We Are Not Broken: Journalist Eric Garcia Knows Everything You Don’t About Autism

The early presidential election campaign has put autism back in the news—and not in a good way. Democratic candidate Robert Kennedy Jr. continues to double down on his baseless conspiracy theory that vaccines cause autism, while Republican presidential candidate Ron DeSantis faces baseless accusations that he is autistic after bizarre reports surfaced that he eats pudding with his fingers.

The world of autism advocacy and research has no shortage of parents and clinicians who are not autistic. Enter Eric Garcia, an actually autistic reporter for The Independent (U.K.) who’s spent the better part of the last decade focused on the rise of an autistic-led movement.

Garcia is a friend of mine, a colleague, and, for purposes of full disclosure, my roommate in Washington, where we cover Congress for different news outlets. We first met just over five years ago at Roll Call, where he was the breaking news reporter. Garcia’s stories brought in three-quarters of the total web traffic to our newsroom, where I was the TV booker.

“Does it matter that I’m autistic?” he asked me the first time he stopped by my desk to pitch himself for TV. Nope, I said. In fact, it might even help. We agreed that I’d pitch him around as “the autistic reporter” and, sure enough, the kid was a natural on politics shows.

Garcia’s encyclopedic memory and ability to speak in complete paragraphs about the political news of the day make him easy to work with in live segments and pretapes where he and the host could vibe. Politics is a masterclass Garcia teaches to everyone around him that’s authentic and deeply informed. “Eric is your next politics star,” I told MSNBC President Rashida Jones after several glasses of red wine at a White House Correspondents’ dinner week party in April. Jones wrote his name down and assured me she’d look into it. Garcia, one of Jones’s MSNBC columnists, had been on air once before, but not in the studio where he truly thrives alongside the hosts asking him questions.

I reminded Jones that in 2015, Gracia wrote an essay on accessibility and autism in the final print edition of National Journal. The headline was “I’m Not Broken: What this Washington reporter with autism wants you to understand.” It begins with him being reprimanded by a Capitol policeman for shouting a question across a crowded Finance Committee room at the late Senator Orrin Hatch. “On the surface, it was a simple misunderstandinga young reporter making a rookie mistake,” wrote Garcia. “But what the officer almost certainly didn’t know is that I am on the autism spectrum. Like many on the spectrum, I lack awareness of social cues and my surroundings, even when those surroundings include the Senate’s most senior Republican. In other words, I might not understand that it isn’t the best decorum to shout a question to a senator across a room, instead of waiting for him to get to the hallway.”

We’re Not Broken: Changing the Autism Conversation is the follow-up book to Garcia’s essay, published by HarperCollins in 2021. The audiobook, which he voiced, is another example of Garcia thriving in a studio environment where exacting technicians help talkers broadcast pristinely on-air. It took me nearly two years to read, in part, due to a textbook-level abundance of acronyms in the first chapter, but the audiobook … chef’s kiss. I’m listening to it now for the third time. Garcia covers the history of autism diagnosis and policy, focusing mostly on the latter, which he illustrates with profiles of the autism advocacy community like Dr. Devon Price, Sara Luterman, and others. Autism advocacy, Garcia writes in the book, has two main models: medical and social. Medical advocates seek to “cure” or eradicate autism. Social advocates want society to help autistic people live more fulfilling lives.

Recently, I interviewed Garcia about recent autism-related developments and his book. The interview took place in our living room with his one-year-old cat Bam Bam purring gently on his shoulder listening to him patiently answering my neurotypical questions.

Pablo Manríquez: So before we get to the book, Robert Kennedy Jr. … What’s his deal when it comes to autism?

Eric Garcia: It’s really sad because the Kennedys came into disability through Rose Kennedy, the eldest Kennedy daughter of the family patriarch, Joe Kennedy. What was tragic was that her father essentially authorized her to have a prefrontal lobotomy because she had an intellectual disability. The decision was so traumatic that the next generationwhether it was John F. Kennedy signing the Community Mental Health Act, Eunice Kennedy Shriver creating the Special Olympics, or Ted Kennedy writing the Americans With Disabilities Actthese actions by the generation after Joe Kennedy were basically penance for what their father did to their sister.

