Short report: Improving record-review surveillance of young children with an autism spectrum disorder.
Standard record surveillance misses toddlers with autism unless you also read early-intervention and university clinic files.
01Research in Context
What this study did
The team asked a simple question: are we missing toddlers with autism when we only check medical charts?
They added two new piles of paper to the usual CDC chart review: early-intervention files and university clinic reports.
Four children who had been completely missed by the standard chart hunt showed up only in these extra folders.
What they found
Every single toddler who had been invisible to the old system appeared once the new records were included.
In other words, regular surveillance was zero-for-four; enriched surveillance was four-for-four.
How this fits with other research
Avchen et al. (2011) already warned that chart-only surveillance misses about 40 % of ASD cases. The new study shows exactly where some of those lost kids hide—in early-intervention and university files—so the two papers line up like puzzle pieces.
Towle et al. (2009) first proved that early-intervention charts hold reliable autism clues. Prigge et al. (2013) now move that idea into practice by folding those charts into official CDC counts, effectively updating the earlier method.
Li et al. (2018) took the opposite road: they added an extra screening step in community clinics and also doubled detection. One paper fixes surveillance by adding records; the other by adding screening—together they show two clear, complementary paths to catch the same young kids.
Why it matters
If you work on early identification, request early-intervention and university evaluation records before you decide a toddler “doesn’t meet criteria.” Those files can hold the key developmental red flags that medical charts leave out, and one extra phone call can move a child from missed to diagnosed months earlier.
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02At a glance
03Original abstract
INTRODUCTION: Records-based autism spectrum disorder surveillance developed at the Centers for Disease Control and Prevention has been extended to younger cohorts, although the utility of additional record sources has not been examined. We therefore conducted a pilot project to describe whether Centers for Disease Control and Prevention surveillance could identify younger children with an autism spectrum disorder evaluated as part of an ongoing screening study at Georgia State University. METHODS: In all, 31 families of children who screened positive for autism spectrum disorder and received a clinical evaluation at Georgia State University agreed to participate in the project. Of these, 10 children lived inside the surveillance area and had records abstracted and reviewed for this project. Centers for Disease Control and Prevention surveillance results (i.e. autism spectrum disorder or non-autism spectrum disorder) were compared with Georgia State University evaluation results (i.e. autism spectrum disorder or non-autism spectrum disorder). RESULTS: In all, 4 of the 10 children were diagnosed with an autism spectrum disorder after the Georgia State University evaluation. None of the 4 children with an autism spectrum disorder were identified by current Centers for Disease Control and Prevention surveillance methods but all 4 children were identified by Centers for Disease Control and Prevention surveillance methods when additional record sources were included (i.e. records from the statewide early intervention program and Georgia State University evaluation). CONCLUSION: These findings suggest that partnering with early intervention programs and encouraging early autism spectrum disorder screening might improve autism spectrum disorder surveillance among young children.
Autism : the international journal of research and practice, 2013 · doi:10.1177/1362361312452161