Implications of Universal Autism Screening: Perspectives From Culturally Diverse Families With False-Positive Screens

Two-Year Autism Risk Screening and 3-Year Developmental Outcomes in Very Preterm Infants

“…The results of the current study lend themselves to better understanding developmental pathways for children who screen positive on the 2-stage parent-report autism risk screening tool and may or may not develop autism, and it is important to consider the impact of false-positive screens on parents. The emotional toll of receiving news of a positive screen, yet the child not receiving a formal diagnosis may result in parents experiencing frustration and confusion about the child’s symptoms, with the families enduring time-intensive assessments and appointments . Research has found that parents with children who have a false-positive screening results on the 2-stage parent-report autism risk screening tool, although they experienced the emotional waves of positive screens and diagnostic testing, were relieved to have ruled out autism as a diagnosis while continuing to explore answers to their child’s developmental concerns .…”

“…The emotional toll of receiving news of a positive screen, yet the child not receiving a formal diagnosis may result in parents experiencing frustration and confusion about the child's symptoms, with the families enduring time-intensive assessments and appointments. 25 Research has found that parents with children who have a false-positive screening results on the 2-stage parent-report autism risk screening tool, although they experienced the emotional waves of positive screens and diagnostic testing, were relieved to have ruled out autism as a diagnosis while continuing to explore answers to their child's developmental concerns. 25 An additional limitation to the current study is the loss of participants over time (approximately 28% from NICU discharge to 3-year follow-up), but there were no significant demographic differences between those followed up and those lost to follow-up (Table 1).…”

“…25 Research has found that parents with children who have a false-positive screening results on the 2-stage parent-report autism risk screening tool, although they experienced the emotional waves of positive screens and diagnostic testing, were relieved to have ruled out autism as a diagnosis while continuing to explore answers to their child's developmental concerns. 25 An additional limitation to the current study is the loss of participants over time (approximately 28% from NICU discharge to 3-year follow-up), but there were no significant demographic differences between those followed up and those lost to follow-up (Table 1). Additional research may also be beneficial in understanding the lack of significant differences in screening outcomes with the 2-stage parent-report autism risk screening tool between male and female children in this sample given the differences reported in literature regarding autism diagnosis rates.…”

Black Families' Experiences of Developmental Screening: Review of Well-Child Visits to Inform Enhanced Autism Spectrum Disorder Risk Assessment

“…A recent qualitative study of diverse parents whose children received false-positive results on ASD screening noted many benefits of the screening process, including increased understanding of typical child development and identification of other delays. 27 In future work, it will be important to determine how culture and race affect the concerns deemed most relevant or pressing across diverse parent groups, including Black families in the United States, and how to train providers to elicit these concerns. This may become particularly salient as children get older and differential diagnosis becomes more complex, with children mistakenly flagged as having attention-related or behavior-related disorders as opposed to ASD.…”