- What is this book?
- Why am I writing this review?
- Issues with language
- Other questionable things
- Good things
What is this book?
This book was written by two academics in the field of psychology who specialise in researching autism. One of them – Francesca Happe – is one of the most prominent autism researchers around. She wrote the first edition of this book back in 1994. This is the revised second edition and was released earlier this year. As there is an almost 25 year gap between the two editions and things in the autism world have evolved so much, we might expect there to be quite a difference between each book, and I’m sure this is the case (I haven’t read the first edition, but have a good idea of the sort of thing it might contain).
The book aims to be a comprehensive overview of autism research from a psychological perspective. Thus, whilst it certainly discusses genetics, biology and neuroscience, it is focused primarily on cognitive theories of autism. An unusual – and very positive and progressive – aspect of the book is that it explicitly and repeatedly highlights the value of autistic voices in autism research (and the autism field more generally) and includes commentary from autistic adults at the end of each chapter. The majority of discussion within the book is also in line with the neurodiversity paradigm/movement and an autistic rights framework – or at the very least the authors do a good job of highlighting the fact that there are multiple and often conflicting perspectives that we ought to be aware of (i.e. that autistic voices are challenging conventional wisdom and could do with being listened to). For these reasons, the book represents a significant step forward in the world of non-autistic authored accounts of autism/autism research.
Why am I writing this book review?
So why am I writing this review? I’ll have to admit that I find it easier and often more motivating to write reviews about very negative, ableist books which have lots of things which, to me, are obviously very wrong with them. I feel an urgency to call these out and, after all, it is often easier to explain what is wrong with something than to explain why something is so good. And yet, it is important to highlight and praise discussions about autism which are accurate, critical and progressive, especially when it is so clear that authors have made a concerted effort in this regard. So I want to discuss some of the reasons why this is a good book – the book deserves it.
HOWEVER! In my view, this book is also not perfect. There are a few niggles here and there, a few things that I felt were a bit off. Some of these are more obvious than others. The fact the book is overall progressive and yet contains a few “faux pas” is perhaps indicative of the fact that the authors are not autistic (although a couple of “faux pas” did come from autistic contributors!) and, to some extent, are straddling the mainstream/traditional camp and the more marginal/progressive camp (especially in the case of the more well-known researcher who can be very much placed within the traditional camp – she helped build it after all). So, I read the book with a very critical eye, and here are my thoughts…
Issues with language
One issue I had was that the authors pay plenty of lip-service to autistic perspectives on the language used to describe autism (i.e. use neutral, progressive and not pathologising terms), and yet on occasions I feel they fall short of fully honouring it. I don’t want to over-emphasise this, however, because this book is still a far cry from the ableist descriptors that litter most autism research literature. To a large extent, the book does reflect and uphold autistic majority community preferences. But there are some places it doesn’t, and this strikes me as a bit contradictory and ultimately means the book is not as brave as it could have been.
Early on, the authors state that “we have… minimised any use of medical and deficit-focused terminology” (p.iii). My response is that this is great, but why not completely eradicate it? If the authors agree that this is the right thing to do, then why not embrace it fully? Why the half-measure? To be fair, the use of deficit-based language is fairly minimal, but this just makes instances where it does appear even more striking. If the authors are sympathetic to autistic perspectives on how we should and should not talk about autism (which they claim to be), then there should be no reason whatsoever to use negative and damaging terminology.
The authors give a couple of reasons for why they use instances of medicalised language or language which is not otherwise accepted by the majority of the autistic community (such as person-first language). All are fairly poor excuses in my view. These reasons range from wanting to use language that is line with the mainstream literature (see below), to wanting to respect minority views within the autistic community (for a critique of this latter argument, see my post on autism and language).
Here is a specific example of one line of reasoning the authors give:
The authors do a great job of outlining problems with using the term “RRBIs” (an acronym for “restricted, repetitive behaviours and interests”) and acknowledge the fact the term is unpopular in the autistic community. But then they proceed to say: “Despite these considerations, we will use the term RRBI in this book to enable correspondence between our discussion and the wider psychological and clinical literature” (p.74)
Here is why I think this sort of reasoning and excusing is problematic:
Essentially, I would argue that change needs to start somewhere, especially as it is already long over-due. How will usage of negative language and underlying attitudes ever change if even the supposedly progressive people can’t resist using it? If people who have this sort of awareness around language and who – in theory – appear to side with progressive perspectives and terminology cannot make the shift, then frankly we have little to no chance of convincing the rest of the autism research establishment.
