News and Knowledge

In 2013, OAR’s Board of Directors authorized funding for seven new applied autism research studies in 2014. This additional $210,000 in research grants brought the total funds awarded by OAR to over $3 million since its first grants in January 2003. This review is the fourth in a series of seven that will appear in The OARacle over the next few months.

The average age of autism diagnosis in the United States is close to five years, and even later among children from ethnic minority backgrounds. Such late diagnosis can limit the benefits of behavioral intervention, which has been shown to lead to dramatic improvements in IQ scores and constructive behavior. A wide range of factors (ethnic, cultural, linguistic, socio-economic, etc.) may lead parents, family members, or health care professionals to ignore or play down concerns about a child’s linguistic and social development, thus delaying diagnosis.

Understanding the factors behind these delays and the role that family and friends mayplay in getting children diagnosed at an earlier age is the motivation behind the survey three OAR-funded researchers are undertaking. The study, “Family Patterns in Diagnosis of Children with Autism Spectrum Disorders (ASD)” is a collaborative effort among principal investigator Nachum Sicherman, Ph.D., professor of finance and economics, Columbia University’s Graduate School of Business, and co-principal investigators Joseph Buxbaum, Ph.D., professor of psychiatry, genetics and genomic sciences, and neuroscience, the Seaver Autism Center at Mount Sinai School of Medicine, and George Loewenstein, Ph.D., Herbert A. Simon Professor of Economics and Psychology, Carnegie Mellon University.

In their initial pilot survey of over 100 friends and family members of children with ASD, the researchers found that 62 percent suspected a developmental delay before the parents, suggesting that these people may be overlooked as sources of information for early diagnosis.

The pilot surveys (one given to parents and the other to friends and family) also identified several important sources of diagnostic delay:

• Child born in a bilingual household
• Child being the first born
• Child not having frequent contact with grandparents (especially maternal)
• Pediatricians’ tendency to provide a milder initial diagnosis
• The high percentage of extended family members, friends and caretakers who indicated in the survey that they had concerns (which they may not have raised with the parents or which may not have been heeded by the parents) about the child before either parent suspected, which was the most striking finding for the researchers

Building on their pilot study, the researchers will conduct comprehensive surveys of 5,000 families. They plan to include a wide variety of questions in order to measure variables such as race, socio-economic status, parents’ education level, geography, and access to medical facilities.

The research sample will be drawn from the Interactive Autism Network (IAN) database, the nation’s largest online autism research database. IAN has more than 33,000 individuals enrolled as of July 2010, including more than 13,000 individuals with ASD (as diagnosed by a medical professional) and their immediate family members.

The researchers expect that the survey results will provide focus for policy and community education efforts aimed at enhancing awareness of the importance of early diagnosis.

They also expect the project to lead to recommendations for primary care providers and early education teachers, so they can help screen for, detect, and diagnose ASD in children at an earlier age. The researchers also hope that surveys of extended family, friends, and teachers will be further integrated in ASD screening mechanisms.