Most research on autism in young children focuses on wealthy countries, leaving a gaping hole in our knowledge about how less affluent nations detect and care for people with the disorder. 

A shortage of trained doctors, lack of awareness and long waiting lists for specialized care delay diagnosis and treatment of autism in low- and middle-income countries, report two new studies.

Early diagnosis is considered key for improving the long-term outcome for children with autism. It opens the way for intensive behavioral interventions that can substantially improve social and communication abilities in the children. 

An analysis in the February issue of the International Journal of Speech-Language Pathology reviewed seven studies in five countries — Colombia, India, Jamaica, Jordan and Mexico — for trends in diagnosis and care of autism. The average annual family income in each of these countries is $12,600 or less a year.

Parents in these countries tend to become concerned about their child’s development by age 21 to 24 months, the analysis found. However, children there don’t receive an autism diagnosis until 45 to 57 months, on average.

In contrast, parents in high-income countries frequently detect developmental problems in their children a little earlier, at around 19.6 months of age, and the children are generally diagnosed by 36 months.

In the high-income countries, the average age of diagnosis has decreased with time, perhaps as a result of growing awareness of the disorder and improved access to health care. 

The reasons for a delayed autism diagnosis in resource-poor countries vary.In Jamaica, for instance, as in the U.S., parents with high levels of education, a proxy for high socio-economic status, recognize developmental problems earlier than do those who are less well educated.

In India, parents typically pick up on telltale signs of autism only after the child’s doctor draws attention to them. They also tend to notice symptoms if the child has had other medical problems — for example, a complication at birth that required an extended hospital stay or a history of seizures. These other disorders can also eclipse autism, however, and delay diagnosis.

Even once the child is diagnosed, treatment doesn’t immediately follow. In one Indian study, about 60 percent of parents reported that doctors reassured them that treatment was not needed or simply never referred them to a specialist. Many doctors in low- and middle-income countries have limited knowledge about autism, the researchers note.

Training pediatricians and developing low-cost programs that help them screen and treat children might help the medical community increase autism awareness and better assess its prevalence.

The second study, published 7 January in the Journal of Intellectual Disability Research, makes specific recommendations along these lines for the World Health Organization and other agencies.

The researchers invited 72 experts worldwide to rate medical practices and policieson developmental disabilities in low- and middle-income nations. The survey included questions on how these countries can improve early detection and the best way to train professionals to work with affected individuals.

Using the experts’ recommendations, the researchers created five goals, spanning earlier identification and treatment, improving public awareness, prevalence studies and support for affected families.