We're Not Broken

by Eric Garcia

  To be disabled is to constantly fear that any bad decision you make will cost you your autonomy, particularly when there’s a historical precedent for institutionalization. It makes your freedom all the more precarious. As Ruti Regan, an autistic rabbi and activist, has written, “The risk of failure is often higher than it is for people without disabilities.”

  But by the same token, Regan writes that when disabled people are not allowed to fail, we are not allowed to succeed. “Because for all people, success rests on a lot of failed attempts. And because disability typically involves uncertain abilities, we usually need to make a lot more failed attempts than nondisabled people as we figure it out.”

  It’s a sentiment Callahan echoes and tries to respect in his partnership with Julia: “I get to make dumb choices and have no one check them,” he told me. “If Julia wants to be like, ‘I don’t want to brush my teeth ever,’ and then gets a million cavities, that’s her choice. She can do it.”

  For those who have a limited perspective of what autistic people can do, it might be difficult to process that Bascom is a major figure in the disability rights movement. She is someone who has steered ASAN during a time when her community’s rights are at risk. Her life shows the futility of functioning labels; each autistic person has the capacity to function on a really high level along with trying to manage the difficulties the world constantly throws at us.

  In 2018, Bascom delivered a speech at the United Nations in New York City that received a positive reception. “I was really glad that I was able to do it. But what people don’t know is that I had a total meltdown trying to get through security at the UN. It was awful.” At the time, Callahan wasn’t there; she had a different support person. Bascom explained that during the meltdown she insulted somebody. By the end of it, her support person tried to get her out of there, and Bascom didn’t speak to the point that her talk had to be rescheduled.

  “The same person did both of those things—gave this speech that was very well received and also needed a lot of support in order to be able to do it,” Bascom said. “I think that people often think that if someone needs support, that means that they can’t do things. And that if someone is doing stuff, that means they don’t need support.”

  Still, there is this expectation for autistic people that life, liberty, and the pursuit of happiness are not rights but a diploma that they must earn. Around the same time as this UN speech, Bascom met a mother who was told her ten-year-old son needed to get his meltdowns “under control” or he wouldn’t have a normal life.

  “And I was like, ‘I’ve had two meltdowns in the last month.’ Absolutely, we need to support your son to find a better way to communicate before he gets so upset. No one likes having a meltdown,” Bascom said. “But also, he will keep having meltdowns for the rest of his life, and he can still have a good life. And so it’s hard to balance the consequences of talking about support needs.”

  Bascom wants people to know that it is okay for autistic people to need a lot of support and that it is okay for them not to live on their own. “You can still have a really good life. And the key to that part has to do with what support and services our government will provide and pay for, one hundred percent in order to access a lot of this. Or else you have to be very lucky and have an actual support network that can replicate that for you.” But having those supports comes down to whether the government will pay for them, and if it doesn’t, then people have to be either incredibly rich or lucky.

  Bascom told me her life is fulfilling because she is able to do things that make her happy, like spending time with her cat or doing a low-key activity like watching a movie or going to Whole Foods to get a scone. Too many times, she said, autistic people are told that if they like things that deviate from the norm, those things don’t count as fulfilling, particularly if they have significant support needs.

  “But a good, happy life looks like someone who’s in charge of their life and who’s connected to their community and who’s doing things that are important to them, not someone who is working a nine-to-five job and living on their own and meeting all the milestones,” she said.

  In summary, Bascom, the Rosas, Montgomery, and so many others demonstrate the many possibilities for autistic independence.

  5

  “Somebody Get Me a Doctor”

  * * *

  Health Care

  Autism’s years of being perceived as everything from a symptom of childhood schizophrenia to a condition caused by unloving mothers has led to people fundamentally misunderstand where it fits on the larger continuum of public health. It also means there has been both a booming industry of pseudo-cures and a misperception of what autistic people’s health needs are—should the focus be their autism or on helping them have holistically healthy lives?

  The question of what to do with disabled people, including autistic people, has been debated for decades. For years, disability was seen through the lens of the so-called medical model, wherein disability itself was the problem. By contrast, disability rights activists adopted the social model, which states that the problem isn’t disability but rather that society is not accessible to disabled people. In this view, the world needs to shift its paradigm about disability to become more welcoming to them. This view doesn’t diminish the needs of disabled people or the fact that disability can have complications. Rather, it recognizes the needs that disabled people have and works to give them services so they can live more fulfilling lives. At its core, the social model advances the civil rights of people who have certain developmental disadvantages but are not inferior because of them. They just need assistance to ensure equity.

  There are some similarities between the social model of disability and neurodiversity, but as disability rights advocate Aiyana Bailin wrote, “The neurodiversity approach is primarily a call to include and respect people whose brains work in atypical ways, regardless of their level of disability,” and it requires challenging assumptions of what’s normal. Bailin means that impairments that autistic people face “don’t change a person’s right to dignity, to privacy, and to as much self-determination as possible, whether that means choosing their career or choosing their clothes.”