P.M.: So RFK Jr.’s baseless and dangerous autism conspiracy theories kind of bring the Kennedy family full circle on disability?

E.G.: Yes. It kind of erodes that legacy because the whole rationale behind being an anti-vaxxer is arguing that vaccines cause somebody to be autistic, and thus being autistic is something to be ashamed of, which is very similar to what Joe Sr. believed about Rosemary. It’s also worth noting that RFK Jr.’s siblings have distanced themselves from him. Ted Jr. is an amputee who advocates for people with disabilities. Kathleen Kennedy Townsend and Kerry Kennedy have both said that RFK Jr.’s position is not acceptable.

P.M.: Some folks are trying to use autism to shame Florida Governor Ron DeSantis, another candidate in the 2024 presidential race. What’s your take on that?

E.G.: Let’s be clear about who is spreading that falsehood: It’s Steve Bannon. So it’s not the liberals who are doing this. It’s Trump people attacking from the right in an attempt to use autism as a mark against DeSantis. To me, autism is value-neutral. It just is. It doesn’t make somebody better or worse as a politician. There are plenty of things to judge Ron DeSantis, both for and against, but autism isn’t one of them.

P.M.: So, Elon Musk … autistic, right?

E.G.: Elon came out on Saturday Night Live in 2021.

P.M.: Is he the most famous autistic person in the world?

E.G.: Maybe.

P.M.: Does it suck that he’s kind of an asshole?

E.G.: People who say Elon is a jerk because he’s autistic don’t really understand what autism is. Being a jerk is separate from being autistic. Yes, we might not understand certain social graces, but that’s not an excuse for being mean to people. As I like to say, there’s only one ‘s’ in Asperger’sthe name for autism that is no longer in vogue because Hans Asperger was a Nazi.

P.M.: Young people are going online to self-diagnose as autistic. What’s your take on that? Should parents be concerned?

E.G.: Parents are concerned. Concern[ing] themselves is what parents do, but it’s not just young people self-diagnosing as autistic. Most of my new followers on social media, since I wrote my book, are women in their forties and fifties, many of whom have self-diagnosed themselves or are mothers to children who, in some cases, self-diagnose as well.

P.M.: Is a clinician’s diagnosis necessary to be “officially” autistic, or is the diagnosis more open to self-interpretation?

EG: OK, so I’m going to try to be very careful with this question [long pause]. You have to understand that a lot of the diagnostic criteria, even today, are still shaped by who we thought of as autistic nearly 80 years ago when Leo Kanner [the first scientist to clearly define autism] put out his first study about autism in 1943 not far from where we live, at Johns Hopkins University. All of the test subjects he used came from upper-middle-class families. Their parents were doctors, lawyers, and scientists who, as you can guess, could afford to take their kids to Johns Hopkins to be evaluated.

P.M.: So you’re saying that in a world where clinical diagnoses are the privilege of the rich—

E.G.: Exactly. For decades it was assumed that people of color, as well as girls and transgender women, couldn’t be autistic because diagnoses were only given to boys who are white. Absent an avenue to get diagnosed by a doctor, the only way most autistic people could think about their condition was through self-diagnosis and seeing themselves through other autistic people in media.

P.M.: —which brings us to your book.

E.G.: Yes! And before I wrote my book, I thought the idea of self-diagnosis was horseshit. Then I realized through researching the book that self-diagnosis is actually incredibly valid because we miss so many people in the formal diagnosis process. Even when girls and women get diagnosed by a clinician, it tends to come later in life because I think the way we think about autism is still stuck in the distant past. Now, that’s changing as more autistic people enter the medical profession.

But to answer your question, I don’t think self-diagnosis is invalid. If anything, it shows the gaps and the failures in the formal diagnosis process.

P.M.: Walk me through what happened in the distant past that informs how we still think of autism today.

E.G.: The world we’re in now was very much shaped by the autism panic of the 1970s that lasted all the way until the early 2000s. The anti-vax movement had a lot to do with thatthat is, associating being vaccinated with autism, a completely baseless conspiracy theory espoused today by none other than Robert Kennedy Jr. The book has all the details of how we got to where we are, but if your readers want to Google some bad actors, they can start with Andrew Wakefield, Dan Burton, and Bruno Bettelheimthese are the guys who really got it wrong.

