Alison Singer has a few people she\u2019d like Robert F. Kennedy Jr. to meet. <\/p>\n
Singer\u2019s brother and daughter are two of the millions living with autism in the United States, and part of a much larger community that has very publicly expressed feeling hurt and disrespected by the US Health and Human Services secretary\u2019s description of who they are and how they live. <\/p>\n
\u201cHe clearly doesn\u2019t understand either one of them,\u201d said Singer, the president of the Autism Science Foundation. <\/p>\n
Singer\u2019s daughter lives and works on a farm where she takes care of animals and grows and sells crops, and her brother lives in group home where he delivers meals on wheels to homebound senior citizens, she said. They\u2019re both loving individuals who are active members of the community and family, she said. <\/p>\n
But Kennedy \u201cmade it sound like these were people whose lives were worthless, when that couldn\u2019t be further from the case,\u201d Singer said. <\/p>\n
At his first news conference as head of HHS, Kennedy said this week that the rising rate of autism in the country is an \u201cindividual tragedy\u201d and \u201ccatastrophic for our country.\u201d <\/p>\n
A new report from the US Centers for Disease Control and Prevention found that autism rates in 8-year-olds in the US rose from 1 in 36 in 2020 to 1 in 31 in 2022. The increase continues a long-term trend that experts have largely attributed to better understanding of and screening for the condition. <\/p>\n
But Kennedy has rejected that concept, instead pushing the idea that autism is \u201cpreventable\u201d and part of a \u201cchronic disease epidemic\u201d that \u201cdestroys\u201d children and families. <\/p>\n
\u201cThese are kids who will never pay taxes. They\u2019ll never hold a job. They\u2019ll never play baseball. They\u2019ll never write a poem. They\u2019ll never go out on a date. Many of them will never use a toilet unassisted,\u201d Kennedy said Wednesday. <\/p>\n
People with autism, their families and advocates were quick to refute Kennedy\u2019s comments. <\/p>\n
Dr. Peter Hotez, dean of the National School of Tropical Medicine at the Baylor College of Medicine, is a vaccine researcher who has an adult daughter with autism whom he wrote a book about. <\/p>\n
\u201cMy adult daughter Rachel, works everyday, pays taxes, has friends, loves going to the movies, and listens to lousy (IMO) music. She has a meaningful and thoughtful life,\u201d he wrote in a social media post on Thursday. \u201cOur U.S. Dept of HHS has lost all of its humanity, compassion, and intellectual curiosity.\u201d <\/p>\n
Many advocates and researchers alike say that Kennedy\u2019s narrow description of autism \u2013 his characterization of both the science and the experience of what living with it can be like \u2013 is reductive and harmful. <\/p>\n
Kennedy\u2019s rhetoric sets the US back at least a decade to a time rife with damaging stigma around autism that the community has fought hard to change, said Zoe Gross, director of advocacy at the Autistic Self Advocacy Network \u2013 one of a group of leading autism advocacy organizations that released a joint statement on Thursday about these concerns. <\/p>\n
\u201cHe set up this litmus test of what it is to be a person and have a valuable life,\u201d said Gross, who is autistic. \u201cIt\u2019s not acceptable to talk that way anymore because of the work that we\u2019ve done.\u201d <\/p>\n
In a social media post on Friday, leadership from technology company Aspiritech championed dozens of people on the team \u2013 more than 90% of whom have autism, they say \u2013 and highlighted ways that their tax-paying employees directly contradict the picture Kennedy painted of autism. <\/p>\n
\u201cWe\u2019d like you to meet 100 people who will help dispel the many misconceptions about autistic people that seem to be driving a false narrative,\u201d the company wrote, inviting Kennedy to visit its offices in Chicago. \u201cWe\u2019d like to talk to you about how the idea of a cure feels like you don\u2019t want autistic people to exist. Autism is a birth-to-death condition, and many diagnosed autistic people view it as a critical piece of their identity.\u201d <\/p>\n
Autism spectrum disorder, or ASD, refers to a broad range of neurodevelopmental conditions characterized by challenges with communication skills and social skills. People with autism \u201cmay behave, communicate, interact, and learn in ways that are different from most other people,\u201d according to the CDC, and \u201cthe abilities of people with ASD can vary significantly.\u201d <\/p>\n
