Culturally diverse families of young children with ASD in Sweden: Parental explanatory models.

BACKGROUND: Research suggests that families' knowledge and cultural perceptions of autism spectrum disorder (ASD), and beliefs about its etiology and prognosis, can affect parents' recognition of the first signs of autism in their children and influence help seeking and treatment decisions. OBJECTIVE: This study investigated explanatory models of autism among parents of young children with ASD in the multicultural context of Sweden. METHOD: Seventeen parents from diverse cultural, ethnic and linguistic backgrounds participated in semi-structured interviews. A deductive approach to qualitative content analysis was used to analyze data. Five domains of the Explanatory Model supplementary module of the Cultural Formulation Interview (CFI) were used as coding categories, operationalized as 'Parents' understanding of autism'; 'Autism prototypes'; 'Causal explanations'; 'Course of autism', and 'Help seeking and treatment expectations'. RESULTS: The results showed that parents' prior knowledge of autism and experience of young children's typical developmental trajectories, as well as the opinions of children's grandparents and preschool teachers, affected symptom recognition and help seeking. There were differences in parents' explanatory models before and after ASD diagnosis. Initial interpretations of the disorder included medical conditions and reaction to environmental influences, while genetic, supernatural/religious factors, and vaccinations were mentioned as definite causes after obtaining a clinical diagnosis. Parents also held multiple explanatory models, influenced by the views of family members and information obtained from media or from health care professionals. Parents' treatment decisions included use of available state-funded support services, and complementary and alternative treatments. CONCLUSION: The results demonstrate the utility of the CFI's Explanatory Model supplementary module in autism research. Implications for clinical practice are discussed.

Needs of Grandparents of Preschool-Aged Children with ASD in Sweden.

Little is known about needs of grandparents of young children with autism in family and community settings. This study investigated perceived needs of grandparents of preschool-aged children diagnosed with ASD in the cultural context of Sweden. Participants were 120 grandparents of children enrolled into autism intervention programs provided by the public disability services in Stockholm. The Grandparents' Needs Survey and the SDQ Impact supplement were used to collect data. Grandparents expressed most needs in topic areas of information and childcare. No significant relations were found between grandparents' demographics and perceptions of needs; grandparents' needs were predicted by their perceived burden. The findings provide insight into understanding of grandparents' needs essential for planning and provision of quality family-centered early intervention services.

The Sävsjö-school-project: a cluster-randomized trial aimed at improving the literacy of beginners-achievements, mental health, school satisfaction and reading capacity at the end of grade three using an alternative school curriculum.

BACKGROUND: A curriculum was planned using modern concepts based on the "old" principles to test if such an educational intervention provided pupils with good mental health and a solid basis for good reading and writing skills, as well as generated a positive attitude to learn. These "old" principles were based on previous knowledge derived from school psychiatry (which in Sweden was a branch of child and adolescent psychiatry 1915-1970), educational psychology and the educational approach from the differentiating Swedish School system of 1946-1970 (itself based on the principles of curative education "Heilpädagogie", which was later renamed mental health care). METHODS: All six available schools in the small Swedish city of Sävsjö participated in the study. In these six schools there were eight preschool classes that included every 6-year old child living in the city. In total there were 184 families with 186 children (including 2 pairs of twins) who belonged to these preschool classes and were invited to take part in the study. One family moved just before school-start and 8 decided not to participate, thus 177 children (84 boys and 93 girls, aged 5.6-6.6 years) entered the study. The preschool classes were randomized into an experimental group with four preschool classes and a comparison group with four preschool classes. The experimental group followed a teaching program from the start of the preschool year until the end of grade 3 that was tailored to each student's individual capacity based on the concepts of school maturation and curative education used in the Swedish schools during the period 1946-1970. The comparison group followed today's average Swedish school curriculum. The project was planned as an intervention study covering the preschool year and the first 3 years of elementary school, which was to form a basis for a follow-up when the pupils had left senior high, the 12th year in Swedish public school. The outcome and the achievements were measured at end of grade 3 using standardized tests on reading, writing and mathematical skills. Behavior was assessed at school start and at end of grade 3 using the Child Behavior Check List (CBCL-scales) in addition to a questionnaire on Attention Deficit Hyperactivity Disorder (AD/HD) with criteria from DSM-IV. The children made a self-evaluation of their attitude towards learning. RESULTS: At the end of school year 3, the children in the experimental group had an improved reading capacity (p = 0.002, effect size(es) = 4.35) and reading comprehension (p = 0.03, es = 0.04). They evaluated their own reading (p = 0.02, es = 0.23), writing (p = 0.007, es = 0.35) and mathematical skills (p = 0.003, es = 0.48) as going "very well" when compared to comparison group. Differences regarding intelligence quotas between the groups at the start of school had disappeared by the end of grade 3. No differences referring to CBCL were found at end of grade 3. One child in the comparison group fulfilled criteria for AD/HD, according to parents and teachers. CONCLUSIONS: The alternative curriculum covering the preschool year through the first 3 years of elementary school based on the old principles from curative education ("Heilpädagogie"), educational psychology and school psychiatry gave the children in the experimental group a better reading capacity and reading comprehension.Trial registration The study started in 1998. The data were collected longitudinally and prospectively but have not been analyzed until now, with the children having left senior high. A retrospective registration in the ISRCTN is pending.