by Eric Garcia
Initially, few people participated in the group’s Slack Channel. But Ereneta said the group changed its focus to include the entire gamut of neurodiversity, not just autism, which has helped it grow.
“I think we’re getting more people who are stepping out and claiming either an autistic identity or talking about their struggles with anxiety or depression or attention,” he said. “We have a lot of activity around attention differences.”
One of the group’s members, Claudia Ng, who considers herself neurodivergent with ADHD traits, said the experience has been transformational for her since she long suspected she might have some attention issues but ignored it for most of her adulthood. But having Ereneta as a boss and identifying her differences and how they are beneficial led her to accept her differences.
“[Ereneta] made it clear to me that there are differences, and they’re not necessarily good or bad, but they’re just different, and that might influence the way that my teammates might work [and] would most likely be different than the way I work, and so for me it’s self-actualization,” Ng said. She added that some of her special skills include pattern recognition, which has been seen as a trait of some neurodivergent brains. Similarly, in the past, she would frequently lose interest in things, but the inverse was that she would find interest in a wide array of subjects all the time.
Generally, Williams said he found Square to be more welcoming and accepting of him than previous employers. In our first interview in 2019, Williams broke down his career into three distinct moments, starting with his time before working in finance, when he delivered pizzas, managed a university coffee shop, and waited tables. He fell into finance “by accident,” at E-Trade, where he climbed the corporate ladder before working for Morgan Stanley for a year and a half. But while Williams was successful in getting jobs, he struggled with the structure and management style within the company. One example that sticks out for Williams was when he spoke to a manager about professional growth, and the manager told Williams that he didn’t “eat the right way” with utensils. The manager said the company would not put Williams in front of clients for this reason.
Later, Williams’s wife had a series of complications with pregnancies and could not return to work, so their income was suddenly slashed by half. This led to credit complications, and he and his family eventually lost their house.
Williams found a job in consulting and moved to California, where he met his future manager at Square. There, Williams decided to disclose his autism, which he said has been liberating.
“I really felt a veil strip away, or a layer of difficulty strip away here [at Square],” he said. “Other places have been much more difficult, where places haven’t necessarily understood why I’ve communicated the way I have or why I’ve struggled the way I have.”
Tyneisha Harris, the technical recruiter at the company, said that she was interested in finding better ways to recruit neurodivergent people—for instance, by making sure proper language is used in job listings and training managers to be mindful about accommodations. At the same time, Ereneta said he wants to make sure Square is a good place for employees who are already there.
“I’m one of the voices saying let’s focus on the inclusion part, let’s focus on continuing to make Square a great place to work for the people we already have here who are different,” he told me.
“Yes, the recruiting pipeline, those practices, we have to adjust those,” Ereneta said. “But with all sort of diversity inclusion issues, if you only solve for the diversity recruiting part and people arrive and it’s not a company that supports you and your differences, that’s where a lot of my attention is.”
From Struggling Employee to Business Owner
When John Marble began working, he didn’t have supports or accommodations as an autistic employee, partly because he didn’t realize he was autistic and partly because they did not exist at the time. Autistic people were not seen as being able to work or thrive in workplace environments. That makes his ability to succeed in politics and government all the more remarkable, but it’s also why he is trying to focus on supporting autistic employees.
A year after I first met with him, Marble and I caught up to discuss his new company, Pivot Diversity. As Marble continued to consult with Neurodiversity Pathways, he said he inevitably heard from people who were worried about their autistic coworkers struggling. Employers also asked about the hiring process or their benefit packages. But when they asked Marble who addressed these needs, there was no one comprehensive organization.
Once again, much like the spark that it took for him to accept his autism, it took a friend telling Marble that he was an employment and workplace expert to give him the push to start his own company.
“I realized that the current existing autism work framework that exists, which is very well intentioned, is a lot to get a company to buy into,” Marble said. “It requires selling a company [on] what autism is, then the value of autistic workers—not to mention the value of diversity. Afterward, it requires learning how to adopt the program, sourcing and retraining people. All of this makes for a costly financial investment that discourages companies.
“Meanwhile, you’ve got autistic people in almost every company who are struggling, who are drowning, who are trying to make it somehow,” he said. “I realized that if we help the people in existing companies, and if we help their companies become more knowledgeable about autism in the workplace, that is a much lower bar to cross.”
He noticed that even though he worked with cohorts of talented autistic students while at Neurodiversity Pathways, they soon got weeded out for jobs in Silicon Valley because of screener calls. Marble wondered how to bypass this obstacle.
“That’s when I realized that, oh, if I started a company to help companies support their existing employees, then that starts to grow a culture within that company that’s going to be prepared for the young adults that I teach but also for a lot of other people,” he said. When a friend asked him what his biggest pie-in-the-sky goal was, he said he wanted to put autistic people at the center of programs meant for them, which meant putting an end to well-meaning people who made decisions based on incorrect assumptions.
