Jodie Hare on the Politics of Neurodiversity

Following Secretary of Health and Human Services Robert F. Kennedy Jr.’s widely publicized and false claims about autism, writer Jodie Hare joins co-hosts Whitney Terrell and V.V Ganeshananthan to talk about the politics of neurodiversity and the importance of autistic communities. Hare, who was diagnosed as autistic in adulthood, explains how the pathologization of the autistic population is historically connected to industrialization and capitalism. She also discusses the discriminatory and criminal history of searching for a “cure” for autism through a series of cruel methods, which have all failed. She challenges the idea that there are normal and abnormal ways of living, and reads from her book, Autism Is Not a Disease: The Politics of Neurodiversity. 

To hear the full episode, subscribe through iTunes, Google Play, Stitcher, Spotify, or your favorite podcast app (include the forward slashes when searching). You can also listen by streaming from the player below. Check out video versions of our interviews on the Fiction/Non/Fiction Instagram account, the Fiction/Non/Fiction YouTube Channel, and our show website: https://www.fnfpodcast.net/. This podcast is produced by V.V. Ganeshananthan, Whitney Terrell, Hunter Murray and Vanessa Watkins 

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From the episode:

V.V. Ganeshananthan: In your book, you discuss how the idea of finding a “cure or cause for autism” has led to some dark places and dark policies. I wonder, can you talk a little bit about that history?

Jodie Hare: Yeah, absolutely. So, I mean, I think it’s key to remember that the diagnosis itself of autism has only existed for about a century. It’s not a super old diagnosis, but essentially, pretty early on, from its inception, there was a quest to cure these things. You know, Hans Asperger had reportedly sent 1000s of disabled children and autistic children to their deaths for simply not meeting the quote, unquote, “Nazi ideal” of a child. And that kind of desire to eradicate autism, or autistic people in general, has continued. 

It is a scaremongering around autistic lives and the kind of desire to eradicate that has led to cures that have included—well, quote, unquote “cure,” sorry, should I say? Because there is absolutely no proof that any of these work, nor have they. Things like electric shock treatment, things like bleach treatment, things like exorcisms, ABA therapy, which has in the past included slapping and violence towards children when they behave in ways that are seen as supremely autistic and therefore in need of removal. It is a constant desire and a constant area of research that has money funded, pumped into it non-stop in search of a way to eradicate autistic people. And to this point, all of it has failed. There is no research, there is no treatment that has been done that has been proved in a cure for autism. And I think, you know, it’s—

Whitney Terrell: So he’s not going to find a cure by September. And first of all, the idea of finding a cure is itself a bad idea. It’s really a form of discrimination, the concept of it, right? Isn’t that what you’re saying?

JH: Absolutely. I think it’s who has the authority to decide whose lives are worth living. I think that’s what it comes down to. Who has the right to decide that autistic people don’t deserve to continue their lives. I think that is the bottom line.

WT: He mentioned in that same speech—I just want you to comment on this, because I think that this seems self-evident—I’ve seen people talk about it on social media, but he keeps insisting that there’s been a rise in autism. Is there any evidence for this, actual scientific evidence for it? 

JH: No. There is evidence that there are more diagnoses, and what that comes down to, in terms of research, is that we have a greater understanding of autism—

WT: Like you. You were misdiagnosed for a significant portion of your life.

JH: Yeah, and I know a lot of autistic people who have lives that look very similar to mine, and have had that same diagnosis journey. I think what we have is we have reached a point where we know better. We have better knowledge. We have better ways of communicating that knowledge, and we are identifying more people who need support when they need it. That is the long and short of it. And I think Trump said there is a spray that we might be using that’s turning people autistic, and just those things are completely unfounded. There is no research to support that.

VVG: My impression is that some of these diagnoses are also the result of increased attention in underrepresented communities that are traditionally not really part of scientific research or study, and that attention to communities that are underrepresented minorities, that a lot of those diagnoses are in that area, which makes sense to me, and also considering the Trump administration’s attacks on DEI that, of course, is also part of this complicated and shitty story.

WT: One last thing. We just have to say this. It’s not caused by vaccines, right?

JH: Correct. There is no research that proves for certain that autism is caused by vaccines. The one study that people refer to has been debunked numerous times over the years. People who work in those spaces have also said that the study itself was originally done incorrectly or in poor form, but essentially, yes, there is no proof, no research that shows that the vaccines cause autism.

WT: I thought your book was really helpful because it made me understand better why neurotypical people cling to that particular explanation, because they want to perpetuate the idea that there’s a cure. They want to perpetuate this idea that this is somehow not a different category, it is fixable. It’s like they would be normal if they—No, these people, instead of accepting the people for who they are and how they are, this is a way of skipping over that step.

