The life of an adult with autism How Stan copes with everyday life
I want to write about my hectic life, and yet nothing is happening in my life. It's inside a volcano. A hole in a donut like tangled yarn is my life. -- From Stan's journal .
It is a walk psychologists and neurologists note as characteristic of his autism, his Asperger's syndrome, his obsessive compulsive disorder, or whatever diagnosis they had given him ever since he'd been born blue and unbreathing in 1972 in Kharkov, Ukraine. It is a walk that, in a way, describes Stan Litmanovich's whole life.
He simultaneously moves in two directions. His upper body struts chicken- like, and his arms swing out wide. He rocks into each step, his large belly pitching forward like a watermelon. He drags his right foot, the heel of which was broken at his difficult birth. He carries the foot as if it were the heaviest part of him.
He is a peculiar form plodding down the sidewalk, his mind on the task of getting where he is going and making sense of the world of objects.
"When I walk, I look at the people, and I think they are living in a life, " Stan says. "I think, I could be participating in life. I think lots of things. I think how to cross the street, how not to get hit, how I can get more independent."
Stan, 32, lives in a San Francisco group home. He is one of an estimated 35,000 people in California with an autistic disorder and one of many adults in the Bay Area who struggle for support.
Autism has increased dramatically in the state over the last decade, and although there are now more than 20,000 people receiving state assistance, Stan is not one of them. His brain disorder is complicated and not considered to be severe enough by state doctors to warrant services. He is dependent on city mental health care and his ailing, elderly mother. Mostly, Stan has to navigate his disorder alone.
He can walk only between two known places. He goes only where he is trained to go: from his psychologist's office to his mother's house to the corner store and café. As he rocks into each step, he checks in constantly with the landmarks, the signs he memorized to make his world familiar. But he can't expand the maps others have drawn for him. There are invisible fences everywhere.
I'm having a hard time writing (redundant) communication. That is bad. What is good? I'm going to a conference on autism. And what may be equally or more good, I have a journalist interviewing me for my life story. The rest is difficult for me. -- From Stan's journal.
From that first moment in a Kharkov hospital when doctors told his mother he was brain damaged, had "mild cerebral palsy" and "scoliosis of the spine," the problem was the diagnosis. As time went on, as the first generalized convulsions hit at six weeks, as the first words and baby steps were delayed for more than a year, as he rarely ate or insisted on drinking water from rain puddles and threw violent tantrums, the problem always came back to the same thing: the lack of a satisfying, definitive diagnosis.
"My diagnosis is even trickier than my history" is Stan's assessment. Like the landmarks on the street, he needs a specific diagnosis to orient himself. He needs it to know where he's starting from and where he's going, but he needs it for practical reasons as well.
Without a clear diagnosis he has little chance of being accepted into San Francisco's Golden Gate Regional Center, one of 21 state-funded care facilities providing programs for people with developmental disabilities such as cerebral palsy, mental retardation and autism. Only state support, he believes, will help solve his problems. "I want to create an army of circumstances," he says, "to arm myself to have a good life."
Since his family doctor told him in 1989 that he might have an autistic disorder, he has taken autism to be the label that best describes his condition, even though the conclusions of other doctors who have treated him defy this categorization.
If only it were simpler to meet the autistic criteria: severe impairment in social interaction, a marked inability to initiate or sustain conversation, compulsive routines or rituals and repetitive motor movements, and preoccupations with parts of objects that gets in the way of grasping the whole. But Stan, hardly easy to describe -- his case complicated by the record of his mental problems like schizophrenia -- has already been denied care twice by the regional center.
On weekends, when Stan visits his mother, he often pulls the scrambled documents of his diagnostic history from an accordion-like folder he keeps beneath a coffee table in her apartment in San Francisco's Richmond District. "I like writings, because it kind of organizes what people think of me," he says.