Dr. Lisa Settles, director of Tulane University\u2019s Center for Autism and Related Disorders, has spent more than 20 years in autism research and worked with thousands of patients. None of her patients have been exactly alike, but all of them have value, she said. <\/p>\n
\u201cTo me, it\u2019s very obvious that [Kennedy] doesn\u2019t know a lot about the diagnosis,\u201d she said. \u201cHe\u2019s pulling things together into a theory that isn\u2019t based in any ounce of science, and it\u2019s really frustrating to those of us who are professionals.\u201d <\/p>\n
Kennedy later went on Fox News to \u201cset the record straight.\u201d He doubled down on the limitations that he says people with autism have, but clarified that he was specifically talking about the 1 in 4 people with autism who have \u201csevere autism.\u201d <\/p>\n
A CDC report from 2023 shows that about 27% of 8-year-olds with autism were considered to have \u201cprofound autism,\u201d defined as children who were nonverbal, were minimally verbal or had an intelligence quotient (IQ) less than 50. That report analyzed data from 2000 to 2016. <\/p>\n
The latest CDC report did not include an analysis using this criteria. But other data on the cognitive level of children with autism contradicts Kennedy\u2019s claim that \u201cmost cases now are severe,\u201d or that these cases are driving the rise in prevalence. CDC data from 2022 shows that about 40% of 8-year-olds with autism had an IQ of 70 or less, up less than 2 percentage points from 2020 when about 38% did. <\/p>\n
Early diagnosis of autism is easiest in children who have greater support needs, experts say. <\/p>\n
\u201cWe see them because they\u2019re not meeting their developmental milestones,\u201d Settles said. \u201cThey have speech delay or total lack of speech, so those are going to be the kiddos that are picked up diagnostically first.\u201d <\/p>\n
But some kids with autism who have lower support needs might continue to meet developmental milestones until age 8 or later, and those cases would be missed in the data that CDC is analyzing, she said. <\/p>\n
Advocacy groups over the years have worked to raise awareness to help parents and others understand what their child might be experiencing and seek out a diagnosis. <\/p>\n
\u201cIf the more severe cases are going to be the ones that are brought to your attention earlier, then it may look like the severe cases are increasing. But if you look overall, it\u2019s really that we diagnose just as many kids with a level one as we do a level three,\u201d Settles said. <\/p>\n
And Kennedy\u2019s use of outdated terminology like \u201csevere\u201d is also not in line with current science and can have damaging negative connotations, she said. <\/p>\n
\u201cClinically and professionally, we don\u2019t use the word severe,\u201d Settles said. \u201cIt\u2019s really short-changing the individuals with autism, it\u2019s short-changing the families, and it\u2019s hurtful.\u201d <\/p>\n
Kennedy has launched a \u201cmassive testing and research effort\u201d at HHS to determine the cause of the \u201cautism epidemic,\u201d promising some answers as early as September. There are differing opinions in the autism community about the importance of searching for a cause when limited resources may be better spent understanding how to build support for people living with autism. But there\u2019s broad agreement that Kennedy\u2019s laser focus on environmental toxins is problematic, especially if he continues question science that has already proven that vaccines do not cause autism. <\/p>\n
\u201cThis was the most exciting time in research. Things that we thought five years ago sounded like science fiction were actually happening,\u201d Singer said. \u201cAll that is now under threat to be derailed in favor of more research on vaccines.\u201d <\/p>\n
And advocates emphasize that even if most people with autism can do the things that Kennedy said they can\u2019t, those who may need more support deserve more respect. <\/p>\n
\u201cIf someone can\u2019t do any of those things because of their disability, it doesn\u2019t mean they can\u2019t have a good life,\u201d Gross said. \u201cThey deserve better than being a rhetorical prop.\u201d <\/p>\n<\/p>\n
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