We're Not Broken

by Eric Garcia

  Gravino said she feels defensive when other autistic people call her a traitor. “I’m not here to invalidate what anybody feels or to dismiss what anybody has gone through or to diminish that,” she said. “I pursued my degree because I believed that I could bring a voice to the ABA world that was not perhaps represented in that world.”

  The debate about applied behavioral analysis ultimately comes down to how autistic people should be treated. Plenty of parents enroll their children in ABA, hoping to give them some modicum of hope for a normal life. But the parameters of what is considered a “normal” life are often defined by people who are not autistic. While there certainly should be a focus on stopping behaviors that cause harm to autistic people or that violate the personal space and safety of others, that impulse cannot come at the expense of things that make autistic people themselves. They must not be forced to suppress what makes them who they are.

  However, some autistic people do want to be cured. As Benjamin Alexander, an autistic person who cannot speak, told Spectrum News in an interview, for him autism is a “living hell” and “I want to be cured just like a cancer patient wants to be free of disease.”

  At this point, it is important to state that fighting for neurodiversity or celebrating disability does not mean that autistic people think that their condition is all good. They still recognize that it is a disability.

  Jill Escher, one of the cofounders of the National Council on Severe Autism, has two autistic sons who cannot speak, and she believes that autism is a “severe neurodevelopmental disability.” She said neurodiversity advocates trivialize the condition or “cherrypick naive, feel-good stories that portray autism falsely instead of grappling with the reality.” Escher added that if her kid is having a meltdown, taking his clothes off, or screaming, then “I want people to appreciate that his behavior comes out of a difference in his brain wiring. But do I think his behavior and wiring is natural? Absolutely not.”

  But embracing autism or accepting autistic people for who they are does not mean ignoring the legitimate challenges. Far from it. It simply means acknowledging that autistic people and all neurodivergent people deserve the same civil rights as others, which advocates like Sam Crane at ASAN have articulated. Often, they are the ones who want to include it in the larger movement for disability rights and request more accommodations. Many of them recognize that some autistic people have more impairments than others and want to find ways to help autistic people with comorbidities like epilepsy and gastrointestinal issues. Embracing autistic people and acknowledging their needs are not mutually exclusive ideas; they are complementary.

  For the most part, the increase in diagnoses has given autistic people something important: a community. Nancy Bagatell, the director of the University of North Carolina’s behavioral science and occupational therapy department, wrote that this community has fostered a discourse where autistic people are “considered worthy individuals in and of themselves, not people who need to be cured, altered, or isolated from the world” and that autism is “seen as a fundamental part of who they are, not just something that they have; that is, if their autism were eliminated, they would not be the same person.”

  Acceptance of autism doesn’t mean a denial of those impairments any more than accepting other disabilities means denying their impairments. One of the best descriptions of this dichotomy came from autistic author and advocate John Elder Robison.

  “Autism is a unique condition in medicine because it confers powerful disability and really extraordinary exceptionality,” he told me back in 2015. “Our duty in autism is not to cure but to relieve suffering and to maximize each person’s potential.”

  “I Just Didn’t Know That You Had to Play Social Games with Doctors”

  I arrived in Allison Park, Pennsylvania, a suburb of Pittsburgh, in February 2020, when snow layered the Allegheny Mountains. I was there to visit thirty-two-year-old Lydia Wayman. The week before, she had moved back in with her parents because her live-in nurse is retiring, though she still planned to continue working part-time to help with ordering supplies, which could be overwhelming for Lydia (prior to the COVID-19 pandemic, the nurse came two to three times a week). Lydia, Lydia’s mom, Nancy (who goes by the nickname “Brisky”), and I sat in their living room to talk about how difficult it was to have her needs met as an autistic person with chronic health issues. Lydia has autonomic dysfunction, which contributes to digestive issues; a vascular condition that causes her skin to turn red and is excruciatingly painful; and debilitating migraines.

  Brisky, who has short silver hair, now helps with Lydia’s care overnight, which is her worst time because her erythromelalgia flares prevent Lydia from getting up and handling some things herself, and standing and moving aggravates it. Nighttime is also when she has issues with her blood sugar, pump alarms, and autonomic dysfunction; her skin can take hours to cool down, and the ice packs in her cooling system need to be changed. A separate nurse comes by twice a week to draw labs and change dressings while her mom works as a personal care assistant.

  The way Lydia’s care is paid for further illustrates how navigating the health system can be tremendously frustrating for autistic people. Medicaid pays for her overnight nurse and her personal care assistant for a set number of hours per week. But her insurance, specifically Medicare, pays for the nurse who does her lab work and changes dressings.

  As we sat in her house, Lydia explained that she kept a backpack next to her that contained her IV. Lydia also has an ostomy bag and an insulin pump to manage her type 1 diabetes, and prior to that, she had a feeding tube for seven years.

  Lydia has always been autistic and has had diabetes since she was three, but her medical ordeals in the past decade show how ill-prepared the health-care system is to handle the needs of autistic people. Lydia struggled to navigate arcane medical processes and eventually landed in a nursing home for a little over a year.

