Autism

New Jersey is one of a few states in the country that has a statewide registry of children diagnosed with Autism Spectrum Disorder (ASD). The Registry was created to better understand autism or ASD in New Jersey and to link families to available services and supports.  Your child’s health care provider will complete the registration, and provide information such as:

• child’s name
• his/her date of birth
• current address
• your name
• your date of birth
• your child’s diagnosis, who diagnosed him/her, and when

Information in the Registry is kept private. You can choose to be in the registry anonymously, but then your family will not be able to be linked to special child health case management services. These county-based, coordinated service providers have many years of experience and knowledge of the local, county, and statewide resources available to families of children with special health care needs.

State law requires licensed health care providers to report any child diagnosed with autism to the Autism Registry. A child has to be:

• A resident of New Jersey
• Under the age of 22
• Have one of these diagnoses:
  • Autism Spectrum Disorder (ASD)
  • Autistic Disorder
  • Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)
  • Asperger's Disorder/Syndrome

Parents can facilitate the registration process by informing their health care provider (such as their pediatrician, neurologist, or psychiatrist or other New Jersey licensed provider that cares for the child) of the law and by telling them that they want their child registered. They can also assist with completing and sharing the autism registration form with their child's health care provider. 

In recent decades there has been an increase in the number of children diagnosed with autism. These children need extensive services. Early identification of children with autism and early intervention of the behaviors and symptoms associated with autism improves later outcomes. The Autism Registry helps with this by referring families to special child health case management services, who perform coordinated care and inform families of available resources, or to early intervention if the child is under 3 years of age.

We recognize the sensitivity of your information and respect the rights of all individuals with autism 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 and give limited access to the information contained in the Autism Registry.  All information produced from Autism Registry data, such as reports, data tables and so forth are done in aggregate, with no individuals identified whatsoever.

Once your child is registered, a letter and informational pamphlets are sent to you notifying you that your child has been registered.  To keep confidentiality, the letter does not contain your child’s diagnosis.  In addition to a letter sent to you, information about your child is sent to the special child health case management unit within your county of residence.  These case managers are available to serve you and your family by providing you with coordinated, family-centered resources.  This service is free to you and is available to your child from birth through the age of 21.