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The following is a personal essay that reflects the opinions and experiences of its author.
June 12, 2025
In the weeks since officials from the U.S. Department of Health and Human Services (HHS) first announced plans to create an autism registry — then subsequently dubbed its efforts a national “data platform” to “uncover the root causes of autism” — providers like myself have witnessed a notable effect on patients seeking care.
As a clinical psychologist, I specialize in diagnosing and supporting neurodivergent adults. But my clients tell me that they’re cancelling their kids’ pending evaluations for autism, ADHD, or other conditions in other clinics, citing HHS database fears. I’ve also received emails asking whether it’s safe to seek or obtain a diagnosis given the current political climate.
A colleague who diagnoses autism and ADHD in adults reports that people on the practice’s waitlist have been cancelling their appointments, and that no-shows have increased since news of the HHS registry first broke. Another colleague of mine in a children’s autism clinic has developed language to assure patients that their privacy will remain protected.
[Read: NIH Autism Database Sparks Concern of Privacy Violations, Discrimination]
The neurodivergent community is on edge. The fear-mongering dialogue from the HHS — and from its head, Robert F. Kennedy, Jr., who said that “autism destroys families” — is affecting people’s ability to trust scientific experts.
Medical Opinion: Don’t Cancel Your Autism Evaluations and Appointments
I can’t predict what the government will do. As a medical provider, I can say that we are bound by Health Insurance Portability and Accountability Act (HIPAA) agreements to protect patient information, and that de-identified data has been used to understand health trends at a population level for as long as we’ve had insurance systems and the Centers for Disease Control and Prevention (CDC). As profoundly upsetting as the administration’s language has been regarding autism, ADHD, and neurodivergence, I can’t help but think about the growing power of the neurodivergent community. Not all is lost, and there are steps you can take today to remain informed and take charge of your family’s health.
If you are waiting for an autism evaluation for your child — and it’s likely that they’ve been on a waiting list for years, given the ongoing shortage of providers — I believe it would be best to go through with the evaluation. Share your privacy concerns with your provider and ask how they’re protecting your family’s medical information. A diagnosis opens the door to appropriate supports, and its benefits far outweigh any risks at this point, in my opinion. The longer a diagnosis and proper supports are delayed, the greater the impact on a child’s self-esteem and emotional health. In other words, the harm caused by further delaying an evaluation is not worth it.
If you are an adult seeking an evaluation, I encourage you to keep your appointment. An adult evaluation can inform your understanding of yourself and support your therapeutic goals. If you are concerned about what will happen to your medical information, know that most providers who perform adult evaluations don’t take insurance, so there isn’t any insurance system in which to put your information. Still, you should ask about how the practice ensures privacy within their electronic health records system.
[Read: MAHA Report — 3 Takeaways for the ADHD Community]
If you are worried about pursuing an evaluation, know that you also have the option of working with a therapist who can help you with any presenting issues.
The Neurodivergent Community Is Powerful
One of the most powerful forms of resistance is to carry on — to go about our lives and flourish despite our fears, and to continue to advocate. The level of advocacy from this community, from people with lived experience to providers, is unlike anything I’ve ever seen. Autistic parents move mountains to advocate for their children. They create programs where there are none. They find resources, protect, and innovate. Over the last 20 years, the formation of neurodiversity-affirming communities around the world has transformed how we do research and support these families. More informed and empowered than ever before, the neurodivergent community’s ability to protect themselves, advocate, and create change has never been stronger — or more important.
Autism Registry Concerns: Next Steps
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Nathaly Pesantez
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