We're Not Broken Read online

  Contents

  * * *

  Title Page

  Contents

  Copyright

  Dedication

  Introduction

  “Don’t Let Me Be Misunderstood” | Policy

  “In My Mind, I’m Going to Carolina” | Education

  “That Ain’t Workin’” | Work

  “Gimme Shelter” | Housing

  “Somebody Get Me a Doctor” | Health Care

  “Ain’t Talkin’ ’Bout Love” | Relationships

  “Not Sure if You’re a Boy or a Girl” | Gender

  “Say It Loud” | Race

  “Till the Next Episode” | What Comes Next

  Epilogue

  Acknowledgments

  Notes

  Index

  About the Author

  Connect on Social Media

  Copyright © 2021 by Eric Garcia

  All rights reserved

  For information about permission to reproduce selections from this book, write to [email protected] or to Permissions, Houghton Mifflin Harcourt Publishing Company, 3 Park Avenue, 19th Floor, New York, New York 10016.

  hmhbooks.com

  Cover design by Pete Garceau

  Background image © Veronika Demenko / iStock / Getty Images

  Library of Congress Cataloging-in-Publication Data

  Names: Garcia, Eric, 1990– author.

  Title: We’re not broken : changing the autism conversation / Eric Garcia.

  Description: Boston : Houghton Mifflin Harcourt, 2021. | Includes bibliographical references and index.

  Identifiers: LCCN 2020051612 (print) | LCCN 2020051613 (ebook) | ISBN 9781328587848 (hardcover) | ISBN 9780358578338 | ISBN 9780358578741 | ISBN 9781328587879 (ebook)

  Subjects: LCSH: Garcia, Eric, 1990—Mental health. | Autism. | Autistic People—United States—Biography. | Autistic people—Biography. | Autistic people—Social aspects.

  Classification: LCC RC553.A88 G364 2021 (print) | LCC RC553.A88 (ebook) | DDC 616.85/8820092 [B]—dc23

  LC record available at https://lccn.loc.gov/2020051612

  LC ebook record available at https://lccn.loc.gov/2020051613

  v1.0721

  FOR CONNIE AND DELFINA

  Your love sustains me

  Introduction

  This story starts in Des Moines back in 2017. Ostensibly, I was there to cover the Polk County Democratic Party’s steak-fry, but I was really there because Iowa is where the seeds for both corn and presidential aspirations are planted. That morning, I was interviewing Representative Cheri Bustos of Illinois. There were rows and rows of corn in the fields outside the window of the office where we met, just like I had seen on television. I was decked out in my best grizzled-campaign-reporter outfit of jeans, flannel, and sneakers with my reporter’s notepad in hand. Bustos was in jeans, high-heeled boots, and a red jacket as if to emphasize her rural Midwestern bona fides and show that despite being a Democrat, she could capably represent a district that had voted for Donald Trump in 2016.

  Moments like these are why I became a reporter. I spent my teenage years wanting to play guitar in rock-and-roll bands, traveling the world and finding adventure. But when my parents told me I needed to find a legitimate job, journalism seemed like the next best thing. I could still travel the country, meet new people, and have that kind of anti-authority attitude that I got from my thrash-metal albums.

  I always try to mention common ground with anyone I interview, and in this case, I brought up that I am a native of Bustos’s home state and a Chicago Cubs fan. Later, I mentioned a hypothetical single mom raising a kid with autism, interjecting “like myself.” The interview continued as I asked her whether she was considering a run for president. She gave a good nonanswer, coy enough not to be perceived as naked ambition so early in the game but not flatly denying she was thinking about the White House either.

  As we finished the interview, Bustos, who used to be a reporter herself, turned the tables and asked: “So what is it like to have autism?”

  After being a bit befuddled—it’s a question I hadn’t considered—I gave a vague answer, but Bustos’s question stuck with me. How could I explain what it is like to have this massively complex condition that has only really been in the public lexicon for seventy years without getting it wrong? How could I share my personal experiences while also conveying that they are not indicative of the entire autism spectrum? At the time, I had been thinking a lot about autistic people’s humanity and how often it is overlooked by the broader public. But interactions with both Democrats in Congress, like Bustos, and Republicans made me realize how many politicians just want to get it right. I realized there needed to be a book showing exactly what it was like to be autistic across America.

  As a political journalist, I’ve spent my career watching Congress, first at National Journal, then as a reporter at Roll Call, then as an editor at the Hill, and then as an editor at the Washington Post. From this work, I know most politicians don’t act with malicious intent. They are often just as good as the information they receive, and that information serves as the basis for their spending and budget priorities. In Washington and any state capital, money equals policy. Most politicians and members of Congress are too busy to become experts on every topic, so they rely on other people who are knowledgeable about a subject to inform their opinions. If their constituents or their advisers provide bad information, it will lead to them crafting policy that is harmful or ignorant of people’s needs.

