Autism and the double empathy

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This article proposes a link between autistic people being misperceived by the neurotypical majority and their being at risk of poor mental health and well‐being. We present a transactional account of development in which the misperceptions (and consequent behaviour) of the neurotypical majority influences the perceptions and behaviour of autistic people such that they become increasingly separate and indeed isolated from mainstream society. This jeopardizes their mental health and prevents autistic people from developing to full potential. The situation is not only problematical for the development of autistic people but is also to the detriment of wider society, in so far as autistic people are effectively prevented from contributing fully. This account assumes that some (not necessarily all) autistic people yearn to be included, to be productive and to be useful. It thus directly opposes accounts that view autism as an extreme case of diminished social motivation.

The medical model assumes that autism exists in the individual as part of their essence, condition or constitution, a view that is likely shared by individuals so diagnosed (Silberman, 2015); that if we could treat this condition (with a kind of medical or therapeutic intervention) to get rid of it, then the individual would be cured and continue life thereafter as a neurotypical person.

In contrast to the medical model, a social–developmental account of autism assumes development is shaped by the kind of responses and reactions we experience when encountering others. This is a transactional account of development (Mitchell, 2017) that assumes your behaviour influences how others perceive you which in turn determines how they behave towards you which then impacts on how you behave which further influences how others perceive you and so on

A key priority, then, is to understand how autistic people are perceived and understood by others. Surprisingly, we know little about this, though considerable research effort has been devoted to demonstrating that autistic people have an under‐developed ability to perceive and understand other (non‐autistic) people (e.g. Pillai et al, 2014). This research imbalance is probably driven by the medical model, perhaps with the implicit belief that if we can identify the nature of impairment in autistic people then we will be well‐placed to reduce or even cure it.

A great volume of research has documented the difficulties autistic people face in inferring other people’s inner states (Baron‐Cohen, 1995). These difficulties are offered as an explanation for why autistic people experience challenges in social contexts (Frith, 2003). More recently, though, a few researchers have turned the question on its head to enquire how neurotypical people fare in understanding autistic people, especially in inferring their inner states (e.g. Edey et al, 2016). Accordingly, Milton (2012) articulated the ‘double empathy problem’, suggesting that autistic people have difficulty fitting into society not just because they misunderstand others but also because they are misunderstood by others. Hence, considering how autistic and neurotypical people fare in perceiving and understanding each other, there could be a failure of empathy in both directions.

How are autistic people (mis)perceived by neurotypical people?
This is a highly pertinent question but one that is extremely difficult to answer (though not impossible—see below). Specifically, it is hard to determine how accurately people infer the inner states of any people, including those who are autistic.

The authors concluded on the strength of this that the inner states of autistic people are more difficult for neurotypical people to infer than are the inner states of neurotypical people. Such a conclusion is limited, though, considering that perceivers were not actually asked to infer inner states of targets but rather were asked to interpret the movements of geometrical shapes by selecting from a set of interpersonal emotion terms.

To find out, Sheppard et al asked a different group of neurotypical perceivers to rate the expressiveness of targets (without being informed that some were autistic), and in at least two of the scenarios (in which autistic targets were less readable than neurotypical targets), autistic targets were adjudged to be equally as expressive as their neurotypical counterparts. By implication, then, the signal emanating from autistic targets is not weaker in strength but is of a different quality, compared with neurotypical targets.

The medical model argues that autistic people experience social communication impairments, and predicts that these deficits would be amplified in autistic–autistic interactions. In contrast, the double empathy problem argues that autistic and non‐autistic people have different social communication styles, with each group having difficulty empathising with the other. Therefore, the double empathy problem would predict that mixed autistic–non‐autistic interactions would experience the most difficulty in social communication, whereas autistic–autistic peer communication would be significantly more efficient in comparison. Research has started to explore these hypotheses.

Two recent studies have explored this question. Grossman et al. (2019) and Debrabander et al. (2019) both compared how autistic and non‐autistic people rated other autistic and non‐autistic peers. Results in both studies showed that autistic people rated other autistic people as less socially favourable compared to non‐autistic people (similarly to non‐autistic raters). However, in Debrabander et al. (2019), autistic people’s ratings were not perceived as an impediment to future social interaction (unlike non‐autistic raters).

Autistic people have a unique social communication style, which tends to be misinterpreted by neurotypical people, and are associated with neurotypical people perceiving autistic people unfavourably. Neurotypical people thus seem to lack the capacity to empathize with autistic people, just as it is claimed that autistic people lack capacity to empathize with neurotypical people. In this respect, the condition of autism should be understood as a bidirectional failure of empathy—hence, the double empathy problem (Milton, 2012). Consistent with this theory, and contrary to the predictions of the medical model, autistic people communicate more efficiently with other autistic people than they do with non‐autistic people.

because neurotypical people are unwelcoming towards autistic people and exclude them socially, they do not learn to interpret their autism‐specific style of social interaction, which might serve to further perpetuate their misunderstanding and misperception.

Hence, we envisage that early‐emerging, or even innate, social interaction differences between autistic and non‐autistic people act as a starting point for a transactional developmental process across the lifespan, the outcome of which is two ever more distinct groups, each with their own social interaction styles, which do not understand or empathize with each other particularly well. This means that both groups miss opportunities to learn from each other, not just about each other’s' style of social engagement, but also fail to benefit from each other’s’ unique skills and abilities. Although we propose this to be a bidirectional issue, it is plausible that, as suggested by Milton (2012; see also Chown, 2014), neurotypical people might fail to empathize more than autistic people, as autistic people probably have greater opportunity (and need) to interact with and understand neurotypical others than the reverse, because the majority of society is neurotypical.

