Researchers from Rutgers University have found that 25% of children under the age of 8 with autism in the US are left undiagnosed, something that may be a critical factor in determining their quality of life later on.
Although awareness of autism by the general public has been increasing steadily in recent years, a recent study published in the journal Autism Research suggests that a significant number of children are left undiagnosed.
Having analysed education and medical record of around 266,000 children in the US aged 8 in 2014, the researchers sought to determine how many children who displayed symptoms of the condition failed to receive both a formal diagnosis, and access to appropriate health services.
Of almost 4,498 children identified to have traits indicative of autism by their analysis, they found that those undiagnosed tended to be black or hispanic males with impaired mental abilities, difficulties in socialising and conducting activities for daily living, who were otherwise not considered to have a disability. In addition, those with undiagnosed cases of autism tended to be older at first developmental concern, as well as older during their first evaluation.
So what may explain these results? Walter Zahorodny, co-author of the study, said, “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...Also, many parents whose children are diagnosed later often attribute their first concerns to a behavioral or medical issue rather than a developmental problem."
To overcome this underdiagnosis and ensure that all children with the condition receive appropriate treatment, Zahorodny suggested that all toddlers, preschool and school-age children should be screened for autism. He also recommended that physicians make use of pictures and/ or patient navigators to best enable families to understand the diagnostic process, test results and best treatment practices.
Moreover, he said that states may also improve access to care for those with autism by making it a legal requirement for insurance companies to cover early intervention services when a child is first identified to be at risk of the condition, as opposed to waiting for a formal diagnosis.