Children with Past but Not Current Diagnosis of Autism Spectrum Disorder

Background: The 2007 (U.S.) National Survey of Children’s Health showed that approximately 1-in-100 children aged 3-17 years had autism spectrum disorder (ASD) based on parent report, and nearly as many children (approximately 1-in-150) had once been diagnosed with ASD but did not have the condition at the time of the interview.  Understanding why parents might not have reported a current diagnosis for children with a past ASD diagnosis may be an important step toward better use of parent surveys to monitor ASD prevalence and the health care needs of this population.

Objectives: We evaluated whether children reported to have a past but not current diagnosis of ASD differed from children with a current diagnosis of ASD on sociodemographic characteristics, health care service use, diagnostic history, functional limitations, and present symptomatology.

Methods: The Survey of Pathways to Diagnosis and Services was a nationally representative telephone survey conducted by the (U.S.) Centers for Disease Control and Prevention’s National Center for Health Statistics in 2011.  The general purpose was to explore the health care and diagnostic history of school-aged (6-17 years) children with special health care needs (CSHCN) who were ever diagnosed with ASD, intellectual disability, and/or developmental delay.  We completed 1,420 interviews with parents of CSHCN who reported that their children had a current diagnosis of ASD.  In addition, we completed 187 interviews with parents of CSHCN who reported that their children had a past but not current diagnosis of ASD.  In this presentation, we compare estimates for these two groups.

Results: CSHCN who have a past but not current diagnosis of ASD were less likely than CSHCN with current ASD to currently have difficulty asking for things they need/want (9% vs 22%) and getting around by biking, walking, driving, or public transportation (23% vs 52%).  They also were less likely to currently receive school-based social skills training (22% vs 50%) and non-school-based services to meet their developmental needs (56% vs 70%).  No statistically significant demographic differences were observed.  Approximately 4 in 5 CSHCN with a past but not current diagnosis of ASD have parents who believe that their child never had ASD, yet results from the Children’s Social Behavior Questionnaire suggest that many of these children have elevated symptoms consistent with ongoing pervasive developmental delay.

Conclusions: Parents may have more difficulty answering survey questions about children’s current developmental conditions when these children currently exhibit fewer limitations and require fewer services than they did at an earlier age.