Since taking office, Health and Human Services Secretary Robert F. Kennedy Jr. has made several false and misleading claims about autism. In a press conference on April 16, Kennedy said that “autism destroys families” and that children with autism “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 on a date.”
Kennedy has a history of making false claims, including the myth that vaccines are linked to autism. He also falsely claimed that autism is an “epidemic” caused by environmental toxins. Autism spectrum disorder is a brain development condition (not a disease) that affects how people socialize and communicate. It also impacts everyone differently.
Leading organizations like The Autism Society of America say that Kennedy’s statements are harmful and stigmatizing to autistic people. To understand this further, Public Good News spoke to four people with autism about their experience and their thoughts on misconceptions about it. Here’s what they said.
[Editor’s note: The contents of these interviews have been edited for length and clarity.]
Elio McCabe, Maryland
Age: 38
McCabe (he/they) is a policy manager for the Autistic Women & Nonbinary Network, a grassroots organization of self-advocates who are autistic and gender diverse.
I have both [attention-deficit/hyperactivity disorder] and autism, which is a fairly common comorbidity. I have sensory issues: Loud noises will send me into a tailspin.
One of the earliest signs, when I was a very young toddler, was that if my parents tried to take me to a mall, I would have a total meltdown. It’s that echoey, loud. I do so much better if I’ve got my headphones.
I was assigned female at birth, and like many other people assigned female at birth, my symptoms were different; they weren’t as overt for either diagnosis. I had another very common backstory where I had a whole bunch of mental health misdiagnoses. Until early adulthood, I was diagnosed as bipolar, as having absence seizures when I was instead having shutdowns. I had depression and anxiety, and it took until I was actually in law school as an older adult, after being out living on my own in the world for over a decade, to go, “Wait a second: None of this is working! Like, if it’s just anxiety that’s making it hard for me to socialize with people, then why is the anxiety medication doing nothing?” And I got some helpful diagnoses.
It was such a relief. Being overwhelmed in the mall, I finally felt like it was okay to wear my headphones when I got into a loud, echoey space, which is not how it should be. That’s a permission I had to give myself because I had been socialized to mask so hard.
And I wish that wasn’t my story. I wish that was no one’s story. I wish that everyone was able to just reach for accommodations without feeling any judgment. And actually, that’s something that some of Secretary Kennedy’s statements have not been helping with lately.
Part of the reason why the misinformation about vaccines is so harmful, aside from the fact that it’s just completely scientifically unsound, is that it paints an autism diagnosis as something so horrible that you would rather risk your child’s life than risk them having autism.
That devalues autistic lives. I’m not less of a person because of my autism diagnosis.
Measuring a person’s value by their ability to contribute through taxes or sports or poetry or art—none of that is relevant. That is also devaluing human life.
Humans are worth their life, even if they’re not ever able to do anything, and so acting as though it is a tragedy to not be able to do something like date or have a job, it’s just devaluing, and not just to autistic people, but to anybody.
There are many people who don’t do any number of those things, and their lives are not tragedies, and they’re not destroying their families.
Part of the reason why the misinformation about vaccines is so harmful, aside from the fact that it’s just completely scientifically unsound, is that it paints an autism diagnosis as something so horrible that you would rather risk your child’s life than risk them having autism.
Elio mccabE
There’s been such a focus on trying to find a cure or trying to find the cause. When you’re so focused on the biological or genetic aspect, and all the grant money is going to that, everything else gets pushed aside.
But as an autistic person, I’m not interested in what causes autism. If someone wants to study that, that’s cool, but I’d much rather they spend time studying best ways to train someone in the use of alternative and augmentative communication, because even though that is a lifeline for so many autistic people, most of the studies done on that have nothing to do with autism.
We’re not looking into things to help with sensory overwhelm or just even looking into what is the return on investment for various services and supports.
Finn Gardiner, Massachusetts
Age: 39
Gardiner (he/him) is a Black, queer, and disabled community organizer and the director of policy and advocacy at the Autistic People of Color Fund, which provides microgrants to autistic people of color.
I was diagnosed when I was around 3, back in the late 1980s, early ’90s, which is unusual for someone my age. Most people in this age bracket don’t get diagnosed until later.
But I was diagnosed, and so I went through special ed. And some of it was good, some of it was bad. I had applied behavior analysis (ABA), [but] a lot of it is designed to focus on making the kid look less autistic, as opposed to actually just helping people out with quality of life concerns.
I did get accommodations for low-noise classrooms and things like that, and I kind of grew up with a lot of shame around being autistic because my parents were super ableist and a lot of other things. I dealt with ableism at school, along with racism, and it was really hard for me to kind of make my way through school because of the bigotry, because of the ignorance, because of the lack of supports that actually matched my needs.
There was a strong focus on making me look less autistic, as opposed to dealing with the stuff that actually affected me, like being overloaded, being overwhelmed, being bullied by classmates, dealing with racism.
