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An Incomplete History of Misdiagnosis and Missed diagnosis in my Misunderstood Matriliniage

Updated: Nov 17, 2022

My daughter was diagnosed as Autistic in 2014. She was the first female in my family to receive a correct diagnosis. My maternal grandmother was diagnosed with schizophrenia as a teen in the late 1930s. Over the course of her life, she was repeatedly hospitalized and subjected to horrific "treatments." She was likely also Autistic and tragically misunderstood. This is her incomplete story and mine.

Juanita Cook circa 1936. Family photo. One of two of my maternal grandmother in existence.

My grandmother walked away from her daughter's pram on Hollywood Boulevard in October of 1957. In the grips of post-partum psychosis, the 41-year-old first-time mother was either confused or too overwhelmed to attend to her baby and decided to leave. She was escorted home with her baby when passers-by alerted a police officer.

There are a lot of stories like this in my family. My grandmother, daughter of a farmer, and wannabe singer who struck out from Kentucky to California in the 1930s, one of 6 children, mother to one, was diagnosed with schizophrenia in the late 1920s. Actually, I should say misdiagnosed--or was it missed diagnosed? I'm can't be sure if schizophrenia was correct without access to history that no longer exists, but I do know this: my grandmother was Autistic and when her stress became extreme, her brain checked out and took some nightmare vacations.

Autism vs. Schizophrenia

The first mention of the term autism was 1911 by Eugen Bleuler (who also coined the term schizophrenia) to describe an inner fantasy world. In the 1970s, the term's meaning was changed to mean a life without symbolic internal life--no fantasy or complex inner world.

"Autism" first appeared in version three of the Diagnostic and Statistical Manual of Psychiatric Disorders in 1980 when my grandmother was 64 years old and I was 2 as "Infantile Autism." Prior to this, the closest defined condition was schizophrenia, which shares some features with Autism such as flat affect (blank facial expressions), lack of eye contact, seeming disinterest and difficulty in social interactions, restricted interests or hyperfocus, social anxiety, and differences in perception.

Autism and schizophrenia are pervasive neurodevelopmental conditions meaning they are lifelong conditions that result from differences in the structure, connections, and chemistry of the brain. Autism is present in early life and schizophrenia lies dormant until late adolescence or early adulthood in most cases though childhood schizophrenia does exist. To further muddy the differences, Autism was once considered to be childhood onset schizophrenia. The main diagnostic features of Autism are social communication and behavior deficits and repetitive thoughts and actions.

Autism doesn't come with hallucinations or delusions, which are persistent features of schizophrenia. Like Autism, schizophrenia is a spectrum disorder, which I think of as a set of different but similar conditions under a simplifying umbrella where differences in the spectrum are determined by gene variations and co-occurring disorders. Schizophrenia includes delusions (mistaken and firmly held beliefs), hallucinations (seeing or hearing things that are not experienced by others), disorganized speech (putting together sentences that have no meaning to others), and can include talking to oneself or others who aren't present, movements disorders, and withdrawal (which can be some complete as to include catatonia). Autism and schizophrenia can co-occur. Actually, there is a higher incidence of schizophrenia in Autistics than in non-Autistics. There are also genetic and social behavior links between the two conditions.

Autism can also co-occur with other types of psychosis. Not all psychosis is schizophrenia. My grandmother had periods we referred to in the family as "getting sick." During a period of high stress, she got a brownish film over her lips--that was the first sign--then came the psychosis. Then came the trip to drop her off at the hospital for a few weeks. She had violent and frightening hallucinations and delusions. She put herself into dangerous situations. She was known to start bar brawls when men tried to vie for her attention. A police officer once brought her home to my teenage mother when he saw her pulled over on the side of 10 Freeway in a rainstorm standing on the hood with her arms outstretched towards the sky. Another time the police brought her home she tried to eat her driver's license. It's not unclear that she had a psychotic disorder.

