Struggles
Has it always been autism spectrum disorder?
Misdiagnoses in our family have been painful for mom. She struggled to find answers for family and others, it was too late for her dad. He was hospitalized for early onset senility and vascular dementia in 1942, but written accounts suggest cognitive deterioration made him the target of ridicule and abuse predating his institutionalization. The special bond between my mom and her dad that she describes seems to be colored by a shared neurodivergence. The diagnosis of schizophrenia burned across our medical landscape and into mom’s life. She became ardently “anti-psychiatry” in her writings and beliefs beginning in the 1960’s. I believe autism spectrum is multi-generational in our family and it was paired with high intelligence and physical attractiveness to make it even more complex. Schizophrenia and eugenics cannot be uncoupled historically. It is important that we know the dark paths our society has traversed. Mom came to believe her dad was having a type of seizure causing sleep disorders and cognitive decline.
Which came first, the mitochondria or the psychogenesis?
Throughout human history, women have been victimized. The “witches” burned or drowned are myriad. Folklore demonized children with developmental delay as changelings. Babies were left to die of exposure or worse. I am puzzling out the role of mitochondria defects and how it fits into history and into the pattern of mom’s life.
But, really, which came first? The genetic defects to the mitochondria or the so called psychogenetic pathologies in mom’s history. Most of all, I am leaning into the trauma that always, always, precedes psycho-genetic disorders. What constellation of emotional wounds carve into a person the devastation wrought by trauma-induced sickness and disease? How is that suffering so callously dismissed and minimized? I saw it in an LPN days ago. Over the years Mom has endured being spit on, accused of seeking sexual advances from a doctor when seeking treatment for chest pain and left to almost bleed out in a hospital hallway after giving birth.
All of this because I am trying to steer the medical treatment for mom as she is in a spiraling decline. And I am processing the anxiety I feel because a nurse says mom’s tremor is faked for attention. The same nurse that says lorazepam takes a month to show benefits, who sits five feet away from mom while she is rigid and nearly prone in a wheelchair from muscle rigidity, staring at the ceiling with her every exhalation a groan scream of distress. I have no idea how long this went on before I walked in and began an intervention of getting her seated upright. Then I attended to a bathroom urge. Slowly, over the next hour, mom quieted and the muscle spasms eased.
Two days later mom is in bed when I arrive. Partially upright, head listed over to the side, tongue lax and over into her cheek area, left unattended like road kill on a busy highway. I again engage mom, get her upright, feed her some yogurt and a few ounces of protein drink. The rigidity is rendering her barely able to move. After and hour we do some sit to stands for muscle movement. She says her bladder is emptying so we wait a moment and then lay her back down. Her pants feel damp, we try to get them off of her while she is prone. It was then I realized the whiff of strong odor I thought I caught earlier was from her, not some dirty laundry in the room. I do not have as queasy stomach, but the odor was as close as I get to gagging. 100% saturation of the overnight style incontinence briefs, damp pants and about 8 ounces of urine soaking through the sheets. The attendant was a little taken aback, explaining she had only been on shift 3 hours at that time. I can infer that she also thought this was not just a few hours worth of urine. Did the morning shift not attend to her, while the same nurse described is the duty nurse?
When I call and check on her with the next shift she is resting comfortably, sleeping like a baby.
So now I conclude that mom is being triggered, and the common denominator may be the nurse that I am uneasy about. Without a doubt mom has exhibited autistic like traits all of her life. Her writing reflects that. My observations and research also tie in the links to mitochondrial dysfunction. Mom’s failure to thrive, the vomiting, the allergies, the “hysterical” screaming, the hospitalizations, the esophogitis, the migraines, the dozens of trips to the ER for intestinal pseudo obstruction like events, the dysphagia, the poor balance, the literalness and credulity, the thyroid problems, the miscarried pregnancies, the horrible toll full term pregnancy took on her body, the repetitive behaviors, the compulsion to propagate plants (she was the stick lady to her neighbors because she could get any cutting to root), the affected displays of physical affection, the scripting of her conversations we all thought was because she was choosing to be stuck in the past. In a way she was stuck, but it was likely because of neurodivergence causing a type of social communication dysphoria. Her poetry and writings are her script and aging has left her unable to create new scripts. Then the vista of medical symptoms expands to her children, her parents, grandchildren and now great grandchildren. The genetic component is writing on the wall.
I recall mom saying her migraines were seizure like, and she never sought treatment for them because they would have taken her drivers license. If she could not drive she would not be able to scrounge up work when she was well enough to put on the mask of a “normal.” Separate from the seizures that left her seeking the coolness and dim lighting of the bathroom floor while not vomiting for 12-24 hours were problems with her vision. She was trying to describe optical migraines.
In this manner she persevered, always quitting jobs before she could get terminated. She quit a lot of jobs. Only one time this got away from her. She had a seizure like attack, where she apparently appears conscious but to her it was like a brief black out. The attack happened while she was walking the runway as a fine department store model. Her manager believed mom’s denials of being intoxicated on the job, and cried because it was out of her hands. Mom was fired on the spot, with the manager gifting the loaned clothes that had been part of the employment contract for off hours “modeling” in her personal time.
I will continue researching medical studies, reading the introductions and conclusions several times, scanning over the methods and results to glean what I can. I am my mother’s daughter, seeking answers for her and my children as she did for her father and my sister.
Picard, Martin PhD; McEwen, Bruce S. PhD. Psychological Stress and Mitochondria: A Conceptual Framework. Psychosomatic Medicine: 2/3 2018 - Volume 80 - Issue 2 - p 126-140
doi: 10.1097/PSY.0000000000000544
Anglin RE, Garside SL, Tarnopolsky MA, Mazurek MF, Rosebush PI. The psychiatric manifestations of mitochondrial disorders: a case and review of the literature. J Clin Psychiatry. 2012 Apr;73(4):506-12. doi: 10.4088/JCP.11r07237. PMID: 22579150.
