It is hard to believe that one year has already passed. My mind feels like a room full of shattered glass. I wish I could forget, but the pain runs much too deep now. Reminders of what I learned frequently invade my thoughts. My chance discovery involving autism, post-traumatic stress disorder, and monotropism unleashed a paralyzing surge of trauma. The only experience I can compare it to is my suicide attempt 20 years ago.
There is no doubt how much my life has changed since April 26th, 2023. I am living through an escalation of traumatic stress worse than anything I have endured before. Only now, for the first time, do I know more about autism and recognize a problem more people should take seriously. So, I implore the autism community to heed my concerns and create a new day of awareness. Let us bring light to autism and PTSD.
The day seemed to begin like any other. That is, if you consider receiving a diagnosis so late in adulthood that it ruins your life as normal. On April 26th, 2023, I knew that autism was neurological in origin. For years, I recognized something different about my life. So this led me to trust my instincts and believe autism was a major influence. But an overwhelming pressure to be positive about my late diagnosis stifled my awareness.
A few days earlier, I came across Dr. Temple Grandin’s website. She supposed that the natural potential of autistic youth was being stifled by society’s push for conformity. I was in the final minutes of an appointment with my case manager when I mentioned this to her. Something clicked in my mind. I looked her in the eye and said, “Am I what happens when we are not connected to our special career interests?”
This reminded my case manager of a client she currently had. They exhibited a similar problem with career decision-making that I struggled with. Before I pressed for more details, I made sure it was okay to continue. Their privacy was important. A neuropsychologist suspected them of being autistic within one year after they graduated college. They were intensely focused on working in one particular field of music.
So much so, in fact, that they were unable to choose anything else. The lack of connection to their special interests had become so problematic that they experienced debilitating distress. What my case manager said to me next made the color drain from my face. Trauma therapy confirmed that they had symptoms of post-traumatic stress disorder. Given the similarity of our cases, if they had PTSD, it was possible that I did as well.
At this point in my life, I knew that trauma was serious. However, even though I was a suicide attempt survivor, I never associated trauma with my life. The reason was largely due to how stigmatizing suffering from trauma is. I brought my suspicion of PTSD to my counselor’s attention at our next session. I was so caught off guard when she unexpectedly screened me for it that I had to ask her, “What did you just do?”
The results were favorable, indicating that I was already suffering from PTSD. How could this be? I did have the same experience as my case manager’s client when I graduated from college in December 2002. This was May 2023. I felt no severe distress. It was still a crucial moment. I found enough evidence to speculate on what I had clearly not realized. Now I could ask the right questions without bias clouding my judgment.
Over the next two weeks, something remarkable happened. As I re-evaluated my August 2019 autism diagnosis, I started to get this creepy feeling of déjà vu. It got so strong that I told myself, “I know what this is.” Then, I figured out what it was: suppressed memories of being in denial as a suicide attempt survivor were resurfacing. At first, I was confused until I wondered if my subconscious mind was giving me a clue.
By now, I was more confident about my autism and trusted my natural instincts more than before. So I followed the logic of trusting the pattern of denial I recognized. After 20 years and multiple experiences with suicide, I knew how grave a mistake it was to be in denial of it. I was lucky to still be alive. Therefore, if my instincts were correct, I was also in denial about my late autism diagnosis. If this was true, it felt very serious.
To process my discovery about denial, I decided to write out my findings in what I called my Autism & Denial Series. I was so close that it only took days to uncover the truth. On June 8th, I was examining an incident of selective memory loss from July 2022. It happened just after I completed the first draft of my first autism presentation. When I finished the paragraph about it, all hell broke loose. I felt an uncontrollable urge to cry.
Before my mind could register what was happening, my composure completely collapsed. Nothing like this had ever happened to me before. In fact, it had such an impact that I am starting to get emotional as I write about it here. Now, one year later, I can finally explain more than one connection between autism and post-traumatic stress disorder. This is after finding research that has reached similar conclusions.
If we look back at July 2022, we find our first major clue. This was the first time I had enough evidence to consider being autistic since birth. I was unaware that I had been masking my natural neurology for 37 years. Each time I recognized a pattern of differences, I negatively associated them with anxiety instead of positivity. The longer I went without knowing, the more stress built up. When I did find out, it triggered a fight-or-flight response.
