Two Autistic Perspectives on the Workforce:
An Undiagnosed Female Ivy League Graduate and a Male Author and Presenter with Autism
By Rachel Silverman and James Williams
Rachel Silverman: Female Ivy League Graduate
I graduated from an Ivy League college in 1997. Not knowing I was autistic, I planned to pursue a standard neurotypical career. My life plan was based on the illusion that the full range of mainstream career options were available to me. I thought I was choosing between law, investment banking, consulting, business, and international relations / academia.
Ironically, I instinctively planned to pursue careers that are considered appropriate for autistic people. My original career goal was to pursue an academic career in my special interest of international relations. Sadly, my plan was derailed by a combination of covert anti-Semitism and undiagnosed autism which undermined my relationships with my professors.
My subsequent attempt to pursue a business career failed for two reasons. First, I didn’t realize that a business career required a high degree of social competence. Second, I didn’t know that I was autistic and hence lacked the social skills necessary to function successfully in business.
As a result, I went on 60 interviews for business jobs in my senior year of college and didn’t reach the second round of a single interview.
I graduated college without a job and felt completely devastated, isolated, and abandoned.
Meanwhile, I watched my Ivy League peers move on to consulting jobs at Boston Consulting Group and investment banking careers at Goldman Sachs. Within 6 to 8 years, they had earned their Harvard MBA’s and were firmly established in corporate executive positions with secure six-figure incomes. I was the only one of my Ivy League peers who was forcibly excluded from the workforce and subjected to chronic unemployment, poverty, and repeated job loss.
By 2008, after a 12 year nightmare in the business and accounting worlds, I finally realized I could not hold an office job. It would take me another two years to discover I was autistic through my own research and another 3 years to seek and obtain an official autism diagnosis from a psychiatrist.
The longer my nightmare lasted, the more that people began to give up on me. And once I gave up on working in an office, people began to make a shocking suggestion to me. They repeatedly pressured me to go on SSI. For me, an Ivy League graduate, the mere idea that I should give up on working and accept any form of government assistance was outrageous and totally unacceptable. And I knew instinctively that people were lying to me when they told me it was a temporary solution until I could get on my feet. Realizing that once you get on welfare it is very difficult to escape the grasp of governmental economic control, I firmly rejected the recommendation to go on SSI.
I am perfectly healthy, educated, qualified, and capable of working. My language skills include full fluency in Spanish and intermediate reading proficiency in Russian. I have a masters degree in taxation. My work experience includes publishing a newsletter on the Latin American Internet industry and finding successful stock and real estate investments. I want to work and earn a living with dignity like the rest of my Ivy League peers. I don’t need or want a six-figure income, particularly since I am childless and not interested in motherhood. But I know that I don’t belong on welfare and that I deserve to be financially self-sufficient.
The irony is that once I gave up on the office-based workforce, I became the object of two intense campaigns to pressure me to return to office jobs. In 2011, shortly after I discovered my autism but before I obtained my official diagnosis, I explained to my professors in international relations that I could not handle the social demands of a standard office-based career in this field. I asked them to help me find a way to pursue a career in my special interest on a part-time freelance basis that was comfortable for me.
But this profession is structured in a rigid fashion so that you either work full-time in an office-based institutional capacity, or you can’t make even a part-time living in the field. And so they refused to accommodate me and instead pressured me to return to the standard career paths in this profession. They wanted me to earn a PhD and then either work as a university professor or an analyst at the Defense Department or State Department. Since these options were totally unacceptable to me, I chose to leave the field and gave up on my special interest and deepest passion.
Once I got my official autism diagnosis, then I was pressured by the autism professionals and job developers to return to an office job. I thought that autism professionals and job developers would understand the reasons why many autistic people can’t function socially in an office. I also expected them to be sensitive to the emotional trauma that I suffered as a result of repeated rejection in interviews and job losses over a 12 year period. But they were determined to force me into an office job at any cost. And once I made it clear to them that I wanted to work from home and was not interested in office-based employment, they refused to make any effort to help me find work.
