A White Lie? Subjective Experience of Deception in Adults with ASD

Background: Masking or distorting information, like specific goals of an experiment or conditions, is common in psychology. Individuals in the autism spectrum are believed to particularly value truth and might therefore be negatively affected by deception. Because of the vulnerability of many participants, maintaining confidence in the hospital institution is essential. Besides, raising awareness on the subjective experience of participants in research using deception is a component of research/users partnership. Therefore, the ethical issue of using deception in individuals with ASD is major and conciliating scientific objectives with respect of integrity and rights of participants can be a challenge. However, the existing scientific literature shows little consideration for this issue and provides no consensual practice parameters.

Objectives: The goal of this study was to evaluate the impact of deception in individuals with ASD, under careful preparation and monitoring.

Methods: collaboration between researchers and local ethical board led to the development of a procedure for standardized debriefing and subjective experience assessment. First, an initial (deceived) belief assessment measures the efficiency of the deceptive manipulation. Then, the nature of the deception is disclosed to the participants, and a final belief assessment measures whether they understand that they had been previously deceived. Lastly, a Subjective Experience Self-Questionnaire, based on Lickert scales and free comments assesses satisfaction (specifically whether participants had fun, felt useful, welcome, well informed, respected and well paid) and intention to participate in future studies. Adults with ASD and controls without ASD matched for age, IQ and gender took part to the study (n=48). Participants in the ASD group had been assessed with ADOS-G and met DSM-IV criteria for an ASD. All participants had FSIQ>85. Participants with self-reported depression (Beck depression Inventory score>20) were excluded. Following an experiment using active deception, initial and final belief assessment as well as subjective experience questionnaires were administrated to participants. Testing was monitored by the ethics board, using individual reports. Initial belief (affected by deception), final belief (corrected by debriefing) and subjective experience were compared between ASD and control groups.

Results: Initial belief attested that a large majority of participants of both groups were similarly deceived by the protocol, as intended. Final belief attested that all participants understood that they had been deceived. Global satisfaction was high in both groups but lower in ASD individuals (80% vs 89%, F(1,46)=5.68,p<.05). In both groups, fun was lower than satisfaction regarding reception, information, respect and pay. Intention to participate in the future was high (95% and 91%, p:ns). Participants less likely to participate again mentioned boredom and low pay.

Conclusions: Under careful preparation and monitoring, the use of deception in our experimental protocol did not reveal greater impact of deception in adults with ASD. Limits of the study include satisfaction data collection by the experimenter herself and lack of follow-up. Altogether, although risk-benefit balance and appropriate action should be individually considered for each study, the present work provides materials and guidelines for future experiments using deception in participants with ASD.