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,

This initial open feasibility trial reports on feasibility and preliminary effectiveness of the manualized, group-based psychoeducational intervention for grandparents of preschool-aged children with ASD provided by the outpatient habilitation services in Stockholm, Sweden. One hundred and twenty non-custodial grandparents participated in a 6-h intervention program. The study demonstrated good feasibility: 114 (95%) grandparents competed both pre- and post-intervention measures and evaluations and reported high intervention acceptability. The results also indicated that grandparents increased their knowledge about ASD from pre-intervention to post-intervention, gained skills about strategies of supporting their grandchildren and adult children, and appreciated the opportunity to meet and share experiences with other grandparents. Follow-up with a randomized controlled trial design is needed to firmly establish efficacy of this intervention.

The codes included into Chapters 1, 2 and 5 of the ICF-CY environmental component can be easily assigned to the relevant EFI items. There is a necessity to add more codes in Chapters 3 and 4 of the Environmental Factors component, and the inclusion of a separate component of Personal Factors into the classification is suggested.

Very little is known about the status of autism research in Central Asia. The purpose of this scoping review was to examine the scope and focus of the peer-reviewed research studies conducted with autistic people and their families in five Central Asian countries—Kazakhstan, Kyrgyzstan, Tajikistan, Turkmenistan, and Uzbekistan. The electronic databases of EBSCO Host and Web of Science were used for systematic search of literature. Eleven articles that met eligibility criteria were included in the review and analyzed for topics and research areas outlined in the Interagency Autism Coordinating Committee Strategic Plan. Ten of these studies were conducted in Kazakhstan and one in Uzbekistan using qualitative, quantitative, and mixed-methods research designs. Five of the seven research areas—Diagnosis, Biology, Risk Factors, Services, and Treatment and Interventions—were represented in these studies, while there were no studies identified in the areas of Lifespan Issues or Infrastructure and Surveillance, highlighting a gap in research. None of the studies reported co-authorship of scientists from Central Asian countries. The review identified knowledge gaps and research needs to guide future research in autism in Central Asia to address the needs of autistic individuals and their families living in this region. Lay abstract Very little is known about the status of autism research in Central Asia. Through the library databases, we identified and reviewed 11 scientific studies conducted with autistic people and their families in five Central Asian countries—Kazakhstan, Kyrgyzstan, Tajikistan, Turkmenistan, and Uzbekistan. Of the 11 studies, 10 were conducted in Kazakhstan and 1 in Uzbekistan. Within these limited number of research studies, different topics such as diagnosis, risk factors of autism, biology, and various service and intervention areas were addressed. We identified several knowledge gaps and research priorities to address the needs of autistic people, their families, and professionals in Central Asia.