by Eric Garcia
Being in a newsroom with another person on the spectrum was comforting since it made me feel like I had my finger on the pulse of something. When I first came to DC, there were very few other openly autistic journalists (I am positive there are plenty of autistic and otherwise neurodivergent people in the news business and in politics writ large, but it isn’t my business to ask or probe or prod them about it). Often in the past, I found writing about autism difficult because much of it required firsthand reporting or on-the-record statements, and it meant showing readers how many claims, rhetoric, and language about autism were simply not true.
Even when my first big piece about autism was published to much fanfare, I still worried about being one of the only autistic reporters, because if I messed something up, it could misinform so many people. I was burdened by the fear of letting my community down.
Those fears were unfounded because, as it turns out, I am not alone in this movement. Thanks to other autistic reporters, like Budryk, Dylan Matthews at Vox.com, S. E. Smith, and Sara Luterman, I am not solely responsible for covering autism. I have not been pigeonholed by my bosses either, so while I occasionally cover disability, I still mostly write and edit pieces about politics. Nowadays, more major news outlets quote autistic self-advocates like Ari Ne’eman and Julia Bascom and cover parents like Shannon Des Roches Rosa who are not searching for a cure for their autistic children but rather trying to help them live fulfilling lives. Similarly, journalists across the country often reach out to me when they’re assigned a story on autism, and I gladly connect them with the right resources so they can write about the topic accurately.
Parent Advocacy
The increased visibility of autistic people in public life has empowered parents to have new role models of how to raise autistic children. One such parent is Roberta “Robbie” Kaplan, who is probably best known for arguing U.S. v. Windsor in front of the Supreme Court, which resulted in the Court striking down the federal government’s ban on recognizing same-sex marriages as unconstitutional.
I was interested in speaking to Kaplan because, while her legal work was focused on ensuring the rights of one disenfranchised group—LGBTQ people—she is also the mother of someone from another marginalized group. When Kaplan found out her son was on the spectrum, she compared it to coming out—both experiences were clouded by fear and stigma. “The only way to eliminate the stigma and the shame is for more and more people who are on the spectrum to come out of the closet, for lack of a better phrase,” Kaplan told me.
As Kaplan and her wife, Rachel Lavine, began to learn about their son’s condition, they noticed how many professionals suggested that their son be exposed to things that bother him and just “grin and bear it.” Kaplan, who suffers from migraines, compared it to going to a smelly fishing pier and being expected to power through.
“It’s extraordinary to me that today, even in Manhattan among the educated wealthy classes, parents are still getting that kind of advice,” she said. “Rachel and I have consciously decided to listen to people on the spectrum and adults on the spectrum and take what they’re saying as far more important.”
Hearing Kaplan, an advocate for LGBTQ people, say that she and her wife chose to listen to autistic people was refreshing. It showed that she considers autistic people the experts about their condition and the ones who can help her be a better parent to her son. It also means she accepts her son’s autism not as something to be fixed but as an essential part of his nature. She wants to help him live the best autistic life possible rather than a life measured by nonautistic standards.
Kaplan and Lavine’s ability to accept their son is a drastic change even from how things were when I was growing up. Back then, while my mom and countless other parents navigated the new diagnostic criteria, there were few openly autistic people for parents to turn to for advice. While my mom never resorted to any harsh or draconian techniques like secretin, and I can’t defend parents who put their children through horrific treatments, I understand how it is possible for parents to pay heed to false prophets. There are nonautistic people who want to reap profits from terrified parents of autistic children who think an autism diagnosis is a worst-case scenario.
The best response, then, is to have public examples of autistic people who occupy the entire spectrum and who require various support needs. We also need more examples of families who accept their autistic relatives for who they are. A mother like Shannon des Roches Rosa, who loves and accepts her son Leo, is a perfect example of a parent who once was afraid of autism but chose love instead. People like Hari Srinivasan can show parents that their children are not “trapped” inside an autistic mind but that they just need to find a new way to communicate with them. Having positive examples like the ones in this book can show parents and families not only how to manage the difficult parts of autism but also what is possible when they support their loved ones.