If the authors are so concerned with matching what is common practice then they should be using a whole bunch of other ableist terms like disorder, dysfunction, even disease (which they haven’t). So their reasoning for employing the term “RRBIs” is not really intellectually consistent.
The very same rationale is also at work in the authors’ decision to use the phrase “primary deficit model” in relation to autism. They choose to use pathology paradigm language such as this despite claiming, quite progressively, not to agree with it. Their reason for doing so is so as not to “whitewash… historical fact” (p.84).
Progress by definition relies on breaking with (non-progressive) norms. We do not really need nor want to be reminded of what has gone on in the past. We can and should discuss and critique ableist language but we should avoid using it in our texts outside of such discussion. We need to progress beyond this language eventually, so why not start now?
The authors rationale for opting to use a mix of identity-first language (ifl) and person-first language (pfl) is similarly problematic in my view. They, again, do a nice job of explaining why ifl is progressive and that the majority of autistic people prefer it. And yet, they choose to include plenty of pfl within their text: “We have included some person-first language although we know this will not be the preference of many autistic people” (p.iii). According to the authors their rationale for doing so is as follows:
- They want to represent minority preferences within the autistic community (i.e. the fact some autistics prefer pfl or are otherwise ambivalent about the whole issue). Again, see this other post for my views on this.
- They want to honour the historical debate, specifically the fact that pfl originally came out of the early disability rights movement (p.iii). Well, a) this isn’t exactly true, and b) surely it is more important to honour a current debate and context (as the book’s subtitle reflects) than it is a historical one? The fact pfl may not have initially emerged as an NT-imposed norm/preference, doesn’t change the fact that it has certainly evolved in this direction.
The authors apologise to readers of the future if this seems “retrograde” (p.iv). Honestly, it seems pretty retrograde now, especially in the context of a book which is overall progressive and given the fact the authors are obviously aware they’re going against a majority preference. Which is worse? Potentially offending the majority? Or potentially offending the minority (especially when many in that minority have no preference and are overall more likely to have less strong opinions on language than those in the ifl camp)?
Here are some other random issues which caught my attention with regards to language use:
– Use of “condition” (and quite frequently) – Obviously this is far preferable to “disorder”, but there’s no denying it is still a very medicalised term. We don’t call non-autism a condition, so why should we call autism a condition? Presuming we want to do away with the pathology paradigm/medical model of autism – which the authors seem to be in favour of – we should aim to avoid such terminology.
– Use of “syndrome” – Another very medicalised and deficit-based term.
– Use of “disruptions” (in relation to autistic development and processing) (p.5, p.38, p.103) – This is suggestive of something wrong and negative.
– Use of “disorder” (p.8) — The authors ascertain the truth about autism being a “biologically-based disorder”. The biological bit is true, not so much the disorder bit. However, further down the same page (and elsewhere in the book), the authors do say that it is better to use “difference” or “condition” than “disorder”. This is great, but does seem at dissonance with their use of “disorder” further up this same page.
– Use of “culprit” (in reference to potential causes of autism) (p.22) – Personally, I’ve never seen “culprit” being used in anything other than a negative context.
– Describing autism as a “learning difficulty” outside the context of intellectual or learning disability. I think that “learning difference” is probably more apt given that with the right environment for learning there is nothing about autism (in the absence of ID or learning disability) that can be said to constitute a barrier to learning. (p.23)
– Use of “symptoms” (p.38, p.76)
– Use of “treatments for autism” (p.40) – You treat co-occurring issues like anxiety or depression, you don’t treat autism.
– “Ameliorate” is used in relation to autistic developmental outcomes (p.53)
– Use of: “communication impairment”, “social impairment”, “is something ‘switched off’ in autism?”, “meta-representation and pretend play: missing?” (p.82)
– “If this holds, we could argue that problems in the social brain are based on disruptions to the specific type of processing required to capture the social world” (132) – Use of “problems” and “disruptions” in this sentence.
– “Meanwhile, autistic people are burdened with an unfiltered representation…” (p. 98) – This is very true, except that it is not a “burden”, and disrespectful to characterise our entire perceptual/representation system as such. It is simply a difference, one that is very often challenging, but also the source of great pleasure, and always heavily dependent on context.
– Describing autism as a “fascinating way of being” (p.iii) – Framing autism as “fascinating” (also as “mysterious” and “enigmatic”) is a very common trope. It feels a little othering and I’m not sure how useful it is.
