Autism Registry- My thoughts on recent news and how I manage my patient's privacy

Maybe it's not time to take off the mask

I thought about writing an Autism Awareness post this year, but I found I couldn’t bring myself to say “Happy Autism Day.”

Instead of celebration, I’m met with the reality that dozens—if not hundreds—of my patients are feeling afraid, and rightfully so. The headlines we’re seeing are concerning. Rarely, if ever, have we felt this vulnerable, this targeted, or this unheard.

Awareness alone is no longer enough. What we need now is true understanding. Advocacy. Safety. Compassion. We need a world that doesn’t just acknowledge autism one day a year but embraces and protects neurodivergent people every single day.

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Mental health care is under attack. In February, SAMHSA faced a 10% funding cut—followed by a devastating 50% cut and is now being absorbed into the Administration for a Healthy America (AHA). The suicide crisis line is overwhelmed and understaffed. The National Association for Mental Illness (NAMI) expressed they are “deeply concerned” about the plan.

Now a public figure with no medical training wants to spear head medical research and expects results in less than 6 months. However, this research is already ongoing and has been conducted for decades with no definitive answers.

Some data is already tracked

It is standard medical practice to track health outcomes using de-identified data. This allows us to evaluate the effectiveness and safety of treatments—without ever exposing personal identities. For example, when you’re choosing a medication or surgery, knowing the risk for serious complications—whether it’s 0.1% or 20%—is essential. But the data used for those statistics is anonymous and confidential. Your identity is never part of that equation.

The Autism Science Foundation recently stated: “The use of registries and registry data in general can be a valuable tool in helping to understand the causes of diseases and disorders, but in this case, the lack of clarity around how data will be collected, shared, maintained, and tested for accuracy raises red flags.”

Let me reassure you: medical professionals, advocacy groups, and concerned citizens are pushing back—with everything we’ve got.

And it's working.

The Federal Health Department has confirmed it is not creating a new autism registry, and the Department of Health and Human Services (HHS) reaffirmed this in a statement released Thursday, April 24, 2025.

The truth is, you cannot slash federal health department budgets this drastically and expect to launch a project of this scale. I have spoken directly with contacts at HHS and NIH who, off the record, have described the proposal and its timeline as “unrealistic.”

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Let me be absolutely clear: I am a solo practitioner, and my career is wholly dedicated to supporting neurodivergent individuals. Your information is safe with me. It is secure, private, and will never be shared without your explicit consent. Ever.

I will also meet you wherever you are in your journey with autism. It is perfectly fine to receive care without formal testing or a documented diagnosis. I call this diagnosis Autism Phenotype—meaning you meet clinical criteria, but no official diagnosis. I also do not have to submit a diagnosis to your insurance. This path offers you support without the weight of a medical label in your permanent records.

You are seen. You are safe. You have options.

If no one has told you recently: you matter, exactly as you are. And I will continue to fight for a world that reflects that truth in both word and action.

Let me know your thoughts in the comments.