“Both Rachel and I grew up as people who really have spoken up for ourselves and who believe in speaking up for ourselves,” Kaplan added. She and Rachel want their son to be that way too.
Similarly, toward the end of my interview with Ari Ne’eman, he asked how old I was when I was diagnosed. At the time, I was on vacation with my mom and sister in Jacksonville, Florida, and had been talking about the diagnostic process with my mom.
“I was diagnosed at eight—at seven or eight, yeah,” I told him.
“So, I was diagnosed at twelve,” he said. “And what’s interesting to me is that, if you go to folks who are maybe five or ten years younger than us, a lot of them were diagnosed even earlier than both of us, right?”
“Yeah, yeah,” I said.
“And so they’ve had many of the same experiences that we’ve had and also some other ones, right?” he said. Ne’eman pointed out that the kids from the generation after ours—kids like Robbie Kaplan’s son—likely had many of the same experiences that we did, like dealing with backward school systems where many autistic kids are still restrained and secluded. Many of them (like Eryn Star from chapter 7) grew up with guilty parents who believed their children were autistic because of vaccines. The generation after ours grew up with clearer diagnostic criteria for autism spectrum disorder and were born after crucial legislation like the Individuals with Disabilities Education Act was passed. Now, there are more spaces for autistic people, whether that’s organizations like ASAN or groups on college campuses.
“I remember, my first semester in college, I went to the local Hillel, and I knew this was the place I could go and connect with other people who were Jews like me,” Ne’eman said. “But there was no feeling that anywhere, let alone on my college campus, there was anything comparable to that for autistic people.”
In the same way, when I went off to UNC, I didn’t see many autistic-led organizations. When I briefly talked with some kids from a campus autism group, I realized there were no other openly autistic people in the group itself; it was seen as more of a charity activity. I never went to a meeting, so it’s true, there were not many places to be accepted even then. However, kids from the generation after mine grew up understanding their autism and eventually owning it. There are kids, like Greta Thunberg, who are aware that their autism makes them better advocates. And kids like Chris and Cori Williams’ children, who grow up with families that love and accept them, and Lydia Wayman, who has people who support her.
“That is absolutely amazing to me,” Ne’eman said. “They’ve grown up with this, with being connected to a community that has agency in a way that I never had.”
I’ve noticed this new wave of openness in my own life too. One of the most magnificent things that has happened because of my writing is that now, many college-age journalists reach out to me to ask about breaking into the business as an autistic reporter. It is a model that didn’t really exist for me when I was in journalism school, not because there were no autistic journalists—certainly there were—but there were few who were open about it and who wrote about it reg
ularly. I never wanted to write about my autism to promote myself, but if I can give some inspiration to would-be autistic reporters, then I know I have done a service, which is why I wanted to become a journalist in the first place.
I still regularly get e-mails and messages from parents of autistic kids who want advice or are just grateful that I offer an example of a different way to be autistic in this world. I’ll carry these messages with me forever. I hope that with this book, I’ve shown that there is no correct way to be autistic and that autistic people who have higher support needs or those who cannot speak or hold full employment deserve as much dignity and respect as I am afforded.
And the story for Generation Z and beyond will be unique. To be certain, many of them may live with continued challenges, like the persistent misinformation about vaccines or incomplete portrayals of autistic people in pop culture. But they will have grown up with concepts like neurodiversity as part of the lexicon. Hopefully, they will not have to wait until their twenties to accept their autism (like I did). They will live in a world with fewer institutions and cruel treatments. Through the work that their peers and predecessors have done, they will have role models setting an example for how to be autistic in a world that is not built for us. I already see this new generation’s work on the internet, and I’m so impressed by their willingness to embrace the parts of themselves that sent their ancestors to institutions. They will blaze their own path far beyond any horizon I can see.
