by Eric Garcia
released new guidance on the settings rule: “CMS Issues New Guidance on State Implementation of Home- and Community-Based Services Regulation,” Centers for Medicare and Medicaid Services, March 22, 2019, https://www.cms.gov/newsroom/press-releases/cms-issues-new-guidance-state-implementation-home-and-community-based-services-regulation.
“not automatically presumed to have qualities of an institution”: Chris Traylor, “Frequently Asked Questions: HCBS Settings Regulation Implementation Heightened Scrutiny Reviews of Presumptively Institutional Settings,” Centers for Medicare and Medicaid Services, March 22, 2019, https://www.medicaid.gov/federal-policy-guidance/downloads/smd19001.pdf.
“often lack the flexibility needed”: “CMS Issues New Guidance,” Centers for Medicare and Medicaid Services.
calling it a victory for “choice”: “A Federal Policy Victory for Adults with Autism,” National Council on Severe Autism, March 25, 2019, https://www.ncsautism.org/blog/2019/3/24/qkyj2l69k3hgx9ex4xrydv8zo7dz3w.
which supporters describe: “Intentional or ‘Campus’ Communities for Adults with Autism and Developmental Disabilities,” Autism Society San Francisco Bay Area, 2020, https://www.sfautismsociety.org/list-of-intentional-communities.html.
nothing like the institutions of old: “Full Committee Meeting,” Interagency Autism Coordinating Committee, January 16, 2019, https://iacc.hhs.gov/meetings/iacc-meetings/2019/full-committee-meeting/january16/transcript_011619.pdf.
there is no data proving: Lutz, “Adults with Disabilities.”
“I think if someone thinks an intentional community”: Julia Bascom, interview with the author, 2020.
“designed so that people have no need to leave the campus”: Shannon Des Roches Rosa, “Autism and Adult Housing Choices: Separating Myths from Facts,” Thinking Person’s Guide to Autism, August 22, 2016, http://www.thinkingautismguide.com/2016/08/autism-and-adult-housing-choices.html.
“the same old people are working it”: Cal Montgomery, interview with the author, 2020.
the Rosa family’s insurance covers in-home services: Shannon Des Roches Rosa, interview with the author, 2020.
“Guardianship involves substituted decision-making”: Michael Kendrick, interview with the author, 2019.
deeply Republican Texas in 2015: “Supported Decision-Making Overview,” Disability Rights Texas, February 12, 2020.
followed by Delaware: “Supported Decision Making in Delaware,” Delaware Department of Social Services, 2018, https://www.dhss.delaware.gov/dhss/dsaapd/files/supported_decision_making_information.pdf.
states that have laws on their books include: Zachary Allen and Dari Pogach, “More States Pass Supported Decision-Making Agreement Laws,” American Bar Association, October 1, 2019, https://www.americanbar.org/groups/law_aging/publications/bifocal/vol-41/volume-41-issue-1/where-states-stand-on-supported-decision-making/.
Samantha Crane: Julia Bascom, interview with the author, 2020.
They weren’t able to get that bigger bill passed: Anna Krieger, interview with the author, 2019.
Money Follows the Person: “Money Follows the Person,” Centers for Medicare and Medicaid Services, 2020, https://www.medicaid.gov/medicaid/long-term-services-supports/money-follows-person/index.html.
which has caused a drop: H. Stephen Kaye and Joe Caldwell, “Short-Term Money Follows the Person Extensions Resulted in a Significant Drop in State Efforts to Transition People Out of Institutions,” Community Living Policy Center, Brandeis University, May 29, 2020, http://www.advancingstates.org/hcbs/article/short-term-money-follows-person-extensions-resulted-significant-drop-state-efforts.
“If you don’t have funding available to you”: Samantha Crane, correspondence with the author, 2019.
“the risk of failure”: Ruti Regan, “Uncertain Abilities and the Right to Fail,” January 18, 2016, https://www.realsocialskills.org/blog/uncertain-abilities-and-the-right-to-fail.
“I get to make dumb choices and have no one check them”: Colton Callahan, interview with the author, 2020.
I was really glad that I was able to do it: Julia Bascom, interview with the author, 2020.
“it’s hard to balance the consequences of talking about support needs”: Julia Bascom, interview with the author, 2020.
“looks like someone who’s in charge of their life”: Julia Bascom, interview with the author, 2020.
