Written by Dr Melanie Heyworth
The status quo
To an outside observer, Autistic people have some unusual mannerisms and behaviours that set them apart from their non-autistic peers. For example, Autistic people regularly stim (engage in self-stimulatory, repetitive motor actions like finger-flicking) and are echolalic (repeating noises and phrases). Equally, non-autistic people have some mannerisms and behaviours that Autistic people are less likely to display, like sustained eye contact and joint attention (including pointing and sharing focus).
Until now, many researchers (and, by extension, the non-autistic community) have assumed that these differences indicate that Autistic people are not interested in other people, are antisocial or asocial, or have limited (or even no) social interest and motivation.
In fact, even today, the idea that Autistic people are socially disinterested is central to the way most researchers approach Autism, and to the way they account for intrinsic Autistic differences. Thus, many Autism “interventions” and “therapies” have “improving social motivation” as their purpose.
Challenging the status quo
In their research on “being versus appearing socially uninterested”, Vikram Jaswal and Nameera Akhtar argue that this current understanding should be challenged.*
In the first place, they contend, interpreting Autistic differences as evidence of social disinterest directly contradicts the testimony of Autistic people themselves, which speaks to a deep desire for social connection, although the nature of social connection may look different for Autistic people.
Secondly, such an understanding advances a single reason (social disinterest) for differences in Autistic social mannerisms and behaviours, dismissing other potential reasons.
Thirdly, Jaswal and Akhtar remind us of the bidirectional, reciprocal and ultimately mutual social dynamic (which Milton terms the “double empathy problem”; read more here). In other words, non-autistic people may be misunderstanding Autistic social behaviours, and misinterpreting or mis-translating Autistic social interest as Autistic social disinterest.
Possible reasons for Autistic social differences
To begin with, Jaswal and Akhtar remind us that not all behaviours reflect an individual’s inner thoughts or feelings, which allows for multiple interpretations of a single behaviour.
Take, for example, eye contact. In reflecting on the status quo, Jaswal and Akhtar mention both that “Autistic people tend to engage in eye contact much less frequently than non-autistic people”, and that “one explanation for why autistic children and adults infrequently engage in eye contact is that they are not motivated to do so”. That is, that lack of sustained eye contact is seen as indicative of diminished Autistic social motivation.
But what other reasons might there be for Autistic eye contact differences? If we accept that conventional levels of eye contact are culturally distinct and constructed, and that individuals who engage in less eye contact because of cultural differences are not seen as socially unmotivated or disinterested, we are prompted to look for other potential reasons for unique Autistic patterns of eye contact.
We know that eye contact contributes to cognitive load, even in the non-autistic population. It is possible, then, Jaswal and Akhtar suggest, that Autistic people do not engage in sustained eye contact to help them to manage cognitive load and to adapt to potential cognitive overwhelm. Such a proposition accords with Autistic people’s own accounts, which rarely imply that social disinterest is at the heart of their eye contact differences.
Another Autistic behavioural difference is less “declarative pointing” (or pointing simply to share interest in an object or share an experience) than we expect in the non-autistic population, although Jaswal and Akhtar note that “imperative pointing” (pointing that requests an object or item) is similar in Autistic and non-autistic populations. Thus “it is commonly asserted that autistic children point to obtain things, but not to share experiences”, an assertion usually accompanied by the correlated assumption that Autistic children therefore “lack the motivation to share experiences with others”.
One significant limitation of this assertion and its accompanying assumption is that research into Autistic pointing has frequently been misrepresented, since many (if not most) Autistic children who do not point declaratively also do not point imperatively. That is, they don’t point at all for any reason. Pointing simply seems not to be an organic Autistic communication behaviour for many Autistic children, and so cannot be seen as a disinterest in sharing experiences with others. Furthermore, many Autistic children do, in fact, point declaratively, if less frequently than non-autistic children. But less frequent declarative pointing is just as likely due to Autistic children having more selective, and less typical, interests they feel are worthy of sharing (being pointed at), as it is to indicate a disinterest in sharing those experiences at all.
When we also think about the well-documented difficulties that many Autistic have in motor planning and coordination, it may simply be that pointing is too complex a motor action for Autistic children to perform as frequently as their non-autistic peers.
