OARacle Newsletter

Collecting Autistic Peoples’ Health Records

CBS News reported that on Friday, April 25, a Department of Health and Human Services official walked back an earlier National Institutes of Health (NIH) announcement that the health department is creating an autism registry. “We are not creating an autism registry. The real-world data platform will link existing datasets to support research into causes of autism and insights into improved treatment strategies,” an official for the department told CBS News in an emailed statement. 

On Monday, April 21, Jay Bhattacharya, director of NIH, told a panel of experts that the data collection is part of Kennedy’s controversial plan to discover a cause and a cure for autism. He told the panel that “the idea of the platform is that the existing data resources are often fragmented and difficult to obtain. The NIH itself will often pay multiple times for the same data resource,” according to a Guardian article. “Even data resources that are within the federal government are difficult to obtain.” The plan he described included collecting Americans’ private health records from federal and private sources such as hospitals, pharmacy chains, and wearable devices with health sensors, like smart watches, according to numerous news sources.  

The Autistic Self Advocacy Network (ASAN) published a statement following the reversal that welcomed the news. The statement went on to say that “given this administration’s previous actions and comments, particularly those related to autism over the last several weeks, we are not assuming that there is no longer anything to worry about. We will continue to monitor this research initiative, and any other autism-related administration efforts, with extreme vigilance.” 

It also noted that one of the issues with the current administration’s approach to autism policy is that it has “completely frozen out autistic people and many leading autism organizations. Under previous administrations led by both Democrats and Republicans, we and other organizations had direct lines of communication with autism policy experts inside HHS. Back then, we were able to give feedback, raise concerns, and ask questions. If we had been given the opportunity to provide input into Monday’s announcement, we would have urged the administration to clarify important details, such as whether they planned to collect personally identifiable information, and how this data would be used. Since now we get no information beyond what is reported in the press, we have no choice but to apply public pressure to try to get answers for our community.” 

ASAN urged people to get involved, noting that “HHS’ reversal on creating an autism registry shows that even when it seems that no one is listening, your voice matters. Public outcry seems to have caused HHS to change course and walk away from some of the most concerning aspects of the project.”  

Prevalence Has Risen

In a report published on April 17, the CDC stated that autism prevalence has risen to one in 31 children, based on 2022 data, compared to one in 356 in 2020. The report also described a higher prevalence in Asian/Pacific Islander (38.2), American Indian or Alaska Native (37.5), Black (36.6), and Hispanic (33.0) children compared to White children (27.7). Autism is 3.4 times as prevalent among boys (49.2) than girls (14.3).  

Authors of the report noted that at five sites, children in low-household-income neighborhoods had higher prevalence than those in higher income neighborhoods. With more evidence of increased access to early identification, researchers might pay more attention to what factors could lead to higher prevalence among certain populations. The report also noted that identification by the age of four was higher among children born in 2018 compared with children born in 2014, suggesting that early identification is increasing.  

A better understanding of autism and increased screening are behind the steady rise in prevalence, according to experts, as reported by CNN. In that same article, Kennedy in a press conference said that people who accept this explanation are “epidemic deniers” who are playing into an “industry canard.” 

Negative Comments Concern Autistic Community

Kennedy made additional controversial comments at the April 16 press conference, including that autism is an “individual tragedy” and that it “destroys families.” He went on to say that many autistic children were “fully functional” and “regressed … into autism when they were 2 years old. And these are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date. Many of them will never use a toilet unassisted.”  He also said that most cases are severe and that 25% of autistic children “are nonverbal, non-toilet-trained, and have other stereotypical features.”  

Many in the autism community took issue with his descriptions. Zoe Gross, director of advocacy at ASAN, said in a CNN article that his remarks reverse progress made by the autism community in the last decade. “He set up this litmus test of what it is to be a person and have a valuable life,” said Gross. “It’s not acceptable to talk that way anymore because of the work that we’ve done.” 

Kennedy “made it sound like these were people whose lives were worthless, when that couldn’t be further from the case,” Alison Singer, president of the Autism Science Foundation, noted in the CNN article. Her autistic brother and daughter are “loving individuals who are active members of the community and family.” Her daughter lives and works on a farm where she takes care of animals and grows and sells produce and her brother lives in a group home and delivers meals to homebound senior citizens.  

As Politifact reported, a 2023 CDC study did find that 25% of autistic people have severe limitations but that finding is on the high end, and many of those 25% do not have the limitations Kennedy described.  

Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.