We're Not Broken Read online

  Even the terms high-functioning and low-functioning are considered inaccurate by some in the community, so I’ve made deliberate choices to use the terms autistic people prefer. Unless quoting other sources, studies, or published work, I won’t use labels having to do with functioning. Instead, I’ll refer to autistic people who, for example, cannot speak or who need 24/7 care as having “higher support needs.” In the same respect, I identify those autistic people such as myself who do not require around-the-clock care, who might live independently, or who hold full-time jobs as having “lower support needs” unless they identify otherwise.

  Many autistic people who require less support often live their lives undiagnosed; some who do get diagnosed choose not to disclose. I say this because I am one of those people. In my reporting, I learned how many LGBTQ autistic people exist and heard how many of them found parallels with accepting autism as part of their identity and revealing their sexual orientation or gender identity. In turn, I use the terms like out and openly to describe autistic people who incorporate their autism in their public identity. I will discuss autism and gender identity more in chapter 7.

  This book will offer the most relevant data from peer-reviewed journals, government research, court cases, and media reports. In some cases, there will be citations of research that has been debunked, such as the theories about vaccines or Kanner’s and Bettelheim’s studies that blamed withdrawn parents for autism. I will also highlight areas where scientific researchers and autistic people profoundly disagree, such as over the concept of “extreme male brain” theory, which posits that autistic people’s brains have more “male” traits, such as systemizing, and fewer “female” traits, such as empathizing (autistic people, particularly autistic women, strongly dispute this). I’ll highlight when there is little to no information about a subject, such as the demographic makeup of the autistic adult population.

  Some readers, especially parents of autistic children, may take issue with my authority here, since my experience may not be reflective of the broader autism community. I can’t speak for everyone, but I’ve tried to include as many criticisms of my claims as possible to give them a good-faith airing before I explain why they are unhelpful, especially to their autistic loved ones.

  Much of this book will speak about parents’ misguided efforts to raise autistic children. This could lead to the misunderstanding that I am somehow anti-parent or critical of them. Nothing could be further from the truth—as you will see throughout this book, every opportunity I had in life came to me because of my family’s dedication.

  More than a critique, this book is an exploration of how misinformation and fear can drive even the most well-intentioned parents and people to make harmful decisions. I feature many parents who are dedicated to shifting people’s attitudes about autism. Keivan Stassun, the parent of an autistic son and the director of the Frist Center for Autism and Innovation at Vanderbilt University, said something once that has stuck with me: “I would not change my son for the world, so I will change the world for my son.”

  Many neurotypical people who live with autistic people are committed to improving their loved ones’ lives. I hope that parents and loved ones of autistic people take the lessons of this book to heart so they can be more effective allies.

  Finally, I’d like to acknowledge that I’m lucky. At the time of writing this book, I rent a room in a house in Washington, DC, and I have an established career doing what I have wanted to do since I was fifteen. I’ve covered politics at one of the most prestigious newspapers in the United States during one of the most unprecedented times in our nation’s history. Outside of work, I have great friends, a fulfilling life, and a family that supports me no matter what.

  I’ve had the right opportunities at the right times. I have a mom who was able to stay at home full-time to raise me for my first twelve years and who did not buy into harmful myths about autism. I had professors who believed me when I said I was disabled and who were willing to accommodate me. I have had employers who were willing to work with me to make a positive work environment, which has allowed me to be a good employee. I have friends who love and accept me and gently guide me when I struggle with social cues.

  Since I began writing and reporting about autism, I have met countless people who weren’t afforded the same chances. Their educators doubted their need for accommodations. Their parents mourned their condition and subscribed to toxic tropes. They couldn’t find work because employers were unaccepting. But none of that reflects who they are; it’s a reflection of a world that penalizes them for not playing by its rules.

  This book is a message from autistic people to help their parents, friends, teachers, doctors, and researchers see a side of autism that they may not have previously considered. It’s also my love letter to autistic people, who will see that we’ve been forced to navigate a world where all the road signs are written in another language. Reporting about autism for the past half a decade has given me an identity and a home base, a place I did not previously have, so thank you to the autistic people who have welcomed my reporting on them.

  1

  “Don’t Let Me Be Misunderstood”

  * * *

  Policy

  At Hyde Park Prime Steakhouse near Heinz Field, where the Pittsburgh Steelers play, the dim lighting, hors d’oeuvres, and staffers wearing campaign buttons corralling people to sign petitions all indicate one thing: There is a political event taking place. On this February afternoon in 2020, candidates—incumbent and challenger alike—are seeking the endorsement of the Steel City Stonewall Democrats, a group that represents lesbian, gay, bisexual, transgender, and queer Democrats in Pittsburgh.

