My Experience of Autism and CPTSD
Compounding Trauma
The garbage heap of one’s complex trauma makes sifting and sorting through it much like navigating an entire abandoned city in your mind full of empty space because of the disassociation lodged between you and the trauma. And then, when you realize you have gone through many episodes of complex trauma in your life, not just one, you do anything possible not to view yourself as a piece of damaged goods. I had several different instances of complex trauma stemming from childhood.
One example of complex trauma for me came from young adulthood, which I will share with you. At the same time that my best friend was dying of breast cancer between 2010 and 2013, my own personal survival was also very much in doubt. I was fighting to stay alive apart from her, and I honestly did not think I would make it. The odds were against me. (It was so traumatic that I do not want to discuss it in this piece. What is important is the compounding trauma that I am willing to discuss.)
We were a source of mutual strength toward one another during this challenging time in our lives. But I could not be all the things to her that I wanted to be because of the trauma I experienced parallel to her, and after she passed away in 2013, the guilt I felt for not being able to be a complete source of refuge for her became unbearable. It still brings me incredible grief.
I had met Susan* (not her real name) ten years earlier. She was the most wonderful friend I ever had outside my immediate family. Ours was not a romantic relationship but rather of bearing our souls to one another completely and totally. There is not much that I did not know about her, and vice versa. Outside of a very small group, I keep to myself. Susan managed to break through my bubble.
When I first met her in 2004, she was a budding autism therapist who personally trained with Stanley Greenspan using the method known as Floortime. She was naturally gifted in connecting to autistic children, meeting them where they were on their terms, and forming authentic relationships with them that generalized to their relationships with others once they transferred to their least restrictive environments. This is why I trusted her. Without being autistic herself, she was one of the few people that “got it.”
Susan and I had long philosophical conversations about the meaning of life. We laughed about the number of times our paths most likely crossed before finally meeting one another — she was a member of my childhood temple and a server at a restaurant my family often visited when I was a child. She turned my usual sourpuss face into one where tears could be found streaming down my cheeks because of the uproarious laughter she created. I laughed louder being with her than listening to a George Carlin concert.
She is the only person who has ever gotten me to go to the gym, a place I frankly dislike quite intensely due to the manly exhibition of male ego bodily superiority and the dreadful sound of treadmills and aerobic music. But if she was going, that was enough to make me want to go.
Her greyhound, Heine, was always a joy to visit. He was such a gentle soul who reminded me of a dog on the autism spectrum, but this was because of the enormous trauma Heine endured as a badly abused race dog. We took Heine to the dog park once, and he was the only dog not playing with the other dogs. Susan and I looked at each other and had the same thought: He’s on the spectrum! I was told that Susan’s husband only allowed a greyhound and no other type of dog because greyhounds typically do not bark a lot, and her husband hated dogs.
Sounds like a wonderful husband, right?
As soon as Susan’s husband learned that she had cancer, he immediately made a beeline to get out of the marriage. He started cheating on her with another woman and made it extremely difficult for Susan to see her adopted son. He started training his son to think of his new girlfriend as his mother, not Susan. All of this led to a very contentious divorce court case, with the end result being that her ex-husband and the new girlfriend fled the country with her son. Susan never got to see him again, nor did Susan’s own mother. Watching Susan go through this ordeal was painfully traumatic in an especially vicarious way where I could feel the agony down to my bones.
But then, as if things were not bad enough, Susan’s health insurance was dropped because she was on her husband’s plan. My dad, who is an attorney, offered to do his best to help her navigate the predatory world of health insurance. This was before Obamacare, and so she found it next to impossible to obtain a plan because of her preexisting cancer diagnosis. But she needed chemo, radiation, and surgery immediately. There was no time to lose. Eventually, she found a very substandard plan that covered a bare minimum.
I watched Susan lose her hair. I saw her go from the most fantastic and energized exerciser I had ever seen to someone who had trouble leaving the house. But the small things she did inspired me during her stage four phase. She would walk around her living room with a cane as a form of exercise, even after her cancer had metastasized to her bones. “How can you do this?” I asked her in awe. “How can I not?” she would reply. It was a sight to behold.
We talked most nights on the phone while she was going through chemo and radiation. I hate talking on the phone as an autistic person, and Susan knew it. But somehow, just like she could get me to the gym, she could get me on the phone. And we would talk for hours. And I went over to her house to walk Heine on the days when others could not. (Heine almost tore my shoulder out once on a walk. He was strong! When he wanted to go in a specific direction to sniff, you were going with him whether you wanted to or not.)
