Autism is a global phenomenon. Yet, there is a dearth of knowledge of how it is understood and its impact in low-income countries. We examined parents' and professionals' understanding of autism in one low-income country, Nepal. We conducted focus groups and semi-structured interviews with parents of autistic and non-autistic children and education and health professionals from urban and rural settings ( n = 106), asking questions about typical and atypical development and presenting vignettes of children to prompt discussion. Overall, parents of typically developing children and professionals had little explicit awareness of autism. They did, however, use some distinctive terms to describe children with autism from children with other developmental conditions. Furthermore, most participants felt that environmental factors, including in-utero stressors and birth complications, parenting style and home or school environment were key causes of atypical child development and further called for greater efforts to raise awareness and build community capacity to address autism. This is the first study to show the striking lack of awareness of autism by parents and professionals alike. These results have important implications for future work in Nepal aiming both to estimate the prevalence of autism and to enhance support available for autistic children and their families.

IntroductionCo-occurring psychiatric conditions and concerning behaviours are prevalent in individuals with autism spectrum disorders (ASD), and are likely to be detrimental to functioning and long-term outcomes. The cognitive rigidity and deficits in emotional literacy and verbal behaviour that commonly occur in ASD can adversely affect clinicians’ confidence to identify concerning behaviours and mental health problems. There is a need to develop a measure that is tailored towards individuals with ASD, and differentiates between symptoms of psychopathology and core ASD symptoms. Furthermore, it should be modified to capture internalising symptoms that individuals with ASD may find difficult or be unable to verbalise. This protocol describes the intended development and validation of the Assessment of Concerning Behaviour (ACB) scale. The ACB will aim to be a multidimensional measure of concerning behaviours in ASD incorporating self-report, parent/carer, teacher/employer and clinician report versions that can be used across the lifespan and spectrum of intellectual ability.Methods and analysisThis study will be guided by the methods described in the US Food and Drug Administration Guidance for Industry Patient-reported Outcome Measures. A literature review, cognitive interviews and focus groups with individuals who have experience of working or living with ASDs will be used for item generation. A sample of children and adults with ASD will complete the ACB, in addition to other gold standard measures of concerning behaviour in order to establish the initial psychometric properties of the scale.Ethics and disseminationThis study has received ethical approval from the NHS Research Ethics Committee: London-Camden and King's Cross (ref: 15/LO/0085). Study findings will be disseminated to healthcare professionals and scientists in the field through publication in peer-reviewed journals and conference presentations.

Few data exist on the prevalence of autism in low-income countries. We translated, adapted and tested the acceptability of a Nepali-language version of a screening tool for autism (Autism Quotient-10). Using this tool, we estimated autism prevalence in 4098 rural Nepali children aged 9–13 years. Fourteen children scored > 6 out of 10, indicative of elevated autistic symptomatology, of which 13 also screened positive for disability. If the AQ-10 screening tool is as sensitive and specific in the Nepali population as it is in the UK, this would yield an estimated true prevalence of 3 in 1000 (95% confidence interval 2–5 in 1000). Future research is required to validate this tool through in-depth assessments of high-scoring children.Electronic supplementary materialThe online version of this article (10.1007/s10803-018-3610-1) contains supplementary material, which is available to authorized users.

Although 70% of autistic children and young people meet criteria for co-occurring psychiatric conditions, there are few screening measures specifically for autistic individuals. We describe the development and validation of the Assessment of Concerning Behavior (ACB), an instrument co-developed with the autistic community to assess mental health and problematic/risky behaviors. Items include descriptions to facilitate symptom recognition by autistic people, and carers/professionals. The ACB was completed by 255 parents, 149 autistic children and young people and 30 teachers. Internal consistency, stability and validity was assessed. The ACB parent-version fit a two-factor model (internalizing and externalizing problems) and showed adequate test–retest reliability, internal consistency and construct validity. The ACB is a promising new measure for research and clinical use in autism.

BackgroundAutism is a global phenomenon. Epidemiological studies estimate that 1–2% of children worldwide lie on the autism spectrum,1 with approximately 52 million individuals with autism across the globe. These estimates are largely driven, however, by prevalence estimates from high-income countries (HIC). Virtually no data exist, however, on the prevalence of autism in low-income countries (LIC) and none in a LIC rural setting.AimsDevelop a Nepali language version of a screening tool for autismEstimate prevalence of autism in a rural population of 10–13 year-old Nepali childrenMethodsThe Autism Quotient-10 (AQ-10) is a well-validated brief questionnaire of the 10 statements most strongly predictive of a diagnosis of autism in a UK population of children (sensitivity: 95%; specificity: 97%).2 We translated the AQ-10 – adolescent version in discussion with UK and Nepali paediatricians and clinical psychologists. The translated version was further developed and tested for acceptability in 3 focus groups of parents (n = 25). It was then piloted as a questionnaire with 136 families, following which minor edits were made only and additional fieldworker training provided.We conducted face-to-face interviews with 3984 parents from a cohort of 10–13 year-old children recruited from a 10-year follow-up study of a trial of women’s participatory groups.3 These families live in Makwanpur, a rural district of Nepal.ResultsEleven out of 3984 children scored greater than 6 out of 10, indicative of autistic symptomatology. If the AQ-10 screening tool is as sensitive and specific in the Nepali population as it is in the UK, this would give an estimated true prevalence of 3 in 1000 (95% confidence interval 2 to 5 in 1000).4 ConclusionThis is the first study to estimate prevalence of autism in a rural LIC setting. Prevalence estimates were lower than those in HIC. Future research is required to validate this tool through in-depth comprehensive assessments of high-scoring children. This preliminary estimate, combined with complementary research showing the lack of awareness of autism by Nepali professionals and parents, stresses the need to develop services to support families and children with atypical development in rural LIC settings.