Assessment and diagnosis of autism in developing countries: the Indonesian adaptation of Autism Detection in Early Childhood (ADEC)

Abstract

The most recent estimates of the prevalence rates of Autism Spectrum Disorder reveal that 1 in 68 children in the US are diagnosed with ASD. However, although the awareness of ASD has been increasing around the world, most studies of the prevalence rates and diagnosis of ASD originate in developed countries, and little is known about the situation in developing countries. Indonesia is the fourth most populated country in the world. However, as is the case in most developing countries, disability still receives limited attention from the Indonesian Government. In terms of ASD, there is no recent estimate of the prevalence rate of ASD in Indonesia following the estimates released 22 years ago which suggested that 1 in 833 children in Indonesia were being as diagnosed with ASD. Currently studies on ASD are still lacking and almost 500 cities and regencies in Indonesia are unable to identify and provide appropriate support services for people with ASD.As a starting point to understanding the situation relating to ASD in developing countries, the first study in this thesis aimed to investigate the application of best practice guidelines in Indonesia. A survey was developed and undertaken with 67 practitioners with experience in assessing ASD. It was found that, similar to situations in developed countries, the three best practice components relating to ASD diagnosis were challenging to apply in the Indonesian context. Further, having more validated and culturally sensitive tools to assess ASD in Indonesian language was found to be one of the crucial needs of ASD specialists in Indonesia.As a response to this finding, an Indonesian version of ADEC (ADEC-IND) was developed and evaluated for its psychometric properties and cultural appropriateness. The ADEC is an observation tool that has been shown to be effective in detecting ASD in children as young as 12 months. The tool has been validated within Australian and in Mexican children. In comparison to the gold standard measurement tools, the use of ADEC is more iii affordable, less time consuming in administration, and does not require lengthy and expensive training for its use. Considering these benefits and as a response to the first study results, the second and third studies that comprise this thesis were conducted in order to translate and validate the use of ADEC within the Indonesian context.The ADEC was translated into the Indonesian language and then pilot tested with eight Indonesian children (Mage = 31.8 months, SD = 11.36) in Brisbane and Melbourne. In the translation process, after being translated, the first Indonesian version of ADEC (ADEC-IND) was reviewed independently by two reviewers and a revised draft was made based on the reviewers' feedback. Subsequently, the revised draft was then pilot tested with each testing session videotaped and given an English subtitle. Each participant was tested using ADEC-IND and their parents interviewed using the ADI-R. All of the sessions were videotaped and given English subtitles. The study found that the ...

Preliminary Validation and Feasibility of the Autism Detection in Early Childhood-Virtual (ADEC-V) for Autism Telehealth Evaluations in a Hospital Setting

“…The ADEC has further demonstrated robust clinical properties when abbreviated to a five-item format, which has potential for application in settings such as during child wellness checks (Nah et al, 2019;Nevill et al, 2019). The ADEC has been translated and validated for use in Spanish (Hedley et al, 2010), Japanese (Kawashima et al, 2021), Indonesian (Sidjaja, 2015), and has been piloted for use in Singapore (Nah et al, 2014). It has been found to perform similarly to the ADI-R and CARS (Nah et al, 2014) as well as the ADOS-2, particularly the toddler module (Hedley et al, 2015), in differentiating ASD from other conditions in toddlers.…”