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 adaptive behavior.
A wide range of ethnic, cultural, linguistic, and socioeconomic factors 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. In addition, while the nuclear family is key in the diagnosis of ASD, other family members and individuals close to the child, can be instrumental in early diagnosis. However, survey data from such individuals is limited. Our pilot survey of over 100 “friends and family” of children with ASD revealed that 62% of such individuals suspected a developmental delay before the parents. This strongly suggests that important sources of information that could aid in early diagnosis are being missed.
Building on our pilot study, we propose to conduct comprehensive surveys of 5,000 families aiming to investigate causes of delays in diagnosis of ASD and explore correlations between ethnic, demographic and socio-economic groups, diagnostic categories, and family configurations with delays in diagnosis. The research has direct benefits for individuals on the autism spectrum, their families, and related service providers.
Interagency Autism Coordinating Committee (IACC)
Autism Research Database (AFD)
