Autism

Autism is a mandatory reportable condition in New Jersey. All professionals licensed under Title 45 of the Revised Statutes and trained to diagnose autism are required to register all children with autism whom they diagnose or follow in their practice. This includes all previously diagnosed children. All registrations are confidential! 

All licensed health care providers must register any child who:

• is diagnosed with an autism spectrum disorder (ASD)
• lives in New Jersey
• is 0-21 years of age

The Autism Registry defines autism in accordance with the DSM-5 criteria of Autism Spectrum Disorder. Children diagnosed under the DSM-5 criteria or those previously diagnosed under DSM-IV are included.

Before registering the child, providers must inform families of the Autism Registry and give parents/guardians the option to be registered without identifiable information. However, if a family decides to register without identifiable information, providers must:

• Inform them that they will not be linked to special child health case management services automatically.
• Obtain a signed written statement from the parents/guardians saying they chose to be registered without identifiable information and make that statement part of the child’s permanent medical record.

Because the Autism Registry comprises public health surveillance mandated by state law, HIPAA requirements do not apply. For more information on HIPAA and state law, go to the U.S. Department of Health & Human Services website.

Providers can register either electronically, if they have access to the web-based system, or by completing the hard copies of the SCH-1 form. If you are a New Jersey licensed health care provider and want to have access to the web-based system to register, please send an email to eim.bdars@doh.nj.gov. 

The registry refers all children to county-based case management services. Case management provides families with valuable resources and referrals. Children under the age of 3 are referred to Early Intervention Services. 

The New Jersey Autism Registry additionally uses its data to conduct thorough and complete epidemiologic surveys of autism and to plan for and inform policy in New Jersey. As of May of 2017, the Registry contains more than 25,000 registrants, the majority still under the age of 22 and receiving services.

Several reports have been published using registry data or about the registry, including:

• Report: New Jersey Autism Registry Shows Increasing Prevalence Among Hispanic Children
• Presentation: New Jersey Registry Shows Increasing Prevalence Among Hispanic Children
• New Jersey Autism Registry
• Age of First Autism Diagnosis as Seen in the NJ Autism Registry
• Autism Registry and Early Intervention Analysis
• A Comparison of State Autism Registries: New Jersey and Beyond

If you are interested in obtaining more information on the data contained in the Autism Registry, please contact us.