– Use of alien trope imagery (p.101)
– The authors choose to include this rather awful quote from Green et al. which they appear not to see any issue with : “Crucially the authors [Green et al.] emphasise “a strategy to mitigate developmental risks and modify prodromal symptom trajectories, rather than “eliminate” a condition””. – So I agree we certainly don’t want to eliminate autism, but nor do we want to be engaging in any of the things this quote seems to be arguing for – no “strategy” for “mitigating”, there are no “risks”, no “modifying” of “symptom trajectories”.
– “As non-disabled peers start to become more independent, parents and siblings can feel the stressful impact of having an autistic family member more acutely” (p.114) – Please do not cast autistic people as inherently stress-inducing. If we are causing stress for others it is because we are stressed, our needs are not being met (and most likely by the non-autistics around us). It is not for no reason. (This statement is also a bit ironic when, a few sentences down, the authors mention possible links between feeling like a burden and suicidality. This is precisely why we need to stop thinking or saying these things).
– The authors state that puberty may bring increased violence in autistic people (p.114) – I am not sure how appropriate this is to mention (especially in a context where the violence done by others to us far outweighs our own, something which is not mentioned).
As a final note on language, the authors set out to “use language that is respectful to people on the autism spectrum and those who support them”. On paper this statement may seem perfectly fine and innocuous. But the reality is that it embodies the precise reason for why much of the debate and division around autism and language exists in the first place. It is often the case that those who support autistic people want one thing (e.g. often pfl) and autistic people what another thing (e.g. often ifl). Personally, I don’t see what the views of those supporting autistic people have to do with the language we use around autism. What matters is that the autistic person feels respected with regards to language use, and this has nothing to do with what those around them think is respectful. To me, this sort of thinking is simply reflective of a difficulty breaking with the long and broad trend of prioritising the needs and preferences of those around autistic people over actually autistic people themselves.
Other questionable things
– At the start of the chapter 1, the authors lay out the history of autism as encompassing two strands: the history according to researchers/professionals and the history according to autistic people and their families (p.14). – I would argue that it would be more accurate and respectful to represent the history in terms of three strands instead. The two-strand approach risks falling into the old habit of lumping autistic people in with parents/carers, as if we aren’t our own active agents. It also reflects a degree of ignorance /dismissiveness about the emergence of the autistic rights movement and how it largely developed as a precise result of autistic people standing apart from the perspective of parents (which they often criticised and came into direct conflict with), and seeking to develop their own self-run initiatives and culture.
– There is a folktale anecdote about a historic character (who is deemed autistic) committing a “faux pas” (p.14-15). I won’t relate the entire thing here, but suffice to say I think it was a bit weird and unnecessary to include. It seems to serve no purpose other than to provide some sort of entertainment value for (non-autistic) readers?
– The authors laud the work of Lorna Wing. Whilst she was obviously a pioneer and contributed a great deal, I would appreciate a more critical approach to her work (e.g. in my view the “triad of impairments” is neither a very nice nor accurate description of autism). More obviously problematic, the authors praise the work of Bernie Rimland, who essentially laid the foundation for the biomedical approach to understanding and attempting to “cure” autism, often through rather pseudo-scientific means.
– A huge problem in the book is including and recommending the book In A Different Key. This is a highly ableist, often inaccurate and quite frankly offensive book for quite a few reasons. Here is a great series of pieces by Autistic Academic critiquing the book.
– The authors relate that parents have been “prominent in shaping public perceptions of autism” — Quite right. But they don’t mention in what way. Nor do they mention that this predominance of parents might be a problem. I think it is an oversight to neglect to mention that much of this perception-shaping has been of a negative bent. In addition, parent-led advocacy has sometimes indirectly and even directly served to undermine autistic advocacy efforts (e.g. see the history of ANI outlined by Jim Sinclair in Loud Hands).
– The authors highlight the importance of “being informed” of the differing perspectives of the various stakeholders in the autism field. — Yes, but: It’s important to note that not all stakeholders are equal. Autistic people should come first and foremost. Not all of the perspectives within the differing stakeholder groups should be given equal weight. This is something which I feel is not emphasised enough. In addition, it is not really sufficient to be “informed” (which implies a degree of neutrality and passivity) and leave it at that. Ideally, we want all people in the field of autism – including researchers – to be supporting the perspectives of autistic stakeholders above all else and to be actively contributing to calling out any ableist views that may arise.
