The categorisation of resistance: interpreting failure to follow a proposed line of action in the diagnosis of autism amongst young adults

Abstract

Many characteristics typical of autism, a neurodevelopmental condition characterised by socio-communicative impairments, are most evident during social interaction. Accordingly, procedures such as the Autism Diagnosis Observation Schedule (ADOS) are interactive and intended to elicit interactional impairments: a diagnosis of autism is given if interactional difficulties are attributed as a persistent quality of the individual undergoing diagnosis. This task is difficult, first, because behaviours can be interpreted in various ways and, second, because conversation breakdown may indicate a disengagement with, or resistance to, a line of conversation. Drawing upon conversation analysis, we examine seven ADOS diagnosis sessions and ask how diagnosticians distinguish between interactional resistance as, on the one hand, a diagnostic indicator and, on the other, as a reasonable choice from a range of possible responses. We find evidence of various forms of resistance during ADOS sessions, but it is a resistance to a line of conversational action that is often determined to be indicative of autism. However, and as we show, this attribution of resistance can be ambiguous. We conclude by arguing for reflexive practice during any diagnosis where talk is the problem, and for a commitment to acknowledge the potential impact of diagnostic procedures themselves upon results.

Drawing a line in the sand: affect and testimony in autism assessment teams in the UK

“…We have found, in line with these researchers, that clinicians foreground discussion of behaviours that are ‘story‐worthy’ and these include both their own observations as well as harnessing informant testimony that contribute to the diagnostic account. We also found, in line with Hollin and Pilnick's () study, that, in the process of retelling the behavioural story, clinicians interpret that behaviour in the light of autistic behaviours.…”

“…However, a UK study by Hollin and Pilnick () found that the diagnostic decision can shift depending on how similar types of behaviour are interpreted. In ADOS assessment sessions, facilitated by ADOS‐trained researchers, they demonstrate how judgments are made about which kinds of behaviour are consequential for diagnosis.…”

“…In ADOS assessment sessions, facilitated by ADOS‐trained researchers, they demonstrate how judgments are made about which kinds of behaviour are consequential for diagnosis. The authors discuss the significant level of interpretation required to identify and separate these kinds of behaviours with consistency (Hollin and Pilnick ). This suggests that despite attempts at standardisation, interaction and interpretation play a significant part in assessment.…”

Documenting diagnosis: testing, labelling, and the production of medical records in an autism clinic

“…Fombonne ) – it would invariably involve the workings of the clinic, making relevant a social‐interactional explication of its organisation, such as we have provided here and in related studies (Maynard and Turowetz , forthcoming, Turowetz and Maynard , cf. also Hollin and Pilnick's () study of clinical testing and interpretation using the ADOS).…”

From the Profound to the Mundane: Questionnaires as Emerging Technologies in Autism Genetics

“…For example, the Autism Diagnosis Observation Schedule (ADOS; Lord et al 1989, 2000) is often described as the “gold standard” diagnostic instrument within both clinical and research settings (Fombonne 2009, 592; Norbury and Sparks 2013, 7) and would be an obvious tool to gather the behavioral data required to interpret genomic analyses. An ADOS session takes around forty minutes to complete and requires two highly trained observers who attend and rewatch and discuss diagnostic sessions (Hollin and Pilnick 2018). Such a process is simply too time- and resource-intensive for many of the studies imagined within genomics, which require huge sample sizes.…”