“It soon became clear I had stumbled onto something far bigger than my late-diagnosed authentic self.” Jim Irion, January 17, 2023.
As 2023 came to a close, I looked back on a year that changed my life more than I could have ever imagined. What began with genuine autism awareness ended with a desperate gamble for accommodations. It seemed impossible. It felt like a train wreck. The previous year, I found that autism was an integral part of my life. I gave a confident presentation on autism resource needs twice. However, I did find a serious flaw.
Do autistic people begin learning about autism at a disadvantage? Does masking to blend in or being late diagnosed blind us to knowing if we need certain accommodations? Is there healthcare support to help us integrate into society on our terms? How the hell did I go from being hopeful to post-traumatic stress? Before I knew I had any support needs to advocate for, the first lesson was painful to learn: knowledge is power.
My journey from autism awareness to advocacy began long before 2023. In May 2018, a former coworker urged me to pursue mental health treatment in the middle of what I refer to as the summer from hell. I began with my first healthcare provider’s case management service on May 24th. Once my case manager arranged financial assistance, I started the second provider’s generalized counseling service on October 15th.
The hell reference refers to conflicts I had with the volunteer community. Two years earlier, suicide-level stress forced me to address my mental health. I had no one to turn to. So I explored the mental health volunteer community to look for guidance. I ended up alienating key community leaders, who either ostracized me or overreacted to my unfiltered behavior. This triggered a suicide relapse in August, before I started counseling.
Thanks to the failure of dialectical behavioral therapy, my counselor had a hunch that I might be autistic. So she had me assessed. Shortly before I turned 38, in August 2019, it was confirmed. I had long hoped there would be some form of support for the economic and social issues plaguing my life. But I had no idea what this “Autism Spectrum Disorder 299.00 (F84.0)” was. Neither, it seems, did my care providers.
In spite of the diagnosis, they did not prioritize accommodating it. My counselor and I reviewed publicly available research. It was confusing. She admitted being unfamiliar with autism and could not help. This made me start to lose hope. I scheduled fewer sessions. When lockdowns forced mental health services to go virtual after March 2020, I dropped that care provider because of it. My lack of integration was neglected.
By the time I switched all services to the first provider, it had set me back at least a year. When I was assigned my new counselor in August 2020, I made autism a priority. Every attempt to understand online research was futile. She suggested I do it myself. Adapting my behavior was useless because I did not know I was fighting my own natural neurology. The medications I was prescribed did not help. I felt as if I was running out of time.
It was about to get a lot worse. In 2021, my case manager referred me to a service provider to try their employment program. I was unaware that I was prone to cross-neurotype miscommunications. In August, they abruptly accused me of misconduct. This triggered a frightening suicide relapse before I left their parking lot. My care provider’s failure to accommodate autism and suicide had nearly cost me my life.
At the same time, I was subjected to discrimination by a facility that has locations across the state. I finally filed an affirmative action complaint in early 2022. However, they lied on the findings report; a CEO intervened and lied to smear my name. My appeal was denied. I lost the case. I still had no clue that the double empathy problem was responsible for these issues. My care provider still failed to accommodate the diagnosis.
For all this time, I was forced to figure out autism on my own, one trait at a time. I described the traits as seeing falling leaves, but not the tree they came from. Instead, I relied on autistic people, whom I compared my behavior to, to learn. Finally, thanks to two community volunteers, I questioned whether autism was a mental health issue. Then, I discovered that autism was both neurological and developmental in nature.
On June 16th, I shared this revelation in a support group when a mother of two autistic children offered me a presentation opportunity. I questioned numerous autistic people on social media to complete the necessary research. What happened next is still somewhat of a mystery. After I finished the first draft, I had conclusive data about my life in one place. When I read it, I experienced a 24-hour period of selective memory loss.
The stress was so overwhelming that all I remember is willing myself to move on as soon as it subsided. Much like my previous suicide attempt in 2003, as I would later realize. What I did manage to gain was a powerful moment of clarity. I had stumbled onto something far bigger than my late-diagnosed authentic self. So I secured presentation opportunities with my care provider and a scholastic education committee.
In December 2022, I wrote out my findings. For years, capable healthcare providers were responsible for neglecting my autism. I was at a disadvantage because I could not discern this on my own. Developmental setbacks persisted, opportunities for discrimination increased, and my mental health was strained to the point of suicide. I can think of no more damning fact than how my professional diagnosis was not enough.
Furthermore, publicly available research was borderline discriminatory. There was still an exclusive focus on youth or those with severe impairments. Even more scandalous was being diagnosed so late. In early junior high, I had a psychiatric evaluation showing evidence of autism. Yet my social issues were dismissed because I was stereotyped as high-functioning. I trusted my instincts and threw myself into advocacy.
I had just finished giving my third presentation on autism resource needs on January 19, 2023, which was the second presentation I had done for my care provider. I waited to see what they might do next, hoping they would tap me for further insight. Maybe even consider hiring me for autism research. I had built my case around being a primary source. A primary source is the best for formal research because it involves lived experience.
Days turned into weeks as time slowly dragged on. The waiting quickly drained my hopes for a positive outcome. I decided to distract myself from the futility I saw in my situation. Ever since I was diagnosed, I wanted to do something big for the April autism awareness theme. But all my community recognized were autistic children. So I never did anything. That was about to change in a very ambitious way.
On each day of April, I published writing on Medium in support of autism awareness. However, only five days into it, I had a meeting with a director overseeing my care provider’s facility. I intended to discuss my suspicion of the need for occupational accommodations, but the director dominated the conversation. They explained that this is how employment works. I was given no opportunity to express my concerns.
The meeting took place during my counseling session. So she saw firsthand how one-sided it was and expressed concern. Unfortunately, we were both powerless under the authority of corporate management. I poured myself into writing about autism and was resigned to move on. That was until April 26th, when I found out about a young, late-diagnosed autistic woman whose life experience would soon change my life forever.
In spite of gaining this partial awareness of autism’s constant influence, I was unaware of my support needs. Neither was I encouraged by society’s lack of acceptance to consider them. Being forced to start from scratch also meant I was powerless to stop my lack of socioeconomic integration. I lost count of how many days I struggled to get to this point. Such negligence by healthcare providers should be promptly addressed.
In the meantime, try to seek out supportive autistic people and advocates, such as myself, who are respectful of you and demonstrate that they take autism seriously. Once I figured out that autism was neurological, I could finally ask the right questions. I could advocate more effectively, first for myself and then for everyone else. The later we reach this level of actual awareness, the lower our quality of life will be.
Knowing is half the battle, but life as I knew it was about to get much worse…
#AutismAdvocacy
Continued here in Autism and Denial, Part 2.