JH: Yeah, absolutely. I think actually providing autistic people with dignity and humanizing them and believing that they deserve the right to a good life as much as non-autistic people would require a lot of people to interrogate the way that they see the world. It would ask them to interrogate their ideas of normality, what they consider right and wrong, what they consider to be a good life, and a lot of people don’t want to do those things, and therefore it’s much easier to say autistic people are broken, how can we fix them?

VVG: So we’re talking about the ways in which people are misunderstanding, misapprehending the nature of autism and its incredible range. In your book, you also warn about a newer danger—I thought this section was so interesting–-that we may be beginning to view autism as a kind of superpower, or a way to be more efficient. And early in the book, you mentioned Rain Man, which was probably the first depiction of autism I ever saw when I was a little kid, before I met any of my autistic friends or family. Would that be a good example of what you’re talking about there with the superpower?

JH: Yeah, absolutely. I think especially in the U.K., and in the context of neoliberalism, there is a pressure to think about, how can we make money off of autistic people? If we’re going to be more accepting of them, how can we use them? So there is a push towards—there are people like the financial papers who are saying, “Oh, well, if you hire more autistic people and accept them, you can boost your profits by such and such.” So we are at risk of trying to move in the right direction and pushing too far the other way. We need to reach a point where we say it’s okay if autism is just autism as it is, it doesn’t mean that it has to be a superpower. It will continue to be a disability for many people, but that doesn’t mean that being disabled means your life is any less worthy or valid or valuable than anybody else. 

I think the kind of depictions, like Rain Man, are very specific, and there’s been a lot of instances where those films are made or written by people who aren’t autistic, or don’t know any autistic people, or have access to autistic communities. I think we are beginning to see shifts in that. You know, there are books, for example, in the UK, one that I really like, called A Kind of Spark. There’s also a lot of autistic people who recognize themselves in characters that were perhaps created not necessarily to be autistic but just by the nature of how they were written, end up being seen as quite autistic. So there’s things like Heartstopper on Netflix, and there’s quite a few characters in that, particularly people like Isaac, who the autistic community refer to as autistic head canons. So that’s a way to say, I recognize myself in this character, and I think it’s a really nice opportunity that autistic people are beginning to see themselves reflected in the media that they consume. 

VVG: So, as I was referencing earlier, President Trump has been launching various assaults on DEI programs that mandate accessibility for people with disabilities here in the U.S. And I mean, the U.S. has long been—we have the Americans with Disabilities Act. I mean, in some ways, we have been a destination for people with disabilities to feel like they have some basis in the law for equal treatment. You have a section in the book titled What Should be Done. So, what should be done?

JH: I think that this is a huge question. We could go on for hours about this, and there are all kinds of people who have different answers. Some of the main things that I talk about in the book that I think are worth highlighting are improved funding for community services for autistic people, that is day centers, that is home care providers, that is supporting families who have autistic children or autistic family members who are high-support needs and require that care, and that care needs to be provided free at the point of service by the state. There needs to be improved training around neurodiversity and that is in all sectors. Autistic people need to be able to go to the hospital, to go to school, to go to the library, and feel that they are entering spaces that are accessible and that they can have their needs met and communicate with people who will respond well to that communication. 

There needs to be better funded research that is focused less on cure and more on improving quality of life, and understanding what it looks like for an autistic person to live a good life, to live a life that is, you know, wonderful and joyous, and without threats to safety and that sort of thing. There needs to be a general improvement in accessibility for all public spaces. And you know, that’s also particularly relevant in terms of work, because in places like the U.K., only 20 percent of autistic people are in work. There needs to be an improved benefit and welfare system, because the nature of autism is the fact that it is a disability. And there are people who won’t ever be able to work, but they still deserve the right to a good life, and they need the money to do so, the money to live off. There needs to be an interrogation of the underlying ableism that impacts so much of our society, our living, the way that we see people. And we need to combat a lot of the abuse that autistic people face, and see them as humans who are deserving of life and care and dignity. And you know, yeah, humanity. I know, only a few small things to ask for, but that would be a good starting point, I think.

Transcribed by Otter.ai. Condensed and edited by Vianna O’Hara.

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Jodie Hare

Autism Is Not A Disease: The Politics of Neurodiversity • Why we must politicise neurodiversity | shado •  Autism cannot be cured — stop trying | huck, July 2024 • The Dehumanisation of Autistic People Must End | Verso blog, May 2022

Others:

Empire of Normality  by Robert Chapman • Unmasking For Life: The Autistic Person’s Guide to Connecting, Loving, and Living Authentically by Devon Price, PhD • Neuroqueer Heresies  by Nick Walker • RFK Jr. Is Using a New Study on Autism Rates to Push His Anti-Vaccine Agenda | Mother Jones • People with autism seek dignity where RFK seeks a cure | Axios • RFK Jr. Calls Autism ‘Preventable,’ Drawing Ire From Researchers | The New York Times • A Kind of Spark by Elle McNicoll • RFK Jr. Set to Launch Disease Registry Tracking Autistic People | The New Republic