The New Jersey Autism Registry: Development and Impact

Background:  The rise in the prevalence of Autism Spectrum Disorders (ASD) rates over the past 15 years has spurred a number of national endeavors by the CDC, NIH, and other organizations to better understand the increase, what causes autism, and what services are needed.  In 2007, New Jersey enacted a mandated an Autism Registry for all children (0-21) in response to its CDC prevalence rate of 1:94.  Today, over 18, 000 children have been registered and referred for case management services.  The data has provided a wealth of information on demographic differences, risk factors, and Early Intervention (EI) service use.

Objectives:  This presentation provides an overview of how a mandated state-based autism registry was developed and can yield information regarding age of diagnosis, symptoms, demographics, and other vital information for policy makers and service planners. 

Methods:  A descriptive overview is provided regarding the development and key components of the Registry.  Data were analyzed in terms of race/ethnicity, age of diagnosis, comorbidities, difference in subtypes, maternal and paternal age, birthweight, and plurality.  Data were matched to Birth Certificate and EI data.

Results:  Over 3000 children per year have been registered since 2009.  60.8% of children were classified with Autistic Disorder, 23.3% Pervasive Developmental Disorder (PDD)-NOS, and 15.3 Asperger Syndrome.   The mean and median age of first diagnosis was significantly different by subtype: Autistic Disorder=4.25 and 3.2; PDD-NOS=4.6 and 3.6; and Asperger Syndrome=8.2 and 7.8. The race/ethnicity analysis (see Table 1) shows Hispanics represented 24.5% of the children in the Registry, while 18.9% of all children in NJ and 17.1% in the US are Hispanic.  Black Non-Hispanics and Asians were less likely to be in the Registry.  Age of diagnosis by race shows that Hispanics are more likely to be diagnosed earlier (38.6% by age 3) than Whites (32.8%) and Blacks (35.2%).   While most children were diagnosed after the age of 3, the EI data showed that about 60% of children registered had been enrolled in EI (see Table 2).   As expected, children in the Registry are more likely to born to older mothers, born prematurely and have lower birth weights.  Interestingly, the percent of mothers over 35 is much higher in New Jersey (22.1%) than the US (15.3%) which may help explain why the rates of autism appears to be higher in NJ than the other states in the CDC surveillance studies.

Conclusions:  Using a state-law to mandate the reporting of Autism, NJ designed a registry with three main goals: link individuals to services and resources; plan services; provide prevalence and epidemiological information.   The system was designed to include newly and previously diagnosed children, collect maternal, birth, and diagnosis-specific information, and refer all children to case management services.   The Autism Registry has also produced important information for policy makers about the age of diagnosis, the impact of race on the age of diagnosis, and the population risk factors that may exist in New Jersey.