Linking Department of Children’s Services Records with ADDM Population Surveillance Methods

Background:  Children with Autism Spectrum Disorder (ASD) and Intellectual Disability (ID) are thought (1) to be at increased risk for maltreatment and (2) to encounter the juvenile justice system at higher rates than children without these specific neurodevelopmental conditions. While previous work has linked educational classifications of developmental disabilities to child maltreatment concerns (Sullivan & Knutson, 2000), larger epidemiological studies specifically addressing ASD within child protection systems are more limited.

Objectives:  The objectives of the current work were to utilize (1) identify potential ASD/ID cases in the Vanderbilt University Medical Center’s (VUMC) electronic medical system using Centers for Disease Control and Prevention (CDC) Autism and Developmental Disabilities Monitoring network methodology (2) link identified children through Tennessee’s Department of Children’s Services database of encounters related to maltreatment and the juvenile justice system.

Methods:  Tennessee’s current ADDM surveillance cycle population includes 11 counties within middle Tennessee region; 28,414 postcensal estimate of eight-year olds born in 2006. Potential ASD/ID cases were identified by searching specific ASD/ID-related ICD codes and identifying behavioral triggers within comprehensive developmental evaluations in the VUMC medical record. Using an algorithm based on SSNs, names, and dates of birth these records were then linked to Tennessee’s Department of Children’s Services database (TFACTS) for evidence of any DCS involvement among this group of potential ASD/ID cases.

Results:  This initial search through the VUMC medical records using ADDM methodology resulted in 421 potential ASD/ID cases. 153 of these children were also identified in the DCS system. This suggests individuals with ASD/ID symptomatology have a greater than 1 in 3 chance of having an encounter with DCS.

Conclusions:  Past work on the prevalence of youth with psychiatric disorders in the juvenile justice system and in state custody (e.g., foster/adoptive placements) has consistently documented high rates of behavioral challenges. However, several methodological hurdles have limited understanding of the prevalence of children with ASD and ID within these care systems. Specifically, such investigations have often relied on reporter and/or survey strategies, focused on selected subsamples of convenience, and relied on small sample sizes. By using ADDM surveillance methodology we have been able to suggest that over 36% of identified potential ASD/ID cases have also had encounters with DCS.