by Eric Garcia
Unfortunately, the default for many autistic people is not much better, since they can wind up placed in sheltered workshops, which are environments where disabled employees are separated from the rest of the population except for a nondisabled supervisor. Furthermore, they are often paid below minimum wage. The Fair Labor Standards Act of 1938 established the cornerstones of American labor, like the federal minimum wage and overtime pay. President Franklin D. Roosevelt considered it some of the most important legislation he signed next to the Social Security Act. Section 14(c) of the law allowed employers to pay disabled people “whose earning or productive capacity is impaired by a physical or mental disability, including those relating to age or injury, for the work to be performed” below the federal minimum wage.
This was the case with Maxfield Sparrow. When Sparrow—who is transmasculine and for the purposes of this book will go by they and them—was living in Kentucky, they had trouble staying employed, so they went to a temp agency, then a government agency, and then to a facility that processed pieces of foam that were used for floor mats. When the pieces came out of the mold, they looked like puzzle pieces, and it was Sparrow’s job to take off the excess parts.
“This is a horrible job, and we couldn’t even sit down,” they told me. “We had to stand there and take these pieces off these things, and I wasn’t allowed to use the bathroom except during designated breaks.”
The place was sweltering hot, and the workers were not allowed to speak to one another. Ultimately, Sparrow couldn’t continue working there because of the conditions. “I couldn’t pay rent on what I was making, and so I couldn’t keep a place to live,” they said, noting that they were sleeping in a park because of this.
Thankfully, there has been a push from both sides of the political spectrum to get rid of subminimum-wage labor. For instance, Texas governor Greg Abbott, a Republican who uses a wheelchair after an accident, signed legislation championed by Republican legislators that required nonprofit organizations that employ disabled workers and had contracts with the state to pay them at least the minimum wage.
Still, sheltered workshops have many powerful defenders. During labor secretary Alex Acosta’s confirmation hearing in 2017, Senator Maggie Hassan, a Democrat from New Hampshire whose son Ben had cerebral palsy, asked Acosta what he thought of subminimum-wage labor for people with disabilities. Acosta said that while he supported the authority of states to end the practice, the issue was “difficult.” He said, “The very phrase ‘subminimum wage’ is a disrespectful phrase,” rather than calling the idea of disabled people not receiving a fair wage disrespectful. And similarly, the National Council on Severe Autism [NCSA] has said closing these workshops shuts off an opportunity for disabled people.
“The idea that everyone with autism can achieve competitive, minimum-wage employment given the proper training and supports is pervasive in the disability community,” the NCSA’s webpage said. The debate is another example of parent advocates’ interest (NCSA says it speaks for “the disabled who have no voice”) opposing the interests of autistic self-advocates. NCSA calls these sheltered workshops “vocational options,” although many times they are not the options of disabled or autistic people but the desired choice of parents.
Other groups, like VOR (formerly known as “Voice of the Retarded”), also vocally oppose eliminating subminimum-wage labor. The group calls the wages “specialized wages” that are “appropriate to their level of productivity” even as it admits the wages are lower than the federal minimum wage. Julia Bascom notes that these groups are often better at crafting compelling narratives for lawmakers, particularly during the Trump administration, which, compared with the Obama and even the George W. Bush administrations, lacked experience working with disability advocates.
“Despite being organized and loud, they’re also the minority opinion,” said Julie Christensen, the director of policy and advocacy for the Association for People Supporting Employment First (APSE), a group that supports disabled people finding full-time integrated employment. Conversely, the paradox of supporting integrated employment at or above the minimum wage is they are out living their lives and working, which makes it harder to have them coalesce and advocate for integrated employment.
“We don’t necessarily have ongoing contact with them. That’s the way you want it. They’re not reliant on the system,” Christensen said. This means it’s harder to organize people who have transferred to competitive and integrated employment in the same way as parents who support these workshops. Christensen says this does not mean their concerns aren’t legitimate, “but I think sometimes the volume makes it appear that it’s a bigger political force than it actually is.”
NCSA points to the fact that in states like Maine that have shuttered their programs, as many as two-thirds of people who worked in them remain unemployed. But the same case study NCSA cited—which was conducted through the George Washington University’s Milken School of Public Health’s Department of Health and Policy Management—notes that many people with intellectual and developmental disabilities who left sheltered workshops went into “community-based non-work services,” such as skills-building and socialization services, field excursions where they interacted with nondisabled people. The same study also noted that people working in integrated settings declined as well.
In the same respect, places like Vermont, which ended funding for new entrances for sheltered workshops and made heavy investments in supported employment, saw 80 percent of people who worked in sheltered workshops transition to supported employment, while the rest went into a nonemployment community-support systems. Similarly, Vermont has a 38 percent integrated-employment rate for people with intellectual and developmental disabilities, which is double the national average of 19 percent.