Self-stimulatory behaviours (or “stimming”), also called “motor sterotypies”, are repetitive movements. Most people – Autistic and non-autistic alike – stim. Common stims are hair-twirling, nail biting, and restless leg movements. Autistic people often stim considerably more than non-autistic people, however, across the lifespan.
Whilst many non-autistic observers think of Autistic stimming as “meaningless”, Autistic people themselves speak of stimming as organic and communicative body language and a method for self-regulation (for anxiety, for example). Unfortunately, the “meaningless” definition has prompted some researchers to propose that, since Autistic people spend so much time engaging in “meaningless” behaviours, they must have lower motivation to connect socially and be socially withdrawn.
Yet, when non-autistic people stim – which they undoubtedly do – they are not considered deficient in their social motivation. The association of stimming with social disinterest, then, is fundamentally flawed.
Echolalia is the “verbatim repetition of part or all of another’s utterance and can include words and phrases that do not appear to be relevant in the current context”. Autistic individuals frequently engage in echolalic speech. Non-autistic people (both children and adults) are also sometimes echolalic, but they usually engage in echolalic speech less frequently than their Autistic peers, and they display more diversity in their types of speech.
Autistic echolalia has been dismissed – rather like stimming – as meaningless behaviour by non-autistic observers and researchers, in part because it is often difficult to interpret correctly the message being communicated by the echolalia. But Autistic individuals report that their echolalia does, in fact, have communicative intent.
There are two important conclusions Jaswal and Akhtar draw from their observations:
- “Treating echolalia as intentional communication is likely to signal to an individual that conversational partners are interpreting their attempts to communicate as meaningful, which may reinforce the individual’s desire to communicate”, and
- Whilst not all Autistic echolalia is necessarily communicative, that does not necessarily imply it is meaningless either. Autistic people speak about echolalia as a way of cognitive processing, self-regulation (as in a mantra), or connection.
In other words, the frequency with which Autistic people are echolalic is not connected to a lack of social motivation.
Dangers of assuming Autistic social disinterest
Jaswal and Akhtar argue that “the assumption that behavioral differences between autistic and non-autistic people that appear to indicate lack of social interest actually do indicate lack of social interest has had unfortunate consequences for how some findings in autism science are interpreted and for what the targets of intervention in autism have traditionally been”.
They summarise these dangerous consequences as follows:
- In research, the assumption leads to bias in interpreting and analysing results (researchers “see” what they expect to see in their data).
- In interventions, organic Autistic behaviours and communication methods are targeted for reduction or elimination since they are considered “meaningless” and/or indicators of social disinterest. The communicative functions of such behaviours are ignored or misunderstood. Logically, such an approach might decrease, discourage or demotivate Autistic social connection.
- In “real life”, trying to insist that Autistic people adopt non-autistic communication behaviours may in fact make it more – not less – difficult, and less – not more – motivating, for Autistic people to communicate.
The implications of Jaswal and Akhtar’s reinterpretation are significant. Essentially, Autistic people become more socially isolated because their social overtures are misinterpreted and discouraged by non-autistic carers, family and friends. As the authors argue, if an Autistic individual’s unusual social communication efforts are misinterpreted as social disinterest, and if conventional (and potentially aversive) non-autistic social behaviours are insisted upon as demonstration of social interest, Autistic people will be doubly discouraged from social interaction. Thus, Autistic social disinterest becomes a kind of “self-fulfilling prophecy”.
As Jaswal and Akhtar conclude, if we set aside our assumptions that any ostensible Autistic social withdrawal or disinterest is “self-imposed”, and instead accept the very real possibility that it is instead misconstrued, atypical demonstrations of social interest, then teaching parents, caregivers and allies to recognise and correctly perceive Autistic social interest should become our focus. Naturally, Autistic people’s own accounts of their desire and attempts for social connection should drive this reorientation.
* Jaswal, V. K., & Akhtar, N. (2019). Being versus appearing socially uninterested: Challenging assumptions about social motivation in autism. Behavioral and Brain Sciences, 42(e82), 1-73. doi: 10.1017/S0140525X18001826
For those looking for further information, Jaswal and Akhtar provide an additional op-ed piece in the New York Times.