– Below is something which one of the autistic contributors said (on p.26) which I find a bit odd. (Note: I feel a bit sad having to criticise some of the autistic contribution, but then I don’t want to fall into the trap of having double standards for how I appraise autistic vs non-autistic created content – ultimately that’s patronising and ableist):
Martijn Dekker offers what is a rather scathing critique of the neurodiversity movement for being too prescriptive and ultimately exclusive, specifically in the way that it claims “there is no such thing as a suboptimal neurological configuration” (which is something I don’t think we should be disagreeing with..?). In apparent contradiction to the neurodiversity movement, Dekker states it is an okay thing for autistic people to see themselves as broken (also disabled – which is in fact very much encompassed within the neurodiversity paradigm) implying that autism can sometimes be equivalent to broken-ness. I’m also not sure what he means by “falling into the trap of taking our narrative too seriously”. Surely the narrative of equal human worth and rights is a pretty important narrative to be taking seriously. He finishes by saying that neurodiversity activists need to learn to “grow up” – which is an insensitive and totally irrelevant comment in my view.
I’m disappointed by the inclusion of this view, especially in the context of all the far more valuable, wonderful and representative autistic perspectives that could have been included on the neurodiversity movement. Instead the authors opt to include the view of someone who essentially criticises the movement and attacks a good proportion of autistic advocates (calling them distrustful and defensive). I’m not sure why this is. It’s not done to be representative, because this view does not represent the bulk of autistic advocacy. It is essentially bashing the movement the book is supposed to be promoting. The authors may want to offer critical and contrarian perspectives, but the inclusion of this particular critique seems to me highly questionable, playing as it does into harmful stereotypes about autistic advocates.
– Overall, the authors seem to me a little too invested in the early intervention narrative and the “early stage outcomes” (such as language development) that this could lead to. I can’t help feel there is a lingering underlying assumption that something about autism is not quite right, needs to essentially be set straight, that normative development is still being viewed as the goal. However, the authors do, at numerous junctures, remind us of the importance of questioning such assumptions, of the importance of listening to autistic voices on the matter, and they certainly emphasise the importance of an ethical framework regarding EI*. So it’s not so clear-cut. I do think, though, that they could have been a little more explicitly and forcefully critical of much of what goes on within EI practice and of the whole concept and desirability of EI in the first place.
*Questions they urge the read to consider include: “What message do studies send about the need to change autistic development (and the acceptable costs of doing so)? If we find a reliable early maker, what should we do with that information? Are justification for early intervention before diagnosis legitimate? Where does the boundary lie between supports that enable autistics to achieve their goals and supports that serve to normalise or suppress them?” This is great but I think they could have been more overtly critical – in terms of actually answering such questions (in progressive terms) – rather than merely raising them.
– The authors agree about the potential dangers inherent in biological research, that it may be directed towards the purpose of finding a “cure”. Still, they think it is wrong to suppose this sort of basic science research can’t align with progressive and community priorities (p.52). I would agree. Although I would add that there are potentially useful things which could be studied far more directly if they were pursued outside of this overriding goal of finding a biological marker. For example, they highlight that biological research into autism may help us to better understand co-occuring conditions (but surely studying these directly is likely to be more fruitful?). One troubling thing the authors relate is that “developing drugs to modulate how the brain responds to sensory input” might be one positive outcome and goal for this sort of research (p.138). — Well, first, I don’t think a person’s entire way of processing the sensory world can be boiled down to a co-occuring condition. It is not a specific medical issue, but the product of a pervasive and complex wiring of the brain that I think is unlikely to be easily – let alone safely – remediated through taking drugs. Even if this was someday possible, the ethical issues surrounding it would likely be huge (e.g. assuming sensory-perception is fundamental in autism, it could change a whole lot more than simply dampening painful hypersensitivity, including positive sort of sensory intensity, as well as non-sensory things, and potentially the entire developmental trajectory if the intervention is early and taken to the extreme). Basically, this statement falls into line with the narrative of trying to change who autistic people are (and potentially at a far more fundamental level than something like ABA which, whilst highly damaging, focuses only on the behavioural level).
