Though I was diagnosed as autistic in my infancy and can remember as far back as when I was four years old, I never realized I was different until the second grade, when I was shuffled between special and regular education, when I made the fateful decision to become fully integrated into the latter, in my attempts to become a “normal” person. Throughout my grade-school years, I never fully embraced being autistic, even during the months before I graduated. When I was offered Social Security benefits due to my disability, I was reluctant at first before ultimately accepting, a decision I didn’t regret, although it would easily become a pandora’s box years later.
I mostly used the money from disability benefits I received from Supplemental Security Income (SSI) to pay for community and undergraduate college, along with various scholarships I received. Although I graduated in December 2008 with my bachelor’s degree and an excellent GPA of 3.93 in computer information systems, the job offers didn’t roll in at all, despite my constant applications to various positions. I eventually discovered Social Security’s Ticket to Work program, which, after a lengthy process that involved background and reference checks, helped me land my first part-time job for a firm that worked with the local military base, slightly in my field, but very far from high paying.
That job only lasted for two months, after which I was promised another position with the same company on the military base working for the provost marshal’s office, but I did not receive it until the following year. This occupation lasted only a year due to my high error rate in submitting reports. Between my first and second paid jobs, I had relearned to drive, as not being able to do so had been a major deterrent in having to turn down a position with my old community college in the middle of 2009, and I did not want to burden my parents with the constant need to bus me to and from work.
Around this time, I lacked experience with mass job posting sites and relied on applying to positions directly through company websites. I submitted applications for several positions in my town’s school district and netted my third position as a substitute teacher, which, too, lasted around two months. The next and final job I would have for several years was with an education platform’s call center, which lasted longer than the others I had held, and during my tenure, I discovered that my parents constantly needed to submit my wages to Social Security so they could determine how much to reduce my payments and whether I needed to pay back some of the money I had received from the government.
After I was terminated from that job, I began a seven-year hiatus where I held no form of paid employment and lived off my Social Security money while living with my parents and keeping up to date with my various medical obligations through a combination of Medicare, Medicaid, and Tricare for Life, the last of which I received since my father had been in the military. In 2019, I made the decision to reenter the workforce, applying for several jobs online and ultimately receiving a customer service representative position at my town’s call center, which at that time became the job I held longest before stress and the onset of the coronavirus pandemic pressured me to resign.
Again, my parents needed to submit my earnings to the Social Security Administration, where they needed to endure the constant waiting game and runaround of snail mail correspondence in which they reduced my monthly disability benefit payments and even necessitated me to pay much of it back. After I left the call center, I worked at home for an inbound support specialist position where I only handled emails, tickets, and live chats with customers across the world, an ideal occupation for an autistic such as me. It would end a few months later due to my refusal to be trained in the phones, and I found myself back in the same call center as before.
I was promoted to my final full-time paid position a few months into training for another customer service representative position, which would last until May 2023. My parents continued to submit my pay stubs to the SSA until I was terminated, after which they reported my firing. They seemed fine with it at the time, only to about-face the following February when they ended my Medicare and other federal disability benefits on account I was no longer “disabled,” accounting for a continuing process where my father had to submit appeal forms, the first of which the government lost. The second forms submitted went through, only for my father to need to fill out more forms and mail them back.
This summer, due to accumulating post-traumatic stress stemming from my domestic life and worldly affairs, I made the decision to move out of my home into my own apartment in town, the process of which wasn’t terribly difficult to accomplish online, where I paid my deposit and other fees and ultimately moved in. However, untimely communication on the part of the apartment managers, who are situated in one town over, needlessly delayed the process. After I moved in, I researched and sought what state programs I was eligible for, eventually applying online for Texas programs such as SNAP, although I am still awaiting a response as of writing.
I had researched other possible benefits such as rent assistance and called 211 several times, only to get the constant runaround, which has been my biggest issue in dealing with programs like those I have received, along with the mentioned untimely communication, and long periods in between status updates, alongside needless complexity, which is a huge deterrent to anyone, disabled or not, attempting to seek governmental assistance, and I have yet to find any concrete help for my monthly rent. I believe, in the end, that far better and quicker communication, in addition to a more widespread application of the KISS (keep it simple, stupid) principle, would go a long way in helping autistic and other disabled individuals get the help they need.
Remy St. Gallen is a Freelance Artist at Studio St. Gallen. He can be reached by phone at (254) 238-3602, by email at jmgallen124@gmail.com, or through his website at jmgallen.w3spaces.com.