  These contrasting models were on display in the early days of Ruth Christ Sullivan’s NSAC. As Steve Silberman’s NeuroTribes describes, Bernard Rimland was focused on promoting treatments to make autistic people more “socially acceptable,” whereas Sullivan often asked for a show of hands at meetings to see whether people wanted to focus more on finding a cure for autism or lobbying for more services. As Sullivan said, “Nearly all parents’ hands went up for services.” But decades after Sullivan’s and Rimland’s fights, there are still pushes to “fix” autistic people, and many still see the large number of autistic people as cause for alarm.

  In 2017, his first year as president, Donald Trump held a roundtable with educators and asked one principal, “So, what’s going on with autism? When you look at the tremendous increase, it’s really—it’s such an incredible—it’s really a horrible thing to watch, the tremendous amount of increase.”

  That same year, I was at an event on Capitol Hill writing a profile for Roll Call about Senator Cory Booker as he tried to beef up his progressive bona fides before he launched an ultimately doomed 2020 presidential campaign. I had already interacted with the New Jersey Democrat once before and had written a few articles about him. At times, his staff didn’t like my coverage of him, but I always tried to be fair, as I do with any Democrat or Republican that I cover.

  I wanted to catch Booker in person and ask him a few questions, but first I had to listen to his lecture about the economy and the Federal Reserve. I used to attend countless events like these on Capitol Hill, usually in a reception room in one of the Senate’s office buildings. The guests were economists, lobbyists, activists, and even some former members of Congress who just couldn’t seem to quit Washington even after they retired. I started my journalism career covering econo
mics, so I do find the subject fascinating, but occasionally I am reminded of what President Lyndon Johnson said on the topic: giving a speech about economics is like pissing down your leg—it feels hot to you but not to anyone else.

  In his speech, Booker discussed how corporate America had abandoned cities like Newark, New Jersey (where he was mayor before elected to Senate), and how that led to a spike of illnesses among children. “Cancer rates, autism rates, asthma rates in communities like mine, undermining the potential of my children, are all a result of the perversion of the free market,” he said.

  Booker’s words equating autism with cancer and asthma stuck with me. Whatever my thoughts about him, his exuberance and desire to inject what he called “unreasonable, irrational, impractical love” into American politics led me to believe he was speaking with the best of intentions. And Booker, a Stanford graduate and Rhodes Scholar, has a sharp mind. But Booker, like so many other well-meaning and intelligent policymakers, saw autism as the bad fruit born from a rotten tree of corporate greed. But while everyone wants asthma and cancer eliminated, not everyone wants autism eradicated, nor is there much evidence that it can be cured.

  Tunnel Vision: The Misguided Search for a Cure

  The focus on curing autism goes back to its initial recognition as a disorder in the United States. In the years following the publication of Leo Kanner’s research, autistic people were subjected to a variety of attempted treatments, from electroconvulsive therapy combined with subcoma insulin shocks and the drug metrazol, which caused convulsions, to psychotropic drugs like LSD. The idea that autism was the fault of parents caused significant damage to the way health-care professionals understood autistic people, setting a precedent in which doctors attempt to “cure” their symptoms rather than focusing on their overall well-being. As mentioned before, part of Bruno Bettelheim’s rationale for removing children from their parents was “thawing” them out from their icy home lives; he claimed that 92 percent of speaking children had “good” or “fair” outcomes and that the children classified as “good” could be considered “cured,” though his methods and claims were questionable, at best.

  The changed and broadened diagnostic criteria for autism in the 1980s and 1990s naturally meant that more people would be diagnosed as having it. Unfortunately, that led to many policymakers bemoaning an “epidemic.” Using the language of disease to describe autism led to a panicked fixation on a cure that still exists to this day.

  Though Autism Speaks officially removed the word cure from its mission statement in 2016, when the organization was founded in 2005, the goal was to eradicate autism. And Bob and Suzanne Wright’s mission was not unusual; many other parents and family-organized nonprofits have worked to find a cure or treatment for autism, including Bernard Rimland’s Autism Research Institute—with its Defeat Autism Now! network—and Cure Autism Now (CAN), founded by parent advocates Jonathan Shestack and Portia Iversen, which later merged with Autism Speaks.

  Before he died, in 2006, Bernard Rimland specifically said it was up to parents to ensure their children’s cure because doctors had an incentive to treat autism with drugs instead of curing them, which he believed led them to dismiss his chelation, nutritional therapies, and diets as quackery.

  “So once again, it is up to parents to lead the revolution—and we have not one but two battles to fight,” he wrote in Autism Advocate, the magazine for the society he founded, noting the first battle was to provide “safe, effective, biologically based treatments” for children and the second was to “create a safer and saner world for all of our children, and generations to come” by preventing exposures to PCBs, lead, mercury, pesticides, food dyes, food additives, and “nutrient-stripped food,” all of which he saw as “damaging the bodies and minds of generations.”

