We're Not Broken

by Eric Garcia

  The second group of people to whom I owe the greatest amount of thanks is every person I interviewed, specifically all of the autistic people. Autistic people’s capacity to control their own lives is constantly questioned and it often starts with their capacity to speak. So, for that I am grateful to Eryn Star, Jessica Benham, Lydia and Brisky Wayman, Sara Gardner, Andrew Savicki, Shannon and Leo Rosa, Claire Barnett, Chris and Cori Williams along with their children, endever star, Kris Harrison, Dave Caudel, Ashia Ray, Aria, Ari Ne’eman, Julia Bascom, Samantha Crane, John Marble, Amy Gravino, Arianne Garcia, A. J. Link, Morénike Giwa Onaiwu, Liane Holiday Willey, Claudia Ng, Charlie Garcia-Spiegel, Sara Luterman, Finn Gardiner, Timotheus Gordon, John Elder Robison, Lindsey Nebeker, Dave Hamrick, Lydia X. Z. Brown, Hari Srinivasan, Richie Combs, Maxfield Sparrow, Zachariah Lewis, M. Remi Yergeau, Marcelle Ciampi, Anlor Davin, Greg Yates, and Cal Montgomery. Many thanks also to nonautistic people who were willing to be interviewed or who assisted with letting me read their studies including Katharine Zuckerman, David Mandell, Doug Leslie, Molly Doris-Pierce, Tatja Hirvikoski, Tara Cunningham, Alan Kriss, Arvind Venkat, the team at the Department of Health and Human Services, Robbie Kaplan, Karen Corby, Colton Callahan, Erica Milsom, Catherine Lhamon, Anna Krieger, C. J. Ereneta, Claudia Ng, Michael Kendrick, Julie Christensen, and so many others. Much thanks also to the staff and leadership at Square, the Love and Autism Conference, Autspace, Marshall University, the Democratic National Committee, Stanford University, and Vanderbilt University for facilitating my reporting when I visited your facilities either virtually or in person. There were also plenty of autistic and nonautistic people whom I interviewed who did not make the final draft to whom I am indebted. Your omission is in no way a reflection on the importance of what you do.

  In the time since, I have befriended many autistic people who were not listed in this roundup of people. Primary among them are Haley Moss, Steve Lieberman, Dylan Matthews, Andrew Solender, Zack Budryk, Noor Pervez, Cassandra Nelson, Carrie Hall, Judy Endow, and so many others. Knowing you taught me more about myself and to be kinder to myself, which hopefully allowed me to be better as a writer.

  The physical act of writing a book is an often-solitary venture filled with late nights by oneself. But the act of finishing a book cannot be done without a robust team and I had the best in the business. Heather Jackson was the person who saw the potential for this book and suggested I write a proposal. She whipped me into shape as she taught me about a completely different style of writing and helped me with negotiations but was also delicate where need be. I will always owe her for believing in this project. When we began to shop for publishers, the first person we met was Deb Brody from Houghton Mifflin Harcourt and I was immediately impressed and thought it would be great to work with them. Thankfully we did and Deb was a great partner and editor. Deb handed it off to Emma Peters in the last year of this project and it was the perfect match. Emma was a meticulous editor who massaged my sentences and yielded the best possible drafts from me for each chapter. I could not have had a better team. Let’s do this again sometime, yes?

  This book started with an idea that began with Tim Mak, who suggested I write a piece about autistic people in the Beltway and kept insisting I write it. Tim, this one’s for you. But the real adventure began when I proposed the original magazine piece to Richard Just at National Journal, who suggested it go from a chatty piece about DC insiders to an ambitious piece about why focusing on curing autistic people was misguided. Richard handled this with the utmost care and is now a dear friend. Much thanks also to my regular editors Matt Berman and Marina Koren, who let me take time off to write that piece as the Republican primary was taking off in 2015, back when we thought Donald Trump was little more than a joke candidate who would eventually crash and burn. The rest of the NJ magazine team of Molly Mirhashem, Amanda Cormier, Andie Coller (who came up with the title “I’m Not Broken,” which Heather later adapted for the book title), Sarah Smith, and Sacha Zimmerman turned it into something I never envisioned it could be. The entire National Journal team, from mentors like Bob Moser, Ben Pershing, Kristin Roberts, Tim Grieve, and Patrick Reis to colleagues like Rebecca Nelson, Kaveh Waddell, Nora Caplan-Bricker, Nora Kelly, Emma Roller, Dustin Volz, Dylan Scott, Emily Schultheis, Andrew McGill, Clare Foran, Tim Alberta, Shane Goldmacher, and Caroline Mimbs-Nyce, was incredible. I wish we could have done it forever and it ended differently.