The argument above raises the interesting possibility that, if increased cross‐neurological social interaction and inclusion were to occur from an early point in development, this could alter the developmental course for both autistic and neurotypical people. Fewer misunderstandings might occur, more favourable cross‐group impressions could be formed, and ultimately perhaps a distinctive cross‐neurological social interaction style could emerge.

One area of evidence which could begin to address our proposed model is to explore whether people who regularly interact with autistic people over the course of development, such as family members and siblings, are better able to interpret autistic people’s behaviours, and also rate their behaviour as more favourable. To our knowledge, no research has directly addressed this question, although one previous study has investigated misunderstandings between autistic individuals and their family members (Heasman & Gillespie, 2018).

There is also initial evidence that disclosure of autism diagnosis increases non‐autistic people’s favourability ratings of autistic people (Sasson & Morrison, 2019), but this may not translate into meaningful and positive behaviour change (Heasman & Gillespie, 2019b).

Being socially isolated is likely to have adverse consequences for mental health (Hämmig, 2019), as is being perceived negatively by others along with the associated damage to self‐esteem (Henriksen et al, 2017). At the time of writing, a link between how autistic people are perceived and the status of their mental health has yet to be established empirically. Nevertheless, as there is reason to believe such a link does exist, we can expect to find that issues of mental health will be elevated in autism. Sadly, the findings of recent research are entirely as expected. A majority of autistic adults (up to 79%) meet criteria for a psychiatric condition (Lever & Guerts, 2016) and up to 72% experience suicidal desire (Cassidy, Bradley, et al, 2014; Cassidy et al, 2018). Autistic people are at significantly increased risk of dying by suicide than the general population, with suicide a leading cause of early death in this group (Hirvikoski et al, 2016; Kirby et al, 2019, and Cassidy, 2020 for a review).

Autism research has been plagued by the unhelpful assumption that autistic people are socially unmotivated (Chevallier et al, 2012), contrary to the testimony of autistic people (Jaswal & Akhtar, 2019; Mitchell, Cassidy & Sheppard, 2019). This has led to little research exploring how autistic people may experience constructs like thwarted belonging, and the consequent impact on mental health through the lens of suicide models such as the ITS. Our participatory research suggests, however, that autistic people painfully feel the consequences of social rejection and isolation, with consequent negative impact on mental health.

Autistic people describe belonging as a crucial aspect of their well‐being (Camm‐Crosbie et al, 2019; Milton & Sims, 2016), and those who are more likely to report external indicators of thwarted belonging, such as loneliness (Hedley, Uljarević, Wilmot, et al, 2018), lack of social support (Hedley et al, 2017), dissatisfaction with social support (Cassidy et al, 2018; Hedley, Uljarević, Foley, et al, 2018), and lack of acceptance in society (Cage et al, 2018), are also more likely to experience depression and suicidal desire. Pelton et al, (2020a) explored whether autistic people were more likely to experience thwarted belonging than neurotypical people, and whether there were similar associations between thwarted belonging and suicidal desire in both groups—as predicted by the ITS. Results showed that autistic people reported significantly higher levels of thwarted belonging than non‐autistic people. In fact, thwarted belonging was normally distributed in autistic people, whereas this experience is typically rare, resulting in a skewed distribution in the neurotypical group. Thwarted belonging is thus a far more common everyday experience for autistic people than it is for neurotypical people. Thwarted belonging was also associated with suicidal desire in both autistic and non‐autistic people, as predicted by the ITS. However, the associations were significantly attenuated in the autistic compared to the neurotypical group (Pelton et al, 2020a). This could reflect the fact that the measures designed to capture thwarted belonging in non‐autistic people, do not similarly capture this construct in autistic people (Pelton et al, 2020b).

Conclusion
We are not denying that autism has an innate basis and we accept the evidence on heritability along with its implication for a broader phenotype (Pickles et al, 1995). However, it is also very important to recognize and understand how the behaviour of autistic people is misperceived by the neurotypical majority in society and how this misperception could have far‐reaching negative consequences for the development of autistic individuals. This misperception could result in autistic people being excluded from the social world to a degree which is detrimental to both autistic and non‐autistic groups, as both are denied opportunities to benefit from each others' skills and abilities. Moreover, social exclusion could impact negatively on mental health, leading the individual to camouflage and pretend to be other than they are, leading to low esteem and a sense of thwarted belonging. In some cases, this could lead to suicidal thoughts.

The way forward is not to seek a way of changing autistic people to make them ‘fit in’ but to change society to make all of us more tolerant of diversity. Doing so will not only improve the quality of life and the productivity of autistic people but will make society a better and more functional place for everyone.

This article makes a start in outlining the issues; it is not an end point. There is much to discover, such as how the experience of living with autistic people improves one’s ability to interpret behaviour more accurately and evaluate behaviour more positively. We also do not yet know how the severity of autism impacts on how the individual is perceived by the neurotypical majority; and we do not know how others’ perceptions affect autistic individuals differently as they grow and mature. These and other questions are waiting to be explored and the information we gather will surely make society better for all.

This article proposes a link between autistic people being misperceived by the neurotypical majority and their being at risk of poor mental health and well‐being...

But it is not obvious to the other 98% of the population running the place.