5. “Somebody Get Me a Doctor”
the so-called medical model: Sara Goering, “Rethinking Disability: The Social Model of Disability and Chronic Disease,” Current Review of Musculoskeletal Medicine 8, no. 2 (June 2015), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4596173/#CR2.
society is not accessible to disabled people: Aiyanna Bailin, “Clearing Up Some Misconceptions About Neurodiversity,” Scientific American, June 6, 2019, https://blogs.scientificamerican.com/observations/clearing-up-some-misconceptions-about-neurodiversity/.
“people whose brains work in atypical ways”: Bailin, “Clearing Up Some Misconceptions.”
“Nearly all parents’ hands went up for services”: Silberman, NeuroTribes, 304.
“When you look at the tremendous increase”: Michelle Ye Hee Lee, “Trump’s Claim That There’s ‘Tremendous Amount of Increase’ in Autism Cases,” Washington Post, February 16, 2017, https://www.washingtonpost.com/news/fact-checker/wp/2017/02/16/trumps-claim-that-theres-tremendous-amount-of-increase-in-autism-cases/.
writing a profile for Roll Call: Eric Garcia, “Booker Tacks Toward Democratic Party’s Base,” Roll Call, September 15, 2017, https://www.rollcall.com/2017/09/15/booker-tacks-toward-democratic-partys-base/.
like pissing down your leg: CQ Roll Call staff, “When the President of the United States Talks,” Roll Call, March 14, 2013, https://www.rollcall.com/2013/03/14/when-the-president-of-the-united-states-talks/.
“Cancer rates, autism rates, asthma rates”: Congressman John Conyers Jr., “Will President Trump Undo a Signature Civil Rights Movement Accomplishment,” Facebook, September 12, 2017, https://www.facebook.com/206947066849/videos/10154763272686850/.
“unreasonable, irrational, impractical love”: Franklin Foer, “Cory Booker’s Theory of Love,” Atlantic, December 17, 2018, https://www.theatlantic.com/politics/archive/2018/12/cory-booker-talks-about-love-and-eyes-presidential-run/578242/.
a Stanford graduate and Rhodes Scholar: Janell Ross, “Six Noteworthy Things About Cory Booker,”Washington Post, July 25, 2016, https://www.washingtonpost.com/news/the-fix/wp/2016/07/25/six-noteworthy-things-about-cory-booker/.
the drug metrazol: Silberman, NeuroTribes, 209.
psychotropic drugs like LSD: Jeff Sigafoos et al., “Flashback to the 1960s: LSD in the Treatment of Autism,” Developmental Neurorehabilitation 10, no. 1 (January–March 2007), https://pubmed.ncbi.nlm.nih.gov/17608329/.
was “thawing” them out: Grinker, Unstrange Minds, 80.
claimed that 92 percent of speaking children: Silberman, NeuroTribes, 207–8.
that more people would be diagnosed: Gernsbacher, Dawson, Goldsmith, “Three Reasons Not to Believe in an Autism Epidemic.”
officially removed the word cure: Dahl, “A Leading Autism Organization.”
Bernard Rimland’s Autism Research Institute: Jeffrey Baker, “Mercury, Vaccines, and Autism: One Controversy, Three Histories,” American Journal of Public Health 98, no. 2 (2007), https://ajph.aphapublications.org/doi/10.2105/AJPH.2007.113159.
Jonathan Shestack and Portia Iversen: Portia Iversen, “Autism Research and Advocacy Related Biosketch,” October 2018, https://portiaiversen.com/autism/.
“it is up to parents to lead the revolution”: Bernard Rimland, “Fighting for Our Children: Advocacy in the Age of Environmental Awareness,” Autism Advocate 45 (2006), https://www.as-az.org/wp-content/uploads/2020/05/environmental-health-issue.pdf.
“leaky gut syndrome”: Linda Steele, “‘It Is Not About the Science. It’s About Belief,’” Guardian, December 5, 2001, https://www.theguardian.com/education/2001/dec/05/medicalscience.familyandrelati
onships.
vaccine particles prevented the breakdown of certain foods: Steven Novella, “The Anti-Vaccination Movement,” Skeptical Inquirer (November/December 2007).
Rimland warned against gluten and casein: Silberman, Neurotribes, 334.
sixty-six autistic children: Anna Piwowarczyk et al., “Gluten-Free Diet in Children with Autism Spectrum Disorders: A Randomized, Controlled, Single-Blinded Trial,” Journal of Autism and Developmental Disorders 50 (October 2019): 482–90, https://link.springer.com/article/10.1007%2Fs10803-019-04266-9.
named the compound the Miracle Mineral Solution: Brandy Zadrozny, “Parents Are Poisoning Their Children with Bleach to ‘Cure’ Autism,” NBC News, May 21, 2019, https://www.nbcnews.com/tech/internet/moms-go-undercover-fight-fake-autism-cures-private-facebook-groups-n1007871.