  On a more micro level, when well-meaning people—from researchers and clinicians to journalists and parent advocates—have only tropes as their source of knowledge, they wind up inadvertently hurting their autistic friends, family members, neighbors, loved ones, and coworkers. The lack of autistic people’s input means that even the experts who moved forward conversations in one regard can perpetuate stigmatizing ideas about autism in another. This goes back to the beginning of America’s understanding of autism. Leo Kanner, a researcher at Johns Hopkins University, published the first landmark study of autism in 1943: “Autistic Disturbances of Affective Contact.” While Kanner’s study can be credited with bringing an awareness of autism to the broader public, that same study birthed numerous insidious myths about the condition that still exist today. Notably, Kanner wrote that while autistic children were born with an “innate inability” to form typical social contact with people, he noticed that “there are very few really warm-hearted fathers and mothers [of autistic children].” He later told Time magazine that the autistic children he studied were “kept neatly in a refrigerator which didn’t defrost,” thus creating the problematic stereotype of “refrigerator mothers.”

  Kanner’s words took hold and found a champion in Austrian-American psychologist Bruno Bettelheim, who further smeared parents by saying they wished their autistic child did not exist. Even though Kanner would later “acquit” parents of responsibility for their children’s condition and denounce Bettelheim’s book, the theory had already permeated the zeitgeist.

  Similarly, while psychologist Bernard Rimland helped relegate the idea of refrigerator mothers to the dustbin of pseudoscience, he also gave credence to the most popular contemporary misconception about autism: the idea that mercury in vaccines causes autism.

  I was a teenager when I first realized how easy it is to spread misinformation about autism. I was watching Larry King interview former Playboy model and television host Jenny McCarthy, and she repeated the false claim that vaccines made children, like her son, autistic. The interview was broadcast on CNN, so I presumed there had to be some merit to the idea. I even asked my mom if I had been vaccinated around the same time that they found out I was autistic. She was puzzled; she’d never thought there was a lin
k between the two.

  Much later, I learned that McCarthy’s claims were false, but she had been given a major platform, not just on CNN but also on Oprah Winfrey’s show. And somehow, decades later, the myths and falsifications about vaccines and autism persist. Years later, I was living in Washington, DC, and working as a reporter for National Journal. It was 2015; the Republican presidential primary was heating up, and I had been assigned to cover a debate-watching party at a bar on Capitol Hill. At one point, I turned my eyes to CNN as moderator Jake Tapper asked Donald Trump about his previous tweets speculating a link between vaccines and autism. Trump, being Trump, doubled down. “Autism has become an epidemic,” he said, and he talked about the spike in autism diagnoses in the past thirty years. He told a story about a friend whose child received a vaccine “and a week later got a tremendous fever, got very, very sick, now is autistic.”

  Like many things Trump says, this was, at best, wildly ignorant of the facts and, at worst, a brazen lie. My disappointment continued when one of his Republican primary opponents, retired neurosurgeon Ben Carson (who should know better), gave Trump a pass. This, of course, would become commonplace once Trump was elected: Trump would say something outrageous that Republicans knew was not true, but they felt they had to defend him, and they sacrificed their own credibility to do so.

  Around this time, I was working on a major essay that would serve as the basis for this book in which I argued that society should stop trying to cure autistic people and instead help autistic people live fulfilling lives. Seeing Trump spread such toxic and dangerous information showed me that there was still a deep misunderstanding about autistic people. There is too much mythology and not enough data, an unfortunate reality that desperately needs to be counteracted.

  It would be easy to dismiss Trump’s comments as bombast and compare them to the many conspiracy theories he later espoused during his presidency. But he was buying into what many other people already believed. (I’ll take an in-depth look at how the vaccine myth was spun in chapters 1 and 5.)

  But that’s not the only myth about autism that has played out in the media, where autistic adults are often portrayed as dangerous. Most notably, there is the myth of the autistic shooter—after reports that the gunman who killed twenty-six people, including twenty children, at Sandy Hook Elementary School was on the spectrum, calls to the Autism Speaks hotline jumped 130 percent. As Peter Bell, an executive vice president at the organization, told Time magazine, people wanted “to put the blame squarely on the fact that the shooter may have had autism.” Bell added that the “rush to put a label on the situation has caused significant harm already.”

  Five months previously, MSNBC host Joe Scarborough stated that the man who shot up a movie theater in Aurora, Colorado, was “on the autism scale,” although he had no evidence to substantiate this outrageous claim. (What was even more galling was that Scarborough has a son, Andrew, who is autistic. He later apologized.) When there was speculation in 2015 that a shooter at Umpqua Community College in Oregon was autistic, a petition had to be started to take down a Facebook page called “Families Against Autistic Shooters.”

  In reality, there is no evidence to indicate a connection between autism and violent behavior. This harmful stereotype is fueled solely by speculation and misunderstanding. Though we may never fully comprehend the twisted motivations behind mass shooters, autism alone is never the cause.

  While these are all extreme examples, what they make clear is that many people have no idea how autism works, and the false narrative contributes to the idea that autism is a menace that must be eradicated lest helpless autistic children grow up to become stone-eyed snipers.

