In just two months on the job, Health Secretary Robert F. Kennedy Jr. has raised the profile of autism more than any recent public official.<\/p>\n\n\n\n
Autism advocacy groups typically welcome more attention to their cause. But many autistic people say Kennedy is exploiting their community \u2014 and perpetuating harmful stereotypes \u2014 as part of his decadeslong campaign against vaccines<\/a>, even as the Trump administration threatens to eliminate services that help people with autism reach their full potential.<\/a><\/p>\n\n\n\n At an April press conference on autism rates among school-age kids, Kennedy described autism as an epidemic and a \u201ctragedy\u201d that \u201cdestroys families.\u201d<\/p>\n\n\n\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 the toilet unassisted,\u201d Kennedy said. <\/p>\n\n\n\n In response, 15 advocacy groups issued a joint statement calling for autistic people to be treated with respect and support<\/a>. The groups said they are \u201cdeeply concerned by growing public rhetoric and policy decisions\u201d that fail to \u201creflect the inherent value, rights and diverse needs of autistic people.\u201d<\/p>\n\n\n\n Zoe Gross, director of advocacy for the Autistic Self Advocacy Network, was one of many people to speak out. Gross and her brother have autism.<\/p>\n\n\n\n \u201cIt was a challenge for our parents, but our family wasn\u2019t destroyed,\u201d Gross said.<\/p>\n\n\n\n Ari Ne\u2019eman, an assistant professor of health policy and management at the Harvard T.H. Chan School of Public Health, said he sees Kennedy\u2019s disparaging remarks as \u201cpart of the long and unfortunate history of fearmongering in the autism world.\u201d<\/p>\n\n\n\n \u201cThere\u2019s an unscrupulous industry of alternative medicine providers who exploit families by charging them tens of thousands of dollars to \u2018recover\u2019 people with autism,\u201d said Ne\u2019eman, who has autism. \u201cThe way that industry works is by terrifying families.\u201d<\/p>\n\n\n\n Even among people with intellectual disabilities \u2014 a category that includes 40% of people with autism<\/a> \u2014 1 in 5 held a paid job<\/a> in the community in 2020.<\/p>\n\n\n\n Kennedy later said he was referring to people with \u201cprofound autism,\u201d including those without access to speech. Research suggests 10% to 27% of autistic people<\/a> are nonverbal or have other significant needs, a rate that has remained relatively consistent since 2000.<\/a><\/p>\n\n\n\n Philip Weintraub, 53, didn\u2019t speak a word until he was 5 years old.<\/p>\n\n\n\n But he received speech therapy throughout elementary school. Occupational therapy improved his motor skills, which allowed him to play soccer and basketball in middle school and high school, as well as softball as an adult.<\/p>\n\n\n\n After high school, he began volunteering for the Bill Clinton campaign and later worked for the White House. Weintraub now works at the Universal Services Administrative Company, which connects people to broadband services. When he returned to school to become certified in computer science, his school provided someone to take notes and gave him extra time on a test.<\/p>\n\n\n\n He and his wife, Liz, who has cerebral palsy, live in the Washington, D.C., area. Weintraub noted that they have gone on many dates.<\/p>\n\n\n\n \u201cWe are coming up on our 20th anniversary,\u201d he said.<\/p>\n\n\n\n Many autistic people and their advocates say Kennedy\u2019s remarks on autism\u00a0perpetuate stigmas about the disorder<\/a>, a neurodevelopmental disability in which people experience difficulties with social interaction or communication and often have restricted interests or repetitive behaviors.<\/p>\n\n\n\n Symptoms can vary dramatically from person to person, however, and some people with autism need higher levels of support than others.<\/p>\n\n\n\n Alison Singer, president of the Autism Science Foundation, said she welcomed Kennedy\u2019s focus on autistic people who need more intensive support. However, she objects to the suggestion that the lives of some autistic people have little worth.<\/p>\n\n\n\n Kennedy \u201cmade it sound like these individuals\u2019 lives had no value if they couldn\u2019t pay taxes,\u201d Singer said. \u201cThat they couldn\u2019t love and weren\u2019t worthy of love. My daughter has profound autism and so does my older brother. They both live lives of meaning and dignity.