When Robert F. Kennedy Jr., the Secretary of Health and Human Services, declared that some children with autism would never write poems, Emery Eversoll and her mother couldn't help but share a chuckle
Emery, a 16-year-old girl from Kansas, has filled her room with notebooks of her own poetry. She often uses her verses as a calming mechanism during bouts of anger. Her mother had suspected Emery might be autistic when she memorized an entire book at the tender age of two. Despite this, the family remains hopeful about Kennedy's plans to initiate a comprehensive study on the causes of autism.
According to the Associated Press, Kennedy has pledged to identify some of the causes of autism by September. Autism, a complex developmental disorder that affects the brain and can cause delays in language or learning, social withdrawal, and an unusual need for routine, has been the subject of study for decades.
Kennedy's comments about autism, stating that it "destroys families" and that children with autism "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," have caused a divide among the millions of people living with autism.
For some, Kennedy's words were a long-overdue acknowledgment of the daily struggles faced by families with autistic loved ones. However, others felt that Kennedy had grossly misrepresented the realities of their disability, raising concerns about his ability to conduct a thorough assessment of the disorder.
There are also concerns about Kennedy's long-held belief that vaccines might cause autism, a claim that has been debunked by decades of scientific research.
Scott Copeland, a 56-year-old father from Ohio, who is himself autistic and the parent of two autistic children, expressed skepticism about Kennedy's ability to conduct a legitimate study. "It'd be like standing up and saying you're going to have the cure for cancer in six months," Copeland said. "Angry isn't a sufficient word."
Kennedy's grim depiction of life with autism resonated with Kelly Van Den Berghe, a mother from Massachusetts. Her 18-year-old son, Daniel, has profound autism. Daniel cannot speak and often harms himself. Doctors recommended a full-time residential facility for his safety a decade ago, a decision that still brings tears to Van Den Berghe's eyes. "My child, I do truly believe, that if he were able to tell us, he would not want autism because this has not affected him in a positive way," she said.
Eileen Lamb, a mother from Austin, Texas, who was diagnosed with autism after noticing signs in her first son, Charlie, also knows the struggles of living with autism. Charlie, now 12, requires constant supervision due to his habit of eating non-food items. Lamb shares her experiences on a blog, celebrating family victories and mourning missed milestones. She believes that Kennedy's comments, while harsh, do not define the value of her children's lives. "The language we use matters," she said.
Kennedy's description of autism as a "preventable disease" has unsettled families who believe genetics are the primary cause of autism. Ashley Seliquini, a 40-year-old mother and speech pathologist from Greensboro, North Carolina, sees clear connections in her family. Both she and her 5-year-old daughter have been diagnosed with the disorder. "You see it run in families," Seliquini said. "Sometimes the parents are not aware that they are autistic. After their child gets diagnosed they go, 'Oh, my goodness, I'm autistic, too.'"
Kennedy's rejection of the explanation that increased awareness has led to a rise in autism cases has caused further controversy. Both he and President Donald Trump have suggested that vaccines could be to blame for rising rates of autism, despite longstanding research that says otherwise. The National Institutes of Health has identified other environmental risk factors such as prenatal exposure to pesticides or air pollution, extreme prematurity, or parents who conceive at an older age.
Kennedy recently announced that the health department would start awarding grants to a team of 15 scientists who will study autism, although he has provided no details about who will lead the studies. Families like Eileen Lamb's hope that the studies do not focus on vaccines, as researchers have already firmly concluded there is no link. Instead, they would like to see a focus on ways to support families living with autism. "It's not just about what's the cause but how do we help," she said.
For Van Den Berghe, Kennedy's study may hold the answers she's been seeking since Daniel was diagnosed many years ago. Despite research finding no link between vaccines and autism, she remains unconvinced.
Daniel's severe reaction to the shots all those years ago is the only thing she can point to as a cause; no one else in her family has been diagnosed with autism. "Why did this happen to him?" she asked. "I've been searching for years and years and years."
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