My story illustrates the dangers of leaving a highly qualified autistic woman undiagnosed. Not knowing I was autistic meant I was deprived of the opportunity to plan for my future. I was planning my life without a full deck of cards. If I had known I was autistic, I would have changed my entire career plan to accommodate this reality. Instead of studying international relations, I would have become fluent in Korean or Japanese and also studied nature photography. Such planning would have allowed me to become financially self-sufficient much sooner and to avoid an unnecessary 17 year career nightmare.
James and I have both reflected upon the lack of a correlation between education levels and career outcomes for people with disabilities. I believe that college is highly suitable for autistic people in two situations: if they are studying computer science or a similar technical field and if they are attending a college which specializes in serving autistic students. In other cases, autistic teens and their parents need to think more carefully about whether or not attending college will provide meaningful career opportunities for their children. While in high school, autistic teens should investigate the social and sensory requirements of their prospective careers prior to deciding about college attendance. In addition, wherever possible, students should also pursue paid internships in their chosen fields prior to attending college. These steps will give autistic students and their families the information and resources they need to make an effective decision about college.
I am angry with society for blocking me from holding living wage jobs in my fields of interest such as international relations, business, and accounting. I believe that society treated me unfairly and should have explained to me earlier that these jobs had heavy social requirements that I could not meet. I wasted at least 12 years of my life trying to pursue careers for which I never had the social qualifications. I also find it upsetting that society treated my intellect as irrelevant and worthless because of my social differences. I wish that society had found a way to accommodate my social differences rather than destroying me because of them.
James has dramatically raised my awareness about the conditions of autistic people in several areas. Sensory sensitivities have never interfered with my career planning, so I did not realize that many autistic people cannot pursue specific career paths because they contain unacceptable sensory requirements. James explained to me that he had to give up his dream of becoming a teacher’s aide because he becomes physically ill during fire drills which are part of life in a school system. I now understand that sensory issues substantially limit the range of employment options available to many autistic people.
James also helped me to realize that many autistic people rely upon welfare as their primary form of economic support because they have crippling medical conditions that do not allow them to work. In addition, in many cases they depend upon Medicaid to pay for their medical care and cannot afford to work full-time because it would cause them to lose their medical benefits through Medicaid. Prior to speaking with James, I thought that most autistic people were in the same position as me: wanting to work and being physically healthy enough to work but being blocked from living wage employment due to their social deficits. Now I realize the picture is not so simple.
I feel great compassion for autistic people who cannot work due to severe medical conditions. I agree with James that we should find ways to encourage employers to accommodate autistic employees who must miss work due to medical conditions. Like many autistic people, victims and survivors of domestic violence and also individuals with psychiatric disabilities such as PTSD also must miss work for medical reasons and often end up losing their jobs as a result.
He made the following powerful statement that I realize applies to me: Therefore, a living wage job for a person without autism may not necessarily be a living wage job for a person with autism. I know that I ended up on several psychiatric medications for many years as a result of the trauma of being systematically excluded from the workforce due to my undiagnosed autism. As a result, when I was working, the cost of my health insurance doubled. After I lost my job, I simply was denied health insurance coverage due to pre-existing conditions.
For me the most troubling aspect of James’ presentation was the part where he explained how most of his autistic friends are forced to depend upon welfare and not employment as their primary form of economic support. I personally find the idea of welfare so repulsive that I chose to remain under the roof of my psychologically abusive parents for many years rather than to go on welfare. I believe that society has imposed the condition of welfare upon most autistic people because it is determined to block us from becoming financially self-sufficient. Society seeks to control and suppress us financially, emotionally, and psychologically by inflicting welfare upon us.
