Over a decade ago, Chamak et al. (Reference Chamak, Bonniau, Jaunay and Cohen2008) asked, “What can we learn about autism from autistic persons?” Some readers might find the question confusing – how could anything about autism be learned without the active participation of autistic people? – but the question critiques a longstanding habit in studies of psychiatric and neurodevelopmental differences. Researchers regard those diagnosed with such conditions as unreliable narrators of their own experiences, even when they have the capacity to communicate. Researchers might recruit autistic people as study participants, but they are unlikely to solicit their input on research design or their insights into the underlying causes of the behaviors that characterize autism, though autistic people might understand their own motivations at least as well as those observing them.

Jaswal & Akhtar (J&A), like Chamak et al. (Reference Chamak, Bonniau, Jaunay and Cohen2008), consulted the published testimonies of autistic people to interrogate the belief, reiterated in both expert literature and popular media, that autistic people lack social motivation and that this deficit is a central feature of the condition. They conclude that there is much to suggest that the opposite is true. Autistic people are socially interested and socially motivated, and behaviors that scientists conventionally describe as demonstrating social disinterest may have been misinterpreted by (often neurotypical) scientists. Accounts authored by autistics suggest, for example, that they avoid eye contact because the sensation is uncomfortable and that motor stereotypies serve a calming and regulatory function. Loneliness, in fact, could be a real problem for autistic people, a finding borne out by other studies (e.g., Mazurek Reference Mazurek2014). However, authors of autobiographies, the primary source for autistics’ testimony used by J&A, may be more invested in reframing conventional accounts of autism than others. It would be worth exploring whether these alternative explanations persist in answers to interviews from a broader sample.

Asking autistic people about their own understanding of their behaviors and their own priorities for research that frequently demands their time and participation is undoubtedly the ethical course of action – Nicolaidis (Reference Nicolaidis2012) compares it to the ethical importance and value of involving representatives of racial or ethnic minority groups in research that affects them. Research informed by autistics’ accounts might be both ethically more robust and epistemologically more nuanced, because it would not simply reproduce established prejudices. Rodogno et al. (Reference Rodogno, Krause-Jensen and Ashcroft2016), all of them ethicists and parents of autistic children, observe that their shared experience as parents offers a new perspective on the idea of well-being as it has been conventionally studied in philosophy. They argue, importantly, that it is crucial to consider that a “good life” with autism may not look exactly like a good life in neurotypical terms, and that it is essential to systematically consult autistic people if researchers want to develop outcome measures that facilitate what Ashcroft (Reference Ashcroft2012) has called “autistic flourishing.” To do so, Rodogno et al. (Reference Rodogno, Krause-Jensen and Ashcroft2016, p. 407) argue that we need to start from the experiences of autistics. Of sociability, for example, they write (drawing on Calder et al. Reference Calder, Hill and Pellicano2013) “the ‘socialising’ and ‘being together’ that adds to an autistic's quality of life might not quite have the same nature as what mainstream society would have it.”

Put differently, it's possible that a version of social motivation accounts is valid for part of the heterogeneous population defined by the autism diagnosis. J&A demonstrate that behaviors that apparently signal social disinterest do not necessarily mean this, but they do not necessarily demonstrate active social interest either. As Ashcroft and colleagues (Ashcroft Reference Ashcroft2012; Rodogno et al. Reference Rodogno, Krause-Jensen and Ashcroft2016) argue, it may be true that autistic people do not share the same desires and pleasures as neurotypical people, and it is therefore imperative that autistics provide input on how outcomes for education and interventions are measured. Sosnowy et al. (Reference Sosnowy, Silverman, Shattuck and Garfield2018) found that autistic young adults wanted friendships, but sometimes defined these relationships differently, providing further support for Rosqvist et al.’s (Reference Rosqvist, Brownlow and O'Dell2015) observation that autistic sociability and friendships may need to be defined differently from conventional (neurotypical) expectations. For example, and beginning with the observation that autistic children engage in more “parallel play” and less direct social interaction, autistic adults may perceive social value in interactions that involve sharing space rather than conversation (Brownlow et al. Reference Brownlow, Rosqvist and O'Dell2013). Recognizing that social motivation accounts are flawed does not mean that autistic sociability will reflect the same patterns as neurotypical sociability.

As J&A note (in sect. 1), this matters deeply for therapeutic practices and interventions. They point out that different research assumptions yield research in support of different types of interventions. Better approaches might acknowledge autistic peoples’ actual social interest and seek to address how neurotypical conversational and interactive partners do not adequately respond to social overtures and may, indeed, frustrate autistics’ attempts at social interactions by preemptively judging them to be undesirable conversational partners (Sasson et al. Reference Sasson, Faso, Nugent, Lovell, Kennedy and Grossman2017).

Ethicists have addressed (though imperfectly) the ethical implications of prospective biomedical or genetic “cures” for autism and the implications of this for “autistic integrity,” meaning the positive sense of self and identity of autistic people (Barnbaum Reference Barnbaum2008). However, much less ethical discussion has been devoted to interventions that do not promise full normality or cures but instead seek to remediate aspects of autism that lead to subjective experiences of suffering on the part of autistic people. These comprise the majority of behavioral and psychological interventions for autism, and autistic authors have written eloquently of the ability of such treatments to cause lasting harm in some cases. Foregrounding the importance of supporting specifically autistic forms of flourishing while also acknowledging shared desires for belonging and dignity can help us ensure that psychological research and the treatments that follow from it do not reproduce the social harms they hope to ameliorate.