– At one point in the book it is assumed that the reader is NT. (This is especially ironic given that in the very preceding sentence the authors talk about the importance of examining our assumptions!). On the plus side, the authors are clearly aware of their assumption. (But then why make it?) I’d like to think that plenty of autistic people are reading this book, perhaps even out-numbering nonautistics? Even if this isn’t the case, I would have liked to have seen it reflected more that autistic people are going to be reading this book. The statement in question appears on p.78: “It is instructive to ask yourself (if, like us, you are neurotypical Brit), is life for an autistic person a bit like life for me if I found myself plonked down in rural Japan” – I find this a slightly awkward analogy. The answer is an emphatic “no” (in large part because your sensory processing would still be typical and this is pretty core to autistic experience – something which they neglect to highlight, focusing only on social behaviour). Also, if you would like to try to empathise with our experience, just ask us about it rather than trying to come up with an imaginative scenario which doesn’t really fit.
– Puzzle pieces are used as part of illustrations on p.120 and p.136. This imagery is problematic and out-dated for a number of reasons. A simple Google search turns up plenty of autistic-authored posts explaining why.
– The authors see fit to include the Empathising-Systemising (E-S) theory (p.129-130). Whilst they do offer some good critiques (see “good things” below), their commentary about the many problems with this theory (and the associated “extreme male brain” (EMB) theory) does not go far enough in my view. Indeed, later in the book, the authors do bring up the EMB but without critiquing it in and of itself (only in terms of what the presumed associations with STEM might mean for how we think about autism and employment). They also refer to the EMB as an “information processing model” of autism. Really, I think it is best characterised as a “social-first” model (and a highly flawed one at that) in that it is essentially predicated on an assumption of low empathy which just happens to be situated on an opposing pole with strong systemising.
– Perhaps the biggest oversight in the book: there is no inclusion of intense world theory! In a book that is otherwise so comprehensive and wide-ranging, this is rather puzzling. It is also unfortunate given the many merits of this theory (especially compared to the social-first accounts of autism) and how it is perhaps one of very few theories that has actually gained some level of acceptance within the autistic community. (I do accept, though, that something like Enhanced Perceptual Functioning theory does come close to intense world, although I think its application to date has been rather more narrow).
– I felt the autistic contributions could have offered a bit more (although perhaps I am just yearning for a different sort of book – an entirely autistic-authored account of autism research perhaps!). Most contributions focused on relating personal experiences (which is fine, and I can see how this is valuable), with less direct reference to the subject matter of the preceding chapter. Most didn’t directly address or critique the contents of the book enough, in my view.
– Regarding the impact of ToM theory on public perceptions of autism: “…if [the ToM account is] misunderstood, [it] can make autism seem heartless” (p.136). I would say that even if well understood this is the case, and that the theory itself is heartless. The authors do, however, provide a useful breakdown of empathy (on p.144) in terms of: 1 – noticing emotional signals, 2 – interpreting mental states from external signals, 3 – empathic motivation, 4 – “appropriate” response. They clarify that most autistics only struggle with 2 and 4. This is a useful way to add nuance to the concept and to challenge generalisations/stereotypes, but they neglect to apply “the double empathy problem” to point 2.
– Media representation: The authors provide The Curious Incident of the Dog in the Night-time as a positive example of more “diverse representation” of autism (p.144). This is laughable given that in actual fact this book/play adaptation is a very bad example of stereotypical, non-diverse representation (it’s about a white male teenager who is skilled in maths, lacking in empathy and treated badly by just about everyone around him). Elizabeth Bartmess wrote a comprehensive critique of the book here.
– I’m not a huge fan of the “fractionated triad” theory of autism (which one of the author’s helped develop and still seems to be invested in). On p.96, it is suggested that the various aspects of autism may be unconnected at the psychological level. But to me, surely there is nothing in a person’s brain that is unconnected from other things, especially when what we are talking about are such broad all en-compassing processes as ToM, Executive Functioning and Central Coherence. To suggest these functions are independent of and unconnected from one another – or anything else going on in the brain like sensory perception – represents a step backwards in my opinion.
– On ToM, the authors state: “Regardless of what we might consider to be the evidence in favour of, or against, this theoretical model, learning that an autistic person may not automatically, accurately or confidently represent the mental state of other people is a very useful “handful” for a novice” (p.141) – Regardless? Regardless? REGARDLESS?!! Apparently it is okay to ignore the inconvenient fact that there is a lack of supporting evidence or theoretical soundness to this model and just continue to accept it blindly (mind-blindly perhaps) as has been par for course so far. (Note, if this wasn’t enough, the very same sentiment is repeated at two other junctures, on p.86 and p.96). They go on: “It reminds practitioners… to be patient when an autistic person in their care doesn’t quite behave as expected by neurotypical social norms” – Yes, patience is good, but the assumption that the autistic person’s behaviour can be boiled down to a ToM deficit is not so good. Most of an autistic person’s behaviour – especially outside of a social context – has precisely nothing to do with this. The authors also note that the ToM model has not led to effective therapeutic approaches to date, specifically in that teaching ToM skills does not produce change in areas that extend beyond the taught skill. – Hmmm, perhaps this is because the theory is rather rubbish, and does not actually tell us much about what is really going on in autism? Overall, the authors seem to be of the opinion that the “informal” impact of ToM has been a positive one (whilst the “formal” impact in terms of evidence-based intervention has been limited). I rather think they are in need of a reality check in this regard. A good place to start might be to read Melanie Yergeau’s piece on how ToM theory reinforces the systematic dehumanisation of autistic people.