I find it completely unacceptable that most autistic people are stuck on welfare because society will not allow us to support ourselves. In particular, I believe that every college-educated autistic person who ends up on welfare represents a preventable tragedy. I am determined to speak out against this injustice. My personal goal is to become financially self-sufficient. In addition, the purpose of my work is to empower as many autistic people as possible to escape the trap of welfare and become economically independent.
Finally, James and I reflected together upon the fact that joining the autism industry represents an outstanding opportunity for many autistic people to become financially self-sufficient. I know that as soon as I received my autism diagnosis, the autism industry began recruiting me. Since joining the autism industry four months ago, I have found many exciting opportunities. I have had two articles accepted for publication in major autism magazines and submitted several others. I am working on a book on self-employment and work from home options for autistic adults which is designed to empower autistic adults to reach their dreams of financially self-sufficiency.
I have not yet become financially self-sufficient, but I know I have found the right field of professional endeavor. I recently accepted a position as an adjunct instructor with the Marino Campus. I am excited about this opportunity for personal and professional growth. I am looking forward to making a contribution to this organization and to the autism world as a whole. For the first time in my professional life, I have found a place where my intellectual talent is recognized, respected, appreciated, and encouraged. I feel inspired every day by the opportunities I am finding and the people I am meeting in this career.
James told me that the autism industry is systematically recruiting talented people like me to join the field. He said the autism industry realizes that employers are intentionally refusing to hire autistic people for living wage jobs due to our social deficits. And so the autism industry is trying to provide an alternative form of employment for autistic adults like me who are blocked from participating in the mainstream neurotypical job world.
He also suggested that autistic adults can earn income from the autism industry in two easy steps. First, they develop a book, artwork, jewelry, photography, or other salable product. Then they can rent space as exhibitors at autism and disability conferences for free or low cost. They can sell their products at these conferences and earn income in this fashion. This business idea represents a simple form of self-employment that can allow autistic people to bypass the mainstream job system and become partially or fully self-sufficient. I think that unemployed autistic adults should consider joining the autism industry on a part-time or full-time basis.
James Williams: Male Author and Presenter with Autism
[Author’s note: The names of all individuals mentioned in this section of the article have been changed to protect their privacy. In addition, person-first language is also used frequently in this article. I acknowledge that some individuals with autism are offended by person-first language. However, I am using person-first language in this article not to offend individuals with autism but to make the article more readable to professionals who can benefit from reading this article who have been trained to use person-first language. Ultimately, I believe that in the end, people should address people with autism the way they desire to be addressed to, and that each individual desire’s differences in how they want to be addressed should be respected, whatever that may be.]
Unlike my co-author, 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.
I also never spent much time wondering what I wanted to do when I grew up. I had a primary dream—to become an author and help other people with ASD when I grew up. I also never expected to be able to live independently in adulthood, even though countless teachers in my life tried to mislead me into thinking I could magically live independently with the proper skills out of high school. Rather, I worked with my parents to prepare for the possibility that I would live with them until they passed, and we worked together to make that work without us “destroying” each other in the process. I also decided not to marry or have children after witnessing several of my friends with autism cope with bad relationships and traumatic pregnancies.
At the same time, I also decided not to attend college. This decision was made in high school, since I was already working my dream job—writing and presenting about autism—work that I decided to continue outside of high school. Why give up the work I love to attend college if I already was pursuing my dream? In addition, I took (and paid to take) community college classes while in high school to see what college classes were like, and discovered that although I performed well in them academically, I did not personally feel comfortable in the college environment socially. I felt happier pursuing the work I had created for myself.
I have nothing against those who choose to attend college or graduate school, and have many friends with autism who are currently in college. I support their choice wholeheartedly, and we all have the right to make our own choices in life. However, I believe that college is a choice that should be made carefully, and should reflect the career path of the person with autism. It is my opinion that college should be chosen based on whether or not the person wants to pursue a career that requires college, rather than just to go to college, unless that person or that person’s family can afford to pay for college. In my case, my family was not able to afford to pay for me to go to college, and I didn’t feel comfortable going into debt or taking out student loans to pay for college, similar to Rachel’s feelings about receiving welfare checks.
