Genetic evaluation of children with autism spectrum disorders in developing and low-resource areas.
Jordanian kids with autism rarely get the genetic tests doctors should order, and the same gap shows up in the United States.
01Research in Context
What this study did
A team in Jordan asked parents of the children with autism what medical tests their kids had received.
They compared the answers to the genetic tests doctors are supposed to order.
The survey covered the whole country and used simple yes-or-no checklists.
What they found
Only one in four children had the recommended genetic tests.
Instead, most families paid for non-genetic tests that guidelines say are not needed.
The gap was largest in rural areas and low-income homes.
How this fits with other research
Cohen et al. (2005) already gave doctors a clear checklist of which genetic syndromes to look for in autism.
Lee et al. (2022) now shows that, 17 years later, Jordanian kids rarely get those same tests.
Barton et al. (2019) found Black children in the United States also start autism services later, proving the problem is not just about money in one country.
Stephens et al. (2018) linked family adversity to even longer delays, suggesting missed genetic testing is part of a wider pattern of unequal care.
Why it matters
If you serve Arabic-speaking families, open the medical chart and look for genetic referral dates.
Add a checklist item at intake: “Genetic testing ordered?” If the box is blank, call the pediatrician while the family is still in your office. One quick fax can start a cascade that rules out fragile X, saves years of guesswork, and opens doors to targeted support groups.
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02At a glance
03Original abstract
Autism is the most common neurodevelopmental disorder in children worldwide. Genetic factors play an important role in the risk of developing autism. Determining the genetic cause of autism is key to understanding the biological processes that lead to the clinical manifestations of autism, and can inform the management and even prevention of this condition. Establishing genetic causes of autism requires collection of genetic data on a global scale. Limited research on genetic testing for individuals with autism is available from developing countries in low-resource regions. In this study, we explored the types of investigations ordered for Jordanian children with autism by their physicians. A representative sample of parents of children with autism in Jordan was questioned about the studies that their children received. We found that the recommended genetic testing was only performed in a small number of children with autism. In contrast, most children in the sample received non-genetic testing, which is not routinely recommended. We also explored the sociocultural factors that may influence the decision to perform genetic testing in this population. We discuss our findings in light of the data available from other developing and developed countries.
Autism : the international journal of research and practice, 2022 · doi:10.1177/13623613211055535