\u201d<\/p>\n\n\n\n Although attitudes toward autism have changed significantly in recent decades, Kennedy doesn\u2019t seem to have kept up, said David Mandell, associate director of the Children\u2019s Hospital of Philadelphia\u2019s Center for Autism Research.<\/p>\n\n\n\n Kennedy\u2019s comments about autism echo the language of some autism organizations from 20 years ago, when advocates often spoke of \u201ccuring\u201d the condition<\/a>, Mandell said.<\/p>\n\n\n\n In a written statement to NBC News, an HHS spokesperson said, \u201cSecretary Kennedy remains committed to working toward a society where people with autism have access to meaningful opportunities, appropriate supports and the full respect and recognition they deserve. His statements emphasized the need for increased research into environmental factors contributing to the rise in autism diagnoses, not to stigmatize individuals with autism or their families. HHS supports ongoing collaboration and research to both identify the causes of autism and provide the best possible care and management strategies for those impacted.\u201d<\/p>\n\n\n\n According to the Centers for Disease Control and Prevention, there are more than 5 million adults<\/a> with autism in the United States.<\/p>\n\n\n\n When talking about autism, Kennedy refers to children but doesn\u2019t mention of the needs of autistic adults, insisting that he\u2019s never seen an adult<\/a> his age with symptoms of autism.<\/p>\n\n\n\n Kennedy is \u201cnot just excluding the voices of autistic adults from the conversation, but excluding the fact of our existence,\u201d Ne\u2019eman said.<\/p>\n\n\n\n Kennedy has also said he didn\u2019t know anyone with autism when he was growing up in the 1950s and 1960s, before some modern vaccines were available.<\/p>\n\n\n\n There\u2019s a reason why people were autism were rarely seen at that time, Mandell said. Like others with intellectual or physical disabilities, they were often institutionalized, often living in appalling conditions<\/a> that shortened their lives.<\/p>\n\n\n\n More than a century ago, when doctors first described autism, they saw it as a symptom of childhood schizophrenia.<\/a> In the 1940s, doctors blamed the condition on \u201crefrigerator mothers\u201d who weren\u2019t warm enough to their children.<\/p>\n\n\n\n Kristyn Roth, chief marketing officer of the Autism Society of America, said Kennedy\u2019s claims about autistic children\u2019s limited potential echo the warnings that doctors used during the mid-20th century to persuade parents to institutionalize<\/a> their children, rather than raise them at home.<\/p>\n\n\n\n Children with autism weren\u2019t afforded the legal right to a free public education<\/a> until 1975. Children with developmental delays can receive early intervention services until age 3, then transition into special education, if needed.<\/p>\n\n\n\n Today, advocacy groups say it\u2019s important to tell parents of newly diagnosed children<\/a> about the many possibilities open to their kids.<\/p>\n\n\n\n \u201cYou don\u2019t know what\u2019s possible for your kid,\u201d said Gross. \u201cNo one knows what\u2019s\u00a0possible for your kid when they\u2019re 3 years old,\u201d Gross said.<\/p>\n\n\n\n Part of Kennedy\u2019s plan to \u201cMake America Healthy Again\u201d<\/a> includes \u201cstreamlining\u201d and \u201crestructuring\u201d federal health agencies in ways that could hurt people with autism, Roth said.<\/p>\n\n\n\n One of the most significant potential losses is the proposed dismantling of the Administration for Community Living,<\/a> or ACL, which is best known for the Meals on Wheels program that delivers food to people\u2019s homes. The ACL also protects the civil rights of older adults<\/a> and people with disabilities \u2014 including those with autism \u2014 and helps them live independently,<\/a> rather than in institutions.<\/p>\n\n\n\n According to the Trump administration, the agency\u2019s \u201ccritical programs\u201d \u2014 but not all programs \u2014 will be split across other departments. According to news reports, half of the ACL\u2019s staff has been fired.<\/a><\/p>\n\n\n\n Proposals by Republicans in Congress to cut Medicaid<\/a> by hundreds of billions of dollars over the next decade to pay for Trump\u2019s budget priorities could deal a devastating blow to people with autism and their families, Roth said.