However, she was a late speaker, she didn't make friends, had a noticeably odd prosody in her speech, didn't make eye contact, and was obsessed with Native American jewelry and Westerns. She never spoke of hearing voices and only spoke to invisible people when she believed them to be there. My grandmother may have been schizophrenic or had another type of psychotic disorder, but I think she, and her sisters, and maybe generations of women before them, were Autistic.

When the Cure is Worse Than the Disease

There's a reason there are so many horror films and Halloween haunted houses use asylums or mental hospitals as locations. They were sometimes horrific places where people were abused and tortured as treatment or by design by staff and other patients.

My grandmother reported that she received electroconvulsive therapy (ECT) without anesthesia, which has been standard practice since the 1950s. She reported being submerged in frigid water for long periods of time, a practice called hydrotherapy. She mentioned being a victim of sexual assault in hospitals. I don't know any details about this because she shared none. She was terrified of hospitals and that extended to doctors and dentists. She converted to Christian Science, a religion that promotes prayer over medical intervention, and pulled her own teeth to prevent herself from needing to be in the vulnerable position of a reclined dental chair being probed by a man. Before the hospitals as a teenager, she was exorcised by small-town preachers.

I have no idea how many times and for how long my grandmother was a guest of California mental hospitals from the late 1930s to 1990s. When I was a child, it was one to three times a year. She tried to refuse going to the hospital and in later years it was harder to commit her. I would argue that was for the best. Temporary residence in an institution wasn't good for her and wasn't a place of healing for many then. While there are always effort made to improve care, it's still not ideal now.

When my grandmother came home, she would have no memory of what I saw before she left, only a memory of her living nightmares. Sometimes these persisted like the time she was sure--for months after leaving the hospital--that my mother was not my mother, but an imposter. She whispered to me in the backseat of my mom's eight-year-old 1980 red Mustang that my mom was someone else in disguise because she heard a man chop my mother to pieces with an ax at the hospital from the room next door. I was almost 10 years old. This type of delusion is so common (as delusions go), it has its own name: Capgras Syndrome. I recognized it immediately in my mother when she recently had a psychotic break and believed for months that my step-father, her spouse of 30 years, wasn't him. She thought he was a brother he doesn't have with the same name or other times, he was a boyfriend she had in high school she reconnected with who had the same name. The boyfriend was a real person who died from AIDS in the 1980s.

My Autistic and Mentally Ill Family Tree

My maternal family tree has a lot of dead ends. Of the five girls born to my great-grandparents, my grandmother was the only one to have a child. She did so after multiple miscarriages and was surprised to get pregnant and carry to term at age 40.

My grandmother was born into poverty and raised on a farm near Franklin, Kentucky. She was the fourth child of six, five girls and one boy. I never met the youngest child, my great-aunt June (Margorie June). She became estranged from the family after she attempted to gain custody of my mother at age 3 after another extended psychiatric stay for my grandmother. No longer in a state of psychosis, my grandmother was able to present herself as stable and able to care for her child. June lost her bid for custody and my grandmother later "knocked her across the room." She cut ties. She didn't have any children. I wish I knew her story, but I don't. She died in Los Angeles in 2004.

The eldest was my great-aunt Betty (Bessie) who married a ferry captain and never had children. She was a rigid and undemonstrative woman who my mother loved and made me feel uncomfortable and critiqued. She was her rescuer after June departed the family and when my grandmother would fall into a haze and disappear for days or weeks. Before her third marriage, my mother would be left alone, and after her third marriage, she was left with an abusive stepfather. Her aunt and uncle were salvation. My great-aunt's affection for my mother didn't extend to me or my siblings. Great-aunt Betty was diagnosed with Manic Depression, or what is now called Bipolar Disorder, a genetic sibling of Autism and Schizophrenia.

The other two aunts, Lois Delpha (called Deedee) and Ruby Christmas, were a matched set. They were constantly together. They never held jobs. One of them married in later life to Marvin, I called him "bag man" because he was a disheveled scavenger and rescuer of things others threw away. Neither of them had children. They would frequently not speak when spoken to. Sometimes, the other would answer for the one questioned. They both sported matching dour faces and never interacted with me at all. They collected trinkets and animals until animal control made them give up their 22 dogs and dozens of cats. They stripped wallpaper from the walls. They died within 6 months of each other. I don't know their diagnoses. They, like my grandmother, avoided doctors. They'd seen what happens when you are sent away.