  LGBTQ rights are far from secure—if they were, the Stonewall Democrats would not need to exist—but this day, Jessica Benham is courting the group for its endorsement in hopes of taking another step toward acceptance. Benham, twenty-nine, is part of the Spectrum Generation: kids who were born and diagnosed around when the public’s understanding of autism changed from viewing it as a form of childhood psychosis to seeing it as a broad spectrum that contains multiple variations. They were also the first group that benefited from legal protections and civil rights that had previously been denied to autistic people, however minuscule or piecemeal these statutes were. They represent a shift in autism advocacy, one that places autistic people—rather than their parents, medical and psychiatric professionals, or researchers—at the center. They also advance the idea that autistic people and people with other developmental disabilities are not failures; they deserve acceptance from the broader public just as they are.

  There have been at least two openly autistic state legislators in the United States before Benham. Briscoe Cain, a Republican from Texas, came out as autistic after he was elected to the state legislature in 2016. Democrat Yuh-Line Niou won her seat in the New York State Assembly and spoke about it to a student news website that same year. Benham would be the first autistic woman to be elected in Pennsylvania.

  “I’m ready to make some history. And I don’t know about you all, but where my heart is at is making some history for the Thirty-Sixth District,” she tells the crowd. She doesn’t immediately mention her identities. Rather, she rattles off goals relevant to Democrats in the audience, such as fighting for health care for all, combating the opioid epidemic that has ravaged Pennsylvania, and investing in infrastructure.

  Only then does Benham mention she is autistic.

  “I’m going to be the first out LGBTQ woman in the state legislature in Pennsylvania,” she says to applause. “I’m also going to be the first openly autistic woman elected to a state legislature anywhere in this country.” This leads to even more enthusiastic applause and occasional hollers.

  Later, when I asked her about the sequence of her speech, she said that it was important to show that disabled people were not single-issue people.

  “By the time I get to ‘We’re making history by being the first this or the first that’—w
hich people seem to care about a lot more than I necessarily care about—people are riled up and then I don’t have to come back down to be like, ‘Let’s talk about infrastructure spending,’ which is my big thing,” Benham tells me later while we are going door to door to gather signatures for her to get on the primary ballot.

  A Contested Condition

  Years and years of autism advocacy paved the way for Benham to get to this moment. Autism has likely existed as long as humans have, but it was a narrowly defined condition until very recently. Swiss psychiatrist Eugen Bleuler first used the term autism in 1911 to describe a symptom of childhood schizophrenia. This would be reflected when autism appeared in the first edition of the Diagnostic and Statistical Manual of Mental Disorders, in 1952, in the section on “schizophrenic reactions occurring before puberty.” It cataloged the condition under an umbrella diagnosis of “psychotic reactions in children.”

  In 1968 in the DSM-II, autism again appeared as a symptom of prepuberty schizophrenia. Infantile autism finally appeared as separate from schizophrenia in the DSM-III, published in 1980. The condition had to have an “onset before 30 months of age”; the child had to display a “pervasive lack of responsiveness to other people” and exhibit “gross deficits in language development.” If children could speak, they had to display speech patterns such as “immediate and delayed echolalia [parroting another person’s speech],” peculiar language, and “pronominal reversal,” which is referring to oneself in the second or third person but to others in the first. The diagnosis also required children to have “bizarre responses” to their environment, such as resistance to change, and “peculiar interest in or attachments to animate or inanimate objects.” On top of that, to distinguish autism from schizophrenia, children needed to exhibit “absence of delusions, hallucinations, loosening of associations, and incoherence.”

  The DSM-III included diagnostic criteria for “childhood onset pervasive developmental disorder,” another form of autism that in 1987 was renamed “pervasive developmental disorder not otherwise specified” and was used when children had impaired social interaction and communication skills “but the criteria are not met for Autistic Disorder, Schizophrenia, or Schizotypal or Schizoid Personality Disorder.” The DSM-III-R revised the diagnostic criteria for “Autistic Disorder,” requiring children to exhibit eight of sixteen different symptoms. Children (and it was mostly children) had to exhibit at least two traits in the “reciprocal social interaction” category—one trait that showed difficulty in communication and imaginative activity and one trait that showed “restricted” activities and interests.

  The DSM-IV (1994) and the DSM-IV-R (2000) reduced the num­ber of symptoms from eight to six. It also included a new diagnosis named for the researcher Hans Asperger, who had conducted some of the first studies on autism in Nazi-occupied Vienna. Unlike Kanner, Asperger theorized that autism was not a rare and narrowly defined disorder but a common condition that existed on a “continuum.” His work was purportedly lost before British researcher Lorna Wing, a mother of an autistic daughter, argued that autism existed on a spectrum. (Since then, evidence has surfaced indicating the extent to which Asperger “actively cooperated” with the Nazis’ child euthanasia program; he even referred children to a clinic where some of them died. This has removed much of the shine from his image.) Wing’s husband, John, who spoke German, translated Asperger’s work for her seminal 1981 article entitled “Asperger’s Syndrome: A Clinical Account.” Wing suggested that autism belonged in a “wider group of conditions which have, in common, impairment of development of social interaction, communication and imagination.”

  Like normal autistic disorder, an Asperger’s diagnosis required the child to have social impairment, such as a lack of eye contact or difficulty developing peer relationships, as well as exhibit restrictive and repetitive behaviors. But unlike a child with autistic disorder, a child with Asperger’s did not have a “clinically significant general delay in language,” nor a “significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.”

