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"Autism
Rocks" T-shirts!!
Note Cards by people with autism |
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But at 1, 2, even 3 years old, she essentially was silent. Borderline catatonic as an infant, she didn't like to be held or touched. All of her milestones came late. She didn't sit up until she was 18 months old, didn't walk until after 2. As a toddler she would throw epic tantrums, hurling objects across the room. She had peculiar obsessions, such as the contents of women's handbags, and refused to use stairs. Oddly, although she didn't talk, she flawlessly sang nursery rhymes. Her doctors didn't know what autism looked like. "Most of them said I was severely retarded and I wouldn't be toilet trained and I would be a real liability for my parents," Sirag said. Sirag proved them wrong. Through a combination of early intervention by her grandmother, intense determination, natural intelligence and inherent sociability, Sirag gained the upper hand in her struggle with a formidable developmental disability that impairs communication, social interaction and behavior. She did well in school, made friends, got through college, supported herself. Married 14 years now to theoretical physicist Saul-Paul Sirag, she has a full and joyous life. She also has emerged as a leading advocate and role model for Lane County's sizable autism community. Since 2001 she has been president of KindTree Productions Inc., a Eugene support organization that celebrates autistic adults and children through art, education and recreation. Earlier this spring, Sirag was the recipient of the Arc of Oregon's Sarolta Nagy Award, an annual award given to a developmentally disabled person who has made an outstanding contribution to the quality of life for other Oregonians with developmental disabilities. Before that, she nabbed the Arc of Lane County's Self-Determination Award. That's not to say life has been, or ever will be, easy for Mary-Minn Sirag. Chronically underemployed most of her life, she has been fired from more than a dozen jobs. She can't remember faces or voices, and has an abysmal sense of direction. She seldom maintains eye contact, and she struggles to master the give-and-take of normal social interaction. She often rocks back and forth gently during conversation. Like many autistic people, she suffers from stomach problems - in her case, occasionally debilitating Crohn's disease. Sirag also has bouts of extreme anxiety, usually set off by losing things, dropping things or attempting to multitask. During occasional severe meltdowns, she staples her arms or cuts herself with scissors. "The pain is very calming," said Sirag. Sirag's singular blend of compassion, energy, humor, forthrightness and vulnerability makes her an inspiration to others, say those who know her well. Here's what TR Kelley, a Swisshome musician who is autistic, wrote about Sirag in one of more than a dozen nomination letters for the Arc award: "Mary-Minn Sirag is someone I instantly felt a powerful kinship with - intelligent, literate, insightful and very unapologetically autistic. Her candor and willingness to share and speculate and advocate serve as a beacon for me as I continue to accept and come to terms with my own lifetime of undiagnosed autism." Nan Lester, founder of the Eugene-based Asperger Advocacy Coalition, hired Sirag two years ago to be a mentor and companion to her son. Max, now 12, has Asperger syndrome, a form of high-functioning autism. The pair struck an enduring, mutually beneficial bond that has changed both their lives and deepened her own understanding of her son, Lester said. "Mary-Minn is the single best thing that's happened to us," she said. Sirag wasn't so unabashed about her autism as recently as five years ago. In fact, she said, at the age of 5, living on her grandmother's Iowa farm, she made up her mind never to be autistic again. Her parents, with four other children, had difficulty coping with her, but welcomed her when she returned home two years later. "I really wanted to be normal," said Sirag, whose diagnosis is high-functioning autism. "I lived in fear of being locked up." From that point on, she kept her disability under wraps, with varying degrees of success. Her family relocated from Florida to Beirut, Lebanon, where they lived until Sirag was 15. Kids at school thought she was weird, but she still had friends and excelled in class. After finishing high school in Maryland, she enrolled with a full-ride scholarship at Cornell College in Iowa, graduating in 1972 with a degree in classical languages, French and art. She bounced through a slew of jobs, including waitressing - "the hardest thing an autistic person can do other than being an air traffic controller." She moved to New York City in 1977, where she completed a summer graduate program in Latin and worked other odd jobs. Her life took a dark turn after getting a boyfriend who dealt drugs, abused her emotionally and, when she tried in vain to end the relationship, stalked her obsessively. She lost touch with her family and moved with him to Oakland, Calif. There, she kept a well-paying administrative assistant job at a Japanese trading company for six years, escaping the boyfriend in 1984. She and Saul-Paul, 14 years her senior, began dating a year later. In 1991, they moved to Eugene and bought the house they still live in, a modest, orange-sherbet-colored cottage with a huge, untamed backyard teeming with birds. Every room is jammed with knickknacks and stacks of books, arranged by topic. Whatever wall space is not blocked by books is covered with artwork, some of it by autistic artists. Since then, Sirag has worked numerous jobs, been a freelance writer and briefly served as editor of the Tri-County News in Junction City. "It was the most wonderful job I ever had," said Sirag, who lost it when a new publisher made personnel changes. Five years ago, she heard about KindTree from a massage therapist she'd met while working as a U.S. Census Bureau counter. "I wasn't about to call them, because what if they thought I wasn't autistic enough?" she said. KindTree founders Steve Brown and Michelle Jones, both caregivers to autistic people, called her instead. As she began attending gatherings, she found kindred spirits and a sense of belonging she'd always yearned for. For the first time, Sirag embraced and even celebrated her autism. She's never looked back. "It's a little like, I guess, what people get with religion," she said. "I didn't know there were a whole lot of other people who are `high-functioning' - I really didn't know." She speaks to caregivers, educators and people in the autism community all over Oregon, and writes a regular column - "Mary-Minn's Stim Page," named for the repetitive body movements that bring relief to many autistic people - in the KindTree newsletter. She attends support group meetings and helps organize special events, such as the annual Summer Autism Camp/Retreat, scheduled this weekend at Camp Baker near Florence. "I think of her as the centerpiece that the rest of us all revolve around," KindTree secretary Tim Mueller said. Sirag also sits on the board of Bridgeway House, another Eugene autism support organization. She teaches city-sponsored art classes to people with developmental disabilities, and has been a peer mentor and workshop leader at McKenzie Personnel Systems, Lane Independent Living Alliance and Oregon Vocational Rehabilitation Services. She's been working on a book - "sort of a user's guide for people with autism on how to negotiate the neuro-normal world," she said - and is trying to start her own business as a book index writer. Improving the lives of other autistic people is her passion and her mission, she said. She'd love to help establish a community support system that assists autistic people with employment, relationships, shelter and more. "I see autism as a different culture that coexists along with the neuro-normal culture and, of course, interacts," she said. "I'd like to celebrate that culture, learning how to use our strengths as a community. "But I proceed slowly, because
if I take on too much I'm overwhelmed, and then I'm worse than
useless."
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