“false—and dangerous—claims”: “Danger: Don’t Drink Miracle Mineral Solution or Similar Products,” U.S. Food and Drug Administration, August 12, 2019, https://www.fda.gov/consumers/consumer-updates/danger-dont-drink-miracle-mineral-solution-or-similar-products.
placing kids in hyperbaric chambers: Trine Tsouderos and Patricia Callahan, “On Shaky Ground with Alternative Treatments to Autism,” Los Angeles Times, December 7, 2009, https://www.latimes.com/archives/la-xpm-2009-dec-07-la-hew-autism-day-two7-2009dec07-story.html.
chelation therapy: Jay L. Hoecker, “Autism Treatment: Can Chelation Therapy Help?” Mayo Clinic, November 23, 2016, https://www.mayoclinic.org/diseases-conditions/autism-spectrum-disorder/expert-answers/autism-treatment/faq-20057933.
meant to help people improve basic skills: “Applied Behavior Analysis,” Psychology Today, 2020, https://www.psychologytoday.com/us/therapy-types/applied-behavior-analysis.
using conditioning: Silberman, NeuroTribes, 286.
breaking down bigger skills: Pitney, The Politics of Autism, 26.
rewarding good behavior with food: Don Moser, “Screams, Slaps and Love,” Life, 1965, http://neurodiversity.com/library_screams_1965.pdf.
“rock themselves back and forth”: Paul Chance, “O. Ivar Lovaas Interview with Paul Chance,” Psychology Today, January 1974, http://neurodiversity.com/library_chance_1974.pdf.
Lovaas removed the punitive aversive methods: Pitney, The Politics of Autism, 20.
“gold standard”: Pitney, The Politics of Autism, 57.
insurers to cover ABA: “Autism and Insurance Coverage/State Laws,” National Conference of State Legislatures, August 8, 2018, https://www.ncsl.org/research/health/autism-and-insurance-coverage-state-laws.aspx.
he went through ABA: Hari Srinivasan, correspondence with the author, 2020.
difficulty with sensory processing: Lisa Jo Rudy, “Autism and Sensory Overload,” Verywell Health, November 25, 2019, https://www.verywellhealth.com/autism-and-sensory-overload-259892.
“It was groundhog day as I was stuck in the same lessons”: Hari Srinivasan, correspondence with the author, 2020.
was inspired to pursue a master’s degree in ABA: Amy Gravino, interview with the author, 2020.
“I want to be cured”: Alisa Opar, “In Search of a Truce in the Autism Wars,” Spectrum News, April 24, 2019, https://www.spectrumnews.org/features/deep-dive/search-truce-autism-wars/.
“severe neurodevelopmental disability”: Moheb Costandi, “Against Neurodiversity,” Aeon, September 12, 2019, https://aeon.co/essays/why-the-neurodiversity-movement-has-become-harmful.
neurodivergent people deserve the same rights as others: Sara Luterman, “Autistic Advocates Clash with Autism Parents at Government Committee Meeting,” NOS, October 27, 2017, http://nosmag.org/parents-and-autistic-adults-clash-at-autism-committee-meeting-iacc-interagency-autism-coordinating-committee/.
some autistic people have more impairments: Bailin, “Clearing Up Some Misconceptions.”
gastrointestinal issues: Katherine Zeratsky, “Autism Spectrum Disorder and Digestive Symptoms,” Mayo Clinic, May 21, 2019, https://www.mayoclinic.org/diseases-conditions/autism-spectrum-disorder/expert-answers/autism-and-digestive-symptoms/faq-20322778.
“considered worthy individuals in and of themselves”: Nancy Bagatell, “From Cure to Community: Transforming Notions of Autism,” Journal for the Society for Psychological Anthropology, March 11, 2010, https://anthrosource.onlinelibrary.wiley.com/doi/epdf/10.1111/j.1548-1352.2009.01080.x.
“Our duty in autism is not to cure”: Garcia, “I’m Not Broken.”
she had moved back in with her parents: Lydia Wayman, interview with the author, 2020.
A separate nurse: Lydia Wayman, interview with the author, 2020.
The way Lydia’s care is paid for: Lydia Wayman, e-mail to the author, 2020.
“I guess it started with my stomach”: Lydia Wayman, interview with the author, 2020.
four times between January and April of that year: Lydia Wayman, interview with the author, 2019.
her blood vessels stay dilated: Lydia Wayman, interview with the author, 2020.
her illness prevented her from participating: Lydia Wayman, correspondence with the author, 2020.