  This project, from the magazine article to the proposal to the actual book, spanned across two presidential elections, one midterm election, and four jobs. So special thanks to the leadership, staff, and my colleagues at all of them, particularly John Helton, Ed Timms, Kris Viesselman, Jason Dick, Griffin Connolly, Bridget Bowman, Alex Gangitano, Gillian Roberts, Alex Roarty, Clyde McGrady, Chris Hale, Pablo Manriquez, Camila DeChalus, and the late Steve Komarow at Roll Call; Bob Cusack and Ian Swanson, Kyle Balluck, Tristan Lejune, Jesse Byrnes, Rachel Frazin, Brooke Siepel, Alicia Cohn, Tal Axelrod, Chris Mills Rodrigo, and so many others at the Hill, and Mike Madden, Jacob Brogan, Mary Jo Murphy, Sophia Nguyen, Steve Levingston, Carlos Lozada, Chris Shea, David Swerdlick, and Adam Kushner at the Washington Post. Adam, I still heard your voice telling me to substantiate things in the back of my head when I was writing this book and it made me better.

  I was first recruited to National Journal thanks to the mentorship of Ron Fournier, who wrote movingly about his son Tyler being on the spectrum. This book would not exist without him. Not only did he introduce me to Heather, he also dropped a book called NeuroTribes, written by a journalist at Wired magazine, on my desk and introduced me to Steve Komarow (God rest his soul), who recruited me to Roll Call after leaving National Journal. I owe him (and Tyler) more than I can ever say and hope to pay it forward.

  That journalist from Wired who wrote NeuroTribes, Steve Silberman, was also a massive influence on this book from the moment I interviewed him for the initial magazine piece to my time reading his book (as fate would have it, while writing the piece, I met him on a train to New York and we became fast friends). I am so thankful Steve undertook this project and I am grateful for his boosting of my work and writing. His book provided the intellectual foundation for this one and I hope that it is a house worthy of the sturdy rock that he laid down.

  The only people who know how painful writing a book can be sometimes are fellow authors, and so many were in my corner. So a special thanks to all of them who listened to me vent and fret about it and who gave useful encouragement or advice, not limited to Matt Lewis, Nicole Cliffe, Lyz Lenz, Jonathan Cohn, Tom LoBianco Patricia Affriol, Wesley Lowery, Jill Filipovic, Sarah Frier, Zach D. Carter, Dave Weigel, Adam Serwer (who suggested the Frederick Douglass speech that bookends the last chapter), and countless others. Their friendship and support were vital and necessary. In the same token, I want to thank those who took the time to read this book and give productive feedback. Simone Pathe was literally the first person to whom I said that I had signed a book deal since we were working together at Roll Call and I walked out of the phone room. Her critiques and edits of each chapter made them sharper and more pointed. Similarly, much thanks to Felicia Sonmez, Zach, and Daniel Wiser for all being willing to read the manuscript to let me know how this could be improved upon. I am one of the most fortunate writers and human beings I know.

  This book would not exist without the support of my dearest and oldest friends. JohnPaul Trotter has been my oldest friend for twenty years and he spent many a night on the phone with me when I was nervous about how this book would turn out. He is my brother in more ways than one. Tim Jewell and Geoff Sabir are dear partners whom I’ve known since high school. As an autistic person, I value having some degree of certainty and sameness in my life and that has been amply provided to me by many of the same friends I have had since college and many other friends I have picked up since then, primarily Maddy Will (who hired me at the Daily Tar Heel all those years ago when we were students at UNC), Joe Lenahan, Mary Tyler March, Claire Wi
lliams, Daniel Schere, Andy Willard, Sarah Brown, Russell Paige, Tara, Aaron, and Susanna Payne, Nicole, and Paige Comparato. In addition, thanks to Kristin Herbruck for providing an excellent headshot and plenty of cat videos when I was in the depths of writing.

  Last, this book is for all the autistic students who messaged in the years since I started writing about autism who want to get into journalism. I want you to know you too have a space in media and a story that deserves to be told. And you—yes, you—can write a book too. We need you, and I need you, and I know you will build upon the things I got right and correct where I fell short.