  Though many of these organizations were operating according to the popular rhetoric of the time, treating autism as something that must be cured can have dangerous consequences. Most notably, there are a slew of cottage industries offering supposed “cures” to parents of autistic children, each one varying in its level of dubiousness. For instance, while Andrew Wakefield’s ideas about vaccines have been discredited, his impact on clinicians remains. He popularized—though did not create—the idea of “leaky gut syndrome,” wherein vaccine particles prevented the breakdown of certain foods, like wheat and dairy, which supposedly passed through the walls of the gut, made their way into the brain, and caused autism (if this sounds absurd, it’s because it is). Similarly, Bernard Rimland’s Defeat Autism Now! warned against gluten and casein (a protein found in milk) in autistic children’s diets.

  But contemporary science refutes these sorts of diet-based treatment plans. In one study of sixty-six autistic children done at the University of Warsaw in Poland, researchers placed half the subjects on a gluten-free diet and the other half on a normal diet with gluten in at least one meal. After six months, the scholars definitively concluded there was no evidence that gluten consumption affected the symptoms of autistic children.

  In recent years, some parents have turned to an even darker “solution” for “fixing” their children: forcing them to drink chlorine dioxide, which is essentially bleach. Jim Humble, a former Scientologist, named the compound the Miracle Mineral Solution, or MMS, and sold it as a cure for a litany of different illnesses like AIDS, cancer, and diabetes. Eventually, Kerri Rivera, who was a real estate agent in Illinois with no medical training, began to experiment with MMS on her autistic son and sell it to others.

  The concept is horrifying, yet the practice is so widespread that the U.S. Food and Drug Administration had to publish a warning saying that MMS distributors were making “false—and dangerous—claims” and that people should avoid their phony solutions. It is certainly disturbing that parents would willingly give their children a dangerous chemical as a means to an end. And the list of bunk treatments goes on, among them placing kids in hyperbaric chambers, where people breathe pure oxygen in a highly pressurized environment, and chelation therapy, which removes mercury from the body (based on the mistaken idea that mercury in vaccines causes autism). It should be noted that there is scant evidence for the effectiveness of these treatments, and there is evidence they can be harmful. What’s even more disturbing than these treatments themselves is the logic at their core—that it is better to gamble with children’s health by giving them pseudoscientific treatments than to let them be autistic.

  When it comes to treatments for autism in the United States, perhaps the most intensely debated regimen is applied behavioral analysis (ABA). ABA is a type of therapy meant to help people improve basic skills such as communication, hygiene, and fine-motor dexterity using conditioning. It is so hotly contested that there is even a debate about whether health insurance should cover it.

  The University of California, Los Angeles, psychologist and professor Ole Ivar Lovaas pioneered the practice, in which he encouraged breaking down bigger skills into smaller, manageable increments. But Lovaas’s form of ABA was harsh; a 1965 profile of his treatment in Life magazine titled “Screams, Slaps and Love” featured researchers rewarding good behavior with food and affirmation and punishing bad behavior by slapping their autistic patients, screaming at them, and, in the most horrific example, administering electric jolts. Lovaas referred to autistic children as “little monsters,” in a 1974 Psychology Today interview and derided the way autistic children “rock themselves back and forth or spin around in a circle,” never considering that this could be a form of self-regulation.

  Eventually, Lovaas removed the punitive aversive methods from his program, and since then, ABA has come to be viewed as the “gold standard” for autism treatment in the United States. As of 2017, forty-six states and the District of Columbia require coverage of autism services, and many of them require insurers to cover ABA, according to the National Conference of State Legislatures.

  But many autistic advocates say ABA focuses on eradicating autistic behavior. Before Hari Srinivas
an began using a communication device to speak, he went through ABA. But Srinivasan said it did not succeed, since it was hard for him to give consistent receptive responses, given that he deals with sensory dysregulation (difficulty with sensory processing) and oral-motor apraxia (the inability to sequence oral movements of speech structure for nonspeech tasks). His body schema (which is essentially awareness of the orientation of one’s body) is poor, and he has obsessive-compulsive disorder and minimal fine-motor skills.

  “It was groundhog day as I was stuck in the same lessons for years which gets boring real fast,” he told me in an e-mail. “It is unfortunate that a lot of gatekeeping happened as my oral-motor ability was being looked at rather than cognitive ability so I was always pushed towards special ed classrooms, which were placeholders.”

  Still, there are some people, even autistic people, who swear by ABA, saying that the practice varies depending on who administers it. Amy Gravino, who is autistic, was inspired to pursue a master’s degree in ABA and now counsels students at Rutgers University in New Jersey.

  “I very much consider myself a moderate. In every other circle in the world, I’m a liberal,” she said. “But you put me in the autistic community, and I look like a raging conservative next to these people. It’s freaky.”