May 22, 2019
(As the AutismOne Conference gets going in Chicago today. It sometimes seems that efforts to increase autism awareness are no longer necessary. As the numbers continue to climb—it’s now estimated that 1 in every 36 American children has autism—how could there be anyone left who isn’t aware of autism? But the vanguard of the tidal wave of autism has only recently reached adulthood, where a number of new issues arise, issues that require renewed efforts toward awareness. James Williams, an adult with autism, prepared this statement for the Interagency Autism Coordinating Committee, IACC, hoping to shine some light on some difficult issues.)
Gaming the system?
Throughout history, many people in numerous governments have attempted to pass legislation that would undermine people who depend on government benefits. Many cultures “shame” people who rely on disability benefits, implying that they are “gaming the system.” Yet often those same cultures fail to seriously look at just how much their economic systems and their laws governing employment, affordable housing, and access to healthcare, therapies and services that a person with a disability may need force people with disabilities to acquire government benefits and services in order to survive. In fact, most people that are labeled within those societies as “gaming the system” for their own need or “lazy bums” actually aren’t gaming the system at all—they are doing what “the system” told them they had to do in order to access the services they need.
At the same time, in many other cultures what some Americans call “freeloading off the government” is considered a human right, and it is believed that it is the duty and responsibility of their governments to support people that cannot fend for themselves. In some cultures, people believe that a government’s right to tax its citizens implies a responsibility for that same government to provide for its citizens.
The following statements are based on my experiences as a person living with autism. Thus, before I continue my discussion, here’s a little bit more about myself. I spent much of my childhood and adolescence knowing I was on the autism spectrum. I was diagnosed with autism at the age of three, and my parents revealed to me that I had autism when I was eight. After learning I had autism, I became aware that the limitations I endured were due to my autism, and in adolescence, I learned how to advocate on behalf of myself in many settings. Everything I have succeeded in I have felt thankful for, and I have never expected success anywhere. I expect rejection, judgment, and dismissal and am thankful when I have not lost work or alienated somebody. I currently travel around the United States presenting on autism and other disabilities, and have been presenting on autism since I was eleven years old. I also have consulted at a wide variety of schools, public and private, have written several books about autism, and served on the leadership team for a summer camp for individuals with autism for four years.
I created this path for myself knowing that the traditional path of working for an employer or in an office was not going to work for me. In my travels, I have met a wide variety of adults with autism from all walks of life, of many races and cultures, and have heard many of their stories. Not all of my work efforts have been successful; I have experienced failure and even dismissal from several positions. However, based on my experiences and those of other individuals with autism I have met, I have concluded that there are multiple barriers to employment with autism and that these barriers need to be addressed in order for individuals with autism to succeed in the work world.
In addition, I have also observed how many people have to acquire disability benefits in order to obtain essential services and therapies in adulthood, as well as medical treatments necessary for their well-being. I have concluded that not a single one of them ever “gamed the system” to get what they needed.
Why is this the case?
Blocks to employment
My experiences have led me to the following conclusions regarding employment barriers that affect people with autism, as well as the reasons why many people with autism have to rely on government benefits to survive:
First, although people attend school in order to get a job and join the workforce, to many people with autism, school and work are two totally different environments with totally different expectations. While some individuals with autism struggle in a school setting, many individuals with autism thrive in school but do not thrive in the work world.
When I left high school, I discovered that although my high school education provided me with knowledge that helped me in my work, very few of the social rules and expectations that I learned to survive in school transferred to the adult and work world. Yet ironically, teachers often judged my social skills in order to predict my ability to function in the work world and adult world. Thus, students with autism often find that even with the proper knowledge and credentials to do a certain job, they still lack the social skills necessary to survive in that workplace.
Unwritten workplace social rules
Second, all workplaces have social rules, social expectations, and a social culture that people have to negotiate when holding down a job, yet people rarely mention that social culture when a person pursues a specific career or applies for a job. Academic and job training programs may teach the skills or lead to the degree required for a particular profession but most often do not cover the social and cultural expectations and skills required. Instead, for most people, workplace culture is something they learn instinctively without instruction when they start their career.
Third, many individuals with autism are not able to learn that culture due to their social deficits, and as a result, they leave jobs or are fired from jobs because they lack the social skills to function in their workplace culture, even if they are otherwise qualified to perform the job. I have learned from discussions with several disability attorneys that the Americans with Disabilities Act (the primary legislation in the U.S. governing the rights of people with disabilities, also known as the ADA) requires employers to provide physical accommodations in the workplace but does not require them to make social accommodations.