He looks down at scattered papers in front of his crossed legs. In them doctors from all over the world have recorded evidence of microcephaly, convulsive disorder, organic mood disorder, obsessive compulsive disorder, depression, mild retardation, schizophrenia, attention deficit disorder, psychosis (not otherwise specified) and Asperger's syndrome, autistic disorder and pervasive developmental disorder (not otherwise specified).
Stan says: "I guess, if I say I'm autistic, I'm part of a bigger category called pervasive developmental disorder. And I'm part of a small category, maybe learning disabled or a brain disorder or something. I don't know how to categorize it properly." .
Since I was 12, I've been in the middle between my mother and the professionals. I don't know how to act. And even if they told me how to act one way, I would have a difficult time doing it, due to my disability, due to my lack of comprehension, due to my incorporational difficulty, like a coordinational difficulty, like with the body-mind and my environment. -- From an interview with Stan.
Inga is 72, suffering from a bad thyroid, too old and sick to keep caring for him even though she's never stopped trying. She's carried him around the world her whole life: to Rome in 1978, where Stan obsessively rode elevators, flipped light switches and banged the walls of apartment buildings long and hard enough to always get them kicked out; to Philadelphia for a year; to San Francisco, where still there was no success in finding Stan the proper care, the good education she imagined for him; only Stan moving through a maze of crisis centers, hospitals, half-way houses and group homes.
Then they went to India, where they lived for three years in the ashrams of a popular guru named Sai Baba, until she figured things with Stan were worse (or at least no better) and followed the advice of a close devotee and tried Sweden, which had a well-known clinic for the developmentally disabled, but they were unable to obtain citizenship papers and were forced to return to Philadelphia and another school that specialized in teaching children with autism. (Stan said of this, "I was supposed to stay there three weeks for some kind of trial, then they kicked me out, because I had holey underwear, underwear with holes. I did not change clothes").
Having traveled the globe, they found themselves back in San Francisco, just the two of them again.
He had no friends, had never had a date or a partner. After school, in the afternoons, the only place to go was his mother's small studio, where he paced or sat rocking in the bed, talking to her about chess, computers and mathematical concepts like infinity. She still prepared dinners for him, or they went out for fried chicken and pizza, the fast food he most trusted, or she took him to the bookstore -- all those books to skim before his mind drifted and lost the assembly of variegated information. And she took him grocery shopping, Stan always walking in that odd way, like a lilting pigeon, far out in front of her. .
Due to culture reasons, and my own reasons that I'm disabled, I think I have a right to stay with my mother. -- From an interview with Stan.
Four years earlier, he had moved out of his mother's apartment for the last time, to walk a different path. He lives now in a boarding house on McAllister Street, which costs him more than $800 a month (even with a city subsidy), among 14 other men and women with varying degrees of mental retardation and various kinds of neurological problems, some undoubtedly no less indeterminately diagnosed.
He spent many nights frozen and crying in his bed. Often, his nights were sleepless. "I'm having noises in my head," was the way he put it. There is the loud clicking and clanking of the radiator, the incessant murmur of the downstairs television, his roommate's always-on radio and the tweaking smoke alarm. Loud noises had always disturbed and frightened him.
"There's a lot of these inserted issues," Stan says.
If he cannot live with his mother, then he hopes for someplace where there are no bars on the window or a locked iron gate for a front door, a place that doesn't make him feel like a prisoner in a foreign country. He has many fears:
"If my mother dies, I might end up homeless. I might end up in jail. I might lose my temper. I'm not really a bad person. It's just I can't rely on my mother. I can't rely on the social worker. I can't rely on the system. Some people say turn to God, but that's just too abstract for me. You don't pray to God to go the bathroom." .
I want to learn about schemas, and theories about assimilation, accommodation, equilibrium. I kind of read it from a psychology book. And I feel that's very much me.
-- From an interview with Stan.
He follows his psychotherapist, Natasha Kasanov, down the hallway toward her office, his arms flailing, his head bowed.