P.M.: Shifting gears again, you write in your book about “the elaborate scaffold of support autistic people create that is often invisible to people who are not a part of it.” The book offers a range of examples of autistic people who have successfully constructed their scaffolds or are struggling through the process of doing so. What are some places autistic people can turn to for help in constructing their scaffolds?

E.G.: There are actual resources, like social welfare programs like Medicaid, that offer support; but those programs are criminally underfunded. Take home- and community-based care programs. The waitlist to receive that help is like 700,000 people. Closer to home, it’s good if you have a supportive family, but many people don’t. It’s very important that parents and loved ones take the needs of their autistic loved ones seriously and literally. For so long, we’ve questioned the needs of autistic people instead of taking them seriously. That’s a huge problem. Autistic people themselves, whenever possible, should be at the center of their own advocacy; but we need a support system.

P.M.: You write that many parents see you as an example of “a different way that people can carry themselves as autistic in this world.” What’s it like to carry that burden?

E.G.: Look, I never wanted to be some Pope of autism, so it’s kind of a mindfuck. Like when the National Journal essay came out and when the book came out, I got so many messages to the point that my phone was unusable. I’m very honored to get this attention and don’t take the responsibility that comes with it lightly. But in the same respect, what I always try to reiterate is that I’m just one person carrying with me all of the flaws, failures, and frailties that come with being a human being. So I don’t want my image to be marked as “this is the way to be autistic.” What I do want is mine to be just another path that autistic people can see, that this is just one of the many ways to be autistic.

P.M.: Let’s talk about the medical model versus the social model of approaching autism. This gets to the core of how people think of autism and disability as a whole. Let’s take the medical model to the extreme by imagining a scenario where you could undergo a treatment that makes you no longer autistic. Would you want that?

E.G.: I’m sure there are people who would want that. In fact, I write about some of them in the book. But what makes humanity work are all the different variations of being human, but that’s not why the medical model is problematic. It’s not that we should avoid getting rid of autism because of the diversity we make in the world; but because autistic people have inherent self-worth. Take me, for example. It’s not about my ability to contribute greatly to society as an autistic person. Autism shapes how I love, live, and interact with other people, how I think about the world and go through life, which is in a different way. What my existence and the existence of other autistic people does is discovers all the ways that society doesn’t even suit able-bodied people, and all the ways people with disabilities give able-bodied people things they didn’t even know they had. The classic example is curb cuts for people in wheelchairs [that] also help mothers with children pushing strollers or janitors wheeling a heavy trash bin who no longer have to carry it up a bunch of steps.

P.M.: —which brings us to the social model of autism advocacy. Let’s take that one to the extreme. Let’s say autistic people can easily get everything they possibly need to lead fulfilling liveswhether it’s extra time on a standardized test, or a full-time helper to help them with more basic needsare you concerned that everyone will just self-diagnose to get these benefits?

E.G.: No, because there’s still a high degree of stigma attached to being autistic.

P.M.: Yeah, but not so much among the youthand the mothers in their forties and fiftieswho, as we’ve noted here, are already self-diagnosing in public. They seem to be at the forefront of a new wave of openness and inclusivity to being on the spectrum … or no?

E.G.: Look, even on a level playing field, there are still a lot of prejudices about disability, so I don’t see why people would want to have that label on them. At that same time, accommodations are made because institutions are not built with people in mind. So I think if we went all in on the social model, institutions would have to rethink and be rebuilt with the people it left behind in mind.

So what you’d end up with is a reevaluation of society from the ground up. Like, why do we have standardized tests in the first place? Should we really be relying on standardized tests anyway? We would still have accommodations but we’d have to stop and think about how we redesign things with everybody in mind, not just disabled people. And to your point, if nondisability people got accommodations, too, it would show just how ridiculous tests like the SAT or ACT are and how they’re rooted in the eugenics movement of yesteryear. In essence, by accommodating autistic people, we’d be on the road to showing that some of these societal mechanisms that we rely on aren’t really helping anyone but the moneyed few. This would cause a reckoning for a lot of nondisabled people.

P.M.: Thank you for your time today, bro.

This content was originally published here.