The US Preventive Services Task Force (USPSTF) has recently released a draft of a report, Screening for Autism Spectrum Disorder in Young Children. On the basis of a systematic review of published studies on screening, the USPSTF found insufficient evidence to assess the risks and benefits of universal screening for autism. The draft report states that it cannot presently make a recommendation either in favor of or against such screening, and calls for more research to better determine risks and benefits.
The USPSTF has invited review and public comment on the draft recommendation. The deadline for posting responses on the Task Force website is August 31, 8 p.m. EST. (Click here to review and comment on the draft recommendation.)
Not surprisingly, individuals and organizations, including the American Academy of Pediatrics (AAP), have expressed concern with the recommendation. For example, AAP President Dr. Sandra Hassink emphasized that the report content counters current AAP guidelines on autism screening, and Dr. Susan Levy of the AAP Council on Children with Disabilities (and a noted autism expert) is leading a subgroup of AAP experts to prepare and submit a formal response. Concerns include fears that the recommendation will discourage providers from performing screening according to AAP and other practice guidelines, and that families will be less willing to participate in screening.
For many of us, the USPSTF recommendation is difficult to reconcile with the known benefits of early identification and referral for appropriate intervention to ensure that children with autism have access to evidence-based therapies. However, familiarity with the process by which the USPSTF conducts its work is helpful in placing the recommendation in its appropriate context.
The USPSTF, like many such review groups, bases it recommendations exclusively on published research reports, including considerations of research methodology, quality, and strength of the research findings. When research evidence is available that supports the benefit of a specific procedure or process and the benefits clearly outweigh any risks, then the Task Force endorses the activity. When research documents the lack of benefit or undue or unacceptable risk, the Task Force recommends against the activity. When insufficient research is available, the Task Force acknowledges the lack of evidence, neither recommends nor discourages the activity, and calls for more research.
The current draft recommendation for autism falls into the latter category. Of note, the USPSTF approach is less “draconian” than processes adopted by other, similarly prestigious bodies, such as the British Working Party on Child Health Surveillance. For the latter, when insufficient evidence is available to support an activity, the Working Party will typically recommend that it not be performed.
Of course, the lack of published research evidence does not mean that a given procedure or activity is not worthwhile, merely that insufficient research evidence is available to support a definitive recommendation. In medicine, relatively few of our routine activities are unequivocally supported by definitive research evidence, with most expert recommendations based on a combination of limited research evidence, empirical observations, and good intentions.
Furthermore, the lack of supportive research findings may be a consequence of other factors, such as poorly designed research studies, lack of adequate financial support to bring such studies to scale, or other confounding variables. Thus, the discrepancy between the USPSTF draft recommendation, given their strict methodology, and expert consensus recommendations such as those of the AAP is not surprising. We share the concern that influential groups, such as insurance carriers, may use the USPSTF recommendation as a rationale to not reimburse for screening activities or not hold providers accountable for their screening performance.
Our Help Me Grow experience suggests yet another possible explanation for the USPSTF recommendation. Perhaps it is a consequence of relying on research that is asking the wrong question.
We know the perils of viewing developmental screening as an isolated procedure, rather than as a critical component of a comprehensive process of developmental promotion, early detection, and referral and linkage to programs and services. Federal initiatives, such as the Centers for Disease Control and Prevention’s (CDC) Learn the Signs. Act Early (LTS.AE) initiative emphasize the need to view screening in the context of a comprehensive process of early detection, referral, and response.
Studies examining the value of autism screening in isolation, rather than as a component in a comprehensive process, are unlikely to demonstrate benefits, given the challenges of ensuring that screening leads to referral and that referral leads to linkage to intervention services. The wrong study question (i.e., “Is autism screening worthwhile?”) Is likely to underestimate the benefits of screening that is properly implemented as a critical component of a comprehensive process.
The USPSTF is absolutely correct in calling for more research to demonstrate the utility of universal screening for autism. Such research should be mindful of the experience and lessons learned by the CDC and the LTS.AE campaign and examine such screening in the context of a comprehensive process of early detection, referral, and response. I anticipate that such studies will be helpful in resolving concerns and result in endorsing autism screening.
In the interim, we should continue our advocacy in support of surveillance and screening for developmental conditions and concerns, including autism spectrum disorder.