Watching the History of Autism Unfold Through My Matrilineage 

A striking dark-haired woman in bright red lipstick walked down Hollywood’s Sunset Blvd, pushing a pram with a sleeping baby inside. It was a cool October day in 1957. At an intersection, the woman turned away from her baby and walked across the street alone, against the light. Passers-by kept her there until the police came and escorted her and her baby back home. The woman was my grandmother and the baby, my mother. 

There are many stories like this in my family. Juanita Cook, my mother’s mother, daughter of a farmer, one of 6 children and mother to one, was an aspiring singer who struck out from Kentucky to California in the 1930s. She was diagnosed with schizophrenia. However, her presentation and traits didn’t match schizophrenia. My grandmother was Autistic, and when life became too much, she experienced stress-induced psychosis, meaning her brain checked out and took some nightmare vacations.  

Autism vs. Schizophrenia

The first mention of the term autism came in 1911 from Eugen Bleuler (who also coined the term schizophrenia) to describe an inner fantasy world.

"Autism" first appeared in version three of the Diagnostic and Statistical Manual of Psychiatric Disorders (DSM-III) 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 can share 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 on limited topics, social anxiety, and differences in perception.

Autism and schizophrenia are both 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 waters, 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, however, come with hallucinations or delusions, which are persistent features of schizophrenia.

Like Autism, schizophrenia is a spectrum disorder, which is 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 (firmly held though mistaken beliefs), hallucinations (seeing or hearing things that are not experienced by others), disorganized speech (putting together sentences that have no meaning to others), sometimes talking to oneself or others who aren't present, movement 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 would slip into psychosis. 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 the 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.

She was a late speaker, didn't make friends, had a noticeably odd prosody in her speech, didn't make eye contact, and was very interested in Native American jewelry and Westerns. She ate the same things every day. I believe my grandmother experienced a psychotic disorder likely brought on by burnout and am certain she, and her sisters, and maybe generations of women before them, and after, were Autistic.

Cruel Treatment

In my grandmother’s time, mental hospitals could be horrific places where people were abused and tortured as treatment or by design by staff and other patients. 

My grandmother talked about receiving 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. 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. As a teenager, before the hospitals, she was exorcised by a small-town preacher. 

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. Such institutions were not good for her and were not places of healing.

When my grandmother came home for the hospital, 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—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’d 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.

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, 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” for her betrayal. June cut ties.

The eldest was my great-aunt Betty (Bessie) who married a ferry captain and never had children. She was a rigid and undemonstrative woman whom my mother loved. She was her rescuer after June departed the family, and when my grandmother would fall into a haze and disappear for days or weeks. My great-aunt's affection for my mother didn't extend to me or my siblings. Betty was diagnosed with Manic Depression (now Bipolar Disorder), a genetic sibling of Autism and Schizophrenia. She was likely also Autistic. Like all of her sisters, she spent time in institutions with psychosis. 

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, who I called "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 official diagnoses. They, like my grandmother, avoided doctors. They knew what happened when you are sent away because they too had been reluctant guests of state institutions. 

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 that 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. My mother 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 and 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, and 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.

Elvis, Atascadero, and Alcatraz

I often wonder if she actually did go on a motorcycle riding date with Elvis or if she really did work as a trapeze artist with a circus for a summer.

My grandmother was the neighborhood witch. She had long stringy salt and pepper hair, a crooked nose, and was 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 (it is 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 about 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 the street that inspired 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 my grandmother 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 had 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. 

Autism and Me

I remember my mom saying "I love you" a lot. I think she meant it, but I think she also wanted to hear it to feel loved herself. She wasn’t much into mothering. She wanted to go shopping and go to Hollywood and celebrity hunt. She wanted to play Joan Jett so loud I could feel the 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 in the first 2 years of my life. 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*ck it!" My parents always said I spoke with a British accent. That was actually a speech disorder that corrected over time but without therapy. 

My childhood was a whirl of confusing 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 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. 

I loved going to my grandparents' because there was a routine there, order. I longed for predictability and routine. I was often the subject of conversation because my behaviors weren't normal and everyone thought I needed to be seen.

I was a latchkey kid at 7 and a loner through elementary school. I confused the school teachers and staff. 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, however, was sensory and 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 my school.