The final sibling was a man I don't recall ever meeting. He married and worked at a Ford Plant. Besides starting smoking at age six behind the barn, I don't know anything about my great-uncle.

I know nothing about Juanita's father but his name, Wiley, that he was 23 years older than his wife, and that punishments on the farm were meted swiftly with a "switch" plucked from a tree by the child transgressor's own hands. Her mother, Ona (Luticia), died when my mother was 16. I learned through DNA testing that Ona's mother, who claimed to be of Native descent, was actually Chinese and possibly lied about her heritage to avoid Chinese Exclusion Act rules. Her story was held as true until I discovered it, but only my mother and her children remain.

It's not possible to diagnose long-dead family members, but everywhere in my memories, I see signs of Autism. I also see signs of trauma, the weight of poverty, and the cost of only completing an eighth-grade education, but I also see the same signs and symptoms of the diagnosis my daughter was given and that I was later given. Juanita wasn't the only Cook girl to have psychosis. DeeDee did as well. She wasn't the only one to be institutionalized. Her sisters all had short stints of what I was told was being sick (meaning psychosis in my family vocabulary) or depression, but my grandmother was a regular--a frequent flyer as mental health professionals sometimes say today. My mother also recalls visiting her own great-aunt at a sanitorium one of the few times they went back to Kentucky suggesting this history goes back further than I have access to.

In the sad lives and faces of the women in my family, I see situational (or selective) mutism, difficulty identifying emotions, demonstrating empathy, faces that tell no stories, the need for sameness, interests that block out the rest of the world, strange behaviors and rituals, limited social relationships to the point of near total isolation, highly restricted diets (donuts and fried chicken for my grandmother). I see disorders that commonly occur with Autism, bipolar (in my aunts and my mother), sleep disorders, hoarding disorder, depression, anxiety, and PTSD. I have requested records for my grandmother from the California State Hospital System, but mental health records are strictly protected, even in death, and I may not get them. My grandmother made a country music record in the early years she arrived in Los Angeles after the death of her father. The kind you pay to rent a studio and make as a demo. She never got to do what she wanted to do in Hollywood. She ended up cleaning houses for wealthy women and some single men most of her life. One man who hired her wanted to marry her. She was extremely weary of men with money, and well, men in general.

Elvis, Atascadero, and Alcatraz

I often wonder now as an adult if my grandmother really did go on that motorcycle riding date with Elvis or if she really did work as a trapeze artist with a circus. These were stories she told us over and over. They were usually met with an eye roll or strained smiles.

My grandmother was the neighborhood witch. She had long stringy salt and pepper hair, a crooked nose from a break later in life that she couldn't remember happening, and was always dressed in multiple layers of clothes--skirts over pants. She was always, always cold. I knew she was once beautiful and traveled to California, where I was born and grew up, to be famous. She spent time instead in most of California's finest institutions for mental health including Atascadero, Camarillo (where she was counted in the 1940 US Census and is now a part of the beautiful California State University campus), and Metropolitan State Hospital where concerns of patient treatment surfaced, and a documentary film was made on drugging patients. Hurry Tomorrow is an expose on the mistreatment of patients especially in over medicating. Only men were allowed to be filmed by the hospital. My grandmother was there when it was filmed. My mother remembers them speaking to the film crew in 1974. Metro is a few miles away from Alondra Blvd., which is where my mother picked my name.

Both Atascadero and Metro (formerly Norwalk State Hospital), sterilized patients. Approximately 20,000 patients in California State Hospitals were sterilized between 1919 and 1952. I'm only here because they chose not to sterilize her for some reason.

When Senator Harry Reid published his book about his teeny Nevada hometown, Searchlight: The Camp That Didn't Fail, my mom bought it because she was living in Las Vegas and knew her mother had lived in Searchlight before she was born. She wanted to know more about it.

