Children with autism spectrum disorder face a broad range of communication and sensory challenges. Many of these children also have chronic ENT issues. This study aims to better understand these challenges and improve our services for children with autism spectrum disorder.

Questionnaires and semi-structured interviews were carried out with parents of children with autism spectrum disorder.

Thirty-four individuals participated, comprising 9 caregivers and 25 staff members. All parents recognised their critical roles in understanding their children's special needs and sensitivities. Parents and staff stressed the importance of a partnership role that inquired about unique needs, leading to environmental modifications for individual children.

The importance of listening to and involving caregivers is a fundamental tenet; parents must be recognised as the experts. Uncertainty must be kept to a minimum, with clear communication in a structured, low-arousal environment for these children. We have listened to parents and staff, and developed a social story.

To validate the Psychogeriatric Inventory of Disconcerting Symptoms and Syndromes (PGI-DSS), a single scale in A4 format comprising four disconcerting syndromes (violence, refusal, words, and acts). The scale enables an immediate conversion of a qualitative assessment to a quantitative assessment. The PGI-DSS was compared with the Neuro Psychiatric Inventory for Nursing Homes (NPI-NH).

Cross-sectional descriptive and correlational studies.

Thirty geriatric care units and nursing homes.

Raters interviewed nurses and nursing assistants in charge of older adults hospitalized in geriatric care units or living in nursing homes (N = 226).

The French version of the PGI-DSS and the French version of the NPI-NH.

The correlation coefficient between the PGI-DSS and the NPI-NH was 0.70 (p < 0.0001). The PGI-DSS threshold score corresponding to the NPI threshold score was 17 (specificity: 87%, sensitivity: 63%). Four statistical factors, corresponding to the four clinical syndromes, explained 53.4% of the total variance. The internal consistency of the PGI-DSS (Cronbach’s alpha = 0.695) was higher than that of the NPI-NH (Cronbach’s alpha = 0.474). Test–retest reliability was better for the PGI-DSS than for the NPI-NH. The intraclass correlations were 0.80 [0.73; 0.86] and 0.75 [0.67; 0.83], respectively. Interrater reliability was better for the PGI-DSS than for the NPI-NH. The intraclass correlations were 0.65 [0.55–0.76] and 0.55 [0.43–0.68], respectively.

The PGI-DSS was developed to overcome the limitations of the NPI-NH. New, brief, easy to administer in less than 4 minutes, foldable in four parts, pocket-sized, easy-to-read in the palm of the hand, PGI-DSS could have similar or better statistical properties than the NPI-NH. Whereas the 10 domains in the NPI-NH have clinical utility for clinicians, the four easily understandable syndromes in the PGI-DSS can help avoid inappropriate attitudes and can guide psychosocial interventions. It could likewise improve dialogue between caregivers and clinicians.