Brief Report: The Prevalence of Neurofibromatosis Type 1 among Children with Autism Spectrum Disorder Identified by the Autism and Developmental Disabilities Monitoring Network.
Deborah A Bilder, Amanda V Bakian, David A Stevenson and 6 others
PMID 27465244WHAT IT FOUND
NF1 was found in 22 of 12,271 children with ASD (0.18%).
These children were less likely to have a prior ASD diagnosis and to show difficulty with non-verbal communication, suggesting ASD/NF1 may be underestimated.
Key findings
01Among 12,271 children who met ASD case definition, 22 (0.18%; 95% confidence interval 0.12 to 0.27%) had ASD/NF1.
02Children with ASD/NF1 were significantly less likely to have a previous community ASD diagnosis (53 vs 76%, p = 0.04) and to meet the non-verbal communication criterion (58 vs 84%, p = 0.001).
03The groups did not differ in sex or race/ethnicity, and there was no significant difference in the mean number of DSM-IV-TR criteria met (8.4 vs 8.9, p = 0.43).
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
NF1 was not the main target of the surveillance system, and sites differed in whether they asked health records for the NF1 diagnostic code, so some children with NF1 may not have been found. Four children were identified only by a single NF1 diagnostic code, which could have been miscoded; however, removing them did not substantively change the results. For some years, children who already had an ASD diagnosis or school autism eligibility were reviewed with an abbreviated process, which limited detail. Children whose records came only from schools may have had NF1 missed because schools do not commonly note medical diagnoses. The ADDM case definition can count a previous community ASD diagnosis as evidence for ASD, so children with ASD/NF1 who lacked that diagnosis may have been undercounted. The authors say the reported ASD/NF1 prevalence is likely a minimum estimate. The impact of DSM-5 criteria on children with ASD/NF1 was not established in this study.
The easy way to misread this
Do not conclude that NF1 is common among children with ASD. Only 22 of 12,271 children with ASD had NF1, and the authors say the estimate is likely a minimum.