My grandmother always told me her first husband's name was Homer C. Mills and that he went to Alcatraz. I didn't believe her because of "Elvis" and "circus work," but while my mom was reading Searchlight, she called me in a state of manic excitement. Chapter 26 was titled: The Promoter. It was all about Homer Cecil Mills, the conman, disbarred attorney, and womanizer who swindled dozens of people by selling phony shares in useless mines in Searchlight. He lived in the biggest house in Searchlight part-time. He lived in Los Angeles/Long Beach as well where he met my grandmother. If she knew that they weren't legally married, she never said, but according to census and obituary records, Mills remained married to his first wife, Faith who was listed as separated in the 1950 census and as his widow in his obituary. My grandmother said she left him because he slapped her. As for Alcatraz, it was actually San Quentin and then later California Colony for Men where he died in 1958.

Juanita's daughter, my mother, Terra

My mother, Terra, circa 1976

Photo Credit, James Rogers

My grandmother's marriage to my grandfather was doomed to fail early on and didn't last long. He was almost completely absent from my mother's life. I only remember meeting him once when we went to visit for Christmas. I was probably three. She asked him for money (my father later told me) and we never saw him again. He has such a common name that I haven't been able to track him. He did have another daughter, but my mom hasn't had any contact with any of them since I was a child. My mom's not great at maintaining relationships. She absolutely tries, but when she blows things up, she expects others to be comfortable in her chaos.

My mom deserves a break. Though my grandmother loved my mom more than anything, she was not able to provide stability for my mom. My grandmother had multiple miscarriages over her lifetime and had my mom at 40, which was less common in 1957. My grandmother didn't have stable marriages. She married her last husband twice even though my mother told her that he abused her behind her back. My grandmother was doting most of the time, but when she was under great stress (or what may have been Autistic burnout), she slipped into another place. A place where she couldn't handle her daughter or forgot she was her only caregiver.

My grandmother would leave my mom alone with nothing for a night, days or weeks. My mother would get checked on by her aunts and taken when my grandmother was found to be gone. My grandmother, when psychotic, was scary. She talked to dead people. She claimed to have psychic abilities to read your mind and know your grim future. She talked about the violence she witnessed. She talked about terrible things that happened to her. She constantly warned of the dangers that lurk in the world. Dangers that she fell victim to.

Young Terra had no father, a frequently ill mother, no siblings, no cousins, no friends. She was spoiled by her aunt June who tried to groom her to be the next Shirley Temple. Then she went home to poverty. She too had delayed speech. She walked on her toes into late adolescence. She was focused on special interests, often celebrities, an obsession carried throughout her life. She had sleep issues her whole life, GI issues too. She was alternately hyperactive and withdrawn. She put on a mask and learned to get into character. She joined theater in high school. She was bullied throughout her whole school career. She had odd behaviors, has hoarding disorder, and frequently reads people's moods and their changes but misses social cues, and fails to observe social norms and expectations.

In adulthood, she was diagnosed first with depression and then with Bipolar Disorder. No matter how many medications she took, the impact was minimal. She refuses therapy saying they want her to talk about her mother and that makes her throw up. My mom needed much more support than she ever received as a child and as an adult. Now in her 60s, she struggles with the same things she always has but now she is experiencing signs of dementia and sometimes psychosis. She frequently had fleeting hallucinations but the psychotic episodes she experienced recently were reminiscent of her mother's. Something she feared would happen all her life. My mother has never been hospitalized for her symptoms because of the requirements of hospitalization today requiring that a person be an imminent threat to themselves or others--having the intent to kill themselves or others. That's not been a feature of her conditions. I have also never been hospitalized. I'm grateful because I believe we are too fragile for this type of treatment. Separation from the things that make us feel safe and stable is trauma. Trauma doesn't heal.

