AutiStress questionnaire: structure and coding

LF Lucia Fumagalli
MN Monica Nicoli
LV Laura Villa
VR Valentina Riva
MV Michele Vicovaro
LC Luca Casartelli
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AutiStress questionnaire is an ad hoc created parent-report instrument that we originally developed and distributed in Italian (in the interest of international readers, we also provide an English version of the questionnaire in Table S1. Cfr. Supplementary Materials for details). AutiStress was developed to investigate changes occurred in specific domains and sub-domains (also defined as types-of-change) following the severe anti-contagion movement restrictions policies. It is context-specific being set in the COVID-19 pandemic scenario, and condition-specific being structured taking into account the autistic functioning peculiarities in the paediatric age. Thus, we differentiated core Vs. non-core autistic features (both in domains and in sub-domains) according to the idea that ASD is not a condition primarily characterized by phenotypical “social” manifestations. AutiStress was distributed using Google Forms between 3rd and 29th April, 2020.

After a preliminary description of the aims of the study, we collected general basic socio-demographic information. Notably, we asked about the house characteristics considering that accessibility to outdoor spaces may be a critical factor during a period characterized by severe movement restrictions. To maximize statistical power and to avoid misattributions due to ambiguous situations, we merged the four choices using a handy dichotomization between apartment regardless of the presence of the balcony (hereafter, apartment) and home with access to private outdoor spaces (hereafter, private garden).

We structured our requests into seven domains referring both to core autistic features (Sensory Interests; Repetitive Behaviours) and non-core ones (Mood; Play; Eating Behaviour; Circadian Rhythm Sleep; Bowel and Bladder Control). For each domain, parents were asked to report—if any—children’s behavioural changes as compared to pre-pandemic situation (e.g., “Did your child show any change in his/her mood? [yes/no]”). Following a negative answer, the online form moved to the subsequent domain. On the contrary, if parents replied positively in that domain they were asked to rate on a 5-point Likert scale how frequently several domain-related types-of-change occurred. Being a questionnaire that synergistically combined the efforts of clinicians engaged in remote support protocols and researchers, certain AutiStress requests were primarily driven by clinical purposes (notably to provide prompt and comprehensive monitoring for potential behavioural changes, even in less expected spheres). This was the case for example of the Bowel and Bladder Control domain, that was not extensively explored in our analyses due to very limited frequencies (12% in ASD group, 3% in TD group). Similarly, we simplified the Sensory Interests domain focusing exclusively on the main question (related to presence or absence of any change concerning sensory interests), without furtherly analysing sub-domains (i.e., each sense).

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