Recently the US Preventive Services Task Force provided an update on the necessity for screening young children seen in primary care for autism. The panel did not provide a recommendation for or against screening; rather, they strongly encouraged more research on the potential benefits and harms of screening. According to the Task Force, “Until there is more research, parents and doctors should work together to decide when to screen a child.” Contrary to this wait and see attitude the American Academy of Pediatrics has joined advocacy groups in urging continued universal screening for autism between 18 and 24 months of age.
Screening for autism takes only a few minutes and there are many studies as of present supporting that earlier identification provides for earlier interventions and improved outcome. Despite the voluminous evidence the Task Force claims that data derived from early intervention studies makes reference to children who were screened for specific developmental concerns or those who fell into a high risk group (e.g., younger siblings of already diagnosed autistic individuals).
According to the Autism Science Foundation research has demonstrated that formal screening is more effective than relying on clinical judgement alone (https://autismsciencefoundation.wordpress.com). According to their web site, “This is especially important in reducing racial and ethnic disparities in access to care”.
The following abstract came from a study published in 2014 by Katherine E. Zuckerman et al (J Dev Behave Pediatr 35:522-533, 2014). The title of the article was Conceptualization of Autism in the Latino Community and its Relationship with early Diagnosis.
Objective: Early identification of autism spectrum disorders (ASD) has been linked to improved long-term developmental outcomes. However, Latino children are diagnosed later than white non-Latino children. We aimed to qualitatively assess the understanding and conceptualization of ASD in the Latino community to understand potential community barriers to early diagnosis. Methods: We conducted 5 focus groups and 4 qualitative interviews with 30 parents of typically developing Latino children in Oregon. Participants were asked structured questions concerning video vignettes that follow a Latina mother from the time she begins to worry about her 3-year-old son’s behaviors to the time he receives an ASD diagnosis. Focus groups and interviews were audio-recorded, transcribed, and independently coded. Coded data were analyzed using thematic analysis. Results: Many Latino families in the study had not heard of ASD or had little information about it. Families sometimes assumed that ASD red flags were normal or could be attributed to family dysfunction. Families also had concerns about provider communication and access to language services. Having a child with a developmental delay was associated with embarrassment, rejection, and family burden, making it difficult for parents to raise developmental concerns with providers. Conclusions: Pediatric providers should not assume that Latino parents have heard of ASD or know its symptoms. Providers should be aware that parents may be reluctant to mention concerns because of cultural factors. The health care system needs to improve resources for Latino parents with limited English proficiency. Policies should encourage the use of developmental screening in primary care.
For many reasons parents may not complaint to their pediatrician. They may not have the proper experience- especially with a first born child- or they may not even know what symptoms to look for. In other cases, as in the above abstract, cultural norms may prevent them from disclosing appropriate information. It is unfortunate that US Task Force decided to err not on the side of caution but on the side of inaction, thus failing both physicians and patients. By doing nothing they elected the possibility of doing more harm than good. Instead of following the Hippocratic oath of “doing no harm”, they instantiated their own dictum to “do no good”.