In a period of high stress in her life, she put my grandmother into an assisted living facility and walked away. We last saw my grandmother at a lovely facility in 1992 when I was 13 or maybe 14. We moved into a rundown duplex where my mom crashed and had what most people would call a nervous breakdown. She didn't get out of bed for two months. She cried all day, and she struggled for years to get back to where she was emotionally before. We never saw my grandmother again. She died four years later in a state-run nursing home. Her remains are in the San Bernardino County Potter's Field, inaccessible to the public, and marked only with a number. I've recently called (again) to see if we can disinter her remains and get them back. I'm still waiting for an answer.

My mother has been on psychiatric medications for 30 years. They don't seem to improve her moods or reduce her symptoms. It was when my daughter's regression of skills and words had a name that I began to pull a thread that seemed woven through each of the women in my family. That thread is Autism.

Quintessential resting bitch face AKA flat affect

Photo credit: Alondra Rogers-Clements

Autism and Me

My mom says I never liked her. Even when I was a baby I would reach for anyone else who came into the room. My mom didn't know how to mother and didn't particularly seem interested in learning. I observed how she parented my siblings who were born when I was 7 and 8 years old. She asked everyone else to get them what they needed--feedings, changings, play. She had my grandmother who loved caring for babies, her husband, and me. I remember she said "I love you" a lot. I think she meant it, but I think because she also wanted to hear it to feel loved herself. I have no memories of my mother holding her other two children. I'm sure she did but that's not who she was to me. She wanted to go shopping and go to Hollywood and celebrity hunt. She wanted to play Joan Jett so loud I could feel the drums and bass in my chest. She was only 21 when I was born. My dad got up with me at night. My great-grandparents took care of me much of the time. Sometimes my grandmother did when she was well. I started speaking early using echolalia (mimicking and repeating phrases). One of my first phrases was my dad's signature phrase "F@#$ it!" My parents always said I spoke with a British accent. I had a speech disorder that corrected over time but without therapy.

My childhood was a whirl of confusion. It was all rules and I intuited none of them. I abhorred correction and burned with embarrassment at punishment, even a raised voice. I lined up my toys and preferred to display them rather than play pretend. I liked board games and needed to do lots of gross motor play like jumping rope and spinning. I struggled with emotional regulation and hyper-empathy. I cried for 2 hours in the theater parking lot after my dad took me to see E.T. The scientists preparing to experiment on him and him leaving Elliot were too much for me. I loved going to my grandparents' house because there was a routine there. There was order there. I longed for order, predictability, and routine. I was often the subject of conversation in their house between my grandparents and aunts because my behaviors weren't normal and my dad's family wanted him to take me to see someone. My great-grandparents did when I was 2. They were concerned about my toe walking and other behaviors. My parents were angry and didn't follow up. My parents separated around this time. My mom was already dating a new guy. She was 24. He said he was 21. She found out years later that he was actually 17 when they met. I was a latchkey kid at age 7. I was a loner with either one friend or none through elementary school. I was confusing for the school teachers and staff. At least once a year I would have an after-class chat, a meeting with a principal or school social worker where they probed trying to figure something out. I usually wasn't told why they wanted to talk to me and nothing seemed to come of the meetings. At the time, I thought they were looking for abuse and neglect to report, which was present, but now I'm sure these were screenings for education supports. I was bright but my skills were uneven. In the 5th grade, I tested at a 10th-grade reading level and a 4th-grade math level. I dressed poorly and hygiene wasn't a priority until I was a bit older. The other kids told me I was weird so much that I eventually made "weird" my personality. It fit.