Ultimately, Marble said he was confident that if he started a company centered on autistic people, it would be able to provide better solutions than ones coming from nonautistic people. It was through that discussion that Pivot Diversity was born.
“Pivot is doing this work in a way that helps companies support their neurodiverse employees, which builds a sense of inclusion and belonging for all employees, which I think is very dynamic, because we just don’t leave it to autistic employees,” Marble told me. “We might be the hardest case, but if you do these practices with autistic people, other populations in your company are going to thrive.”
The more I talk to and interview autistic people, the more I am reminded of an analogy that Marble often uses—he likens being autistic to being French.
“There’s millions of different ways to be French, and a gay fashion designer in Paris and a Catholic nun in Bordeaux are going to be radically different,” he said. “But they still understand each other as French.”
Marble notes that if you put autistic people in a room without any neurotypical people, their communication radically alters. I have noticed this in my own interactions with autistic people. We feel less fear and anxiety about stimming; we allow each other to ramble about our favorite subjects. We indulge each other and go back and forth, sometimes in conversation and sometimes literally rocking back and forth.
In the workplace, autistic people generally do not have this luxury of understanding. Some employers’ expectations are set too low; they don’t think we will be worth the effort expended on accommodations. Just as problematic, some employers set the bar impossibly high, expecting autistic workers to be their secret sauce. Rarely are we afforded the chance to be normal, to navigate workplace politics, to be ourselves and simply contribute as we
see fit. Like in so many different arenas, autistic people at work are constantly adjusting ourselves not to our own expectations but to the expectations of the outside world.
4
“Gimme Shelter”
* * *
Housing
Julia Bascom has advised presidential candidates and regularly advocates for autistic people’s rights on Capitol Hill. Some may think that means that Bascom, who serves as the executive director of the Autistic Self Advocacy Network in Washington, DC, is more high-functioning than Leo Rosa, an autistic person with limited speaking capacity who lives in the San Francisco Bay Area of California, but their stories showcase just how reductive and futile functioning labels really are.
Rosa, who was nineteen when I interviewed his mother, Shannon Des Roches Rosa, continues to live at home and requires 24/7 support. Some parents of autistic people with higher support needs say that the gap between Bascom’s and Rosa’s autism is as wide as the country between the two coasts they inhabit. There is a commonly held belief among the general public that because Bascom does not live with her parents and is capable of speech, she is high-functioning, and because Leo requires around-the-clock care, he is low-functioning.
But that would ignore the fact that Bascom herself is able to do her advocacy work because of the help of her support person, Colton Callahan, who has lived with her for roughly seven years. In the same respect, the fact Leo needs his family’s support most of the day does not diminish his right to pursue his happiness or mean that his life is any less valid than others’.
Bascom and Rosa prove how fickle the concept of functioning labels is and show how independence for autistic people can manifest itself in multiple ways. Unfortunately, just as “experts” in the twentieth century thought it best to keep autistic people in institutions, there are still people today who support this dated approach. This takes away autistic people’s opportunity to live within their community and with their families—something we know improves their overall well-being.
The living situations of autistic people before the twentieth century are largely unknown because their condition had not yet been documented. As Jack Pitney notes in his book The Politics of Autism, the inaugural issue of the Journal of Autism and Developmental Disorders, which was then called the Journal of Autism and Childhood Schizophrenia, opened with the line “One is entitled to wonder: What happened until recently to unfortunate children who, through no fault of man, were condemned to sufferings now belatedly recognized as psychotic ailments?”
The autistic people in the twentieth century who were misdiagnosed were relegated to institutions and state hospitals. David Mandell, a professor of psychiatry and pediatrics at the University of Pennsylvania, found that 10 percent of 141 residents at Norristown State Hospital outside Philadelphia had undiagnosed autism and all but two had been diagnosed as having “chronic undifferentiated schizophrenia.” Typically, when children received a diagnosis like this, their parents sent them to institutions, often even removing their pictures from the house. As Roy Richard Grinker noted in his book Unstrange Minds, Bruno Bettelheim said surveying kids for all hours of the day could teach him which treatments were most effective at “thawing out” children who had been frozen by their mother’s “black milk.”
After Bettelheim’s death, writer Richard Pollak wrote that Bettelheim subjected his children to strikes and whips with a belt. One former resident at his institution, Alida Jatich, compared him to a cult leader who bullied everyone from his students and residents to the children’s parents. Another, Ronald Angres, said Bettelheim “insulted people just in order to break any self-confidence they might have” and that he “thoroughly broke mine,” as he also used corporal punishment against the children at his institution, despite his preaching against it in public.
Autistic people were not any safer at other facilities, and scores of them were subjected to truly horrid conditions.