This was so intense that my brain immediately repressed the emotions to protect me from the trauma. It lasted for at least 24 hours. The only way I could describe it was memory loss, because I could not explain what happened. And yet, that whole time, I was attentive to what I was doing. This leads me to conclude that being late-diagnosed as autistic has the potential to trigger post-traumatic stress.
If we look back at June 8th, 2023, we find our second major clue. When I unexpectedly triggered the repressed emotions as I was writing, a significant psychological reaction occurred. I experienced a complete and uncontrollable loss of composure. Both the severity and speed of the reaction are traumatic for a person to experience. One second I was in a calm and inquisitive state of mind, and the next was utter chaos.
Memories of what I discovered in July 2022 came flooding back. At the heart of it was a disruptive identity crisis: “I felt I had been living a lie.” For the second time in a year, I lost my grip on reality. Then I realized just how far behind I was with economic integration. I had little hope of catching up after 23 years. Panic set in. The fact that “every day since has not been the same” suggests the probability of post-traumatic stress.
If we look back at May 2023, we find our third major clue. When my counselor screened me for PTSD, I was not in distress. Yet the results were favorable. I did not figure out why until months later. In September 2023, I realized that my diagnosed fear of time, chronophobia, was a critical clue. I had been suffering from a steadily worsening fear of running out of time. When I dug deep enough, I discovered a lifetime of trauma.
Not only had it been disruptive to mask my autism for so many years, but I also found patterns of trauma that were not occurring all the time. Instead, they were happening at key developmental stages of my life. In fact, between 1994 and 2003, there were a minimum of five traumatic episodes, including one suicide attempt. To have such long-term trauma neglected is one reason why my PTSD screening had a favorable result.
If we look back at April 26th, 2023, we will find our fourth major clue. When my case manager’s client experienced debilitating indecision, I would figure out why at the end of that year. On December 5th, I had a panic attack after a meeting with my case manager’s supervisor. I requested accommodations for what I suspected was a conflict with monotropism. My logic was based on my case manager’s client’s case.
Unfortunately, the supervisor had a dismissive attitude towards the accommodations. I must have instinctively sensed that the pathway to my monotropic interests was in jeopardy, and it triggered a panic attack. I was strongly interested in autism research. My provider runs a facility for the same research. The client likely experienced similar panicked behavior. So there is a definite connection between monotropism and PTSD.
If we look at my life now, April 26th, 2024, we will find our fifth major clue. Every day since June 8th, 2023, I have been struggling to cope with an escalating amount of stress. In July 2022, I realized why. But it took successive traumatizing experiences to confront a tragic truth. My late autism diagnosis had allowed for complete neglect of my economic development. As a result, I never integrated into society. I am now 42.
A lack of accommodation for monotropism kept me from achieving a consistent work history. So I repeatedly drew my provider’s attention to my case manager’s client. They had accommodated a pathway to their employment interest in music through another provider. This person is now thriving. Hoping to get a similar outcome, I requested accommodations in October. But on February 13th, 2024, they forcibly discharged me.
My care provider was arranging to have me evaluated for PTSD. The discharge voided it. So although I do not have a diagnosis, I believe I know what PTSD is like. It is an everyday experience. It follows you wherever you go. Nothing feels the same anymore. No one wants to be traumatized. No one wants to be left behind. I tried as hard as I could. All I wanted was a happy and fulfilling life. Not to have mine destroyed by ignorance.
Not to have my future care jeopardized because my current provider branded me with an HCC code, next to my schizotypal personality disorder, for requesting accommodations. Not to continue courting suicide because I am in an impossible situation. Not to watch time run out to secure financial stability before my parents pass away. Not to struggle for a reason to live now that I know there is no going back.
It is not too late for any of us. There are an untold number of autistic people whose lives could be on the line right now. Post-traumatic stress is brutal. It eats you alive from the inside out. Given how many layers of it I have experienced, autistic people are likely at great risk for it. What if my case manager’s client never got the help they did? Seven months after I graduated college at the same age, I attempted suicide.
Heed my warning: trauma therapy is not enough. That is why I advocated to my ‘former’ care provider, an innovative and well-funded entity, to accommodate monotropism. Without adequate economic integration, our suicide risk increases. That is why I have experienced chronophobia. I am reacting to my long-term lack of social and economic integration. Making April 26th Autism PTSD Awareness Day will help save lives.
Starting with mine…
