The Autism Registry is a vital tool that helps us understand autism in New Jersey. It has been a trusted and secure repository of confidential information since 2007, improving planning and linking children and families with helpful services and supports.
The registry’s primary purpose is to link families to special child health case management services, which are county based coordinated service providers that have years of experience with and knowledge of local, county, and statewide resources available to families of children with special health care needs.
In addition to connecting families with services, another goal of the Autism Registry is to obtain counts of children with autism in New Jersey and to describe the population in terms of demographics, diagnosis type, and other characteristics so that the state can plan for future services and policies.
Health care providers who diagnose or follow a child up through age 21 are required by New Jersey law (NJSA 26:2-185 et seq.) to submit a registration. Providers are not required to register anyone older than age 22.
Your child’s personal identifying information is CONFIDENTIAL.
Children’s personal information (name, address, diagnosis, etc.) is NOT shared with any other state, federal, or private entity. The Department of Health recognizes the sensitivity of your information and respects the rights of all individuals with ASD and their families. They take seriously their obligation to protect the privacy and confidentiality of individuals and keep all personal information in a tightly secured location.
By law, registry data cannot be made public in any way that could identify a person. The registry is not federally funded, and the registry has never shared individual-level or identifiable data with federal agencies or studies, including the CDC’s autism research network.
Families who register their child get connected with services.
Once your child is registered, you will receive a letter telling you that your child has been registered with the Special Child Health Services Registry. A brochure describing the services available for you and your family through your county’s Special Child Health Services Case Management Unit is included with the letter. Next, a case manager will contact your family to discuss the available, family-centered services in your community.
Families can request that their child be registered anonymously. However, if your child’s personal information is not included, the Department of Health will not be able to automatically link your child to important services and resources. Families can still receive these services if they self-refer to their local case management office. A list of case management office contact information can be found here.
The Autism Registry enables the Department of Health to create publicly available reports about autism rates in New Jersey.
The Department employs several data scientists and researchers whose reports offer great insight into autism in New Jersey. Without revealing personally identifiable information, these scientists produce publicly available reports, touching on important issues like the age of first diagnosis, the ways that autism diagnoses overlay participation in New Jersey Early Intervention Services, and how autism prevalence rates map onto race.
To get adequate representation, the autism community must be seen plainly and clearly. The reports that come from the registry are an essential part of being included in discussions about what New Jersey residents with autism need. Beyond being a valuable tool to parents that want to learn more about the greater context of their child’s diagnosis, these reports inform the policy makers who allocate funds for medically necessary treatment and crucial autism intervention.
The data that the registry collects may also one day help shed light on the complex causes of autism.
The registry can help us understand how the rate of autism in New Jersey compares to the rate in other states.
The CDC’s 2025 data show that, nationally, 1 in 31 children are diagnosed with autism. In New Jersey, the prevalence is 1 in 29. We’ve seen an increase in prevalence with every report for the last two decades.
Contrary to a popular belief, studies have shown that the high rate of autism in New Jersey is not related to people moving into the state.
Many researchers say some of it can be attributed to increased awareness. Doctors, educators and parents are getting better at spotting the signs of autism in traditionally underserved segments of the community (e.g., minorities, girls, those with average and above average intelligence) and, as a result, individuals who may have been overlooked or misdiagnosed before are now getting accurately diagnosed.
However, questions remain regarding the role that environmental factors might play in the increasing rate of autism. The causes of autism are complex. Click here to learn more.
The Autism Registry is mandatory.
You cannot refuse to be part of the Autism Registry. Health care providers must tell the parent or guardian about the registry and their right to request anonymous registration. You can only choose to be in the registry without identifiers such as name, full date of birth, address etc. Families that choose this option will miss out on the automatic link to Special Child Health Services case management services.
The Health Insurance Portability and Accountability Act (HIPAA) does not prevent a health care provider from making a report to the registry.
A provider does not need a parent’s consent because this is a public health surveillance activity. All states require the reporting of certain conditions so that they can better plan for and provide services. Both specialty health care providers who diagnose ASD and primary care providers who care for children with ASD are required to register so that children diagnosed previously or out-of-state are not missed.
If you would like more information about the New Jersey Autism Registry, please visit the New Jersey Department of Health or call 609.292.5676.