum, then, sensory perception could well be impacting ToM outside of any intermediary developmental mechanism. Yet, as this book demonstrates, researchers still appear to be neglecting the importance of “sensory”, overlooking its likely very direct impact on social functioning, and instead relegating it to an indirect function (in this case mediated through early social avoidance). On the plus side, at least some researchers are now at least starting to acknowledge some role for sensory perception in autism, even if it is a rather indirect one.
Overall, despite some seriously questionable aspects – especially in terms of the language and underlying issues with representation, as well as the uncritical approach to ToM – the book “Social” points towards some interesting avenues that will hopefully represent future directions for autism research. I’m currently in the process of writing a book about autism and I explore the issue of causality between sensory and social aspects a lot there, among many other things, so keep an eye out for that if you’re interested in reading more.