Robert F. Kennedy Jr., Secretary of Health and Human Services, has recently declared his intent to launch a study to uncover the causes of autism, a complex developmental disorder that affects the brain. In the course of his announcement, he made a statement that autism “destroys families”. This has ignited a heated discussion within the community of millions living with autism, with some seeing his remarks as an acknowledgment of their daily struggles, and others viewing them as a misrepresentation of their reality.
There is a broad range of experiences within the autism community. Some, like the Eversoll family of Kansas, see Kennedy’s comments as a recognition of their struggles. Their daughter, Emery, has been suspected of having autism since she was 2, when she memorized an entire book. Today, at 16, she uses poetry as a means of coping with her intense emotions.
On the other end of the spectrum is the Van Den Berghe family of Massachusetts. Their son, Daniel, has profound autism, is unable to speak, and frequently self-harms. The mother, Kelly Van Den Berghe, found Kennedy’s comments as a painful truth about her son’s condition.
This raises important questions about Kennedy’s previous stance on autism. He has spent years suggesting the possibility of a link between vaccines and autism, a claim vehemently refuted by decades of scientific research. This has led to concerns about the credibility of his proposed study.
Families like the Lambs of Austin, Texas, who have two autistic children, are wary of the focus of the proposed study. The mother, Eileen Lamb, hopes that the study will not revolve around vaccines, as research has firmly concluded there is no link. Instead, she would like to see more focus on how to support families living with autism.
Reports from Ohio indicate that Scott Copeland, a father with autism and parent to two autistic children, shares Lamb’s skepticism. He firmly believes that Kennedy’s lack of personal experience with the disorder disqualifies him from leading such an important study.
On one hand, there is a desperate need for further research into autism, its causes, and how to support those living with it. On the other hand, the fears of those within the community are valid, given Kennedy’s past controversial comments and stated beliefs.
Kennedy has promised to soon begin awarding grants to a team of 15 scientists who will study autism. However, he has not yet provided any details about who will lead these studies. This development follows earlier reports that Kennedy has described autism as a “preventable disease”, a statement that has drawn criticism from families and scientists who believe genetics plays a significant role.
As Kennedy moves forward with his study, families await with a mix of apprehension and hope, desire for answers mingled with concerns about the study’s focus.
