Robert F. Kennedy Jr., secretary of health and human services, made the comment that some autistic children may never create poetry, which made Emery Eversoll and her mother giggle.
There are many notebooks in the 16-year-old’s bedroom that contain her poetry. When she needs to calm herself after an angry outburst, she may sometimes recite poetry. Part of the reason her mother started to suspect autism in her daughter was because, by the age of 2, she had remembered the whole text of a beloved book.
Despite this, the family from Kansas is hopeful about Kennedy’s intentions to begin a comprehensive investigation into the roots of autism, a complicated developmental illness that affects the brain and manifests itself in social withdrawal, an extraordinary demand for regularity, and delays in language or learning. Despite decades of research, Kennedy is committed to finding autism’s causes by September.
Autism “destroys families,” according to Kennedy. He made the statement that autistic youngsters “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”. They will always need assistance using the restroom.
A community of millions of autistic individuals has been shattered by his remarks and his intention to quickly investigate its origins. Some saw them as long-overdue acknowledgment of the struggles faced by families with autistic members in their daily lives. Others were worried that Kennedy couldn’t do a comprehensive evaluation of the disease since he grossly distorted the facts surrounding their handicap.
There are others who are concerned about Kennedy’s long-standing claims that vaccinations might cause autism, even though there has been no proven relationship between the two in decades of scientific studies.
Scott Copeland, an autistic father from Ohio who has two autistic children of his own, doubts that Kennedy would carry out an honest investigation.
“It would be the equivalent of declaring that a cancer cure will be available in six months,” Copeland, 56, added. “I am not angry enough.”
Every day may be a battle when you have autism.
Kennedy painted a bleak picture of the lives of autistic people while announcing efforts to investigate the disorder’s origins.
Kelly Van Den Berghe feels that Kennedy’s remarks highlight a harsh truth that her kid faces. A mother of five from Massachusetts, Daniel is 18 years old and severely autistic.
Even though he uses a tablet to communicate, Daniel is unable to talk. Every time he hits himself, he puts himself at danger of a concussion or fracture. For his own protection, physicians advised that he check into a residential institution full-time around ten years ago. His mother finally agreed to that after much deliberation; recalling the choice still brings tears to her eyes.
According to Van Den Berghe, her child would not prefer autism if given the chance. She believes that the condition has negatively impacted her child. “It is truly remarkable that someone has finally acknowledged my son and his population.”
That was also how the Eversolls took Kennedy’s remarks. Fits of wrath are a problem for Emery Eversoll. She may get annoyance from too loud sounds. You may even have to turn your jeans or socks inside out to get them to fit properly because of how strange they feel.
According to Jessica Eversoll, parenting can be challenging when children face additional challenges. “Just like if your little one had been born without a hand, they’d still be the same kid, but they’d have a hard time finding their way around.”
Those challenges are familiar to Eileen Lamb. After she began to see symptoms in her first son Charlie, who may have autism, a decade ago, she was diagnosed with autism herself.
Living in Austin, Texas, with Charlie, Jude, a 9-year-old with autism, and Billie, a 2-year-old sister, can be quite a challenge at times.
Charlie, who is 12 years old, nevertheless needs close monitoring at all times. He has a nasty tendency of eating things that aren’t food, like the screw he swallowed last year. In the middle of the night, she keeps an eye on Charlie using a security bed shaped like a tent, a motion detector, and a video camera to make sure he doesn’t hit his head or attempt to eat the walls. In her blog, Eileen Lamb documents her experiences with treatment, celebrates family victories (such as taking all three children to a soccer game), and laments the lost milestones in Charlie’s life.
Similar to what Kennedy said last month when explaining autism, Lamb has stated that it is highly unlikely that Charlie would ever play baseball or go on a date. However, she does not solely focus on her child’s limitations.
“I get where he was going with his comments,” Lamb, who doubles as the head of social media for Autism Speaks, a national group, said. Still, I don’t think that’s a fair way to put a price on our kids’ lives. The words we choose have an impact.
Copeland, a parent from Ohio, shares Kennedy’s belief that his kid, who is 21 years old, had autism. He stays at home with his non-verbal kid, who needs care at all hours of the day and night since he has no awareness of danger.
But Copeland could see from Kennedy’s remarks that he had no background dealing with the issue.
He expressed his disapproval of those posing as experts when in fact they are completely ignorant about the subject.
Determining the etiology of autism has been a challenging and fruitless endeavor.
Autism, according to Kennedy, is a “preventable disease.”
Families who have finally found the answer to the mystery of autism’s origins are understandably distraught. Genetics is a major component, according to scientists as well.
Ashley Seliquini, a speech pathologist and mother of four from Greensboro, North Carolina, can make the relationships in her family tree very obvious. The condition has been identified in both her and her 5-year-old daughter. They both experience spells where they can’t talk. Similarly, her daughter is also easily startled by really loud sounds.
“It seems to be a family thing,” Seliquini explained. “It happens when parents don’t know their child is autism. They say things like, “Oh my goodness, I’m autistic too,” after their child receives the diagnosis.
Experts in the medical field believe that the recent uptick in autism diagnoses—affecting around one in thirty-one American children—is due to heightened public awareness of the illness, particularly in relation to its milder manifestations.
That explanation has been categorically denied by Kennedy.
He and President Trump have both cast doubt on the efficacy of vaccinations in reducing autism rates, despite mounting evidence to the contrary. Additional environmental risk factors recognized by the National Institutes of Health include exposure to air pollution or pesticides during pregnancy, extremely premature birth, or parents who conceive at a later age.
Kennedy did not specify who will head the autism research teams, but last week he told CNN that the health department will begin funding a group of fifteen researchers to examine the disorder.
Researchers have previously determined there is no correlation, therefore Eileen Lamb is crossing her fingers that vaccinations are not considered in the studies. She would rather that efforts be directed towards helping families similar to hers.
She emphasized that how they may assist rather than focusing just on the reason.
Van Den Berghe has been struggling to find answers since Daniel’s diagnosis many years ago; she believes Kennedy’s work may carry some of those answers. Despite knowing that studies have failed to establish a connection between immunizations and autism, she remains unconvinced. Since no one else in her family has ever been diagnosed with autism, she can only attribute Daniel’s autism to his terrible response to the vaccinations he had years ago.
“What allowed this to transpire to him?” “She said,” she exclaimed. “For what feels like an eternity, I have been on the hunt.”