  Notes

  Introduction

  Donald Trump in 2016: Aaron Bycoffe, “Tracking Congress in the Age of Trump,” FiveThirtyEight.com, January 30, 2017, https://projects.fivethirtyeight.com/congress-trump-score/cheri-bustos/.

  but not flatly denying: Eric Garcia, “Democratic Young Guns Take Different Approach to Rebuilding Party,” Roll Call, October 11, 2017, https://www.rollcall.com/2017/10/11/democratic-young-guns-take-different-approach-to-rebuilding-party/.

  “Autistic Disturbances of Affective Contact”: Leo Kanner, “Autistic Disturbances of Affective Contact,” Journal of Psychopathology, Psychotherapy, Mental Hygiene, and Guidance of the Child (1943): 217–50, http://www.neurodiversity.com/library_kanner_1943.pdf.

  “there are very few really warm-hearted fathers and mothers”: Kanner, “Autistic Disturbances,” 250.

  “kept neatly in a refrigerator”: “Medicine: Frosted Children,” Time, April 26, 1948, http://content.time.com/time/subscriber/article/0,33009,798484,00.html.

  who further smeared parents: Charles Rycoft, “Lost Children,” New York Review of Books, May 4, 1967, https://www.nybooks.com/articles/1967/05/04/lost-children/.

  Kanner would later “acquit” parents: Steve Silberman, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (New York: Random House, 2016), 301.

  the dustbin of pseudoscience: John J. Pitney Jr., The Politics of Autism (Lanham, MD: Rowman and Littlefield, 2015), 20.

  the idea that mercury in vaccines causes autism: Silberman, NeuroTribes, 334.

  broadcast on CNN: “Jenny McCarthy’s Autism Fight,” CNN.com, April 8, 2008, archives.cnn.com/TRANSCRIPTS/0804/02/lkl.01.html.

  Trump, being Trump, doubled down: Ryan Teague Beckwith, “Read the Full Text of the Second Republican Debate,” Time, September 16 2015, time.com/4037239/second-republican-debate-transcript-cnn/.

  gave Trump a pass: Beckwith, “Read the Full Text.”

  a major essay: Eric Garcia, “I’m Not Broken,” Atlantic, December 4, 2015, www.theatlantic.com/politics/archive/2015/12/im-not-broken/446550/.

  who killed twenty-six people: Ella Torres, “Sandy Hook Shooting: Victims of Gun Violence Commemorate 7th Anniversary of Massacre,” ABC News, December 14, 2019, abcnews.go.com/US/sandy-hook-shooting-victims-gun-violence-commemorate-7th/story?id=67735556.

  jumped 130 percent: Bonnie Rochman, “Guilt by Association: Troubling Legacy of Sandy Hook May Be Backlash Against Children with Autism,” Time, December 19, 2012, healthland.time.com/2012/12/19/guilt-by-associationtroubling-legacy-of-sandy-hook-may-be-backlash-against-children-with-autism/.

  “on the autism scale”: Dylan Byers, “Scarborough: Holmes ‘on Autism Scale,’” Politico, July 23, 2012, www.politico.com/blogs/media/2012/07/scarborough-holmes-on-autism-scale-129779.

  Scarborough has a son: Drew Katchen, “Father Learns to Understand, Embrace His Son’s Asperger’s Syndrome,” MSNBC.com, December 4, 2012, www.msnbc.com/morning-joe/father-learns-understand-embrace-his-son-msna16548.

  He later apologized: Tommy Christopher, “Autistic Activist to Joe Scarborough: ‘I Am Not a Murderer,’” Mediaite.com, July 24, 2012, https://www.mediaite.com/tv/joe-scarborough-on-autism-remarks-perhaps-i-could-have-made-my-point-more-eloquently/.

