A majority of those who went undiagnosed were male children of African or Hispanic descent. These children displayed deficits in mental abilities, social skills, and daily activities – but are not considered disabled.
The findings were published in the journal Autism Research, while the research was conducted through the Autism and Developmental Disabilities Monitoring Network.
Researchers studied the education and medical records of 266,000 children across 11 states who were eight years old in 2014. Then, they identified 4498 who displayed symptoms of ASD based on social, behavioural, health, and education factors.
Of this, 1135 – or 25 percent – children with these indicators were never clinically diagnosed. This suggests that a quarter of all children with ASD in the US do not have access to services that would improve their quality of life.
ASD on the rise?
“There may be various reasons for the disparity, from communication or cultural barriers between minority parents and physicians to anxiety about the complicated diagnostic process and fear of stigma,” said study co-author Walter Zahorodny, associate professor at Rutgers New Jersey Medical School and director of the New Jersey Autism Study.
Zahorodny went on to explain that when it comes to children who are diagnosed late, it is common for parents to attribute their condition to behavioural or medical issues before they consider the developmental aspect.
According to the World Health Organization (WHO), one in 160 children has ASD. While epidemiological studies indicate that ASD has been on the rise in the past 50 years, research indicates that this can be attributed largely to the expansion of diagnostic criteria and the adoption of the concept of autism as a spectrum of impairment.
Despite this growing awareness, many children with ASD from minority groups and low-income backgrounds continue to go undiagnosed and unsupported. WHO says that the best interventions for the disorder are psychosocial in nature, particularly evidence-based behavioural treatment and parent skills training programmes.
Identifying children with autism
As there is no cure for ASD, it is paramount that children receive early screening and diagnosis because this allows them and their caretakers to access relevant information and services. Such support goes a long way in dealing with communication and social behaviour – two common challenges faced by children with this condition.
So what can be done to better this situation, especially for minority children? Zahorodny outlines some suggestions, which when combined in a multi-pronged approach, can begin to tackle the issue more effectively.
• Clinicians could screen all toddlers, preschool and school-age children for autism to reduce the disparity in diagnosis.
• Clinicians could use pictures or employ patient navigators to communicate the diagnosis process, test results, and treatment recommendations to families.
• States could require insurance companies to cover early intervention services for at-risk children, in order to improve access to care even before the official diagnosis.