North Dakota Autism Spectrum Disorder (ASD) Database
Common Questions for Families
What is Autism Spectrum Disorder (ASD)?
ASD is a developmental brain disorder that affects a person's behavior, communication and social skills. Signs of ASD begin during early childhood and typically last throughout a person's life. The severity of symptoms is different in each person and the symptoms may change in response to early intervention, growth and development.
A diagnosis of ASD includes several conditions that used to be diagnosed separately: Asperger's Syndrome, Autistic Disorder, Childhood Disintegrative Disorder (CDD), and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).
What is the difference between a medical diagnosis and an educational diagnosis of ASD?
A medical diagnosis is made by a physician based on an assessment of symptoms and diagnostic tests. A medical diagnosis of ASD is most frequently made by a physician based on criteria from the Diagnostic and Statistical Manual of Mental Disorders (DSM). An educational determination is made by a multi-disciplinary team of various school professionals. The evaluation results are reviewed by a team of qualified professionals and the parents to determine whether a student qualifies for special education and related services under the Individuals with Disabilities Education Act (IDEA).
What is the Autism Spectrum Disorder Database?
In 2013, the North Dakota Legislature passed a law (NDCC chapter 23-01-41) that requires the North Dakota Department of Health (NDDoH) to create and manage a database which includes a record of all individuals diagnosed with ASD. The information collected will be used to complete epidemiologic surveys, research and analysis, and to provide services to individuals with an ASD.
How are individuals reported into the database?
After an individual has been diagnosed with ASD, a physician, psychologist, health care professional, or their designee will report the individual by completing a specific form and submitting it to the NDDoH. Only individuals who are North Dakota residents or one of the individual's parents/guardians are a resident of North Dakota will be reported.
When does reporting take place?
A reporter or the reporter's designee has to report newly diagnosed individuals into the database within 30 days of diagnosis. A reporter or the reporter's designee has to report previously diagnosed individuals into the database within 30 days of the individual's first patient or client encounter with the reporter. The reporter/diagnostician will make the determination on whether the form is filled out on the same day the diagnosis is made or during a follow-up appointment with the patient or client.
What information will be in the database?
The database contains the following:
- Demographics such as the individual's date of birth, gender and race
- Contact information for the individual and the parents or guardians
- Information about the diagnostician and the person submitting the form
- Information about the tools that were used to make the diagnosis
Why is personal information being collected?
Personal information is collected to:
- Prevent duplications in the database
- Update data over time so the information continues to be accurate
Will individuals who have a diagnosis of autism have to repeat diagnostics in order to be reported into the database?
The report form allows for previously diagnosed individuals to be reported into the database without the need for repeated diagnostics. Ultimately, it is up to the reporter/diagnostician to decide whether or not an individual needs to be re-evaluated for ASD using current diagnostic tools and references.
An individual wouldn't need to repeat diagnostics if a qualified reporter was part of the diagnostic team that evaluated and diagnosed the individual with ASD for the North Dakota ASD Waiver. The reporter on the diagnostics team or the reporter's designee will have to complete the form and submit it to the NDDoH.
Do individuals need to give consent to be reported into the database?
Reporters are required by law to report ASD diagnoses into the database. Individuals and parents/guardians cannot opt out of reporting. Signed consent by the individual or the parents/guardians is not required.
What if the reporter/diagnostician does not report the individual into the database?
An individual or parents/guardians can request that the reporter/diagnostician report the individual into the database. If reporting doesn't happen, even after it is requested, the individual or the parents/guardians can contact the NDDoH for assistance.
How private is the personal information being collected?
The NDDoH is committed to protecting the privacy and confidentiality of individuals reported into the database. All personal information is kept in a secured environment that is password protected. Strict security precautions are used to prevent outside access to the information and only those authorized by the NDDoH will be able to view the data. The NDDoH follows all rules required by the Health Insurance Portability and Accountability Act of 1996 (HIPAA).
Can a reporter/diagnostician access the database to see who's been reported?
A reporter/diagnostician cannot access the database to see who's been reported. The reporter/diagnostician will be instructed to report into the database any patient or client that has been diagnosed or previously diagnosed with ASD. The reporter/diagnostician has the option of printing out the report form to include in the patient or client's medical records/chart or a note can be added to the medical records/chart indicating that the individual with ASD has been reported into the database. Also, the reporter/diagnostician can contact the NDDoH to verify whether a patient or client has been reported into the database.
Why should an individual be reported into the database?
There has been increased attention on the frequency of ASD diagnoses in the United States. At this time, there is no clear understanding of how many individuals have ASD in North Dakota. The information that is collected in the database will help shape appropriate policy and practices to improve services and support for people with ASD.