A recent proposal to create a federal autism registry has ignited a wave of concern among disability rights advocates and families. The plan, announced by Health and Human Services Director Robert F. Kennedy Jr., would involve collecting personal medical data from individuals on the spectrum to build a national database for autism research.
While the goal of advancing scientific understanding may seem worthwhile on the surface, autism advocates across Colorado are calling the move misguided, invasive, and harmful. At the heart of the opposition is a firm belief that such efforts must prioritize consent, accuracy, and respect for the lived experiences of individuals with autism—not treat them as data points.
Autism Is Not a Disease—It’s a Neurological Difference
RFK Jr.’s comments, including calling autism a condition that’s “destroying families” and something “we are doing to our children,” have been widely condemned by disability advocates, parents, and professionals. Statements like these not only perpetuate outdated stigmas but also frame autism as something to be fixed or eliminated, rather than understood and supported.
As Felix Ortiz of Disability Law Colorado stated, “It sounds as though the secretary doesn’t really have a lot of background information about what autism is.” For many families, autism is a natural part of their loved one’s identity—and efforts to pathologize or control it without community input are deeply offensive.
Concerns Over Privacy and Consent
Central to the backlash is the question of how data will be gathered and who gets to decide. Advocates stress that any autism research must be transparent, consensual, and governed by strict ethical standards. Families should never be forced into giving up sensitive medical information without full knowledge of how it will be used and who will access it.
A joint statement from advocacy groups calls on lawmakers to intervene and ensure that research practices respect individual rights. They insist on opt-in systems, not blanket data collection, and demand that oversight is in place to prevent misuse or breaches of medical privacy.
Real Progress Comes From Compassionate Care
While large-scale research may have a role to play in shaping public health policies, it cannot replace the immediate, human-centered support that autistic individuals and their families need right now. At Spirit ABA, we focus on what truly makes a difference: individualized, compassionate autism services grounded in trust, respect, and evidence-based care.
If you’re looking for trusted autism services in New York, we’re here to help. Our team is committed to providing high-quality ABA therapy tailored to each child’s strengths, needs, and goals—without compromising their dignity or autonomy.
Reach Out Today
If you’re concerned about access to ethical autism care or looking for the right support for your child, we’re here for you. Reach out today to schedule a consultation, learn more about our personalized approach, and get the answers you need. At Spirit ABA, we believe in transparency, inclusion, and real support—because every family deserves care they can trust.
