Connecticut families are responding to the U.S. Health and Human Services Secretary Robert F. Kennedy Jr.'s claims about autism.
WSHU’s Ebong Udoma spoke with CT Mirror’s Laura Tillman to discuss her article, “After RFK Jr. autism claims, CT families respond — one with a poem,” as part of the collaborative podcast Long Story Short.
WSHU: How did the story about Connecticut families and their reaction to RFK's comments about the autistic come about?
LT: So I think like a lot of people after RFK held a press conference in April about autism numbers, and more broadly about this effort to find an environmental cause of autism, I saw a video that was posted online with some of the cast members of Love on the Spectrum, which is a Netflix reality show about people with autism spectrum disorder who are who are dating, who are looking for relationships. And some of the cast members of that show are speaking out about language in RFK's comments that they found offensive, and it just made me think that there might be a bigger story to be told about how this rhetoric and some of these actions might be impacting people.
WSHU: How did you find Emma and Pamela McKeever, and could you first tell us a little bit about them?
LT: Pamela and Emma live in Glastonbury, and Emma is an artist. She lives at home with her parents, and she and her mom do a lot of different artistic projects together. They had some, you know, strong feelings about some of RFK's comments, which prompted Emma to write a poem, and also Pamela wrote her own poem, in fact. Kind of in response to some of the things that RFK said, including one of his comments, was that, you know, these are children who will never write a poem.
WSHU: Now, there's a quote you have here — "If you've met one person with autism, you've met one person with autism." Tell us a little bit about that quote itself.
LT: This is a quote from Dr. Steven Shore, who is an autism specialist, and I think it's something that you often hear talking to people, whether they're in this community or people who are part of the advocacy broader community around autism, you know, autism is not a condition that you can see in a genetic test, the way that you might see Down syndrome or some other conditions. It's more something that's diagnosed based on behavior and it really is an incredibly broad category. Years ago, there were more subcategories in terms of, you know, Asperger's and, but now all of these things are classified as autism, and so it's a descriptive term in the sense that autism can mean a lot of different things.
WSHU: Now, RFK in his comments at the press conference, seemed to indicate that there was some environmental cause to autism and that there'd probably be a cure in the next few months. What does the community feel about those statements?
LT: Just to clarify, he's saying that they would identify the cause within the next few months, not necessarily a cure. But I think that even so, it seems, you know, for people who have been studying this for a long time, there's been a tremendous amount of effort to find the cause, and the research predominantly points to a genetic, biological set of causes. It may not be as clear-cut as something like Down syndrome, but there is, you know, a preponderance of evidence talking to scientists who study this, that it is primarily something that is genetic rather than environmental. There have been some isolated studies that have shown that a particular, you know, toxin in a particular place has led to a higher incidence of autism, but I think in general, researchers agree that that the environment may be a, a factor in autism, but it is likely to be sort of a very minor piece of the picture.
I think also in part because the Secretary of the Department of Health and Human Services, Robert F. Kennedy Jr., has for many years focused on the possibility that vaccines could be a cause for autism. And so I think there is concern about continuing to stoke that belief and the fact that that could have very serious effects, and people not vaccinating their children, and that those effects can be deadly, whereas, you know, there is no research — there isn't a significant amount of mainstream research or, I should say that, scientists in general don't believe that there's any link between vaccines and autism, in the mainstream.
WSHU: However, it seems most of the people you talked with are happy that attention is being paid to this. However, they're concerned that it might not be the proper type of attention. Would I be correct in saying that?
LT: Some people might feel, I did speak to one woman, you know, whose son has more significant challenges, related to his, his autism, and she did feel, you know, this gratification that at least there was sort of this renewed burst of attention and And I heard that echoed in comments from other people that they had kind of heard that from, you know, some people in this community. But I think in general, there is a real concern that the type of attention that is being paid is potentially damaging, creating renewed stigma around autism diagnosis, and I think it's important to note that, you know, more kids are being screened for autism than ever before. So, that is part of the picture of the increase in diagnosis, and that can actually really benefit those children and their families. You know, if a child is diagnosed early and they're able to get educational interventions, or therapies that help them, manage some of the, the behaviors and sensory issues that can be associated with autism that it can really help them thrive, over, over their lifespan. And so this idea of wanting to avoid a diagnosis or avoid being part of this community because there's this renewed burst of stigma and attention, I think, is something that people are concerned about.
WSHU: And also something that you say people are concerned about is the fact that some of the services have been cut in the elimination of waste, fraud, and abuse by the Department of Government Efficiency. Could you tell us a little bit more about that?
LT: Some services have been cut that benefited the elderly and disabled already and then there are concerns about other, other services, you know, there, there has been this, Effort to dismantle the Department of Education and a lot of the federal funding that states receive from the Department of Education goes towards special education. So that is a major concern, and then there are also concerns about whether there would be major cuts to Medicaid. There have already been a number of autism-related NIH grants that have been canceled, and there are concerns about whether more could be coming.
WSHU: How about the concern about the fact that RFK, in his comments, has talked about creating some type of tracking system for people with autism and having a database.
LT: The database idea, I think it's still a little bit unclear what it would actually do, but that is part of what is alarming to people, is, you know, is this a tracking system or is this anonymized data collection? The stated purpose of this is to look for an environmental cause of autism and to look at whether there are commonalities that can be identified among people with autism that could lead to some kind of scientific advance in terms of understanding the cause. But when I spoke to one of the researchers at Yale, who studies this issue, you know, he did say that there is already a database that collects information about people with autism spectrum disorder. It does so, you know, according to U.S. laws, in which that data is anonymized. People have to choose to opt into this, so it's kind of unclear why there would need to be another database or what RFK is seeking to find that can't be found through the scientific data that already exists.
I think that just the language around this idea of a database is really alarming to people, and it's one of the main things that I heard from people that I spoke to and also just people who interact with this community is there's a lot of fear around. So that's definitely part of his comments and his plans that have, in particular, inspired a lot of concern, and it is part of what's driving some parents to not want their children to be diagnosed at all because they don't want them to be on this database.