People with autism aren’t protected by the ADA
Under the ADA, employers are not required to accommodate a person’s disability if it renders them unable to meet the “essential functions” of a job. Many social issues that people with autism experience as a result of their autism can render them unable to meet the “essential functions” of a particular job in the eyes of an employer. Thus, many people with autism find that, regardless of their job performance, they are not legally protected in their workplaces when they make social mistakes, even if those social errors are due to their disability.
Finally, workplaces also have sensory inputs, and sometimes a person’s sensory issues can make them unable to function in a workplace. The sounds may be too loud or the lights may be too bright. I can share a personal example, as I myself had to adapt my career choices based on sensory issues. To this day fire drills traumatize me and comprise a major trigger for sensory overload. Due to my sensory sensitivities, when a fire alarm goes off, the loud noise triggers a shock that is so painful that my body feels as if it has been electrocuted or my finger has been jammed in an active electrical socket.
This sensory sensitivity impacted my career path. When I started high school, I initially planned to become a paraprofessional in a school setting, but I had to abandon that goal when I realized that I could not function in any workplace that held fire drills, such as a school. My body made it clear I could not tolerate scheduled fire drills for the rest of my adult life. Few job applications for paraprofessionals ever mention that a paraprofessional must function well in a school fire drill—it is just assumed that you are able to when applying for the job. When I realized that I would not be able to tolerate any employment setting that had legally mandated fire drills, I interviewed a fire marshal in my hometown, asking him which work environments required fire drills in my home state and which environments did not. He gave me an honest answer, and his response shaped my career path. We also had a nice talk about how to adapt fire drills to make them less painful for people with autism.
Interestingly, although the information the fire marshal gave me was the most important information I needed for career planning, no teacher or parent suggested I interview the marshal. It was something I decided to do on my own.
It is important to remember that while current laws say that people on disability benefits may engage in some form of employment without losing benefits, this is a simplification of the “fine print” of many of those laws. While a person on disability may not lose their full benefits, the law also says that, after a certain amount of income is earned, the recipient’s benefits are reduced—and in many cases, the reduction in benefits exceeds the income earned through employment.
In addition, when a previously unemployed person with autism finds a job in some parts of the United States, the government can force the individual to retroactively pay back benefits already received on the grounds that, since the person was likely employable all along, they didn’t “need” the amount they were given. This amounts to requiring people who are already at a severe disadvantage to pay a “fine” in order to get a job. If a person on disability benefits lives in housing designated for people on benefits or has health insurance based on their benefits, they can risk losing their home and/or their insurance if they earn too much through employment.
Thus, while the law states that people on disability benefits can work while maintaining benefits, the de facto reality is that it is often more beneficial to remain unemployed while on disability benefits than to pursue employment.
Adults with autism often require government help to live independently
As a consequence of everything mentioned above, one of the realities that I have seen when traveling is that most young adults I have met who live independently do so with support from SSI or disability, sometimes combined with some form of employment, but not by employment alone. Meanwhile, the majority of the jobs that my autistic friends can hold down are not “living-wage jobs”—that is, jobs that make enough income to enable them to be independent.
In one part of the country, where living costs are extremely high, adults with autism told me that they grew to automatically “assume” that if a person worked, even if they worked full-time, they lived at home, whereas a person on disability benefits likely lived on their own, since the vast majority of the adults with autism in their community who could afford to live independently were those on disability benefits (the amount a person in that area receives, monetarily and non-monetarily, is adjusted to reflect that higher cost of living).
Complex employment barriers for people with autism keep them in “the system”
To conclude, employment barriers are complex, and there are many issues that autistic people face when they pursue employment. In addition, many economic policies and regulations in many parts of the United States require people with autism to acquire disability benefits in order to access essential medical treatment, therapies, and services that they rely on in order to function throughout daily life. So when you hear of someone with autism who is unemployed, is underemployed, is on disability benefits, relies on government services, or is partaking in whatever employment they can function in while still relying on benefits and services, stop assuming they are just “gaming the system.” Acknowledge that there are established rules, regulations, economic practices, and laws that “the system” has created that have resulted in many people with autism relying on disability benefits and government services in order to survive, and that there are far more barriers that people with autism have when pursuing employment than people might initially think.
People with autism are not system gamers, nor are most of them lazy. They are people who genuinely rely on the benefits and services that the U.S. government promises people in need—and they represent a group genuinely “in need.” When you think someone’s gaming the system, you probably just don’t understand the situation they were put in that required them to access “the system” in the first place. Even those who have children are perceived as “welfare mothers” with “welfare babies,” ignoring the fact that many agencies do not provide assistance to people who are childless and require you to “have a child” to get their help even though many childless adults with autism are in need of many services that those agencies offer.
In the end, there are truly no people with autism “gaming the system.” There are just people with autism who had to turn to government benefits and welfare because “the system” failed to offer a place where they could support themselves without such benefits and services.
~ James Williams
For more by James Williams, click here.