And I dealt with a lot of disproportionate discipline. I would get in-school suspensions because I was stressed out and having meltdowns after being bullied by kids in the sixth grade. And instead of dealing with the bullies, my teacher would send me to the office and/or have me suspended.
School exclusions like that are very common for disabled students of color like me. And I feel like this kind of exclusionary policy, this idea that autistic students don’t have anything to contribute, [focuses] on looking less autistic [as] opposed to improving people’s quality of life.
There are so many misconceptions, and it makes it harder for us to be heard. It makes it more difficult for us to get services.
There’s such an array of skills and abilities that people have that it’s presumptuous to assume that everyone has the same capabilities, regardless of where they lie on the spectrum. Robert F. Kennedy Jr. fell into this trap of treating autism as though it’s monolithic when he said that autistic people would never be able to pay taxes or play baseball or do anything like what non-autistic people do.
He’s not concerned about quality of life. He’s concerned about causes and the puzzle of being autistic as opposed to actually improving our quality of life and finding [out] about what happens to autistic adults.
There are so many misconceptions, and it makes it harder for us to be heard. It makes it more difficult for us to get services.
Finn Gardiner
I’d like to see more focus on finding accommodations that make life easier. So, for example, being able to step out if things get too noisy or finding ways to learn how to cope with social difficulties without telling people to stop flapping their hands.
And [support to] help them find jobs that work for them, help them find life-skill techniques that work for them, help them find communities that work for them, as opposed to just trying to mold someone into looking as though they’re not autistic.
Get people home- and community-based services, get people comprehensive supports, get people into employment, get people into higher education, get people good mental health care. Get people food and shelter and housing. Don’t just focus on making people look less autistic. Try to improve our lives, or work with us to improve our lives.
Risa, Texas
Age: 30s
Risa (she/they) is not using her real name because of her employer’s policies. She’s a researcher, content creator, speaker, and trainer.
I was misdiagnosed with bipolar disorder as a teenager, and that’s an experience that, unfortunately, is more common among autistic women and those in other marginalized genders by society. I eventually got diagnosed as being autistic in my late 20s.
Once I got diagnosed and I started embracing my autistic identity, I started slowly thriving. For instance, I used to get [into] an existential crisis writing an email, and now I’m an international keynote speaker and researcher.
I also received ABA as an adult, and my ABA therapists did agree with me that ABA may not be needed for many autistic people if society was more accepting with more support. That’s partly why these misconceptions are so devastating.
Some of the misconceptions that I came across before were that, if I was able to self-advocate or have friends, that I couldn’t be autistic. And I do feel like those were things that were used to justify not diagnosing me with being autistic sooner.
Autistic lives are not tragic: We’re complex, we’re all different, we are worthy, and we deserve support and understanding.
Risa
Every autistic person is unique, but I do think that there’s a lot of stereotypes. People often assume that someone with high support needs can’t have a rich or meaningful quality life.
I believe we need to look at ways to add more supports into society and more access to services. And also, when we’re talking about, like, the employment rate, it’s not acknowledging that for some autistic people, some of the barriers to employment have more to do with biases and the hiring process. And also, that we’re underrepresented in higher education, which is also bigger for employment.
I’m concerned that, when we focus on autism and make certain assumptions, we’re not looking at what we can do as a society to include people more.
Autistic lives are not tragic: We’re complex, we’re all different, we are worthy, and we deserve support and understanding.
Deanna Javier, Kansas
Age: 35
Javier (she/her) is a Latina mother and wife who works at an elementary school.
I always knew I was different, but I couldn’t pinpoint how, and I did not get diagnosed until I was an adult.
As a child, I was a late talker. Loud noises would overwhelm me, and if I got too hungry, I would get really hangry (more than what was normal for a kid), and I was terrified of thunderstorms, even up until late elementary school.
I flew under the radar. One teacher noticed I had issues, but no one else was concerned about my social issues because I was quiet and I wasn’t causing any trouble. But it’s really hard because then you get mental health issues because you don’t know why you’re different, and you get depressed and anxious.
Just because I got married, I have a job, I pay taxes, I have a kid, it does not automatically mean my life is worth more. All our lives are worth the same, all our lives have meaning. It just looks different.
DEanna javier
Some people just say, “Oh, you don’t seem autistic,” but that’s because I’ve had to mask and work really hard to appear as neurotypical as possible. I hate having to do that.
But if I want to get a job in this society, I need to mask and hide some of my autistic traits. I can’t be, like, visibly stimming, or, sometimes, I might rock back and forth to calm myself down. I know I can’t do that in public because then people think that’s weird.
And, as far as [Kennedy’s recent claims], autism is a spectrum, and so there are some people who will go on and get married or pay taxes and all these things. But also, on the other end, there are people who won’t. And the people who can’t do those things, their life is just as valuable as mine.
Just because I got married, I have a job, I pay taxes, I have a kid, it does not automatically mean my life is worth more. All our lives are worth the same, all our lives have meaning. It just looks different.