<\/p>\n\n\n\n Many children and adults with autism receive their health care through Medicaid<\/a>, which covers people with disabilities<\/a> or low incomes. Health insurance is critical for people with autism, who tend to have more serious medical needs than others. Up to half of those with autism have seizures,<\/a> which can be life-threatening.<\/p>\n\n\n\n Medicaid also pays for screening, diagnosis, acute medical care, physical therapy, occupational therapy and one-to-one aides for people who need them, among other services, Mandell said.<\/p>\n\n\n\n Some states have received waivers to provide additional services<\/a> through Medicaid, such as respite care for caregivers, a service that has been shown to reduce institutionalization.<\/p>\n\n\n\n Medicaid is \u201ca literally lifesaving program<\/a> for so many people in our community,\u201d Roth said.<\/p>\n\n\n\n The Autism Society of America, which co-signed a letter to congressional leaders<\/a> asking <\/strong>them to save the ACL, said the level of federal cost-cutting is leading to \u201cthe decimation of programs<\/a> that directly serve and support the disability community, including those with autism,\u201d according to a statement from the group.<\/p>\n\n\n\n If the federal government doesn\u2019t fund services that help people with autism live at home, for example, they could end up living in institutions, which are much more expensive, Mandell said.<\/p>\n\n\n\n In an online statement, the Autism Self Advocacy Network said Kennedy has not consulted autism advocacy groups<\/a> about any of the plans that affect their community.<\/p>\n\n\n\n Although Kennedy has pledged a \u201cmassive testing <\/a>and research effort\u201d to find the causes of autism, Ne\u2019eman said research dollars would be better spent investigating ways to support autistic people in their daily lives, such as addressing barriers to jobs and education.<\/p>\n\n\n\n \u201cThe false idea that autism is caused by an \u2018injury,\u2019 by something external going wrong, makes people more afraid of autism and of autistics,\u201d the\u00a0Autistic Self Advocacy Network<\/a>\u00a0wrote in a statement in April. \u201cSo does the idea that it is better for a child to die of a vaccine-preventable disease than to live as an autistic person.\u201d<\/p>\n\n\n\n Trump also has vowed to eliminate<\/a> the Department of Education<\/a>, which oversees special education<\/a> services and enforces the law that guarantees children with disabilities \u2014 including those with autism \u2014 receive a free public education<\/a> in the least restrictive environment. The White House has promised that services for children with disabilities will be \u201cpreserved in full and redistributed<\/a> to various other agencies and departments,\u201d but many autism advocates worry that key services will be lost in the shuffle, making it harder for students to receive individual education programs and special instruction in school, as well as accommodations<\/a> that help meet their needs.<\/p>\n\n\n\n Twenty-two percent of families of children with disabilities experience financial hardship<\/a>, such as difficulty paying a medical bill or going without care due to cost, according to a study published in JAMA on April 24. That rate is nearly twice as high as in families without children with disabilities.<\/p>\n\n\n\n \u201cI have not heard Kennedy say one word about supports,\u201d Mandell said. \u201cI would love to change the conversation to talk about what we should be doing to support these individuals.\u201d<\/p>\n\n\n\n The report from the CDC that triggered Kennedy\u2019s recent briefing shows that increased efforts to screen young children for autism<\/a> have led to an increase in the number of children diagnosed with the condition.<\/p>\n\n\n\n Kennedy rejects the idea<\/a> that increased awareness and screening explains the growth in autism diagnoses.<\/p>\n\n\n\n Jemma Bat-Anat Page, 29, said she would not have been diagnosed with autism if she hadn\u2019t sought out testing two years ago.<\/p>\n\n\n\n Page, who works in theater in Cincinnati, paid for the tests using health insurance from her employer. Page said she has been uncomfortable making eye contact since she was a child and she sometimes got in trouble for not being able to control the volume of her voice. She decided to be tested, not for accommodations or services, but simply to better understand herself.<\/p>\n\n\n\n Page and her partner, who has attention deficit hyperactivity disorder, consider themselves \u201cneurodiverse.\u201d<\/p>\n\n\n\n