  It all started in January 2012, when she began vomiting profusely.

  “I guess it started with my stomach, but my digestive tract is almost paralyzed. It doesn’t really work,” she told me. “So things just would sit in my stomach, basically, and not make it through, and I’d just throw up.”

  Wayman went to the emergency room four times between January and April of that year to be treated for dehydration. In March, she was diagnosed with gastroparesis, which means her stomach is incapable of emptying food. That November, Wayman discovered she had developed autonomic dysfunction, which prevents her from sweating.

  There is also her skin. When we met at her home, Lydia was wearing makeup, so her complexion was relatively pale and similar to that of her mother’s. But Lydia told me that her blood vessels stay dilated and showed me a picture on her tablet in which her skin was glaring red. Her ears, back, hands, and shoulders are also visibly red. The name for this condition is erythromelalgia, also known as “man on fire syndrome.”

  When Lydia first got sick, back in 2012, she was living in an apartment on her own thanks to aid from Pennsylvania’s Adult Autism Medicaid Waiver. But once she got sicker, her illness prevented her from participating in the requisite goal-building—such as grocery shopping, planning and using a schedule on a computer, attending church and Bible studies, and learning social cues—that she needed in order to continue receiving aid.

  “I got to participate in discussions about what the goals should be. I just didn’t always agree with how they got implemented,” Lydia told me. For instance, she was supposed to learn about social cues through watching television shows like Friends, which involved social scenarios she would likely never participate in. This led to Lydia losing her waiver. She applied for a physical disability waiver instead but was told that since her “primary” diagnosis was autism, she had to apply for the very waiver that she had already lost. Lydia said she fell into a “crack [that] isn’t supposed to exist”within the system.

  That fall through the crack landed Lydia in a nursing home for fifteen months.
Lydia said she ended up there because other options didn’t really exist where she lived in Pennsylvania; people needed to handle their own housing in the community and get waiver services or go to a facility. She said that housing supports existed only for people with significant mental illness or intellectual disabilities. Brisky said the facility Lydia went to was one of the only ones willing to accept her daughter.

  “They were one of the few, and they did the best they could, but that’s not really what they were set up for,” Brisky said of the institution where Lydia lived. “There is a place for people like Lydia that have medical conditions and they’re young people and they have chronic medical conditions, and they need support. I don’t know where it is.” In addition, prior to Lydia’s time at the nursing home, her parents were told not to get too involved in the process because they were supporting Lydia’s “bad” habits and that Lydia’s living with them would encourage her to stay “sick.” It was overwhelming for her parents, since they wanted to advocate for Lydia in a system where she needed help.

  “I just didn’t know that you had to play social games with doctors basically,” Lydia said.

  Eventually she left the nursing home, and after applying for the waiver a fourth time, she finally qualified. A woman from her county’s center for independent living helped her with the process.

  “So, every single phone call, form, she was with me through the whole entire process and she also meticulously followed up with the state,” Lydia added.

  Before her time in the nursing home, Lydia faced another obstacle—she said she had a primary care physician who doubted the severity of her illness. “She concluded that I was creating my symptoms to get attention, but I didn’t realize I was giving her that impression,” Lydia told me. Ironically, Lydia might not have been taken seriously because, as an autistic person, she was trying to follow the cues that neurotypical people gave her. “People always told me to stay positive, and I took that at face value.” Wayman was also told she was “too happy to be sick.” (In an almost cruel twist, once Wayman was in the nursing home and under supervision, it was clear she wasn’t faking anything.)

  Subsequently, her physician contacted her gastrointestinal doctor to warn him that Lydia was obsessed with getting sick; she said Lydia knew too much medical information.

  “For me, knowledge was a way to cope with the fear and uncertainty my doctors didn’t believe I was feeling,” she said.

  To be disabled, chronically ill, or autistic is to be constantly aware of your mind and your body and how the world limits them. Because of a lack of understanding from doctors, knowledge becomes a protective shield. Lydia said other autistic people she knows, including two of her best friends, have developed chronic medical conditions and agree that knowledge is the best way to protect themselves.

  “Because we [autistic people] rely so much on familiarity or routine that when something so fundamental changes, you’re so lost, and you’ve got to process it,” she told me. “Every little thing you do is now different. Every way that you learn to expect the world to be and your day to go and your causes and effects to happen is different. And so, you have to learn to cope with life in a whole new way, and it takes away your focus for a while.”

  Lydia later clarified that her experience was more complicated than just having been forced to deal with bad or mean doctors. It can be challenging for autistic people to communicate with their doctors successfully in a system that’s built with neurotypical patients in mind. She said that while her symptoms didn’t contradict each other, they appeared to be disconnected. Furthermore, Lydia’s sensory issues made it hard for her to articulate how she felt and communication disorders made it hard to explain what she felt. Once she had more testing, everything began to make sense.

  “My doctors did misunderstand my behavior, but I’m sure I was missing social cues that they were doubting me,” she said. “They knew I was autistic, so for me, the idea that my autistic traits could affect my medical care in that way wasn’t even a consideration.”

