“When I suspected my late autism diagnosis was traumatic too, I knew something was wrong.” Jim Irion, June 20, 2023.
Before 2023, I had crawled my way from not knowing autism was anything more than a word to being four years after diagnosis and how deeply it influenced my life. I was oblivious to anything else. I literally had to live and breathe that autism was positive just to get by each day. And yet, my life was a mess. I was unemployed for seven years and still lived at home. Mental health treatment was my most frequent outing. Change was coming.
Through acts of sheer will, I had given three autism presentations in five months. Despite their ignorance, I was still hopeful that my care provider might offer more intensive support. But there was a danger lurking behind autistic life, and I consider myself lucky to have found it when I did. I am still shocked by how I managed to cope with it. The truth that this was hiding may take years to recover from: denial.
At the end of April 2023, I found information from a reliable source that there was a late-diagnosed but younger autistic woman whose case had striking similarities with mine. We both had serious difficulty making career decisions before we graduated college, both with liberal arts degrees, and we were both autistic. In her case, the stress was so intense that she was diagnosed with something I never considered in myself: PTSD.
Concerned, I told my counselor at our next session, and she unexpectedly screened me for it. The results were favorable. To say that I was shocked is an understatement. Then, over the next few weeks, I began to feel a creeping sense of dread that I was missing something eerily familiar to me. When I finally figured out what it was, a chill ran down my spine. I was feeling denial, and it came from an unlikely source. Suicide.
As a survivor for over 20 years, I was intimately familiar with suicide. But I had never associated it with trauma. If the screening for PTSD triggered denial about suicide to resurface, then I knew where the trauma must have been coming from: the delay of my diagnosis. When I suspected my late autism diagnosis was traumatic too, I knew something was wrong. The dread that I felt got even worse. Suicide was a matter of life and death.
Therefore, being in denial of a late autism diagnosis must have been equally serious as well. There was not a moment to lose. There was also no telling what I might find. So I prepared myself as best I could and processed the denial by writing out my “Autism & Denial Series.” Nothing could have prepared me for it. What I found swiftly brought me to my knees. I say this because I am still haunted by it today.
On June 8th, I was writing about finishing the first draft of my autism presentation back in July 2022. About the strange 24 hours where I was so overwhelmed that I could not remember anything of what I felt. All of a sudden, my composure collapsed. I started to cry. Hard. This has only happened a few times during extreme distress. I hushed my tone and hoped my parents would not hear. But that only intensified the crying.
I quickly reached out to an autistic friend. She was gracious enough to set aside her own struggles to console me at such short notice. I am very grateful for her help. When I recovered about an hour later, I knew exactly what happened. I must have opened a veritable Pandora’s box of trauma. It was unlike anything I had ever felt before. If this was just a taste of the 24-hour blackout that I had in July 2022, it was terrifying.
A curtain had finally been lifted on my autistic life. A different reflection stared back at me from the mirror. Nothing was the same. Nothing. Too many big issues made sense too fast. I struggled to keep myself together. My anxiety and stress increased by the day. Uncovering the denial of my late diagnosis was so impactful that I would later compare it to the sleepless night of my 2003 suicide attempt. Nothing else came close.
It came as a surprise to me because I was not used to thinking about anything in my life as traumatic, including suicide. I have no doubt about the reason why. This was a testament to how stigmatized suicide and mental health still are. And now autism as well. When I was finally able to analyze the situation, what was the actual damage? In those first trauma-addled days and weeks, my conclusions were shocking.
The late diagnosis of autism is traumatizing. I had no idea I was in denial of it for four years while my care provider neglected the diagnosis. Now I could remember what I found out in the first six months. A mental health program coordinator had confided to me that there was no support for autism in adults. The second discovery was from formal research. Only one in three autistic people finds companionship.
When I finished writing my presentation in 2022, it created an identity crisis that made me feel as if I had been living a lie. The trauma was new to me. So I was unsure of whether I should feel so violated. I had entrusted my mental health to highly educated professionals for the last 33 years. Professionals who are supposed to be held to legal standards for quality of care. Are we a lower class of people? It certainly looked that way.
Before I finished my writing series, I observed a major problem with demographics. Any marginalization that autistic women, minorities, or youth experienced was doubled when autism was considered, whether they were diagnosed or not. It was so serious I had to wonder, “What about their needs?” “For mercy’s sake, what about their trauma?” I seemed lucky compared to them because they were still being marginalized.
But then I took a step back and realized this was affecting all demographics. I had 20 years of honest chances for economic success. Even though I am a reasonably capable person, I still failed to integrate into society. Twenty of the most crucial years for social and economic development (20s and 30s) were ruined. If I had been struggling, imagine how many more were as well. The sheer scale of neglect could be huge.
Then, I found a video animation by an autistic professional named Kieran Rose. Until this point, I had heard about something called the double empathy problem. It seemed like a confusing term to me, so I did not give it much thought. I was lying on the couch late at night when I found and watched the video. I only managed to get halfway through before I started having the most intense reaction of panic and affirmation.
It was explained that cross-neurotype communication problems impede autistic people in every facet of our lives, including everyday interactions with non-autistic people that are hard to avoid. These communication problems, including prejudice against autistic people’s support needs, continued to occur even after autism awareness or on-the-job training that was meant to dispel such tendencies. I was shocked.
Here was Dr. Damian Milton’s Double Empathy Problem Theory, proving everything I had just discovered in my writing series. Denial was no longer blinding me to what autistic life was like. Instead, I was actually running out of time. My late diagnosis ruined my economic integration through the persistence of career indecision and unemployment. At age 41, I had no financial stability or independence whatsoever.
I used to be criticized for having to take seven years to address what I thought were mental health issues. Now, every day was traumatizing because I had compelling research to better understand what the biggest problems were. Until autism was taken seriously in healthcare and employment, my stress would keep increasing. I had to hurry. Unfortunately, what had to happen next seemed impossible to do anything about.
For those who happen to be late or undiagnosed, delayed autism awareness and denial can cause serious damage to your social and economic development. It took until July 2023 for me to discover it, and on my own initiative. I have been struggling with the trauma ever since. Such stress will eventually affect my physical health, if it has not already. Denial can keep you from realizing or advocating for your true support needs.
Until you identify and address it, you will not be able to advocate effectively for yourself or other autistic people. But the average healthcare provider may also marginalize your support needs and neglect your healthcare. So, again, it is wise to rely on supportive autistic people and advocates. We know what this is like. The later we reach this level of serious awareness, the greater our risk of suicide and PTSD.
Now, the battle for intellectual disability rights was about to begin…
#AutismAdvocacy
Continued here in Journey of Accommodation, Part 3.