– “We must remember that the current drive for “early intervention” at all costs can be very stressful for parents” (p.142) – Oh yes, must not forget the poor parents. What about the autistic children who are actually having these therapies being done to them! At least parents have choice and control in the matter. They can choose not to invest in certain EI therapies or in over-therapising.
– The authors describe how parents often undergo a desperate scramble to get intervention in place “before it is too late”. Whilst I realise the authors are talking about intervention in terms of “meaningful help” (i.e. that has the acceptance of the autistic person/community), this “before it is too late” sentiment plays into wider attitudes about autism being something one ought to progress out of. The authors do, however, highlight how an emphasis on achieving normative developmental milestones could be at the detriment of following an autistic learning trajectory.
– On highlighting the importance of parent perspectives, the authors state: “When reflecting on the history of autism support it is clear how fundamental parents have been to the creation of infrastructure and knowledge about autism” (p.156) – I think it is a slight oversight to fail to mention that this has often been negative; they seem to frame it as an entirely positive thing. The authors go on: “…so we can see that recognising and understanding the parent perspective is also vital”. – Just because it was important in the past doesn’t mean it should be or have to be in the future. This logic does not make sense in that what happened in the past is not necessarily good, nor does it necessarily have to continue into the future. Yes, we need to recognise parent perspectives. But the authors are insinuating that these perspectives are equal to autistic perspectives. For example, they highlight the dilemma of often contradicting views between the two groups which can make it hard for researchers to “determine a clear community-influenced direction” for their work. Um, actually, autism parents are not the community in question, because we are researching actually autistic people, not their parents! The solution to the dilemma is pretty simple (presuming you can stomach it): prioritise the views of autistic people. Not just on equal footing with, but as the priority perspective. A good thing that is mentioned is the particularly valuable position of autistic parents (who straddle both camps), despite the fact they are unfortunately so overlooked, still today.
– “What about non-speaking autistic people, or young children? Who speaks for them?” The authors suggest that “a range of voices should be present”, from parents to various professionals (p.157) – Ok, so non-speaking autistics speak for themselves. Not speaking is not the same as not communicating. Teach them alternative ways to communicate. Not speaking is not the same as not having a perspective, or something to share. It is not the same as not knowing what is best for yourself and for other autistic people. According to an analogy which the authors go on to make, non-speaking autistics are apparently about as unreachable as “refugees in a faraway warzone”. I don’t quite think this is an appropriate way of looking at it. You need to find alternative ways of communicating with and getting views from these autistic people, not to simply presume them unreachable and defer away from them (unless they express this as their preference of course).
– Ok so this one is a bit of a howler in my opinion: The authors present guidance for doing participatory research and, in preparation for the data collection stage (when autistics will be visiting the research space), they recommend researchers should “check the space: do a sensory review, check for disrespectful posters” – This made me laugh. And what, are researchers supposed to then put the posters back up after we leave? Their comment suggests the disrespectful posters are somehow only a problem if autistic people happen to see them. Perhaps researchers should be asking why there are disrespectful posters in their research institution in the first place.
– The authors make reference to the Autism Quotient as if it is a good measure to use (p.158)
– On the question of “aren’t we all a bit autistic?” (p.158-9): The authors note that many autistics are understandably angered by this sentiment. And yet they go on to sort of argue in favour of it…? They state that “the answer does appear more nuanced” (than “no, we aren’t all a bit autistic!”). At the behavioural level, the say that there is indeed a smooth continuum on scores in questionnaires. (Perhaps this is because said questionnaires are highly unsatisfactory, self-report isn’t that reliable, two people could score the same for a trait but still have radically different qualitative experience of that trait, and autism can’t be defined at the behavioural level anyway). In terms of biology, they highlight that the same autism-related genetic influences are at play across the entire population, which suggests autism may be a quantitative difference as opposed to a qualitative one. (Yes, but I think there might be a point one passes after which a certain quantity of a thing transforms the thing into a different thing/quality). At the cognitive level, it appears more complex. WCC theory suggests more of a continuum with neurotypicality, whist the ToM account suggests a possible categorical difference (“as autistics do not automatically and unconsciously track others’ mental states (or do so through conscious calculation)”) – Umm, ToM theory is not fact, something the authors appear to have forgotten in spite of their earlier critique. Also, double empathy problem.