  Many times, the misinformation that is spread about autistic people is rooted in the incorrect theory that autism is a problem caused by larger social ills (as anti-vaccine activists believe) or that it is a threat to the general public (as is the case with the myth of autistic mass shooters). And often, these falsities are spread by people who claim proximity to autism, like parents and researchers. That is why it is so essential for autistic people to be included in all parts of the conversation and why the conversation itself needs to change.

  According to a 2019 report from the Interagency Autism Coordinating Committee, the federal government’s advisory body on the condition, 75 percent of all research spending goes toward finding the root causes of autism and the best way to “treat” autistic people. The report also showed that the U.S. government spent only 6 percent of its budget on “research to improve services and supports for people with [autism spectrum disorder].” This contrast in spending reflects this country’s backward values; rather than learning how to best assist autistic people as they navigate the world, researchers focus on mitigating symptoms and finding a cure.

  But autism likely can’t be cured. And despite the misconception that autism primarily affects children, eventually, those autistic children grow up. As they do, they need proper support systems and assistance to live their best lives within society. It would behoove the United States, a nation that leads the world in research funding, to focus on what autistic people really need: to get a job if they are able and not to live in poverty if they can’t find one; to avoid discrimination; to receive an adequate education; to live within the community they choose; to have access to adequate health care; and, finally, to be free to pursue fulfilling personal lives.

  An estimated one in fifty-four children in the United States has autism spectrum disorder, according to the Centers for Disease Control and Prevention. It is much more difficult to determine how many autistic adults there are because most testing methods are designed for children. Nevertheless, another CDC study estimated that 2.2 percent of the adult population is autistic. This book seeks to counteract the misinformation out there about autism to show what reforms are needed to improve the quality of life for autistic people in this country.

  And when it comes to dispelling myths, I’m beginning with myself. My very existence contradicts what many people believe about autism. First off, I am entering my third decade of life; I’m not the child many people associate with this condition. Second, I am a person of color, which challenges the common idea that autism mostly affects upper-class white people. Furthermore, my line of work as a journalist exists outside the binary of what people think autistic people can do: I support myself with a job outside of the STEM fields, and I have done so since I graduated from college.

  It is because I challenge how people view autism that I believe I am uniquely qualified to write this book. Frequently, people like me are portrayed as “overcoming” autism, something that is viewed as a great achievement, but autism is an integral part of my identity, and as such, it has played a role in my success. Since I began reporting and writing about autism, I have met autistic people who are much more intelligent and capable than I am but who are languishing because they did not have the same opportunities, support structure, or just pure luck that I did. The world around them is a bigger impediment to them than their autism ever was.

  This book profiles autistic people across the country, from Nashville to Michigan, from Pittsburgh to the Bay Area of California to the nation’s capital. Each person’s story will hopefully debunk various myths about autism. There are many: that autism is something that affects only white males; that autistic people with more support needs are somehow less human or valuable than autistic people who require less support; that autistic people should appear in the media only when they inspire hope or pity; that autistic people are incapable of holding jobs outside of the technology field, of having relationships, or of living independently; that autistic people cannot advocate for themselves.

  A tenet of journalism is that the writer is not the story, and I know that my story alone is not indicative of the story of autism in America writ large. I was born and was diagnosed at a time that the paradigm of autism was changing to include a broad spectrum. This was a few years before the pernicious myths about vaccines to
ok the discourse about autism hostage. Disability rights activist Rebecca Cokley coined the term ADA Generation for disabled Americans who were in school when the Americans with Disabilities Act and the Individuals with Disabilities Education Act was passed, in 1990, the year I was born. In that same respect, autistic people who went to school after the ADA’s passage are part of the Spectrum Generation, as they were often diagnosed when they wouldn’t have been at any other time and were given their first tastes of freedom thanks to the ADA (I will discuss the Spectrum Generation in more detail in the next chapter). Throughout this book, I will include parts of my own narrative as a member of this Spectrum Generation and the ADA Generation where I feel it is necessary and appropriate to compare the experiences of the people I profile.

  Last, I want to include some notes about language. First, it should be noted that as of 2013, autism diagnoses exist under the fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5) prescribed term of autism spectrum disorders (ASD). But autism previously existed under various terms, including infantile autism, Asperger’s syndrome, and pervasive developmental disorder not otherwise specified (PDD-NOS). As such, throughout this book, there will frequently be mentions of those terms and others. The DSM and many labels are imperfect tools, and thus, when it comes to my sources, I will attribute their diagnosis based on how they self-identify. I sincerely hope that future generations will create terminology that more accurately describes autistic people’s experiences.

  I understand that because I am what many consider “high-functioning,” I might not write accurately or empathetically about autistic people who require higher support needs. Thus, I include many people whom society might consider “low-functioning” to show that there are fewer differences between us than one might think. This book will also highlight the many difficulties that autistic people who are considered high-functioning still face. I want to break down the unhelpful and harmful binary that assumes people like me do not struggle while presuming incompetence in those who are nonverbal.