rewrite this title RFK Jr.’s comments on autism spark outrage among researchers

HHS Sec. Robert F. Kennedy’s comments on autism have sparked outrage. NPR’s Ayesha Rascoe asks Colin Killick, director of the Autistic Self Advocacy Network, for his reaction.

AYESHA RASCOE, HOST:

Health and Human Services Secretary Robert F. Kennedy Jr. calls the rising rates of autism diagnoses in the U.S. an epidemic. And last week, he pledged new research looking into environmental factors that he believes lead to autism. Many researchers are challenging the scope and focus of the new initiatives, and many people living with autism are condemning these remarks from Kennedy.

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ROBERT F KENNEDY JR: 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.

RASCOE: Colin Killick is the executive director of the Autistic Self Advocacy Network, and he joins us now. Thank you for being here.

COLIN KILLICK: Thank you so much for having me on.

RASCOE: So RFK Jr. went on to say that autism destroys families. What’s your reaction to what he said?

KILLICK: Disgust and fear, frankly. I mean, I’m autistic and I have done many of those things. And, like, I have quite low support needs, but I know autistic people who do all of those things, including autistic people who have high support needs, who are nonspeaking, who have intellectual disabilities, right? Secondly, the idea that someone who’s incapable of doing those things, who needs support, that their life has been destroyed and their family has been destroyed, is just awful and not true. Like, the fact that he would say that about our community is just pretty appalling, and we’re really concerned at what policies are going to come out of the Department of Health and Human Services when its leader espouses these kind of views.

RASCOE: You are a poet, as well as the executive director of your organization. How important is poetry to you in expressing, you know, your feelings, your thoughts? Do you speak about these sorts of things through your poetry?

KILLICK: Absolutely, yes. I have been doing disability rights activism since 2013. I have been writing and performing poetry since 2012, and those two things have very much gone together in my life. I do slant poetry, performance poetry, and a lot of it is about disability rights, my experience as a disabled person, as an autistic person. And it has been really, you know, important for me both to sort of better understand myself and be able to communicate my personal experience. One of the first performance poems I ever wrote was explaining my motor dysfunction issues. I wanted a more fun for me way of explaining that my hands didn’t work in the normal way. But also it has been a real tool for me to be able to educate other people.

RASCOE: For parents of children who may be autistic or they may be concerned that their child may be autistic, they’re going to have a harder life, and they feel like maybe there is some sort of – I don’t want to say cure, but there’s some sort of way they could avoid it, or there’s some sort of way – and that would help their children have a – in their view, a better life. And they feel like RFK Jr. is speaking to their concerns or speaking to their needs. Like, I guess, what do you say to them?

KILLICK: You know, life as an autistic person is difficult. You know, most of us have some things that we struggle with. But also a lot of it is life of an autistic person is difficult because we live in an ableist society and because supports and accommodations and services aren’t readily available. And so I think what we would say is we do need a government that is – cares about autism, that is investing in autism. But the thing to do is invest in the kind of research, the kinds of services that actually help autistic people. And I mean, the biggest thing here is – right? – is they’re trying to cut Medicaid – right? – and, you know, hundreds of thousands of autistic people rely directly on Medicaid for services and supports, and it’s going to be an awful lot more difficult to get, especially because those kinds of waiver services are optional for states to provide and thus are likely to be the first ones on the chopping block.

RASCOE: So if you did have a chance to speak with RFK Jr., what would you share?

KILLICK: I think I would just share that, you know, we aren’t a plague or a cataclysm, is, I think, another word that he used, right? And that, like, autistic people’s lives can be difficult, but they can also be joyful, right? You know, in our entire community across the entire spectrum of levels of support need or types of impairment, that our lives are worthwhile and worth living, and that we do contribute to society. And that I would say, you know, he has an enormous amount of power to shape the U.S. health agenda, an enormous amount of money at his disposal if he cares about autism.

I believe that he cares about autism, even as horribly off base as he is, and how he approaches it. If he focused on policies that would improve the lives of the community, and above all, if he listened to autistic people. If he would listen to autistic people when we tell him what we actually need, he would have a chance to do a lot of good for our community instead of spreading pseudoscience, instead of giving families false hope. And he can work with our community, but it requires listening to us about our own lives and what we actually need.

RASCOE: That’s Colin Killick, executive director of the Autistic Self Advocacy Network. Thank you so much for joining us.

KILLICK: Thank you.

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