  Nowadays, when Lydia goes to the hospital, Brisky often goes with her, and the two work together to best accommodate Lydia’s needs (things like going to a quiet, dark place rather than a regular waiting room). This reduces sensory overload and can also help with her erythromelalgia to some extent, since her symptoms make it harder for her to answer questions or handle being touched. Sometimes, Lydia can just look at her mom, and Brisky will know what to say.

  “As an older person, you tend to put your foot down more,” Brisky said. Lydia’s descriptions of the hurdles autistic people face with health care resemble the predicaments that many face when asking for academic accommodations: they often put the onus on the autistic person to ask for them. In the case of the health-care system, autistic patients and their families must advocate for themselves, and individual doctors might not be empathetic to their needs. We should demand that doctors’ offices and hospitals be built with autistic people in mind.

  Doctors’ misconceptions about autistic people can have severe, life-threatening consequences. The National Council on Disability released a study in 2019 that chronicled the experiences of Paul Corby, who is autistic and has psychiatric disabilities. When his mother, Karen, reported Paul’s worsening physical condition, which included “vomiting, chest pains, and a persistent cough,” doctors attributed those symptoms to anxiety and failed to evaluate his heart. Paul’s mother said he was denied proper treatment because he carried a doll for comfort and failed to name all nineteen medications he took.

  Paul Corby’s story made national headlines, appearing in the Washington Post in 2017, when it was reported that he was ultimately denied a heart transplant because of his “psychiatric issues, autism, the complexity of the process and the unknown and unpredictable effect of steroids on behavior.” When I reached out to Karen Corby in July 2020, she told me he had still not received a transplant, though his condition is stable for now.

  Autistic people’s fate often depends on whether they can find a doctor who will be receptive to them. For Lydia, her emergency department care improved after she contacted Dr. Arvind Venkat, an emergency physician at Allegheny General Hospital. She had read comments of his about the challenges autistic people face in the emergency department. When the two of them spoke, he asked her what the biggest problems were for autistic patients, to which Wayman said sensory overload and communication.

  Lydia said that Venkat specifically intervened with the emergency department and spoke with both the medical and the nursing director. As a result, when Lydia must go in for a visit, she has fewer people tending to her at a time.

  “So, instead of a doctor, a resident, and three interns asking questions while one nurse is trying to start an IV while talking to another nurse and someone is asking me to sign, things happen one a time,” she explained. For instance, if a department is chaotic, an X-ray technician and lab people will come to her rather than leaving her sitting and waiting in the hallways.

  “They slow down, speak softer, and ask before they touch me. They ask a question and then wait for an answer,” Lydia said. They let Brisky stay and help when needed, but now they speak directly to Lydia, not around her. “They accommodate me but treat me like I am capable.”

  Since the intervention, Lydia said the difference in her ED care has been like “night and day,” and she means this literally, in a way—the hospital dims the lights for her.

  Dr. Arvind Venkat said that he received little training in medical school about handling autistic patients. Over time, as he started seeing more and more of them, he noticed that the emergency system was ill-prepared to handle them.

  “If you are purposely designing a place for people with ASD, you could not do worse. It is loud. There’s bright fluorescent lighting,” he said.

  To better aid autistic patients, Venkat has collaborated with Joann Migyanka at the Indiana University of Pennsylvania on ways to better educate doctors about autism. He also reached out to the
University of Pittsburgh and Indiana University of Pennsylvania to educate emergency medical service providers and doctors.

  “We’ve published a lot on that area about, not just the medical problems that can bring individuals with autism spectrum disorder to the emergency department, but also the special needs of these patients in dealing with what, by definition, is a crisis situation and can be extraordinarily challenging beyond what others may experience in the emergency department,” he said. Venkat noted that one of the challenges when it comes to autistic people is that despite the greater recognition of autism in the health-care community, most autistic individuals are still not getting care specialized clinic setting.

  “Even when doctors and nurses have some understanding of autism, there’s nothing [systemic] in place in these hospitals,” Lydia said. “We’re not teaching medical students,” adding that medical students need a social worker who is a liaison to people with disabilities because “there’s zilch in a hospital.”

  Lydia’s ordeal illustrates just how difficult it is for autistic people to get proper medical care but also that there’s hope if they can find a doctor who is willing to accommodate them.

  Complicating the problem is that America knows little about autistic adults. In May 2020, the Centers for Disease Control and Prevention released its first study on autism in adults, which estimated that 2.2 percent of adults were autistic. But the study was only an estimate and was the result of using the estimates of autistic children and then projecting that onto the adult population while also incorporating data on mortality. There are still not enough data about autistic people’s health concerns, which would be beneficial for autistic adults and for parents of young autistic children. For instance, what little research exists about autistic people’s life spans shows that autistic people do have health problems that need addressing. The National Institute of Neurological Disorders and Stroke notes that 20 to 30 percent of all autistic individuals will develop epilepsy by adulthood. Given the potential for sudden unexpected death in people with epilepsy, this is an area that requires more in-depth research.