  But nineteen years after the clinical introduction of Asperger’s—which is to say, a year after kids diagnosed with Asperger’s in 1994 could vote but two years before they could legally drink—the diagnosis for autism would again change. In 2013, the American Psychiatric Association placed autistic disorder, Asperger’s syndrome, childhood disintegrative disorder, and PDD-NOS in the DSM-5 under the umbrella term autism spectrum disorder. This new label for the condition is characterized by “persistent impairment in reciprocal social communication and social interaction” and “restricted, repetitive patterns of behavior.”

  All of these changes to the DSM led to a surge in autism diagnoses, which makes sense; if the definition of autism is broadened, it stands to reason that more people who went undetected in the past would get diagnosed.

  And throughout the years, these changes in diagnostic criteria mirrored changes in public policy. In 1990, President George H. W. Bush signed the Americans with Disabilities Act. Congress barely mentioned autism during deliberations and it appeared nowhere in the text of the law. The law was far from the windfall that disabled people needed, but it was an instrumental in portraying people with disabilities as a group deserving of civil rights. Regulations from the ADA Amendments Act of 2008, which expanded the definition of disability, specifically named autism as a disability, and therefore, autistic people were protected by it.

  The same year the ADA was passed, Congress reauthorized the Education for All Handicapped Children Act under a new title, the Individuals with Disabilities Education Act (IDEA). The House of Representatives report on the legislation said that “autism has suffered from an historically inaccurate identification with mental illness” and that including autism in IDEA was “meant to establish autism definitively as a developmental disability and not as a form of mental illness.” IDEA mandated that students with disabilities were provided with a “Free Appropriate Public Education,” and now that specifically applied to students with autism. It also meant that schools had to report the number of autistic students they served, along with other disabled students, to the U.S. Department of Education. These improvements in knowledge and changes in policies had the potential to move American politics toward a more accepting model of autism.

  I am a beneficiary of these changes and a member of this new Spectrum Generation. These sea changes happened as I was growing up; I was born in 1990, the year the ADA was passed and the changes to IDEA were made. Around the time the DSM would come to include Asperger’s syndrome, my family was living in Wisconsin. It was there that clinicians asked my mom to bring me in for extra tests, an ordeal that ultimately led to my Asperger’s diagnosis. I was a college student at the University of North Carolina when the DSM-5 changed its criteria to put all variations of autism under the umbrella diagnosis of autism spectrum disorder (ASD). Much of my schooling from fifth grade onward was at private parochial Christian schools, but in my early years in public school, thanks to IDEA, I had special education services and tutors to help me with math, English, and handwriting. When I got to college, the ADA meant that I could have reasonable accommodations—like extra time on tests and separate locations to take them—which meant I never had to worry about my environment; I only had to worry about my studies. These policies were not charity; they allowed me, and scores of other disabled people, access to the same freedom that nondisabled Americans take for granted. It was my chance to cash the check of freedom guaranteed in the Declaration of Independence.

  Before I ever learned I had a disability, politics fascinated me and became my special and myopic interest. My mom taught my sister, Stephanie, and me to read when I was three, and she constantly pressed us to learn about American history. My mom was adamant about us learning how to read at an early age and I particularly loved presidential history. As Mexican
Americans, my parents firmly identified with the latter part of that term while feeling pride in the former.

  My hunger for history led to my understanding that politics is essentially history in action. Today’s newspaper articles become footnotes in tomorrow’s textbooks. My dad has been an ardent Texas Republican since the Reagan administration and watches Fox News regularly, and my stepdad, Bob, carries his Democratic roots from his youth in Allentown, Pennsylvania, and loves Joe Biden. In this way, it makes complete sense that I wound up working in political journalism, covering campaign speeches in Iowa and Illinois, interviewing senators near the underground train that connects the office buildings to the main Capitol Building, and prognosticating how states would vote in future elections.

  First my interest in politics was a hobby, then it was a career, but as I read more about the history of autism and disability rights, politics became intensely personal for me. I realized that I get to report in the halls of Capitol Hill because of the work of disabled activists who literally crawled up the steps of that very building to help pass the ADA. When people see me as an inspiration because I “overcame” my disability to graduate college and hold a job, I want to respond that the only things I overcame were the specific obstacles in front of me. I am a return on others’ investment in policy. In the same way, every autistic person who languishes in classes or winds up in a group home or institution is not a reflection on a poor upbringing but rather a failure in policy.

  I was a teenager when society, including politicians and celebrities, began to take notice of autism. It shaped how I saw myself in ways I did not fully grasp in the moment. While I had a vague understanding of myself as someone with Asperger’s syndrome, I did not know what that meant, other than that it was some type of autism. As an aspiring guitarist, I cared more about learning how to write my own riffs that were as heavy as AC/DC’s and Black Sabbath’s. One day, when watching a show on VH1 Classic, a channel that played my favorite metal music on weekends, I saw a public service announcement with many of my favorite musicians rattling off harrowing statistics about a mysterious condition.