By junior high, I figured out how to be more social and had a lot of casual friends and a few close ones. High school was social-emotional torture. My social differences in my goth phase didn't seem to be so noticeable, more like they were expected. My obsessions with the plague, Halloween, the occult, and forensic psychology all seemed to match the black clothes. This was how I leaned into being different. I found my niche. I still struggled with social rules. I had no idea how I was supposed to deal with dating. I terrified most boys in high school. My repetitive behaviors weren't overly noticeable as Autistic. I doodled, I fidgeted, I bounced my leg, and I twirled my hair. I was class clownish. I was snarky and sarcastic. I continued to pass classes and started taking college courses in 10th grade, just one per semester. I didn't cause problems and didn't come to people's attention. In my freshman year of high school, I experienced a mental health crisis. No one knew. I went to school every day with my sad face. My shoulders ached from anxiety and by the end of the day, I was in tears from the stress and the pain. No one said anything. I took a school bus and a public bus home to my duplex with no food and at least one utility out every month and I went straight to sleep for 2-3 hours. If there was food, I might eat. I felt sick to my stomach a lot and didn't want to eat. It reminded me of when I was in first, second, and third grade when I had periods of feeling sick every day probably from stress. Home was pretty bad and school was a series of sensory assaults and getting picked on for everything from my behaviors and word choices to fashion choices.

When I graduated, I had plans for college to study mental health. My parents hadn't been to college and didn't have any guidance for me. Then I made education and being a student of the world my identity. All the people I ever clicked with were different. Misfits. I met my husband in my second year of college. He was weird in just the right way. We dated, married, moved around, graduated college, moved around some more, had dogs and cats, and eventually a baby. We tried figuring ourselves and each other out. I was diagnosed with depression and anxiety disorders. I was told I had Borderline Personality Disorder features but didn't meet the full criteria. I was told I met the criteria for PTSD but the clinician didn't diagnose me with it because I only had a string of non-life-threatening traumas. I experienced a serious mental health crisis when I was pregnant with my daughter. Depression and anxiety didn't explain why I have to cover my ears when a fire truck drives by and others don't or why being at a concert is all fun and games until I'm so overwhelmed, I start freaking out (or having a meltdown in the parlance). Nothing made sense until our daughter stopped responding to her name.

What's in a name?

I started reading about Autism when I googled my 2-year-old daughter's symptoms and that's what kept bubbling up. I realized most people don't know much about Autism. I didn't. All the awareness campaigns haven't done that much to make it recognizable. They have done enough to make the name familiar and give us a stereotypical Rain Man or Big Bang Theory image. We need more named representation. We actually already have a lot of Autistic representation out there without having the name. We have historical figures like Einstein and Michaelangelo. We have autistic-coded characters. And we have individuals like Yuh-Line Niou, New York State Assemblywoman, activist Greta Thunburg and musician QuestLove who have shared their diagnoses and their deep insight into parts of the human experience. My daughter's diagnosis--giving a name to her differences opened doors I didn't know existed. It led to my self-discovery and diagnosis at the age of 36. And it granted me insight into the lives of the women who share my mitochondrial DNA.

Juanita wasn't given the chance to know herself, to name her differences. The names she was given were "broken," "shameful," "insane," "deficient," and "feeble-minded." She was believed to be so broken that she had to be rebroken to be fixed. The shocks of electricity, the shocks of icy water, the Thorazine, the infantilism, the dehumanization didn't restore her. The moments in her life that were best were those where she loved freely. Her life had more suffering than I like to think about. And I think about it a lot because my daughter may not ever be able to live on her own without paid support. I want to spare her from the repeated traumas that live in our DNA.

Why was my daughter the first to be properly diagnosed in childhood? How was my mother missed? How was I? Because the name Autism means something different now than when it was first coined and different now from when it was a condition of boys who couldn't speak or were unable to hide symptoms. Autism is an identity and a home for the weirdos, the misfits, the too-soft, and the too unexpressive.

I believe my daughter was identified because she doesn't speak. Not speaking and having a regression of skills makes her more obviously Autistic. I think if she had retained her verbal skills, she may have been diagnosed with other things and given the wrong names for who she is. My 11-year-old daughter knows who she is. She knows that she is Autistic. That her mother and grandmother are Autistic. That great-grandmother was also Autistic. She knows that Our DNA is imbued with a deep sense of justice, a sensitivity to everything around us, an intense love of those things special to us, a need to make sense of a confusing world, and a way of being that clashes with a world not made for us. Our names--Juanita, Terra, Alondra, and Harlan--are also Autism because it is who we are.

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