I hope they find ways to bend the world to fit them. As the conversation continues to evolve, I hope new voices will join in and add to it. My earliest writings about autism feature some concepts that I now find unsavory (like talking about a cure or functioning levels). Meeting autistic people in my journeys as a journalist changed how I view autism and, in turn, myself. My hope is that I can do the same for the next generation of autistic people while giving them a working language to understand themselves. At the same time, I trust that they will refine the grammar in a way they best see fit.
At the close of the Civil War in 1865, Frederick Douglass, the runaway slave turned abolitionist, addressed the Massachusetts Anti-Slavery Society, where he vociferously called for giving Black people the right to vote. “What I ask for the Negro is not benevolence, not pity, not sympathy, but simply justice,” Douglass said.
It would be daft to compare autistic people’s tribulations to those of enslaved people and the experiences of Black Americans (not to mention the many black autistic people who face myriad difficulties balancing all of their identities). But I do see a similarity in how autistic people have been historically dehumanized. I think back to Jessica Benham, who overheard a donor say that people in institutions were not “fully human,” and Ole Ivar Lovaas, the psychologist who helped pioneer the use of applied behavioral analysis in children, who said that autistic people “are not people in the psychological sense.”
For years, this toxic way of thinking has denied autistic people the chance to speak for themselves and articulate what their desires are. Often, if they are like me, society tells us we are not “autistic enough” to understand the needs of autistic people who require more support. However, if they require more support or cannot speak, then their agency is denied altogether. Either way, our attempts at self-advocacy are rendered illegitimate, and parents are given the microphone instead.
Douglass concluded his passionate oration on voting rights by asking, “What shall we do with the Negro?” to which he had a simple response: “Do nothing with us.”
Here now, I’d like to make this same request for the autistic community. People who are not autistic often assume they are acting benevolently by hand-holding those on the spectrum. But despite their best intentions, there is an element of condescension in these actions because it assumes that nonautistic people know what’s best. But it is autistic people who live with the condition of autism—for all of its positives and negatives—as well as with the consequences of any collective action meant to help them. If there is going to be policy that has seismic impact on their lives, they deserve to have a say in it, no matter how they communicate. Furthermore, while many parent advocates, clinicians, and other “experts” may have good intentions, centering their voices continues to give them power that should lie with the autistic community. To achieve any true sense of freedom, autistic people need to take this power back.
This book does not seek to advocate for one policy proposal versus another; policies that affect autism are multifaceted and should be debated in the public sphere. But what should happen is that when autistic people articulate their needs (however that articulation is done), they should be listened to as legitimate voices.
Epilogue
In my last month of writing this manuscript, two disparate things happened. The first was that Mel Baggs died. Mel (whom I wrote about in chapter 1) was an advocate and the first autistic person I ever saw on the news. When I heard about their passing, I remember feeling overwhelming sadness. Though I never met them, I grieved knowing that they died without knowing what they meant to me.
I knew Mel got a lot of press for a YouTube video they uploaded in 2007, but I’d never watched it in its entirety. Now, with the news of their passing, I pulled up the video. The first half features Baggs making noises with their voice while also stimming in multiple ways—running their fingers across a keyboard, scraping their fingernails against the steps of a stepladder, nuzzling their face into a magazine, and many other mannerisms.
These were all things I immediately recognized. Most people don’t understand how soothing a magazine page against the face can be or how much the tension and friction of a book page can excite the senses. Many people don’t get how running your finger under cold water can make you feel completely alive.
The second part of the video features a voice narrating Baggs’s typed words as they run their hands through the water, experiencing sensory processing like seeing, tasting, smelling, feeling, and hearing. Baggs’s point was to show that there are multiple forms of communication.
“Ironically, the way that I move when responding to everything around me is described as ‘being in a world of my own,’” they say in the video. “Whereas if I interact with a much more limited set of responses and only react to a much more limited part of my surroundings, people claim that I am ‘opening up to true interaction with the world.’”
Similarly, Baggs noted the hypocrisy that people like them were taken seriously only if they communicated in the language neurotypical people understood. “I find it very interesting that failure to learn your language is seen as a deficit but failure to learn my language is seen as so natural that people like me are officially described as mysterious and puzzling rather than anyone admitting that it is themselves who are confused.”