“I just didn’t always agree with how they got implemented”: Lydia Wayman, correspondence with the author, 2020.
“primary” diagnosis was autism: Lydia Wayman, interview with the author, 2019.
“isn’t supposed to exist”: Lydia Wayman, interview with the author, 2019.
in a nursing home for fifteen months: Lydia Wayman, interview with the author, 2020.
mental illness or intellectual disabilities: Lydia Wayman, e-mail to the author, 2020.
“They were one of the few”: Nancy Wayman, interview with the author, 2020.
prior to Lydia’s time at the nursing home: Lydia Wayman, e-mail to the author, 2020.
“I just didn’t know that you had to play social games”: Lydia Wayman, interview with the author, 2020.
“she was with me through the whole entire process”: Lydia Wayman, interview with the author, 2019.
“but I didn’t realize I was giving her that impression”: Lydia Wayman, interview with the author, 2020.
she wasn’t faking anything: Lydia Wayman, e-mail to the author, 2020.
“you’re so lost, and you’ve got to process it”: Lydia Wayman, interview with the author, 2020.
bad or mean doctors: Lydia Wayman, e-mail to the author, 2020.
everything began to make sense: Lydia Wayman, e-mail to the author, 2020.
Lydia can just look at her mom: Lydia Wayman, interview with the author, 2020.
“vomiting, chest pains, and a persistent cough”: Organ Transplant Discrimination Against People with Disabilities, National Council on Disability, September 25, 2019, https://ncd.gov/sites/default/files/NCD_Organ_Transplant_508.pdf.
“psychiatric issues, autism”: Lenny Bernstein, “People with Autism, Intellectual Disabilities Fight Bias in Transplants,” Washington Post, March 4, 2017, https://www.washingtonpost.com/national/health-science/people-with-autism-intellectual-disabilities-fight-bias-in-transplants/2017/03/04/756ff5b8-feb2-11e6-8f41-ea6ed597e4ca_story.html.
though his condition is stable for now: Karen Corby, correspondence with the author, 2020.
her emergency department care improved after she contacted: Lydia Wayman, interview with the author, 2020.
“a doctor, a resident, and three interns”: Lydia Wayman, correspondence with the author, 2020.
“purposely designing a place for people with ASD”: Arvind Venkat, interview with the author, 2020.
“We’re not teaching medical students”: Lydia Wayman, interview with the author, 2020.
estimated that 2.2 percent of adults were autistic: Fox, “First US Study of Autism.”
that 20 to 30 percent of all autistic individuals: “Autism Spectrum Disorder Fact Sheet,” National Institute of Neurological Disorders and Stroke, 3–13, 2020, https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Autism-Spectrum-Disorder-Fact-Sheet.
sudden unexpected death in people with epilepsy: “SUDEP,” E
pilepsy Foundation, 2020, https://www.epilepsy.com/learn/early-death-and-sudep/sudep.
surveyed more than 27,000 autistic adults: Tatja Hirvikoski et al., “Premature Mortality in Autism Spectrum Disorder,” British Journal of Psychiatry 208, no. 3 (March 2016), https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/premature-mortality-in-autism-spectrum-disorder/4C9260DB64DFC29AF945D32D1C15E8F2.
followed by suicide: Ann Griswold, “Large Swedish Study Ties Autism to Early Death,” Spectrum News, December 11, 2015, https://www.spectrumnews.org/news/large-swedish-study-ties-autism-to-early-death/.
only 2 percent: 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, 41.
environment in autism’s development: Office of Autism Research Coordination, 2016 International Autism Spectrum Disorder, 25.
more than half of the money spent on autism: Office of Autism Research Coordination, 2016 International Autism Spectrum Disorder, 41.
“the clarity and precision of the language”: Christina Nicolaidis et al., “Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership,” Journal of General Internal Medicine 28, no. 6 (June 6, 2013), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3663938/.
“more likely to experience depression”: Chloe C. Hudson, Layla Hall, and Kate L. Harkness, “Prevalence of Depressive Disorders in Individuals with Autism Spectrum Disorder: A Meta-Analysis,” Journal of Abnormal Child Psychology 47, no. 1 (March 1, 2018), https://link.springer.com/article/10.1007%2Fs10802-018-0402-1.
Cal Montgomery noted: Cal Montgomery, interview with the author, 2019.
6. “Ain’t Talkin’ ’Bout Love”
some autistic kids didn’t speak: Chris Williams, interview with the author, 2020.