The NCSA website said that “wage-earning is not the primary purpose of these places,” implying that the there are other valuable benefits to participants, such as “Medicaid-funded supports, in-home assistance, residential care, behavioral support, respite, recreation, and other therapeutic services.”
A fear of a loss of Medicaid services is a legitimate concern. But as Ari Ne’eman, the founder of ASAN, wrote, in 1980, Congress passed the Social Security Disability Amendments Act, which included section 1619(b), which was made permanent in 1986. The program allowed recipients of SSI to continue to access Medicaid even when their income rose above the cutoff level.
Bascom says one obstacle to ending subminimum-wage labor is that many times, sheltered workshops let caregivers get out of the house and provide transportation to and from work, which is not always the case with customized or supported employment. “It could be, but that sort of ease isn’t always there.” One reason for this may be that subminimum-wage labor has been the default for more than seventy years. Bascom says adding these services to integrated and competitive employment needs to be made easier.
At the core, though, the arguments for subminimum wage still devalue the work of disabled people. While it is important to offer respite to caretakers and all these supports are valuable, none of these arguments deal with the fact that disabled and autistic people’s work has worth and is no less deserving of adequate compensation. There can and should be means of respite care and day programs that are fully funded and that are integrated into the community. But these arguments still ignore that autistic people—and disabled people as a whole—have as much worth as other people.
Public policy seems to be moving more toward supporting integrated employment. In 2016, both the Democratic and Republican Party platforms called for ending subminimum-wage labor (though they persisted through the Trump administration). In September 2020, the U.S. Commission on Civil Rights said that Congress should pass legislation to repeal the 14(c) with a phase-out period to enable transition to work. The commission also recommended that Congress spend more for supported-employment programs.
“Given the volume of concern and the experience that we’ve seen among some states
with exiting the program, we thought it was important to make sure that there is a phase out and that appropriate supports are in place,” Catherine Lhamon, the chairwoman of the USCCR, said. Lhamon said that her own view was that the most significant element to success was to believe that disabled people could succeed, but “we now operate a program that gives permission structure to not believe in the possibility for success.”
A big part of that was due to the fact that many of these structures were built when people didn’t properly understand autism or intellectual and developmental disabilities. The year Roosevelt signed the FLSA was the same year that Leo Kanner began his survey of eleven autistic children. And, of course, it will take even longer to change the paradigms we have now. The new knowledge over the years coincided with changed expectations. Neil Romano, who was appointed chairman of the National Council on Disability by President Donald Trump, testified during the USCCR’s deliberation that in the 1930s, paying disabled people pennies on the dollar was considered charity “because a lack of belief in people with disabilities was the game at that time.”
But autistic people, and all disabled people, do not need charity, which comes from a point of pity (though there is a place for it). Rather, they need justice, which is born out of the American ideal that people have inherent value. This is something the generations that came up around and after the passage of the ADA and IDEA take as a given, Christensen says.
“We have a generation of people with disabilities who have grown up with more options and they are not going to self-select into a segregated environment when their entire lives, their K-through-twelve schooling, has been based on an inclusion model,” she told me. “And so, while people won’t say it, there is writing on the wall and a recognition that these types of programs are going to die by attrition eventually anyway.”
The divide between parents and self-advocates about sheltered workshops and subminimum-wage labor is about what is most valuable. Parents tend to value the accoutrements of subminimum-wage labor—the respite care, the chance for their kids to get out of the house, and the accompanying Medicaid services—and they don’t want to lose it. But autistic people and self-advocates want to emphasize their labor is equal in value to nondisabled labor and so it deserves the same amount of compensation. Autistic people being paid below minimum wage sends a message that they can cosplay as workers and have small concessions, but their labor will always be considered subpar. The illusion of fairness will never be a substitute for the real thing.
Accommodations in the Office
Although on paper, I have definitely had a lucrative career, it has been laced with a sense of furtiveness. In college, I didn’t initially disclose I was autistic, and when I got my first job at MarketWatch, I decided not to disclose.
I was making good money, but I was covering financial transparency, a beat in which I had little to no experience. That meant that when news broke, I was overwhelmed, trying to simultaneously learn the jargon of the beat while filing my stories on time. I would frequently make errors because I was so focused on trying to get the little details right that I would make careless and easy mistakes, like not giving someone’s first name the first time I mentioned them.
I was frequently embarrassed, and I felt like I had let down the people who had hired me. Thankfully, my bosses Steve Goldstein and Jeremy Olshan, among others, were great. They took a risk hiring a kid who had no business doing that job, and they gave me chance after chance after chance. It was my fear of getting found out, my difficulty adapting to a high-pressure news organization, and my lack of knowledge that ultimately led me to burn out.
