An early detection tool for autism, developed in Adelaide, Australia, has attracted interest from China, Japan, Mexico, USA, Indonesia and South America.
The early screening tool, known as Autism Detection in Early Childhood (ADEC), is already available in Australia and has been made available free of charge to low-resource countries such as Indonesia, Mexico, China and Guayaquil (Ecuador).
Autism Spectrum Disorder, or autism, is a complex neurodevelopmental condition characterised by challenges in social interaction, communication and restricted or repetitive behaviours.
The WHO estimates the prevalence of autism is around 1 in 100 people but other estimates suggest it may be even higher, up to 4%. The Centre Disease Control and Prevention suggests 1 in 36 children and 1 in 45 adults in the US have autism but the Australian Institute for Health and Welfare reports the incidence is about 1 in 150 people. These rates may vary across cultures.
It affects males four times more frequently than females.
Professor Robyn Young from the College of Education, Psychology and Social Work at Flinders University in Adelaide says early diagnosis – by the age of 18-24 months – is important. Early support can positively impact language, cognitive and social-emotional functioning.
A study published recently in Journal of Autism and Mental Health Disorders investigated the effects of translating and culturally adapting the screening tool for a Spanish-speaking population in Ecuador.
“ADEC is an easy-to-use tool,” says Young.
“It [requires] limited additional training, providing a cost-effective way to identify children who may have a high likelihood of developing autism.
“Whilst many tools have been developed in English-speaking countries, screening in countries with other languages requires specific cultural and linguistic adaptation.
“We hope the adaptation of ADEC for low-resource countries will allow for more efficient, reliable and cost-effective diagnoses and support,” she says.
The pilot study translated and culturally adapted the original version of ADEC for the population of Guayaquil (Ecuador) for a sample of 613 children aged 18-48 months, of whom 23 were diagnosed with autism (3.75%). 19 of these children were detected in early screening using the ADEC.
Young says that the findings indicate that ADEC can be adapted for non-English speaking cultures but that more still needs to be done.
“Whilst the study was successful, improving diagnosis doesn’t simplify the difficulties that autistic people have accessing support, particularly in a low socio-economic environment,” she says.
Autism and early detection
“Early detection only makes sense if there is the possibility of developing early support, so our next steps will be to investigate the effects of early support programs implemented in non-English speaking low-resource countries like Ecuador,” she adds.
Young has been involved with autism research for nearly 3 decades.
“My initial interest began in 1992 when I observed what I believed to be autism in a 6 month old child. However, the diagnostic criteria was not relevant for children of that age.
“In order to be recognised as having autism you needed to have language delays and difficulty developing friendships which may not be evident in children of two or three years of age.
“We wanted to recognise it earlier so we could ensure supports were put in place. Our data collection began in 1999 and we first published the tool in 2007. We developed an online telehealth administered version in 2022.”
Understanding cultural impediments to diagnosing autism also created barriers to early support but Young says the tool can overcome that.
“Gestures such as waving goodbye vary in different countries. Reciprocity of a smile was not an item that was useful diagnostically in Japan. However, the tool has showed to have excellent psychometric properties retained as is, but mindful that some items have less discriminant validity in different cultures.
“Hopefully it now becomes available to low resource countries that can’t afford the more expensive tools that also require training yet do not appear to be doing better than our tool.
“Then once we recognise the autism, ensure we have the right support in place.”
Discussion about this post