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.
Today, in my mid-twenties, I currently travel around the United States presenting on autism and other disabilities, and have been presenting since I was eleven years old. I also have consulted at a wide variety of schools, public and private, have written two children’s novels about autism, and served on the leadership team for a summer camp for individuals with autism for 4 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, and of many races and cultures, and have heard many of their stories. Based on my own personal experiences, and the experiences of the 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.
First, people need to understand that 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. Many individuals with autism, such as my co-author, thrived in school but did not thrive in the work world. When I left high school, I discovered that although my high school education gave me knowledge that helped me in my work, very few of the social rules and expectations that I needed to survive in school transferred into the adult and work world. Yet ironically, teachers would often judge my social skills in high school to predict my ability to function in the work world and adult world. And students with autism often find that even with the proper credentials for certain jobs, they still lack the social skills necessary to survive in that workplace.
Second, many indirect workplace requirements or indirect working conditions exist in any given workplace or career field that are not always discussed when people with autism pursue a job or career, such as social expectations in a work setting. 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 and applies for a job. At the same time, academic programs and job training programs may teach the skills or lead to a degree required for a job, but often do not cover the social requirements expected on the job that a person is receiving training for completing a degree for. Instead, for most people, that culture is something they learn instinctively without instruction, or when they start their career and pursue it.
However, many individuals with autism are not able to learn that culture due to their social deficits, and as a result, they have had to leave jobs or have been fired from jobs because they lacked the social skills to function in the social culture of their workplace, even if they were qualified academically and had the skills to perform the job. Some individuals with autism with advanced degrees find themselves working high school level work because of these limitations. Researcher Brenda Smith Myles, in many of her presentations, tells a story of a person with Asperger syndrome who has a doctoral degree in biology but currently shelves books at a library, unable to succeed as a biologist due to social limitations.
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 in a workplace or the lights may be too bright. I myself created my work plan based on sensory issues. To this day fire drills traumatize me, and fire drills comprise one of my major triggers for sensory overload. When I endure a fire drill, the loud noise is painful and my body feels as if I have been electrocuted due to my hearing sensitivities. I had a dream in adolescence to become a paraprofessional in a school setting, but abandoned it when I realized that I could not function in a workplace with fire drills, such as a school. And I noticed that no 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.
Eventually, I realized that if I was going to survive in a workplace, it could not be a workplace that included fire drills. Therefore, 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.
Third, health barriers to employment exist that people are not always aware of. It is believed that autism strictly refers to a mental disorder, but new research has shown that this is not the case. Dr. Jeff Bradstreet, founder of the Bradstreet Wellness Center, has done extensive research that suggests that autism has just as many physical symptoms as mental symptoms, and that autism is just as much a physical disorder as it is a mental disorder. He has attributed many behavioral issues to health issues that he can only find in the bodies of individuals with autism. People with autism have many health issues that others do not always understand. This is a barrier to employment since people with autism are sometimes frequently ill, sometimes resulting in them missing work.
Sometimes these health issues are actually related to autism, such as digestive disorders that often result in individuals with autism requiring special diets. I know an individual with autism in her thirties who has routinely had to miss work because of psychological treatments (due to her autism) that would often result in chronic stays in rehabilitation centers, requiring absences from work. In college, she sometimes would be unable to attend class due to bouts of nausea related to her digestive issues.
In addition, the issues of a person with autism, whether they are health-related, sensory-related, or socially-related, sometimes limits the hours they are able to work. Some individuals with autism are only able to work part time because a full time job would be too demanding for them. This can also hinder the efforts of a person attempting to find a living wage job.