– Rather puzzlingly, there is a statistic on p.8 that 1 in 3 autistic people possess savant skills – something which is obviously not the case (I think the figure is more like 1 in 10).
– In terms of the lack of meaningful impact of research on autistic QoL, the authors state that this is in large part due to the gap which exists between research and practice – Yes, but I think it’s neglectful not to remind the reader that this is also due to the fact that the bulk of research does not focus on QoL issues to begin with (quite the opposite in fact).
– So I need to rant a little about the book’s attempt to unpick the causality between the social (namely ToM) and non-social (namely so-called RRBIs) aspects of autism. They discuss it a fair amount, present competing possibilities and are overall critical. But to me, it is sort of blindingly obvious what is going on (perhaps because I am autistic lol)? They start with the rather ridiculous and horrid traditional assumption that “RRBIs” are merely secondary to some core social “deficit” (as per the work of Lorna Wing). Namely, “RRBIs” are seen to stem from a failure in social imagination, i.e. simply from a “failure to think of anything else to do”, to fill the void left from a lack of (meaningful) social interaction. This is rather offensive, but thankfully the authors note that “this is no longer the prevailing explanation”. Instead, more recent accounts reverse the causality, recognising “RRBIs as inherently motivating and self-sustaining” and often a source of creativity. BUT, then the authors go on to suggest that the reward value of repetition and sameness may stem from anxiety and a subsequent need for control (which is likely) but that this, in turn, stems from confusion about the social world, specifically lacking ToM! I would argue our sensory-perceptual differences are more important here, as well as issues around unpredictability and change and the risk of our “RRBIs” being interrupted and misunderstood by autistics – AND NOT BECAUSE WE LACK TOM. (If anything, it is that NTs lack Theory of Autistic Mind and so can’t comprehend the sources of our anxiety, which is in itself a big source of our anxiety.)
Here, in my opinion, is a superior explanation: Sensory perceptual differences (that make overload and distress more likely) → high anxiety → high arousal → RRBIs to calm nervous system (also high arousal dampens EF which makes RBBIs more likely, and RRBIs reduce EF burden). Of course it’s not likely to be so strictly linear and simplistic, but it seems rather better than the whole ToM thing.
There were plenty of good things about this book. Indeed, the positive aspects far outweigh the negatives. Whilst I can (and indeed have) listed all of the aspects I found questionable about the book, this isn’t possible to do in relation to all the progressive things – the blog post would end up far too long! So I have selected just a few highlights:
– One of the best things about the book is the inclusion of autistic commentary at the end of each chapter. The goal is to ensure the book is “firmly embedded in real-world community priorities” (p.2). The authors are refreshingly self-reflexive about their positionality (“what right do we have as neurotypical researchers, without lived experience of autism, to write an authoritative text on autism”! , p.10). As such they wanted to provide space for “contrasting, critical perspective or enriching our academic content with personal experiences”. Similarly, the authors are very aware of the importance of examining NT bias in the study of autism. They urge the reader to “bear in mind that we work within a paradigm defined by a non-autistic majority who have developed social rules and traditions that work for them” (p.79)
– The authors thankfully completely avoid functioning labels or any use of the “severe”/”mild” binary. On p.9 they critique the futility of trying to describe autism in terms of “severity”, stating that when invoking the concept of “severity” we are usually just trying to refer to the level of support a person requires.
– They do a great job of characterising autism as a neutral difference, with an individual’s experiences depending to large extent on, a) the environment and level of acceptance, and b) on the presence of co-occurring issues with sleep, digestion, physical and mental health. The latter need to be acknowledged as highly upsetting and disabling, but it is important to distinguish these issues from autism itself, and highlight the urgent need for more research and support in relation to these things.