Baggs was insistent that this video was not supposed to be a “voyeuristic freak show” demonstrating the “bizarre workings of an autistic mind.”
“It is meant as a strong statement on the existence and value of many different kinds of thinking and interaction in a world,” they said. This brief statement, and Baggs’s decision to show the way they communicated without words, articulated everything I wanted to say more eloquently than I ever could. Baggs’s existence lit a spark in me that swelled into a wildfire that is my life’s work.
The other thing that happened was that Drew Savicki—the autistic political prognosticator whom I profiled in chapter 3—finally landed a job after years of searching. Throughout the 2020 presidential election, he contributed articles to 270toWin, a website most famous for having a map of all fifty states that allows people to play around with hypothetical votes to see different ways to win the electoral college (I use this site to game out multiple scenarios for elections). Savicki’s pieces offered comprehensive breakdowns of states, their political trajectories, and why they vote the way they do. In addition, he occasionally does side work for Democratic elected officials.
Despite not having a college degree, Dre
w has carved out a niche for himself as a brilliant and respected election analyst, and I consider him one of the best out there because he does not let his own biases get in the way of his attempts to game out races. His role at 270toWin.com ended after the election but it cemented his status in politics. I want him to succeed and want him to be recognized for the skill I know he has. I’m thrilled for Drew, especially since I’ve known him for some time and understand how frustrating it can be to have talents and skills but not find a job with which they connect.
Savicki, Baggs, and I are supposed to have different variations of autism; I am supposed to be considered the “highest functioning,” Savicki is considered somewhere in between, and Baggs was supposedly “low-functioning.” But seeing how much Baggs’s stims matched mine and knowing how Savicki’s own skill in politics surpasses mine, I realized how little difference exists between us.
We all require support, both in terms of services and social support from those around us. All three of us—and all autistic people, for that matter—require people treating our communication and our talents as legitimate. What makes the difference, ultimately, is if people consider how we articulate our needs as valid.
“There are people being tortured, people dying because they are considered non-persons because their kind of thought is so unusual as to not be considered thought at all,” Baggs said at the end of their video. “Only when the many shapes of personhood are recognized will justice and human rights be possible.”
Acknowledgments
I am first off eternally grateful for my family. Throughout this book, you read about my mom’s love and dedication toward giving me a better life. I can assure you that she is even better in real life and I thank God for her. If parents want to know what they can do to best advocate for their kids, they can’t go wrong by looking at Debra Garcia. This book is the fruits of her labor, from teaching me how to read to ensuring I got adequate services in school and pushing me to do my best in class. In the same respect, my earliest memories of journalism are of watching the news with my father, Charlie. His regular watching of talk shows exposed me to a wider world, and the people on television looked like they were having a lot of fun. I am thankful for him and that he has found love in his life again with Helen. In the same respect, my stepdad, Bob, has constantly supported me in more ways than I can count. When he saw I found something as compelling as journalism, he sought to foster it by buying me as many books and magazines as possible. His love and advice have guided me constantly. My sister, Stephanie, has been my rock and my best friend since she was born eleven months after I was. To see her grow up into such an amazing daughter, wife, and teacher is one of the greatest joys of my life. I am also grateful to her husband, Benny Oliveri, and his family for their support during this time and all times. Hopefully finishing this book and the end of a pandemic means I can travel to see you more. Much thanks also to my extended family of cousins, aunts, and uncles through blood and marriage. So many times, when I fell down, your love lifted me back up. I lost my grandmother Connie Hernandez when I began writing the proposal for this book, and I think about her every day and I know I am alive and thriving because of her prayers and love from beyond. Meanwhile, I know my late grandmother Garcia, who died when I was nine but constantly watched the news and was politically engaged (my parents’ greatest nightmare was that she would teach my sister and me about the Clinton impeachment scandal when we were in grade school), would have loved that I got into political journalism. I love and miss you both.