Autism Spectrum Registry
The rule requires all health care and other providers who are qualified to make a diagnosis of autism spectrum disorder to record their findings when a new case of ASD is diagnosed in a New Hampshire resident.
The purpose of this registry is to improve current knowledge and understanding of ASD, and to allow the conducting of thorough and complete epidemiologic surveys of the disorder. The collected data can then be analyzed in order to facilitate planning for services for children and adults with ASD and their families.
The New Hampshire Department of Health and Human Services, as a result of the bill, has established this online Autism Registry, in order for providers who diagnose new cases of autism to register their findings.
- Fiscal Year 2012 Data
- Fiscal Year 2011 Data
- Fiscal Year 2010 Data
- First Year Data
- FAQs for Families
- FAQs for Diagnosticians
Why does NH have a registry for Autism Spectrum Disorders?
The impetus for the NH Registry originally came from the parents of children and young adults with ASD. Nationally – and in NH – it appears that the incidence of ASD is increasing. To improve knowledge, policy, practice and funding for ASD, the President of the Autism Society of New Hampshire crafted HB 1709 in collaboration with legislative sponsors.
Public agencies that provide services to children, teens and adults with ASD have been supportive of the NH Registry: Over time this database will be an invaluable tool in planning for the future needs of the ASD population. Because the NH Registry tracks patterns in diagnostic assessment, it will also help public health officials to determine how well NH is doing in meeting the important goals of universal screening and early identification.
How common are Autism Spectrum Disorders?
Our understanding of the prevalence of ASD has evolved in recent years. For decades, autism was believed to occur in 4 to 5 per 10,000 children. In 2004, however, the Centers for Disease Control (CDC) partnered with the American Academy of Pediatrics to issue an Autism A.L.A.R.M. At that time, several studies indicated that prevalence rates were between 2 and 6 per 1000, or as high as 1 in 166 children.
Still more recently, the CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network released data that found about 1 in 150 eight-year-old children in multiple areas of the United States had an ASD. Since the ADDM sites do not represent a nationally representative sample, the prevalence estimates should not be generalized to every community in the United States. Although accurate for the areas studied, rates may be higher or lower in other parts of the country.
Why is the NH Registry for Autism Spectrum Disorders important?
In recent years, there has been a great deal of public interest in the prevalence and incidence of ASD in the United States. Studies from California have suggested an increase of 273% from 1987 to 1998. This alarming news captured the attention of national media and the United States Congress. In 2001, Congressman Chris Smith (R-New Jersey) stated, "it is not an exaggeration to say that autism spectrum disorders may be the silent epidemic of our time… It is silent because there are currently no operational autism registries in the nation to tell us how many people actually have autism."
New Hampshire is the second state in the nation to establish a legislatively mandated, state-wide registry for ASD. A unique public health initiative, the NH Registry not only counts the number of new cases, but tracks the average age at which a definitive diagnosis is made. As other states follow with similar registry procedures, our combined efforts will help us understand more about the incidence of this challenging condition and how healthcare systems can best insure early and proper identification.
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