Letter to the Editor: A possible threat to data integrity for online qualitative autism research

Abstract

Researchers are increasingly relying on online methods for data collection, including for qualitative research involving interviews and focus groups. In this letter, we alert autism researchers to a possible threat to data integrity in such studies: “scammer” participants, who may be posing as autistic people and/or parents of autistic children in research studies, presumably for financial gain. Here, we caution qualitative autism researchers to be vigilant of potential scammer participants in their online studies and invite a broader discussion about the implications of such fraudulent acts. Lay abstract Doing research online, via Zoom, Teams, or live chat, is becoming more and more common. It can help researchers to reach more people, including from different parts of the world. It can also make the research more accessible for participants, especially those with different communication preferences. However, online research can have its downsides too. We have recently been involved in three studies in which we had in-depth discussions with autistic people and/or parents of autistic children about various topics. It turns out, though, that some of these participants were not genuine. Instead, we believe they were “scammer participants”: people posing as autistic people or parents of autistic children, possibly to gain money from doing the research. This is a real problem because we need research data that we can trust. In this letter, we encourage autism researchers to be wary of scammer participants in their own research.

Data Integrity Issues With Web-Based Studies: An Institutional Example of a Widespread Challenge (Preprint)

“…In a series of three studies, Chandler & Paolacci [19] found that between 3-40% of participants misrepresented themselves, for example saying they were residents of the United States when they were not. Bowen and colleagues [23] recorded the numbers of repeated responses (627/1900, 33%) and demonstrated the wide extent by classifying them into four categories, infrequent (2-5 responses from same person), persistent (6-10), repeater (11)(12)(13)(14)(15)(16)(17)(18)(19)(20)(21)(22)(23)(24)(25)(26)(27)(28)(29)(30) and hackers (45-67). These issues have also been reported in qualitative online interviews [24][25][26], for example, Roehl and Harland [24] reported 5 out of 14 participants as inauthentic.…”

“…Bowen and colleagues [23] recorded the numbers of repeated responses (627/1900, 33%) and demonstrated the wide extent by classifying them into four categories, infrequent (2-5 responses from same person), persistent (6-10), repeater (11)(12)(13)(14)(15)(16)(17)(18)(19)(20)(21)(22)(23)(24)(25)(26)(27)(28)(29)(30) and hackers (45-67). These issues have also been reported in qualitative online interviews [24][25][26], for example, Roehl and Harland [24] reported 5 out of 14 participants as inauthentic. Finally, many studies report great difficulties after advertising on social media.…”

Two validation studies of a performance validity test for autistic adults

“…Aggravation and simulation of autistic traits or autism-related challenges have not been examined thus far, likely because this is a highly controversial topic. However, based on aggravation and simulation rates of other conditions such as ADHD (Sullivan et al, 2007;Tucha et al, 2009), the less than perfect practice of diagnosing autism in adulthood (Bal & Taylor, 2019), and the potential benefits of an autism diagnosis (e.g., reduced stigma compared to other psychiatric diagnoses (Gillespie-Lynch et al, 2021), financial gains for research participation (Pellicano et al, 2023)), it is at least conceivable that autistic traits are simulated or exaggerated by some adults. To reduce the likelihood of false positives and false negatives, it is crucial to develop validated PVT's for autism.…”

“…Invalid diagnoses also lead to unwanted 'noise' in research data, decreasing potential group differences between autistic and non-autistic participants as well as the effectiveness of autism-specific interventions (Fombonne, 2023). Recently, this problem has been highlighted in online qualitative autism research, where some participants were suspected of posing as autistic, presumably for financial reasons (Pellicano et al, 2023). Furthermore, invalid diagnoses make it difficult to detect a specific pattern of cognitive strengths and weaknesses related to a specific diagnosis (Hoelzle et al, 2019).…”

“…Additionally, in various health care policies an autism diagnosis gives access to or is a requirement to obtain social benefits, support, treatment, or care. In research, autistic participants may be financially compensated for their participation (Pellicano et al, 2023). In forensic cases, an autism diagnosis may lead to reduced accountability for criminal actions.…”