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The target article by Jaswal & Akhtar (J&A) is extremely welcome, and in our commentary we offer support along with suggestions on how the account should be elaborated even further with reference to the “double empathy problem” (Milton Reference Milton2012), while highlighting the potentially negative consequences for the mental health of autistic people when they are misunderstood by others. We also comment on the value of participatory research addressing social motivation in autism.
The double empathy problem (Milton Reference Milton2012) recognizes that autistic people have difficulty connecting with others; but instead of explaining this as a problem residing in the autistic individual, the account locates the problem more at the level of society. It supposes that just as autistic people have difficulty understanding neurotypical people, so do neurotypical people have difficulty understanding autistic people, perhaps because autistic and neurotypical people have rather different perceptions and experiences. J&A note that some researchers misconstrue social motivation as residing within an individual, when it is more appropriately understood as arising from a dynamic interaction between the individual and how others perceive and react to them. The upshot is that difficulty with social connectedness and even social aversion are not so much features of autism but consequences of being autistic. After feeling socially excluded, autistic people will find social situations – at least those involving neurotypical others – to be unrewarding and even aversive. The transactional perspective on development (Sameroff Reference Sameroff1975) recognizes that how one grows socially and emotionally depends not just on an immutable aspect of the individual's constitution but also on how the behaviour of others shapes how you behave, which in turn shapes how others behave towards you, which shapes how you behave towards them, and so on. Autistic people might be just as socially motivated as neurotypical people, but this motivation might be blunted by negative experiences or it might prevail unabated but without being apparent to neurotypical people.
The assumptions in the preceding paragraph are that autistic people are both difficult to interpret and perceived unfavourably by neurotypical people. Are these valid assumptions? Yes! Sheppard et al. (Reference Sheppard, Pillai, Wong, Ropar and Mitchell2016) reported that the behaviour of autistic people as they spontaneously react to a social event is considerably more difficult for neurotypical people to interpret. Neurotypical observers stand a fair chance of accurately inferring what caused the behaviour of other neurotypical people but do less well when observing autistic people. Meanwhile, Sasson et al. (Reference Sasson, Faso, Nugent, Lovell, Kennedy and Grossman2017) reported that neurotypical observers rated the behaviour of autistic people significantly less favourably than they rated the behaviour of neurotypical people – even though the observers had no idea that some of the people they were viewing were autistic. Because autistic people are difficult to interpret and are perceived unfavourably by the neurotypical majority, this in turn could impact on how they interact with others, giving the impression they are socially unmotivated.
As noted by J&A, the unhelpful claim that autistic people are socially unmotivated has also led to the supposition that they may not crave social connections. However, this assumption is not consistent with autistic people's experiences of feeling lonely (Hedley et al. Reference Hedley, Uljarevic, Wilmot, Richdale and Dissanayake2018), and that belonging (meaningful social connections) is an important part of their well-being (Milton & Sims Reference Milton and Sims2016) and quality of life (McConachie et al. Reference McConachie, Mason, Parr, Garland, Wilson and Rodgers2018). On sensing that they are liable to be perceived unfavourably, autistic people are thus strongly motivated to “camouflage” (Hull et al. Reference Hull, Petrides, Allison, Smith, Baron-Cohen, Lai and Mandy2017; Lai et al. Reference Lai, Lombardo, Ruigrok, Chakrabarti, Auyeung, Szatmari, Happé and Baron-Cohen2017; Rynkiewicz et al. Reference Rynkiewicz, Schuller, Marchi, Piana, Camurri, Lassalle and Baron-Cohen2016), meaning that they effortfully imitate relevant aspects of behaviour they observe in people they believe to be more socially skilled than they, in an attempt to be more readily accepted by others. However, camouflaging autism comes at a great psychological cost. Autistic people describe camouflaging as “exhausting” (Hull et al. Reference Hull, Petrides, Allison, Smith, Baron-Cohen, Lai and Mandy2017), increasing risk of depression (Cage et al. Reference Cage, Di Monaco and Newell2018), anxiety (Livingston et al. Reference Livingston, Colvert, Bolton and Happé2019), and even suicidal thoughts and suicide attempts (Cassidy et al. Reference Cassidy, Bradley, Shaw and Baron-Cohen2018). Camouflaging is symptomatic of a wider societal issue – that is, neurotypical people failing to accept autistic people (Cage et al. Reference Cage, Di Monaco and Newell2018; Cassidy et al. Reference Cassidy, Bradley, Shaw and Baron-Cohen2018; Milton Reference Milton2012) – and the unique nature of social motivation and behaviour in this group (Heasman & Gillespie Reference Heasman and Gillespie2018a), which impact their mental health and well-being.
We agree with J&A that it would be bizarre to ignore testimony from autistic people as evidence, but we also acknowledge that these data are unsystematic and prone to various biases associated with the context in which the testimony was given and the motivations of those who gave it. To further the field, and address these concerns, participatory and mixed methods designs would be particularly useful. Participatory methods involve working with the autistic community as equal partners to identify the research questions and refine the design of studies. These approaches offer a systematic method of listening to and taking on board the views of the autistic community and subsequently investigating if these anecdotal observations and ideas play out in findings from research. This approach is being used increasingly by researchers to explore the unique nature of social motivation and mental health difficulties within the autistic community (Cassidy et al. Reference Cassidy, Bradley, Shaw and Baron-Cohen2018; Crane et al. Reference Crane, Adams, Harper, Welch and Pellicano2019). We expand on J&A's position in that autistic people's expertise from experience should be incorporated into future research exploring the unique nature of social motivation in autism, so “a more accurate, humane, and useful science of autism” (target article abstract) is achieved together.
In summary, the concepts of the double empathy problem and the transactional model of development are extremely important to the thesis J&A offer, even though they do not refer to these concepts explicitly. Moreover, the thesis would be enriched by reference to recent empirical evidence that autistic individuals are misunderstood and perceived unfavourably by others, and to the wider impact of unhelpful assumptions about social motivation on the mental health and well-being of autistic people. We further argue that participatory research methods are a particularly powerful way of including autistic voices in developing a more accurate and useful science of autism.