Cal Montgomery, who was fifty-two when I interviewed him, is old enough to remember the realities of these institutions. Montgomery’s father was a diplomat, which meant his family moved around frequently, and he spent only about one semester in two different American schools before he was written off as “emotionally disturbed.” Despite this, he was able to graduate from the University of Texas. Still, as an autistic person living in a society that didn’t yet fully understand his condition, Montgomery was institutionalized at Austin State Hospital in 1987.
“I did something really stupid in public and the police picked me up. They stood behind me with guns and said, ‘We can do this the easy way or the hard way.’ And I cheerfully signed myself in voluntarily,” he said with more than a hint of sarcasm.
Sadly, according to Montgomery, that would be “the best institution I’ve been in.” He was released after fifty-nine days. Soon after, he was institutionalized at McLean Hospital in Belmont, Massachusetts, for two years, with a series of short-term stays. Between 1989 and 1992, he was sent to Wild Acre Inns, first in Brookline, Massachusetts, and then in Cambridge. In 2017, Montgomery spent three short-term stays at Warren, Barr, and Kindred in Chicago.
“This second institution [in Massachusetts] literally, they tortured me,” he told me in an interview in 2019. He was referring specifically to their use of electroconvulsive therapy (ECT). “It was framed as an option, but it was not an option,” he added.
Montgomery said that finding appropriate housing for autistic people is much more difficult than it is for people with physical disabilities. “I personally don’t even have the language yet to talk about what a socially accessible environment would be like. So, it’s hard to advocate for it because I can’t explain it to anybody,” he said.
Many people on the spectrum were able to avoid the fate of being sent to institutions because they did not exist within the narrow confines of autism’s definition back then. However, these same people still had difficulty thriving because they lacked the proper support.
Samantha Crane, Julia Bascom’s colleague at the Autistic Self Advocacy Network, said one reason for this is the belief that autism is fundamentally different from other disabilities.
“Instead of learning from the experiences of other groups, a lot of parents and service providers are still trying to re-create models that other populations have already tried and found ineffective and overly restrictive,” Crane said.
A lot of the public’s misunderstandings about autism are thanks to fictionalized tropes. Historically, Hollywood has helped perpetuate narratives that infantilize autistic people. For example, the first time that many Americans were exposed to autism was through the 1988 movie Rain Man, in which Dustin Hoffman plays an autistic savant who goes on a road trip with his cold and calculating brother, played by Tom Cruise. At the end of the movie, Hoffman’s character, Raymond Babbitt, returns to the institution where he started.
But as Steve Silberman’s NeuroTribes pointed out, two of the autistic men who served as inspirations for Hoffman’s character, Joseph Sullivan—the son of Ruth Christ Sullivan—and Peter Guthrie, were not institutionalized. It was likely that they were able to develop the very skills—such as Peter Guthrie’s capacity to learn multiple languages and Joe Sullivan's near-photographic memory—that Hoffman portrayed because they lived around people who loved them.
In fact, the initial plan for the movie was to end it with Raymond Babbitt moving in with his brother, Charlie. This proved to be a step too far for autism “experts.” Bernard Rimland, the cofounder of the Autism Society of America, advised on the movie, and he was adamant that state homes were the only appropriate setting for autistic people. Darold Treffert, who was the world’s leading researcher on autism at the time, was also consulted for the movie. In his book Islands of Genius, he wrote that “the ‘happy ending’ in the original script is simply not realistic.”
This advice came as a great disappointment to the film’s original writer, Barry Morrow, who said, “I felt betrayed politically, but artistically, it was a tri
umph.”
Silberman told me in an interview that he was overcome with a sense of irony when he spoke to the people who made the movie. “‘Oh, why don’t we hear more from autistic adults from the fifties?’ They were in institutions, basically,” Silberman said.
Even though Rimland did not institutionalize his autistic son Mark, he excoriated attempts to integrate autistic people into the community. In the editor’s notebook page of Autism Research Review International from 1993, he used the term advozealots for people who supported “the handicapped” but were “in fact zealous advocates for their own Alice in Wonderland ideology”—aka people who, in his view, were too idealistic to act in the best interests of disabled people.
“Now they are destroying the institutions needed for the most severely retarded and autistic people,” Rimland wrote. “Under the banner of ‘empowerment’ and ‘human rights,’ and ‘full inclusion,’ they have also set out to destroy the special education system created by decades of advocacy and hard work on the part of the families of mentally handicapped children.”
At the heart of these debates is the question of who knows what is best for autistic people. For years, clinicians were the ones who urged parents to send their children to state hospitals and institutions, insisting this was in their best interests. But many of these institutions were rife with abuse or negligence. Parents’ subsequent push to remove their children was an effort to take back and reclaim their authority after years of being told they were the problem.