HHS Autism Registry and its Impact on Psychological Evaluations

Published on June 6, 2025

According to an HHS Press Release on May 7, 2025:

“The National Institutes of Health (NIH) and the Centers for Medicare & Medicaid Services (CMS) today announced a landmark partnership to enable NIH to build a real-world data platform enabling advanced research across claims data, electronic medical records, and consumer wearables.”(1)

As of the time of writing listed above, no federal guidance has been given to health care providers and groups regarding reporting requirements for Autism Spectrum Disorder (ASD). Additionally, there is no content in the press release to suggest that commercial health plans (such as those obtained by an employer) would be impacted by this initiative. Insight Carolinas serves clients with Medicaid and complies with reporting/billing procedures by the state. States have obligations to administer the federal program Medicaid, and as a result, must comply with reporting requirements. One dataset compiled by CMS is the Transformed Medicaid Statistical Information System (T-MSIS)(2). Historically, this data set has been used to guide data-driven decisions on public health responses to concerns such as opioid overdose (3), behavioral health care utilization, (4) etc. 

Broad population data has been used in the past to study autism occurrence rates in the United States. A finding published earlier this year through a CDC national data set stated:

Research has not demonstrated that living in certain communities puts children at greater risk for developing ASD. Differences in the prevalence of children identified with ASD across communities might be due to differences in availability of services for early detection and evaluation and diagnostic practices. (5)

Insight Carolinas cannot speak to how the United States Government intends to use data in the future, or if there are ulterior motives. On its face, the use of data to identify causes or factors correlated with autism spectrum disorder can be helpful. However, misuse or misrepresentation of that data is understandably a concern, and if the data would be used to build a federal autism registry. As privacy laws stand, special permissions must be given to access data sets housed by the US Health and Human Services, which also require compliance with human subject research ethics and privacy laws.(6)

It remains our recommendation that if you suspect your child may have a developmental disorder, that you seek evaluation as soon as possible to offer support in therapeutic treatment, medication (if clinically indicated), and school interventions. Early intervention may yield favorable outcomes, especially for social communication. (7) To schedule an autism evaluation or other mental health evaluation, please visit our referrals page. (8)

Frequently Asked Questions (FAQ)

I have commercial/group health insurance. Am I impacted by the HHS initiative?

• No. As we understand that news bulletin, private health plan data are not a part of this HHS initiative. Please check HHS for the latest information.(9) Additionally, the Affordable Care Act prohibits commercial/group health insurance from restricting care or making care more expensive due to a mental health diagnosis.(10)

Can I request that an Autism diagnosis is not made?

• No. Our psychological evaluations at Insight Carolinas are comprehensive and may include an autism diagnosis if appropriate. However, if we suspect it is a concern and it was not a referral question, we may ask before conducting additional testing. 

What happens for reporting if I or my child is diagnosed with autism by Insight Carolinas?

• We will write a report and bill insurance in accordance with the prevailing professional ethics and legal requirements.

Can I opt-out of my data being used for autism research and other research efforts?

• Yes, though there are limits and can be difficult to complete. The HIPAA Privacy Rule permits individuals to Opt-Out of health information exchanges, though minors and those with federal benefits like Medicaid have some exclusions on data that can be a part of an opt-out. HHS provides additional details on its website (11) and North Carolina has additional details as well.(12) Insight Carolinas does not process these requests, which must be directly submitted to the researching agency.

Insight Carolinas is a private Limited Liability Company and does not represent the views or positions of the United States Government. Additional disclaimers related to blog content are also available for review. (13)

1. https://www.hhs.gov/press-room/nih-cms-partner-to-research-root-causes-of-autism.html

2. https://www.medicaid.gov/medicaid/data-systems/macbis/transformed-medicaid-statistical-information-system-t-msis/t-msis-analytic-files

3.  https://www.cms.gov/priorities/innovation/innovation-models/maternal-opioid-misuse-model

4.  https://www.cms.gov/priorities/innovation/innovation-models/innovation-behavioral-health-ibh-model

5.  https://www.cdc.gov/mmwr/volumes/74/ss/ss7402a1.htm

6.  https://www.hhs.gov/hipaa/for-professionals/special-topics/research/index.html

7.  https://www.bmj.com/content/383/bmj-2023-076733

8.  https://www.insightcarolinas.com/referrals

9.  https://www.hhs.gov

10. https://www.federalregister.gov/documents/2024/09/23/2024-20612/requirements-related-to-the-mental-health-parity-and-addiction-equity-act

11. https://www.hhs.gov/hipaa/for-professionals/faq/555/can-a-covered-entity-use-hipaa-to-give-individuals-opt-in-or-opt-out-rights/index.html

12.  https://hiea.nc.gov/patients/your-choices

13.  www.insightcarolinas.com/disclaim