As an openly Autistic person and the owner of Authentic Therapy Services, I want to personally address the growing safety concerns surrounding RFK Jr’s proposed plans for Autistic people’s medical data, a national Autism registry, and the potential implications for people seeking diagnosis or affirming care services.

What We Know

The U.S. Health and Human Services (HHS) Secretary Robert F. Kennedy Jr. (RFK Jr.) has proposed plans to establish a database to track Autistic people in the United States, and to provide their private medical data to researchers of the administration’s choosing. The National Institutes of Health (NIH) director has indicated this data will be collected from sources including pharmacy chains, private insurer claims, and fitness tracking devices, in addition to their efforts to broaden information access from the Centers for Medicare and Medicaid Services. As noted by the Autistic Self Advocacy Network, we do not currently know “how Autistic people will be identified, whether personally identifying information will be culled from the collected data, what confidentiality protections there will be, or whether people will receive any notice that their information is being used, or have the opportunity to opt out of the collection of personal data.” But we do have every reason to believe that this information will be used in ways that are dangerous and harmful to the Autistic community.

Why This Matters

Beyond the obvious and egregious violations of privacy rights protected by the Health Insurance Portability and Accountability Act (HIPAA), the creation of a centralized “disease registry” to track Autistic citizens is a painfully transparent act of surveillance – One that is thinly veiled under the guise of “public health,” and deeply rooted in a longstanding history of eugenics. The United States (among other countries) has a history of eugenics programs that utilized diagnoses, differing abilities, and marginalized identities to justify interventions such as forced sterilization, institutionalization, and unethical experimentation. These historical movements began with methods of surveillance and tracking, including registries. We have been here before, and we have seen this before.

What We’re Doing

While many uncertainties remain, there is no question that Authentic Therapy Services will not comply with a system of harm. As a practice composed of neurodivergent and LGBTQIA+ clinicians, the safety of our clients is our top and foremost priority, and we remain committed to protecting and advocating for our communities through anything and everything that lies ahead. As an Autistic person, I would never allow for participation in the reporting of client neurotypes, nor compliance with the weaponization of health information – Regardless of any potential professional consequences that may result from that decision. 

• • Diagnoses: Autism neurotypes are not entered into our EHR system as a diagnosis. We use the most generic diagnosis codes possible, whether or not a client is utilizing out of network benefits that then involve insurance companies in their care. 
  • Documentation: We are working to minimize documentation of all identity markers in our progress notes and treatment plans – An action that was already initiated in response to the current authoritarian regime’s targeted and escalated attacks on the trans community. 
  • Assessments: As a fully independent practice that does not bill insurance, assessment diagnoses are completely private. These diagnoses are not entered into our EHR system, and final reports are given directly to clients so that outcomes are known to them alone (*unless a client signed a release, and requested that we share a report with an outside and trusted provider). 
  • EHR – We are continuously evaluating the security of our platforms and are prepared to take immediate action if a change is indicated.
  • Out of Network Benefits: We continue to encourage clients to consider their privacy needs when deciding to utilize out of network insurance benefits, but fully understand the necessity of these reimbursements for many to receive needed care. We have always prioritized protection of privacy to the highest degree possible, and will continue to use the most non-specific clinical language possible for superbill and insurance reimbursement documentation.

Things to Remember

• • Don’t Let Them Divide Us By Abilities – While many of us do indeed hold jobs and pay taxes, we cannot default to reactions that reinforce notions of our worth as being inextricably tied to our productivity. The worth of Autistic people is not determined by our respective support needs, nor our contributions to capitalism (Remember: This is the rhetoric of eugenics). 
  • Get Involved (if you have the spoons) – Follow Autistic-led organizations like Autistic Self Advocacy Network (ASAN), connect with local mutual aid groups, contact your representatives, and stay active in our communities.

We know many of you are scared, and there is every reason to be concerned. But remember that we are not powerless. The intent of this administration will always be to dysregulate and disempower, so keep standing together. We are with you, and we will get through this.

In Support and Solidarity, 

 

 

 

 

 

 

Jenn Sevier, LPC, LCPC

Owner, Authentic Therapy Services LLC