But I could not give Susan a hundred percent of what she needed because of my own trauma. And Susan, while being my best friend in life, could not provide me with everything I needed — very understandably so because she was dying. Sometimes, I did not have the energy to talk to her and did not answer the phone. Other times when we did talk, I held back emotionally because the trauma I was going through at the time was threatening to asphyxiate me (in a figurative sense).
How can one hold open a space for such vicarious trauma when one is fighting to stay alive and experiencing trauma themselves? I tried valiantly, but I could have done better.
Susan and my mother were also best friends. Their friendship sprouted from ours. It became moderately easier on the days I did not talk to Susan to know my mother would be in touch with her.
Susan made many trips to the hospital for chemo and various emergencies that would come up. I went a lot to visit her, but I could have gone much more. My own ongoing personal trauma made it painful — too painful to be there much of the time. I feel very guilty about that.
By the time she was finally in the active dying phase, I went several times to visit her. Yet, I could never stay at the hospital as long as I wanted to. I feel guilty about that, too.
On the day she died, her breathing became so labored, and her skin was so hot to the touch that by this point, I wanted her to let go and stop suffering. Her death was not a Hallmark Movie of the Week, where she peacefully exited life with no pain while angels waited to greet her. Her body had viciously turned on her, and she was consciously experiencing the most excruciating, godforsaken pain right up until the very end. On top of the physical aspect of what Susan was going through, she had been psychologically mourning herself, knowing that her mother would never see her grandson again. She wept for me, knowing my trauma was consuming me. And most of all, she was ready to exit her body. I told her it was ok. I wanted her to stay, but for her sake, I wanted her pain to end. I loved her and wanted her to look after her son in another dimension. She died four hours after I said those words.
At her funeral, she had over five hundred people there. You may think I am exaggerating, but I am not. I have never seen so many people attend one funeral for someone who was not a celebrity. The chapel was overflowed with people; some had to be fitted into the reception area, while the central area was a standing room only. Many of these people were the parents of the children she worked with. My dad read a poorly written eulogy I wrote about my relationship with Susan on my behalf. Susan made sure a Baptist Choir was there to sing This Little Light of Mine in honor of her adopted black son, who was now overseas. The choir also sang Seasons of Love from Rent, one of Susan’s favorite musicals. (The choir told everyone they had to learn the song in twenty-four hours, but they sang it like it had been in their repertoire for years.)
Because the nature of my trauma has been ongoing, though not as intense as it was in 2013, I’ve never been able to mourn her death in the way I would have wanted to. I feel robbed because of that.
Every year, a group of people light a yahrzeit candle for Susan, but even then, the magnitude of the loss I experienced eleven years ago refuses to sink in fully. It is a loss beyond what words can fully articulate and exceeds all pain thresholds, but even so, I have yet to let the loss dissolve through me with the sharpness that it should. I have yet to be able to “feel” the loss. It is still numb, though sometimes it pierces through the skin. Sometimes, I can quantify what a loss her death meant for the world and how my life would be so much different if she were still here.
Briefly unpacking all of this
Apparently, PTSD is common in autistic men.
The researchers also found some unexpected trends: The association between PTSD symptoms and autism traits is, for as yet unknown reasons, stronger in men than in women, even though typical women are two to three times more likely to develop PTSD than are typical men; that gender bias might eventually inform treatments.
In all honesty, I think autistic women experience trauma at the same or even higher rates than autistic men. I don’t have scientific data to support this assertion because it is strictly observational. However, the research has, at the very least, helped confirm that I am not alone.
But rather than having the compounded trauma that has no doubt affected my limbic system, including the amygdala, hippocampus, and probably my prefrontal cortex totally debilitate me, I fight against this with all of my might by trying to remain compassionate toward others. I read books that stimulate my mind and help my brain engage in neuroplasticity, where some of the neural networks in my noggin can change and reorganize (there is nothing like reading Alan Watts for this effect). I do my part to engage in tikkun olam, which, in my small way of repairing the world, means trying to help anyone I can reach suffer less and hopefully experience less future trauma.
However, the body keeps the score. And yes, that means I am more hypersensitive to sensory stimuli, more hypervigilant, more irritable, startle quicker, am more depressed, more emotionally reactive, and more easily drained by everyday life than I was in my late 20s and early 30s. So, this battle against trauma will be a lifelong fight for me. And as of now, I am ready for it.
Perhaps the “fight” begins with a simple surrender. With the acceptance of what is. And the willingness to try to move forward after surrendering.
And then, maybe, I will adequately mourn for my friend.
