Autism Registry: Facts and Myths

The Autism Registry was created in 2007. The primary purpose of the Autism Registry is to link families to special child health case management services, which are county based coordinated service providers that have many years of experience and knowledge of local, county, and statewide resources available to families of children with special health care needs.

In addition to linking families to 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 we can plan for future services and policies. Your health care provider will register your child by completing specific forms and submitting them to the Department of Health. Only children who are New Jersey residents and under the age of 22 will be registered.

Myth: I can refuse to have my child registered with the Autism Registry.

No.

You cannot refuse to be part of the Autism Registry. Health care providers must tell the parent/guardian about the Registry and their right to request an anonymous registration. You can only choose to be in the Registry without identifiers such as name, full date of birth, address etc. However, if you choose this option, you will not automatically be linked to special child health services case management services.

Myth: New Jersey has high rates of Autism because families of children with Autism Spectrum Disorder (ASD) move to New Jersey.

False.

Studies have shown that the high rate of ASD is not related to people moving to New Jersey, but more so because New Jersey’s providers are very good at diagnosing and documenting ASD.

Myth: If I don’t give consent, my health care provider cannot register my child because of Health Insurance Portability and Accountability Act (HIPAA).

False.

A provider does not need 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 health care providers who diagnose ASD and primary care providers are required to register so that children diagnosed previously or out-of-state are not missed.

Myth: There is no benefit to me or my child to be registered.

False.

Once your child is registered, you will receive a letter and informational pamphlets telling you that your child has been registered, and about services that may be available for you and your family. Our Special Child Health Services Case Management Unit will contact your family and inform you of available family-centered services in your community. County-based case management units are a free resource for families of children from birth to 21 years of age with special health care needs. If your child’s personal information is not included, we will not be able to link your child to important services and resources, many at no charge to the families.

Fact: Your child’s personal identifying information is CONFIDENTIAL.

True.

Children’s personal information such as their name, address, diagnosis, etc. is NOT shared with other agencies such as the Division of Motor Vehicles, schools and colleges. We recognize the sensitivity of your information and respect the rights of all individuals with ASD and their families. We take seriously our obligation to protect the privacy and confidentiality of individuals and we keep all personal information in a tightly secured location.

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