– Heterogeneity is a key theme in the book. The authors highlight that the spectrum metaphor now seems “too linear to adequately capture the complex dimensions of variability between autistic people” (p. 39) and they propose a more useful concept of an autism constellation (drawing on the work of Caroline Hearst) in its place. However, the book is quite pre-occupied with trying to sub-type autism (for better or for worse – e.g. might this simply lead to compressing all this variability into pre-determined boxes all over again?), but at least they are very reflexive about this, suggesting that perhaps one option might be to simply embrace the diversity and leave it at that.
– The authors highlight the importance of studying autism at different levels – the biological, cognitive and behavioural. They emphasise the possible value of adding a fourth level of explanation as well – the sociological, so that we can better contextualise autistic individuals with respect to wider societal forces and look for societal-based explanations and solutions. They also emphasise temporal levels of explanation which can take the form of evolutionary time (which is perhaps less relevant), to developmental time and – what I think is very important and commonly overlooked – the temporal level of online moment-to-moment processing.
– The authors are highly critical of the lack of empathy trope and seek to deconstruct what is really going on. Here are a couple of great passages:
- “This construct [of autistics lacking empathy] is highly offensive to a group of people who may be working harder than most to work out others mental state and to respond as expected by social norms. To label any mismatch between expected behaviour in a particular social context and what an autistic person actually does, as resulting from lack of empathy betrays a significant lack of empathy on the part of the non-autistic observer” – Amen!
Incidentally, whilst they do draw on E-S theory and EMB theory, they ultimately seem quite critical of some aspects at least, such as in relation to the EQ: “here the nomenclature of “empathising” is highly problematic.”
They discuss the double-empathy problem, in vs. out group status, the emerging empirical evidence that non-autistics struggle to read (and may be biased to negatively discriminate against) autistics, the need to be critical about normative assumptions in posing research questions and interpreting the data, and so on.
– Intersectionality is mentioned a fair amount. I especially like a passage where the authors encourage researchers to stay abreast of the latest philosophical, political and sociological debates and to incorporate intersectionality issues in their research, ensuring it is relevant to and reflective of autistic people of all stripes. They go on: “More than this, ideally autism research would be at the forefront of developing these debates, with results feeding back into a socio-political agenda for change” – Absolutely.
– “Diagnostic category of autism is no more than a social construct used to try to describe a pattern of phenomena that may be very different when externally observed versus internally lived” – Indeed!
– There is an absolutely fantastic paragraph that is worth quoting in full (p.98): “Some autistic people report having too much insight into other people – detecting every detail of someone’s behaviour, as well as feeling empathy very strongly. If so, it is possible that we have our models of autistic and non-autistic social skills entirely the wrong way around. Perhaps non-autistic people are relatively poor observers of human behaviour, and this gives us the ability to respond quickly and fluently, because we are only using the gist of the social situation to guide our decisions. Meanwhile, autistic people are burdened with an unfiltered representation of every detail that prevents them from making handy generalisations or using holistic approximations to guide their social behaviour” – I think this explanation comes very close to the truth (although I wouldn’t use the terminology of “burden”, it’s far more nuanced than that).
– My favourite chapter was that on information processing models of autism because I think these hold the answer. However, I was disappointed that the authors appear to be a bit lukewarm about them. They highlight how there is a lack of empirical testing in this area which is holding the theories back. But, to me, this says nothing about the potential usefulness of such theories – they haven’t even been tested enough so how can we appraise their usefulness! This is a very different state of affairs from something like ToM theory which has very much been tested and with very mixed and inconsistent results. The fact that most autism researchers have not been focusing on generalised information processing models is not a fact which can be used against them!
As a final point (and on the theme/argument which I personally find to be the most important in autism research), the authors note: “There has been, historically, an overwhelming focus on the social and communicative domain in psychological literature. Is it warranted? Does it correspond with the primary needs of autistics?” — I do not think that this over-emphasis is warranted, nor does it reflect the reality of autism (at least not at its core), let alone our primary needs. The authors stress at multiple junctures the continuing puzzle of the nature of the causal relationship between social cognition and domain general processing. To me, the answer – dare I say it – seems quite clear (at least in terms of what I feel makes most theoretical sense and in terms of how see it reflected in my own lived experience… I can see though how testing it might pose a huge challenge). Whilst it is a great thing that the authors are raising such questions and troubling old assumptions, ultimately I wish the book would have gone further in arguing for a non-social-specific account of autism. The authors note: “Have autistics been subject to a mysterious coincidental combination of differences in both social interaction and information processing styles. Why should these two things have occurred in so many?” – This is the crux of the issue. And I’d argue categorically that, no, it is not coincidental. They stem from and ultimately are one and the same process.