People are talking about RFK Jr. and it’s not for a good reason. His recent announcement about creating an Autism registry, as well as his comments about autism in general, have shocked, angered, and frightened people. This is particularly so for those who have autism. RFK Jr.’s approach involves extensive monitoring along with cuts to disability services. Many of his proposed tactics have people wondering – is this even legal?
Autism Registry: A Controversial Monitoring Program
The newly-appointed health secretary RFK Jr. has announced that he plans to conduct a vast study on Autism. He says that he is going to do so using private health records from federal and commercial databases. In addition to this, he is going to build a new health registry that will track autistic Americans. This has sparked fear and astute opposition from autism experts, advocates, and much of the general public.
Cuts to Disability Services
This is not the only thing people are worried about when it comes to RFK Jr.’s new plan. A leaked draft of proposed cuts within the United States Department of Health and Human Services (HHS) reveals plans to eliminate crucial support for individuals with disabilities. This includes education, research, and services for these people. This has caused much alarm within the autism research community. Professor Daniel Geschwind from the UCLA Center for Autism Research and Treatment warns of the negative impact that this could have on advancements in autism research and treatment. He says researchers were poised to make some big advances in Autism research. These cuts will all but stop them in their tracks.
“It’s going to have an enormous chilling effect,” he said.
Misinformation Surrounding Autism
This comes as a second wave against RFK Jr. related to Autism. During his first conference as health secretary, he claimed that autistic individuals do not contribute to society or lead fulfilling lives. He described autism as a destructive force on families. He claimed that those with autism will never do things such as play baseball, go out on dates, pay taxes, write poems, or hold down jobs. He went on to say that autism was caused by an environmental toxin. All of this has been refuted by researchers, not to mention by autistic people themselves who lead very full, productive lives. Naturally, his statements drew widespread criticism and condemnation from the public, especially those within the autism community and advocacy groups.
Attempting to Clarify
No one seemed more surprised than Kennedy Jr. himself at the backlash. On Jesse Watters’ Primetime show, he said he was shocked at the outrage people had, attributing people’s anger to his goal of uncovering the root cause of autism. He said that he was working towards finding the cause of autism within one year, explaining that Trump specifically asked him to do so. He also attempted to clarify his comments in an interview with Fox News. JFK Jr. said that his statements about autistic people’s lives and productivity were specifically referencing the 25% of autistic people who are nonverbal. He emphasized that there are many individuals with autism who are leading successful, independent lives.
“Let me say this,” he said to Fox New’s Sean Hannity. “There are many kids with autism who are doing well. They’re holding down jobs, they’re getting pay checks, they’re living independently. But I was referring specifically to that 25 percent—the group that is nonverbal.”
Privacy Concerns and Implications of the Registry Plan
Unsurprisingly, people are very concerned about the proposed program and cuts. The proposed monitoring program and cuts to disability services have raised concerns about the erosion of rights for people with autism and disabilities. The Trump administration’s actions, including funding cuts for research and services related to autism, threaten to impede progress in understanding and supporting individuals with autism.
The announcement has sparked significant apprehension and raised concerns about privacy among individuals and experts in the field of autism. Many are not sure how RFK Jr.’s plan can collect the data he says that he will collect while still remaining compliant with privacy laws and regulations. In a TikTok video, Dr. Joel Shulkin questioned the collection of such a vast amount of data. He also raised concerns about potential violations of HIPAA laws, which safeguard patients’ privacy. Despite the administration saying that they will de-identify the data to prevent misuse and ensure patient safety against exploitation or discrimination, Dr. Shulkin isn’t so sure. He wants to know how exactly they plan on doing that.
“How are they going to collect all this data without violating HIPAA laws and privacy protection?” He wondered aloud in his video. “How are they going to de-identify all the data so that it cannot be misused against people who are involved in it? And what are they planning to do with that data once they finish their so-called study?”
Fears and Conspiracies
The fear of repercussions from being included in this registry has led to disturbing conspiracy theories suggesting eradication of autistic individuals and heightened discrimination against those with disabilities. Some have even likened this type of action as those taken by the third Reich back in the days of World War Two. The lack of transparency surrounding the registry’s objectives and the data’s eventual use has fueled further suspicion and anxiety within the community.
What’s worrying more people is that RFK Jr, a long time vaccine skeptic himself, seems to be enlisting only scientists and researchers who have the same view point as himself in regards to autism and vaccines. His inclusion of vaccine skeptic David Geier, whose controversial history and past disciplinary actions related to his anti-vaccine beliefs further underscore the concerns about the integrity of the research and the potential implications for individuals included in the registry. This, despite the fact that an incredibly vast array of research already shows that 80-90% of autism is genetic and that the idea that vaccines might cause autism has been debunked more times than one can count.
Looking Ahead
Kennedy’s commitment to investigating the causes of autism and his assertion that definitive answers will be provided within a year has not assuaged the concerns of critics who view his statements as misguided and harmful to the autism community. Despite his attempts to clarify his position, the controversy surrounding his remarks remains a point of contention. This is only further aggravated by his plans to create an Autism registry and use people’s private data to track and study them. One thing is for certain: Kennedy Jr. has a lot of explaining to do.