At one point, I was so afraid that they would fire me, I thought about killing myself before they could because I didn’t want to disgrace all of the people who had put their faith in me. This, combined with spinning out in my personal relationships, was a catalyst for me to begin therapy. (I will talk more about my mental health as an autistic person in subsequent chapters.)
Still, the pressure was so great that when National Journal offered me a position, I took it, even though I had been at MarketWatch for only four months. I felt ashamed to leave and felt like I’d failed, but I knew that job was unsustainable for me. Through no fault of my employer’s, I had burned out. Just like at Chaffey and UNC, it was only when I acknowledged my need for accommodations that I began to really succeed.
It was at National Journal that I became comfortable disclosing that I was autistic, and I even wrote the piece that became the launching point for this book about being an autistic reporter in Washington. I thrived at that job where I got to cover my first love, politics. Even though I had gotten a C in economics in college, I found myself enjoying writing about economic policy. I also enjoyed going to Capitol Hill and interviewing senators, some of whom wound up running for president. One of the moments that I knew I was where I was supposed to be was in 2015, when I was covering an event with Vice President Joe Biden and Senator Elizabeth Warren of Massachusetts at the Washington Hilton, the same hotel where my parents, my sister, and I had stayed when we visited Washington when I was ten.
I eventually left National Journal to work at Roll Call and then the Hill, mostly on breaking news, which, once again, brought its own pressures and fears of working in high-intensity jobs. The difference was, I could no longer hide the fact that I was disabled. This meant I could have a work environment that allowed me to succeed. It removed the tension and fear of being “found out” that many other autistic people have. Even at my job at the Washington Post, my then boss Adam Kushner asked at our first lunch if there was a way to accommodate me. Unfortunately, bosses like Adam are a luxury that many autistic people don’t have.
The lack of a pipeline to media jobs for autistic people means many suffer without the opportunities I have been given. Every few months, I get e-mails from autistic journalism students or interns at news outlets who ask for advice about how to break into the industry. I am more than happy to help them, but there is still a huge lack of neurodiversity in the communications field. For whatever reason, people don’t see media as a field autistic people would want to enter. A potential explanation is that journalism—with its constant demand of interacting with people socially through interviews and edits—is not seen as a typical autistic career.
But the desire and the demand exist, just as it likely exists in every sector. Autistic people work not just in technology or finance or even journalism but in every industry and at every type of income level. But because neurotypical people tend to think that autistic people are either unable to work or must be savants who understand computers better than they understand people, plenty of autistic people get ignored. The myopic and limited stereotypes often wind up hurting those autistic people who exist in every sector and lock out autistic people who want to enter various parts of the economy.
Retention and Inclusion
But even if autistic people are hired through these autism-at-work programs, they still desire the same thing any employee wants: inclusion. Ciampi, the recruiter mentioned earlier in this chapter, said that there is a big difference between diversity and inclusion and that many companies with autism-at-work programs are focused only on getting autistic people hired.
“Inclusion measures after they’re through the door are really essential. As well as before they’re through the door,” she said. Part of that includes tailoring the entire hiring and screening process with the input of neurodivergent people, modifying the interview process not just for autistic people but everyone, and including autistic people in mainstream types of hiring so they’re not being singled out from other employees.
“Let’s look at how we can put support systems in place for everyone and not make it about ‘How can we include autistics?’” Ciampi said. “Because as soon as we start saying, ‘How can we include autistics?,’ we’re singling them out [as being] in need of help, more than another minority or more than another human being.”
John Marble said t
he dichotomy for many employees at companies with autism-at-work programs is that they are either “crashing and burning” or “growing and leaving.”
“So that’s the pattern that I’ve seen is that these companies with their great incentives have gotten really good at hiring for their programs for their departments,” he said. “The established companies are able to fill their order of autistic people and they can help train them, onboard them. What I don’t see is a real deep understanding of autism from the autistic point of view.”
This isn’t to say that autistic people don’t have real needs. But it is important to recognize that everyone has some sort of need. “If we can address all those issues, and then put in place things that help the whole workforce, such as handbooks, and procedures and policies that reflect inclusion for everyone,” Ciampi said. This could be as simple as having monthly meetings with no agenda except to talk about improving the workplace, noting that one of the primary issues all employees value is having a sense of belonging in their job.
“That is inclusion. So, let’s look at, how do we build a sense of belonging? And start from a very broad focus, and then go down narrow,” Ciampi said.
One company that is working on becoming more inclusive of autistic employees is Square, the financial services and mobile-payment company. That began when Chris “C. J.” Ereneta, who has an autistic son, wore a shirt supporting neurodiversity to work. The shirt attracted the attention of Chris Williams, who is autistic and married to an autistic woman with whom he has autistic children (more on the Williams family later). Square has several employee resource groups (ERGs) for different identities, so Ereneta, Williams, and a third colleague, Mary Overbee, came up with the idea to create one for neurodiversity.