As you probably already know, there has been some announcement of plans to research the prevalence of autism on a national scale and find its cause by September.
RFK Junior, the lawyer who has relentlessly advocated against Vaccines, recently said he was taken aback by Autism Rates and would like to see them officially investigated.
Plan to collect data for a nationwide study on autism
Later, it was announced that data would be collected for a nationwide study on autism, which has sparked criticism and opposition. While collecting data provides valuable insights and aids in research, there’s no denying that it also raises concerns about privacy and ethics, more so if government agencies are involved, and it’s not made clear how the information will be used.
This is why the move has been met with pushback and criticism, leading to discussions and debates on the potential benefits and drawbacks of conducting such a study.
It all began when a top health official, Dr. Jay Bhattacharya, said the government is starting a new study on autism. He said they planned to use information from many places, like pharmacy records, health insurance claims, DNA tests, and even data from smartwatches. This made a lot of people worry that the government was creating a list to track autistic people. In response to the growing concerns among the population, the Department of Health and Human Services came out and said they are not creating a list or tracking registry.
Rather, they say they’re building a system that connects existing data to help researchers better understand autism. Even so, many in the autistic community feel uneasy, worried about how their personal information might be used.
Autism personal data without consent
Since the announcement, many autistic individuals have expressed shock and uncertainty. “He wants our personal data without our consent,” one person said, echoing a growing concern in the community. Not to mention that, again, RFK Jr. has already come under fire for calling autism a “preventable disease” and an “epidemic,”. This language is unacceptable for many ASD individuals and even for neurotypical individuals. It makes many feel dehumanized.
What is Autism
Autism is a neurological difference that affects how a person thinks, communicates, and experiences the world. It’s not a disease as in malaria or catching cold—it’s a natural variation in how brains work. Some autistic people, especially those on the more visible or high-support end of the spectrum, may need daily assistance and strong support systems. Others may live independently, have successful careers, and may not need much—or any—external help.
Autism is a broad spectrum, and every individual is different. But across the board, what autistic people need most is respect, choice, and dignity, not to be treated like they’re broken or dangerous.
Sacramento ABA Therapy
At SAT, we interact with ASD parents, caregivers, and autistic children every day, and we understand how much misinformation can cause confusion and anxiety to families and even for the Autism community as a whole. Our mission has always been to listen, support with compassion, and advocate for respectful, person-centered approaches to autism.
As this national conversation unfolds, we remain committed to standing with the autistic community—protecting their rights, amplifying their voices, and promoting understanding over fear.
Don’t hesitate to contact us for Autism Diagnosis and support.
