PSYCHO-PEDAGOGICAL WORK AMONG INDIVIDUALS WITH AUTISM SPECTRUM DISORDERS IN COMMUNITY-BASED ACCOMMODATION. Development and psychometric testing of the Environmental Rating Scale Questionnaire (ERS-Q) for assessment of residential programmes

Sammanfattning: The increased prevalence of individuals with Autism Spectrum Disorders (ASD) challenges society to evaluate the quality and efficacy of community based psycho-pedagogical programmes in order to achieve progress and to attain an acceptable level of quality of life for its citizens. The overarching aim of this thesis was to gain knowledge about staff’s pedagogical work and to provide a method for assessment of the quality of residential programmes for individuals with ASD in community-based accommodation. The single-case study (Papers I–III) provides information about a case history exploring the four staff members’ perception of the everyday life of an adolescent boy with autism studied during 3.5 years through the staff’s daily diary notes and personal interviews with them. Relationships between staff’s pedagogical work, their work situation and the adolescent boy’s quality of life were illuminated and findings demonstrated how poor links between pedagogy and work organisation had a negative effect on his life situation as well as on the caregivers’ teamwork and private life situation. Staff’s use of pedagogical strategies was identified as successful or unsuccessful, indicating periods of development as well as stagnation of his abilities. As long as the staff predominantly used successful pedagogical strategies the boy showed no or few signs of regression in his abilities and behaviour. On the contrary, he showed a few signs of taking the initiative to communicate. The boy’s stagnation in several important skills was interpreted as an outcome of the failure to integrate the boy into society and illuminated staff’s need of sufficient training in special pedagogy with support for a high degree of structure. The findings from the single-case study inspired an evaluation of the pedagogical work at group homes in Sweden. The development of the (ERS-Q) (Papers IV-V) was prompted by the need for an instrument to assess the quality of residential treatment programme in large-scale studies. The American interview instrument Environmental Rating Scale (ERS) was adapted from an interview version to a staff-completed questionnaire version (ERS-Q). Tests regarding data quality, validity, reliability and ease of understanding showed good measurement properties and conceptual and theoretical agreement as well as comparable reliability with the ERS, indicating that the effectiveness of residential treatment programmes can be measured in a valid way by the ERSQ. Further, the results suggest that the ERS-Q is useful in surveys as well as in comparative studies. Key words: Autism Spectrum Disorders, TEACCH, Pedagogical work, Quality of Life, Community-based accommodation, Staff,