Many in the autism community say RFK Jr. is pushing harmful and regressive rhetoric about who they are

CNN Alison Singer has a minimal people she d like Robert F Kennedy Jr to meet Singer s brother and daughter are two of the millions living with autism in the United States and part of a much larger group that has very publicly expressed feeling hurt and disrespected by the US Wellness and Human Services secretary s description of who they are and how they live He clearly doesn t understand either one of them commented Singer the president of the Autism Science Foundation 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 group home where he delivers meals on wheels to homebound senior citizens she explained They re both loving individuals who are ongoing members of the area and family she explained But Kennedy made it sound like these were people whose lives were worthless when that couldn t be further from the matter Singer reported At his first news conference as head of HHS Kennedy mentioned this week that the rising rate of autism in the country is an individual tragedy and catastrophic for our country A new summary from the US Centers for Condition Control and Prevention located that autism rates in -year-olds in the US rose from in in to in in The increase continues a long-term trend that experts have largely attributed to better understanding of and screening for the condition But Kennedy has rejected that concept instead pushing the idea that autism is preventable and part of a chronic disorder epidemic that destroys children and families These are kids who 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 A great number of of them will never use a toilet unassisted Kennedy revealed Wednesday People with autism their families and advocates were quick to refute Kennedy s comments 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 My 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 he wrote in a social media post on Thursday Our U S Dept of HHS has lost all of its humanity compassion and intellectual curiosity A large number of advocates and researchers alike say that Kennedy s narrow description of autism his characterization of both the science and the experience of what living with it can be like is reductive and harmful Kennedy s rhetoric sets the US back at least a decade to a time rife with damaging stigma around autism that the population has fought hard to change revealed Zoe Gross director of advocacy at the Autistic Self Advocacy Framework one of a group of leading autism advocacy organizations that published a joint announcement on Thursday about these concerns He set up this litmus test of what it is to be a person and have a valuable life announced Gross who is autistic It s not acceptable to talk that way anymore because of the work that we ve done In a social media post on Friday leadership from instrument company Aspiritech championed dozens of people on the group more than of whom have autism they say and highlighted approaches that their tax-paying employees directly contradict the picture Kennedy painted of autism We d like you to meet people who will help dispel the a large number of misconceptions about autistic people that seem to be driving a false narrative the company wrote inviting Kennedy to visit its offices in Chicago We d like to talk to you about how the idea of a cure feels like you don t want autistic people to exist Autism is a birth-to-death condition and multiple diagnosed autistic people view it as a critical piece of their identity 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 may behave communicate interact and learn in options that are different from majority other people according to the CDC and the abilities of people with ASD can vary significantly Dr Lisa Settles director of Tulane University s Center for Autism and Related Disorders has spent more than 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 revealed To me it s very obvious that Kennedy doesn t know a lot about the finding she stated He s pulling things together into a theory that isn t based in any ounce of science and it s really frustrating to those of us who are professionals Kennedy later went on Fox News to set the record straight He doubled down on the limitations that he says people with autism have but clarified that he was specifically talking about the in people with autism who have severe autism A CDC review from shows that about of -year-olds with autism were considered to have profound autism defined as children who were nonverbal were minimally verbal or had an intelligence quotient IQ less than That record analyzed content from to The latest CDC assessment did not include an analysis using this criteria But other facts on the cognitive level of children with autism contradicts Kennedy s claim that largest part cases now are severe or that these cases are driving the rise in prevalence CDC figures from shows that about of -year-olds with autism had an IQ of or less up less than percentage points from when about did Early determination of autism is easiest in children who have greater advocacy necessities experts say We see them because they re not meeting their developmental milestones Settles explained They have speech delay or total lack of speech so those are going to be the kiddos that are picked up diagnostically first But chosen kids with autism who have lower aid necessities might continue to meet developmental milestones until age or later and those cases would be missed in the input that CDC is analyzing she disclosed 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 finding If 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 s really that we diagnose just as multiple kids with a level one as we do a level three Settles explained And Kennedy s use of outdated terminology like severe is also not in line with current science and can have damaging negative connotations she mentioned Clinically and professionally we don t use the word severe Settles stated It s really short-changing the individuals with autism it s short-changing the families and it s hurtful Kennedy has launched a massive testing and research effort at HHS to determine the cause of the autism epidemic promising particular answers as early as September There are differing opinions in the autism population about the importance of searching for a cause when limited tools may be better spent understanding how to build sponsorship for people living with autism But there s broad agreement that Kennedy s laser focus on environmental toxins is problematic especially if he continues question science that has already proven that vaccines do not cause autism This was the largest part exciting time in research Things that we thought five years ago sounded like science fiction were authentically happening Singer declared All that is now under threat to be derailed in favor of more research on vaccines And advocates emphasize that even if greater part people with autism can do the things that Kennedy noted they can t those who may need more backing deserve more respect If someone can t do any of those things because of their disability it doesn t mean they can t have a good life Gross announced They deserve better than being a rhetorical prop