Autism Registry and Research Initiative

Note: We are closely monitoring the information being shared and understand this is an evolving situation. We are just as concerned as many of you about the ethical implications of a government autism registry and are not endorsing. This post is meant to explore the information we have so far. The psychologists and staff at Children’s Autism Assessment Center believe that consent, safety, and transparency are key and are committed, as always, to supporting the autistic community. 

With the recent proposal of a national autism registry, many of us are feeling discomfort, uncertainty, and anxiety. This post aims to explain what is currently going on and to provide you validation. You are not alone in these feelings! 

What is this proposed Autism Registry?

It is basically a nationwide database meant to collect health and personal data on diagnosed autistic individuals. The stated goal is to “identify and eliminate” environmental factors that have caused “the autism epidemic” - what this means is that members of the government believe that there are identifiable factors in our environment that are influencing autism prevalence (number of autistic people). 

Why is the Autism Registry concerning?

Privacy; as they would be collecting personal data on mental and physical health. This could lead to issues on data security, misuse, and further stigmatization of autistic individuals. Further, given past issues and controversies related to RFK Jr., concerns about ethics and the validity of any information gathered has arisen. Essentially, many autistic individuals (and us) are concerned about the government having the ability to track and categorize this group of people without consent. 

Are there benefits to the registry?

ETHICAL research can benefit autistic individuals and their families when it is conducted in collaboration with or led by autistic individuals; when it rigorously follows ethical guidelines and transparency; and when it is neurodiversity affirming (meant to reduce stigmatization). 

What are the actual impacts and who is impacted now?

Truthfully, we do not know yet. At present, information is set to be gathered through Medicare and Medicaid plans. This means that those who utilize these insurances, such as through SSI or the Katie Beckett Waiver, may have data shared. 

We do know that there are 6 states (not including Georgia) which have autism registries already and outcomes are unclear in those states. 

Where we stand at Children’s Autism Assessment Center.

We do not support any initiative collecting information on autistic people without their informed consent as we prioritize safety, autonomy, and dignity of neurodivergent people. 

We recognize the continued importance of evaluations in identity and accessing appropriate services. Thus, we are dedicated to making the assessment process transparent and safe for you and your family. 

Here are a few details about how our center manages patient data:

• For self paying families: 

  • Private data is not shared with outside entities for self-pay patients. 

  • Our clinicians do not release patient data unless the patient expressly consents in writing, per our consent forms. 

• For families using insurance:

  • When using insurance, you sign away some privacy rights as your insurance requires your medical information. On our end, we are required to provide a diagnosis code with our claims. So, the insurance company will have access to the patient’s diagnosis in combination with the patient’s full name and date of birth. 

  • If an insurance company requires an appeal to process a claim, we are also required to send the evaluation report in addition to the diagnosis code and visit note. Please refer to our patient consent forms for more information. These are per the contract we sign with your insurance company in order to be considered in-network with them and per your own contract with your insurance company. 

  • In any other circumstance, we do not provide your data to anyone else without your consent. 

• For any questions or concerns regarding CAAC’s policies, or to schedule an autism evaluation, please reach out via call or text at (404)390-1322, or via email at info@caacatlanta.com. Please also speak with your provider as they are quite passionate about this topic and are more than happy to discuss this with you, whether it is to gather more information, understand impacts on your family, or just to vent and validate! 

We will continue to monitor this issue and advocate fiercely on your behalf. CAAC is committed to a future in which all autistic people are understood, empowered, and supported.

Sources:

“WATCH: RFK Jr. orders HHS to determine the cause of autism by September.” PBS News Hour, 10 Apr. 2025, https://www.pbs.org/newshour/health/rfk-jr-orders-hhs-to-determine-the-cause-of-autism-by-september

Smith-Schoenwalder, Cecelia. “Is RFK Jr. Creating an 'Autism Registry’? What to Know.” US. News & World Report , Health News, 24 Apr. 2025, www.usnews.com/news/health-news/articles/2025-05-02/is-rfk-jr-creating-an-autism-registry-what-to-know. 

“NIH to integrate patient data for autism study.” Healthcare Finance, 24 Apr. 2025, https://www.healthcarefinancenews.com/news/nih-integrate-patient-data-autism-study

“HHS Walks Back ‘Autism Registry’ Plans.” Autistic Self Advocacy Network, 25 Apr. 2025, autisticadvocacy.org/2025/04/hhs-walks-back-autism-registry-plans/. 

Marschall, Amy. “State Autism Databases.” Resiliency Mental Health, 29 Apr. 2025, resiliencymentalhealth.com/2024/07/08/state-autism-databases/. 

“RFK Jr. says autism database will use Medicare and Medicaid info.” NPR, 8 May 2025, https://www.npr.org/2025/05/08/nx-s1-5391310/kennedy-autism-registry-database-hhs-nih-medicare-medicaid.