Fourth, more awareness needs to occur regarding the distinction between employment and independence. Employment is often discussed in transition plans and is often seen as a stepping stone to independence. But one thing I have observed on my travels is that employment and independence are actually quite different, and in many cases, employment does not lead to independence. In addition, the health issues that often result in a person with autism only being able to work part time can often make them unable to make enough money to support themselves, since they are unable to work full time jobs.
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 via an SSI or disability check, not by employment. Meanwhile, the majority of the jobs that my autistic friends and the people I meet are not in “living-wage jobs”—that is, jobs that make enough income to enable them to be independent. My friend Julia is a person with autism in her twenties and has worked a variety of jobs yet is still living at home because none of those jobs pay enough to support themselves independently. Yet my friend Charles, also in his twenties, lives independently quite well, and does so by receiving an SSI check, which gives him enough money to pay for his needs, along with guaranteed coverage for health issues. And I have met many individuals with autism who choose to remain unemployed, or will only work limited hours, because of their need to retain their disability income, along with the health insurance that being on welfare needs because of their medical expenses. Sometimes being on welfare also guarantees housing for these individuals that they can afford, housing that would not be given to them if they were not on welfare.
Finally, people do not always recognize that living expenses are often higher for individuals with autism, due to their unique needs as individuals with autism. They might often need sensory items such as weighted blankets in order to function. Autistic individuals can also have greater health expenses due to their greater health needs, whether they are due to psychological issues, or the physical issues mentioned above. For example, many individuals with autism are on medications or vitamin that can be costly. Some of them are also on special diets, such as a gluten free or casein free diet, which can make it more expensive for them to feed themselves. Therefore, a living wage job for a person without autism may not necessarily be a living wage job for a person with autism.
These realities are probably the most important things that people need to address in order to find meaningful and living-wage employment for individuals with autism. Many individuals with autism I know, such as my co-author, want to work and would prefer to be financially self-sufficient through employment. These people need help, and people should help them. However, many of them find that employers are not always able to accommodate them in living-wage jobs, or that it is harder for them to survive in such jobs for many reasons, some of them listed above.
One other barrier that also impairs a person with autism from finding employment is that people with autism are treated differently in society, even when they attempt to follow social skills they learned in social skills classes or training. People with autism are often discriminated against in subtle ways in many parts of society, and in public settings. People with autism may have been taught social skills to fit in with the neurotypical world but find themselves unable to fit in because they are treated differently than other neurotypicals.
Like Rachel, I dream of a world where people with autism who desire employment and choose to work can be accommodated in workplaces and that their dream of independence can be fulfilled. I hope that someday the reality I have seen in the world today can be changed.
Employment barriers are complex and there are many issues that autistic people face when they pursue employment. My life experiences and the stories I have heard in my travels from others with autism have led me to conclude that the following questions need to be asked if we are going to help individuals with autism find meaningful employment:
If individuals with autism are often employed in non-living wage jobs, is it worth it for them to pursue higher education and advanced degrees before they pursue employment?
How do we find employment that enables a person with autism to live independently, even with the additional expenses that a person with autism might have due to their autism?
If an individual with autism is pursuing a specific career, what are the social requirements and sensory requirements necessary to function in the workplace environment specific to that career, some of which may be unrelated to the work skills themselves?
If welfare income, such as income from SSI or disability, enables financial independence more frequently than employment, while employed individuals often must still rely on their parents, is it even worth it for individuals to find employment, or should we just focus on granting them SSI or disability income, or other forms of welfare?
Likewise, if welfare provides superior support than employment, does society truly desire employment for individuals with autism?
The answers are probably different in different parts of the United States and the rest of the world, and the right path is probably different for each individual with ASD based on their specific issues, skills, and situation. But I believe that these are the questions we need to ask ourselves to help people with ASD find employment in society.
Disclaimer: The views and opinions expressed in this article/blog are those of the authors and do not necessarily reflect the official policy or position of The Dan Marino Foundation/Marino Campus.
This article was originally written for the Autism Companion magazine.