"My work with Stan is on the level of helping him be more independent," his therapist says. In the past, she says, she treated his mother, Inga, for depression. She has known Stan a long time. "I think he can be trained to live in an independent situation," she says. "But Inga is extremely fearful whenever this topic comes up. She often wonders what will happen to Stan when she dies."
Stan sits near the window, light leaking through the half-closed blinds. On a table in the far corner is a stone water fountain with no water flowing.
"I want to say two things about becoming independent of my mother," Stan says to his therapist. "One is letting go, and one is knowing where to step. Like you don't go into a dark forest in a war, if you're a soldier, without being trained as a soldier. If I haven't been trained to shoot, then I don't know how to take care of myself in the forest when I'm being attacked. I sometimes feel like my mother could've trained me better when I was younger. She could've trained me like a mild soldier, so that I could reach an equilibrium."
He comes to Kasanov's office in San Francisco twice a month, to talk like anyone talks to a therapist, although it's more difficult for him to express himself in those 50 minutes. How could he ever say all the things that are wrong with his life? To describe that life and what's missing from it is almost impossible. It would, as Stan says, take to infinity. .
I want to write about organizing my things and experiences. The first thing is my clothes. The second is my papers and books. The third thing is my food. The fourth thing is communicating ideas and thoughts to people. I get disorganized and nervous.
-- From Stan's journal.
He always wore the same sweat suit. Most days he refused to shower. He often smelled like sulfur and wet mulch. He had never learned to do his laundry until the staff at the Recreational Center for the Handicapped, where he spends his days, taught him last year.
"I have a survival instinct," Stan says. "But not that I could survive if I was dropped off in the middle of nowhere. Like I dropped you off in the middle of China, that's what it would be like for me in the middle of San Francisco without any help."
One Friday, his duffel bag dragging the floor, he opens the laundry room door and finds the washing machine closed, but not on, and the dryer cycling with someone else's clothes. He pauses for a moment. "I guess I can't do my laundry," he says, without opening the washer.
An hour later, when he returns, the laundry closet is hot and steamy. He studies the two machines, as if he hasn't seen them before. He flips up the washing-machine lid and hovers over it, inspecting. There is nothing inside. "I think someone is trying to trick me," he says.
He opens the warm dryer and peers inside as if into a great problem. A kinked heap of clothes needs to be extracted. After a minute he bends down, and gathers the bundle to his body, then clumsily piles it on top of the dryer. He shuffles over to the washer, stares down again and begins counting his clothes one-by-one before stuffing them inside. .
It sounds good to a normal person, that I should get independence from my mother, because eventually you have to move out and be on your own, because eventually your mother will die. And it's kind of like my mother is autistic, but culturally autistic. I don't know how to explain it. I feel like my mother doesn't know about the modern life, and all the system. And I don't know it either, because I'm in the shell of my mother. Kind of like, I don't know how to explain it, in the cave of my mother.
-- From an interview with Stan.
He waits in the dark to use the pay phone to call his mother, the way he does every night when he arrives here in his neighborhood. He stands in front of the convenience store on the corner of McAllister, leaning on one foot, then the other, as if it were too painful to stand still.
A man, smoking a cigarette, talks on one of the two pay phones near the store window. Though the other is free, Stan keeps his distance, rocking on his heels, his soft sweat suit pocket jingling with quarters. He stares blankly into the dark street.
As soon as the man leaves, Stan steps into the blue light radiating from the store's neon beer signs. He picks up the receiver the man didn't use, bends down and considers the configuration of buttons. His task, as always, is to remember the sequence of his mother's phone number.
"Yeah, yeah, I made it," he says. "I'm here." He pauses, his head bowed, listening to her. That voice, for better or worse, his only reliable compass.
"Good night," he finally whispers. "And I bless you."
He hangs up, checks the receiver in the cradle, before he ambles down the street and underneath the matrix of scaffolding built over the door to that house that never felt like home.