  “Families Against Autistic Shooters”: Andrew Solomon, “Opinion: The Myth of the ‘Autistic Shooter,’” New York Times, October 12, 2015, www.nytimes.com/2015/10/12/opinion/the-myth-of-the-autistic-shooter.html.

  there is no evidence: David S. Im, “Template to Perpetrate,” Harvard Review of Psychiatry 24, no. 1 (2016): 14–35, www.ncbi.nlm.nih.gov/pmc/articles/PMC4710161/,10.1097/hrp.0000000000000087.

  autism and violent behavior: Santhana Gunasekaran and Eddie Chaplin, “Autism Spectrum Disorders and Offending,” Advances in Mental Health and Intellectual Disabilities 6, no. 6 (November 2012): 308–13, https://www.emerald.com/insight/content/doi/10.1108/20441281211285955/full/html.

  speculation and misunderstanding: Solomon, “The Myth of the ‘Autistic Shooter.’”

  autism alone is never the cause: Deanna Pan, “The Media’s Post-Newtown Autism Fail,” Mother Jones, December 22, 2012, www.motherjones.com/politics/2012/12/journalism-newtown-autistics/.

  75 percent of all research: Office of Autism Research Coordination, National Institute of Mental Health, Autistica, Canadian Institutes of Health Research, and Macquarie University, “2016 International Autism Spectrum Disorder Research Portfolio Analysis Report,” October 2019, 42, https://iacc.hhs.gov/publications/international-portfolio-analysis/2016/portfolio_analysis_2016.pdf.

  But autism likely can’t be cured: Mayo Clinic Staff, “Autism Spectrum Disorder—Diagnosis and Treatment—Mayo Clinic,” Mayo Clinic, January 6, 2018, www.mayoclinic.org/diseases-conditions/autism-spectrum-disorder/diagnosis-treatment/drc-20352934.

  An estimated one in fifty-four children: “Data & Statistics on Autism Spectrum Disorder,” Centers for Disease Control and Prevention, November 15, 2018, www.cdc.gov/ncbddd/autism/data.html.

  CDC study estimated that 2.2 percent of the adult population: Maggie Fox, “First US Study of Autism in Adults Estimates 2.2% Have Autism Spectrum Disorder,” CNN.com, May 11, 2020, www.cnn.com/2020/05/11/health/autism-adults-cdc-health/index.html.

  “overcoming”: Mike Suriani, “Penny Hardaway Praises Son Jayden as ‘Walking Miracle’ for Overcoming Autism,” WREG.com, February 5, 2020, wreg.com/news/penny-hardaway-praises-son-jayden-as-walking-miracle-for-overcoming-autism/.

  achieving great things: Amber Payne, “Autistic Brothers Walk Tall in Southern University Marching Band,” NBC News, November 29, 2015, www.nbcnews.com/news/nbcblk/autistic-brothers-walk-tall-southern-university-marching-band-n470631.

  Rebecca Cokley coined the term: Rebecca Cokley, “Reflections from an ADA Generation, Rebecca Cokley, TEDx University of Rochester,” YouTube, July 25, 2018, www.youtube.com/watch?v=nmDk6ZE3npY.

  autism spectrum disorders (ASD): Susan L. Hyman, “New DSM-5 Includes Changes to Autism Criteria,” AAP News, June 2013, https://www.aappublications.org/content/early/2013/06/04/aapnews.20130604-1.

  previously existed under various terms: Jessica Wright, “DSM-5 Redefines Autism,” Spectrum, May 21, 2013, https://www.spectrumnews.org/opinion/dsm-5-redefines-autism/.

  “extreme male brain” theory: Hannah Furfaro, “The Extreme Male Brain, Explained,” Spectrum News, May 1, 2019, https://www.spectrumnews.org/news/extreme-male-brain-explained/.

  1. “Don’t Let Me Be Misunderstood”

  came out as autistic: Ashley Goudeau, “State Rep. Briscoe Cain Opens Up About Being on the Autism Spectrum,” Kvue.com, April 25, 2019, https://www.kvue.com/article/news/politics/texas-legislature/state-rep-briscoe-cain-opens-up-about-being-on-the-autism-spectrum/269-bc913b8a-9d20-48c5-9e59-db80b3937745.

  Democrat Yuh-Line Niou won her seat: Leah Carroll, “If You Think Cuomo Is Going to Save New York, Meet Legislator Yuh-Line Niou Who Respectfully Disagrees,” Refinery29, May 4, 2020, https://www.refinery29.com/en-us/2020/05/9679194/yuh-line-niou-chinatown-nyc-coronavirus.

  that same year: Rory Mondshein, “We Put the ‘Able’ in ‘Disabled’: Local Politician, Yuh-Line Niou, on Autism Spectrum Disorder,” Political Student, June 6, 2016, http://thepoliticalstudent.com/2016/06/we-put-the-able-in-disabled-local-politician-yuh-line-niou-on-autism-spectrum-disorder/.