Paper: "The loneliness of me: The assumption of social disinterest
and its worrying consequences in autism"
This paper was published in 2019, in the journal Behavioral and Brain Sciences.
You can click HERE to download a PDF of the paper.
This paper looks a bit different.
We were invited to write a commentary (i.e. an opinion piece) on a paper by Vikram Jaswal and Nameera Akhtar which was published in 2019. Their paper was called: “Being versus appearing socially uninterested: Challenging assumptions about social motivation in autism” (click on the title to open it in a new tab).
Please see below for my plain English summary of Jaswal and Ahktar's arguments and our response to their paper!
What was that paper about, and why is it important?
Jaswal and Ahktar were pointing out that some theories and perspectives on autism assume that because autistic people socialise and communicate in different ways, they are disinterested in social contact. Jaswal and Ahktar argue against this assumption with three main points:
1. Behaviours are not always an accurate sign of what someone is feeling or thinking. We often try to guess what people are feeling and thinking based on their behaviour, but we’ll almost certainly be wrong sometimes. So, for instance, where someone could interpret reduced eye-contact (a behaviour) as a sign of disinterest (a feeling), Jaswal and Ahktar talk about different eye-contact behaviours across different cultures. They also cite reports from autistic people that eye contact may be uncomfortable and gets in the way of focusing on what the other person is saying.
2. One of Jaswal and Ahktar’s main points was that we should listen to autistic people about autism. Therefore, since many autistic people tell us that they are very interested in social relationships,
“it seems perverse not to take that testimony seriously, a courtesy we certainly extend to non-autistic people” (page 2)
Jaswal and Ahktar also note that people will differ on how social they are - everyone does! It also depends on the context, the people they are with, how they are feeling, etc. They suggest that the kind of measures which studies use to investigate social motivation in autistic people are more likely to imply that they are indeed less socially motivated, because they do not take into account all of this nuance.
3. The assumption that autistic people are not interested in social relationships is likely to be profoundly harmful.
Firstly, if non-autistic people around the autistic person assume they are disinterested, it will affect how they engage with them. Social interaction is something that necessarily involves at least one other person, whose behaviour, beliefs and emotions will affect the autistic person they are socialising with - this is sometimes overlooked in autism research. If you go into an interaction believing that the person you are interacting with is disinterested, you’re likely to be a bit cold or anxious and keen to get away from them - and an autistic person might well pick that up and seem uncomfortable, too. Jaswal and Ahktar point out:
“We suspect that a lifetime of having their behavior (mis)interpreted as indicating they are not socially motivated may lead some autistic people to withdraw from, and experience little enjoyment in, social situations” (page 9)
They also point out that if researchers hold this assumption about social disinterest, they will be biased to interpret findings in particular ways. If therapists, psychologists and healthcare professionals hold this assumption, they will behave differently and may also try to change the autistic person’s own social style, which may be very harmful and paradoxical if they’re trying to encourage social interaction!
What did we add on to this?
My colleague Jie and I agreed thoroughly with Jaswal and Ahktar’s points. We added on to this by saying:
1. We know that loneliness is a major factor in mental ill-health, and cited an unpublished finding of ours that for autistic adults, loneliness was linked to feeling suicidal. We noted that sadly, social interaction may not actually ease feelings of loneliness for autistic people. A person may feel extremely lonely and yet not wish to socially interact with others if those interactions only make them feel bad about themselves.
Jaswal and Ahktar made an excellent point by emphasising how much the beliefs and feelings of the non-autistic person in a social interaction could influence the success of the interaction, and therefore how important it was to challenge the assumption of social disinterest - we strongly agreed.
2. We pointed out that professionals, including healthcare professionals, often hold the same kind of assumptions as the general public. It may mean that autistic people who attempt to socially connect with others are less likely to be diagnosed as autistic. On a personal level, being undiagnosed can be very difficult thing.
On a research level, it means that a whole lot of people who really are autistic are not being included in research studies about autism. If only autistic people who are more aloof get diagnosed as autistic (bearing in mind that everyone differs in how socially motivated they are), and if research studies only recruit people who have an autism diagnosis, then studies on social motivation will suggest that autistic people are less socially motivated - they have not included all the autistic people who are more social!
4. We suggested that mixed method studies are an important way forward, as studies using more qualitative methods (such as interviews), alongside psychological tests, give autistic people more of a buy-in into research that centres their voices more prominently. We also said that autistic participation in research could be centred more by developing psychological tests that were designed for and with autistic people.
5. We concluded that non-autistic people need to be aware of normative assumptions they might be making about autistic people, since these will impact on social interactions and provision of support.
Looking back on what we wrote:
Research papers often take several years to write and publish. This means that although Jaswal and Ahktar’s paper and our response were published in 2019, we were working on them in 2017-onwards. Since this time, autistic people have become much more prominent in the research process, as co-creators and sometimes as the lead investigators, and autistic voices have been centred and highlighted much more than they were in 2017-2019. We know a lot more now about participatory research, about ways that autistic people can (and should) be involved in the research process.
We also know a lot more about how the non-autistic person in a social interaction can influence how satisfying that interaction is for both parties. The excellent work on double empathy has demonstrated that non-autistic people often misinterpret what autistic people are feeling or thinking and their behaviour. People of different neurotypes have different ways of communicating and expressing emotion, so why should one style be perceived as "incorrect"? It may be healthier to think, instead, of mismatched communication styles across neurotypes.
We now know how damaging stigma is for autistic people. Jaswal and Ahktar very clearly show how the beliefs that non-autistic people hold about autistic people can reduce the chances of their interactions being pleasurable and successful:
“After repeatedly being ignored or treated as not socially motivated, after repeatedly being told to act in certain ways and not others even when that is not possible, some autistic individuals report … they give up trying to engage with others” (page 12) .
Given the role that loneliness and social disconnection play in mental ill-health and suicide in autistic people, I would now agree even more strongly that the assumption that autistic people are not socially motivated could be deeply damaging.
Thank you for reading!
3. We made another point in relation to healthcare professionals. We agreed that in our work, just as in the studies that Jaswal and Ahktar cited, autistic people expressed how strongly they wanted and needed caring, reciprocal relationships (“People need relationships, love and appreciation”).
They also emphasised how much they needed and valued a supportive relationship with healthcare professionals, and that sometimes, it was very hard to connect with them: “You are speaking a different understanding and it is so hard to find a moment where understanding touches.” (These quotes were from our study on self-injury). If these assumptions are held by healthcare professionals, this could be a reason why healthcare encounters are often so dissatisfying for autistic people.
If you found this interesting, you may like to read:
If you are struggling with your mental health, you may like to look at the resources page.