Friends of LADDERS is integral to the future “All physicians, therapists, and educators of the LADDERS program, Bauman said. involved in the child’s care communicate and “As a clinical practice devoted to medically learn from one another,” Bauman said. complex children, we are chronically losing “LADDERS also trains parents and teaches them money because of poor insurance to advocate for their children.” reimbursements,” she said. “A new patient visit is Though autism is a complicated disorder extremely time-intensive and we are never totally requiring a huge commitment medically, reimbursed for our services. Visits require reviews educationally, therapeutically, and socially, of voluminous patient records, lengthy clinical LADDERS has never been a big money-maker, evaluations, Q-and-A’s with parents, and time according to Katherine Murray, RN, a spent helping families find community resources. LADDERS research study nurse and parent of a We draw from the entire New England area, New 28-year-old son with autism. York, New Jersey, and elsewhere in the U.S., “Our staff is the best of the best, yet they are Canada, and abroad. We also write letters of underpaid,” Murray said. “They come to support to schools and insurance companies and LADDERS expressly to work with Dr. Bauman. Autism has received a lot of media attention lately provide ongoing follow-up care. Research dollars are limited so philanthropy is absolutely and that’s good; it’s almost sexy to say you work necessary.” in the field now. Yet, this woman has been doing it forever. Margaret Bauman just gets it.” BUILDING A DREAM Murray comes by her admiration not only as a medical colleague, but also as a parent in need. Friends of LADDERS recently kicked off an She says Bauman’s care of her son, Doug, set him $11 million capital campaign to build a worldon a path for a highly productive life. Her eyes class autism research and treatment center. brim with tears as she remembers a long ago “My long-term dream for LADDERS is a conversation with Bauman. single site where we will not only combine “She asked me, ‘What do you want for your services, but also pursue clinical research and basic son?’ My answer was simple: ‘I want him to be science research,” said Bauman. “The scientist happy and have friends. Doug spent his fifth needs to learn from the clinician and vice versa.” birthday hiding in a hall closet,’” she said. “Today LADDERS’ dual devotion—to research and he works at the Burlington Marriott Hotel and clinical treatment as well as the ability to see the has been associate of the month twice.” child first and autism second—is nowhere more Bauman and her LADDERS staff directed evident than in Bauman’s insistence that every Murray to the best schools for Doug and taught patient receive an overall health assessment. the family techniques for coping at home. Several Children with autism may have illnesses similar to years later, Doug suffered a grand mal seizure and those affecting typically developing children, but Murray returned to LADDERS. they often go untreated. These include seizures, “I became involved with Friends of sleep disturbances, and gastrointestinal disorders. LADDERS, the organization’s parent networking “We’ve got a group of nonverbal kids who and fundraising group, and eventually joined its can’t say, ‘My stomach hurts,’ or ‘My head board of directors,” Murray said. “When a research nurse position at LADDERS came up, I was thrilled to take it.” Murray coordinates the world-renowned “Current Trends in Autism” annual conference sponsored by LADDERS. Now in its 12th year, the conference presents the most up-todate, scientifically sound information in the field of autism for parents and professionals. ■ Autism is the fastest growing disability in the United States. ■ Autism is more common than Down syndrome and childhood cancer. ■ A child is diagnosed with autism every 21 minutes. ■ Autism affects one in every 166 children and appears four times more in boys than girls. ■ Autism affects at lease one million Americans and costs the country more than $90 billion annually. ■ Autism is a life-long disorder.
The Facts About Autism
hurts’,” Bauman said. Many primary care doctors are uncomfortable treating children who can’t communicate their symptoms and are prone to outbursts. True pain from a medical ailment may be misinterpreted as an autistic behavior. “We’re just saying these kids are kids, too, and they deserve good medical care,” she said. LADDERS serves as the flagship and model for the Autism Treatment Network (ATN), an alliance of hospitals, physicians, and the Cure Autism Now Foundation, dedicated to improving medical treatment for autistic patients. ATN will evaluate therapies, pool data, and create guidelines. “We can’t have parents chasing down the latest treatment,” said Peter Bell of Cure Autism Now. “We need to understand what works.” Tim Buie, MD, pediatric gastroenterologist at Massachusetts General Hospital for Children and LADDERS, and a founding member of the ATN GI research group, believes a GI history and work-up should be part of every autistic person’s medical assessment. “Recently, I saw a young boy who hit his head rhythmically,” Bauman said. “Dr. Buie ordered an endoscopy and colonoscopy and found that the boy had colitis which, once treated, stopped the behavior. I’ve seen children with sleeping problems that resolved after an ear, nose, and throat visit, and kids with incontinence who’ve been found to have spastic bladders. One patient writhed and twisted her body because, as we learned, she had Sandifer syndrome, a condition causing esophagus ulcers. Many medical conditions are treatable, and effective diagnosis and intervention can improve an autistic child’s daytime behavior, his attention and ability to learn, and his overall quality of life.” Despite her overflowing professional plate, Bauman finds time to relax. Kay Murray smiles and says with admiration. “Dr. B leaves her house at 5 a.m. She drives to the local ice rink and figure skates before coming to work.” And, in true Bauman fashion, Murray said, the accomplished physician, scientist, and patient advocate is “really an incredibly good skater.” ■ — Patti DiBona is a freelance writer from Braintree, Massachusetts.
– SOURCE: Learning and Developmental Disabilities Evaluation and Rehabilitation Services; for LADDERS program information, visit www.ladders.org or call (781) 449-6074. W i n t e r
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