Cnn
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Alison Singer has a few people she would like Robert F. Kennedy Jr. to meet.
The singer’s brother and daughter are two of the millions living with autism in the United States, and part of a much wider community that has very publicly expressed his feeling of injury and disrespect by the secretary in the United States of health and social services of whom they are and the way they live.
“He does not clearly understand any of them,” said Singer, president of the Autism Sciences Foundation.
The singer’s daughter lives and works on a farm where she takes care of animals and grows and sells crops, and her brother lives in a group home where he delivers meals on wheels to the elderly at home, she said. They are both magnetic people who are active members of the community and the family, she said.
But Kennedy “gave the impression that they were people whose life was worthless, when it could not be further away from the case,” said Singer.
At his first press conference as HHS chief, Kennedy said this week that the increase in the autism rate in the country was an “individual tragedy” and “catastrophic for our country”.
A new report of the Centers for Disease Control and Prevention of the United States has revealed that autism rates in children aged 8 years in the United States increased from 1 in 36 in 2020 to 1 out of 31 in 2022. Continuous increase a long-term trend that experts have largely attributed to better understanding and detection of the disease.
But Kennedy rejected this concept, rather pushing the idea that autism is “avoidable” and is part of a “chronic illness epidemic” which “destroys” children and families.
“These are children who will never pay taxes. They will never work. They will never play baseball. They will never write a poem. They will never go out to an appointment. Many of them will never use a toilet without help,” said Kennedy on Wednesday.
Autistic people, their families and their defenders quickly refuted Kennedy’s comments.
Dr. Peter Hooz, dean of the National School of Tropical Medicine at the Baylor College of Medicine, is a vaccination researcher who has an autistic adult girl on which he wrote a book.
“My adult daughter Rachel, works every day, pays taxes, has friends, likes to go to the movies and listen to ugly music (OMI). She has a significant and thoughtful life,” he wrote in an article on social networks on Thursday. “Our US HHS department has lost all of its humanity, compassion and intellectual curiosity.”
Many defenders and researchers say that the narrow description of Kennedy’s autism – its characterization of science and experience of what can be likely – is reductive and harmful.
Kennedy’s rhetoric brings back the United States at least a decade at a time with a harmful stigmatization around autism that the community fought hard to change, said Zoe Gross, director of advocacy of the Defense Network for Autism Autism-One of the main Autism Defense Organizations that published a joint declaration on these concerns on Thursday.
“He has implemented this decisive test of what it is to be a person and to have a precious life,” said Gross, who is autistic. “It is no longer acceptable to speak in this way because of the work we have accomplished.”
On Friday, in an article on social networks, the leadership of the technological company Aspiritech defended dozens of people in the team – more than 90% of whom have autism, they say – and stressed that their employees contuded against the contributions directly contained the image that Kennedy painted autism.
“We would like you to meet 100 people who will help dissipate the many false ideas on autistic people who seem to lead a false story,” wrote Kennedy to visit his offices in Chicago. “We would like to tell you about how the idea of a remedy seems that you don’t want people to exist. Autism is a state of birth to death, and many autistic people diagnosed consider it a critical element of their identity. ”
Autistic spectrum disorder, or TSA, refers to a wide range of neurodevelopmental conditions characterized by challenges with communication skills and social skills. Autistic people “can behave, communicate, interact and learn in a different way from most others”, according to the CDC, and “the capacities of TSA people may vary considerably”.
The DRE Lisa Settles, director of the Center of Autism and related disorders at the University of Tulane, has spent more than 20 years in autism research and worked with thousands of patients. None of her patients have been exactly the same, but everyone has value, she said.
“For me, it is very obvious that (Kennedy) does not know much about the diagnosis,” she said. “It brings things together in a theory that is not based on an ounce of science, and it is really frustrating for those of us who are professionals.”
Kennedy then faced Fox News to “set the record straight”. He doubled on the limits which, according to people with autism, but said that he spoke specifically about the 1 people out of 4 autists who are “severe autistic”.
A CDC report of 2023 shows that around 27% of 8 -year -old children with autism were considered “deep autistic”, defined as non -verbal children, were not very verbal or had an intelligence quotient (QI) less than 50. This report analyzed the data from 2000 to 2016.
The latest CDC report did not include analysis using these criteria. But other data on the cognitive level of autistic children contradict the assertion of Kennedy that “most cases are now serious”, or that these cases lead to an increase in the prevalence. CDC data of 2022 show that around 40% of children of 8 years with autism had an IQ of 70 or less, up less than 2 percentage points compared to 2020, while about 38% did.
The early diagnosis of autism is easier in children who have greater support needs, according to experts.
“We see them because they do not respect their development steps,” said Settles. “They have a delay in speaking or a total lack of speeches, so it will be children who are resumed diagnosed first.”
But some autistic children who have lower support needs could continue to respect development stages until the age of 8 or later, and these cases would be missed in the data that CDC analyzes, she said.
Over the years, advocacy groups have worked to educate parents and others to understand what their child could experience and seek a diagnosis.
“If the most serious cases will be those which are brought to your attention earlier, it may seem that the serious cases increase. But if you look overall, it is really that we diagnose as many children with a level one that we have a level three,” said settles.
And the use by Kennedy of obsolete terminology as “severe” is not in accordance with current science and can have harmful negative connotations, she said.
“Clinically and professionally, we do not use the severe word,” said Settles. “It changes courtes to autism, he changes his short circuit from families, and it’s injuring.”
Kennedy launched a “massive test and research effort” at HHS to determine the cause of “the autism epidemic”, promising certain answers in September. There are different opinions in the community of autism on the importance of looking for a cause when limited resources can be better spent to understand how to strengthen support for people living with autism. But there is a large agreement that Kennedy’s laser concentration on environmental toxins is problematic, especially if he pursues the science of questions which has already proven that vaccines do not cause autism.
“It was the most exciting period of research. The things we thought five years ago looked like science fiction really happened,” said Singer. “Everything that is now threatened with being derailed in favor of more research on vaccines.”
And the defenders point out that even if most autistic people can do things that Kennedy said they couldn’t, those who may need more support deserve more respect.
“If someone cannot do these things because of their handicap, it does not mean that he cannot have a good life,” said Gross. “They deserve better than being a rhetorical accessory.”
