Imagine you are the parent of a young child exhibiting the bewildering and often difficult signs of autism, yet you are unable to obtain an early diagnosis and gain access to promising treatment options for your child because of year-long wait lists to see knowledgeable and experienced clinicians.
Or you are an adult with autism and your family cannot find a medical and therapeutic team with the training and expertise to handle the lifelong needs of a maturing individual with autism. And like so many children and adults with autism, you and your family have nowhere to turn to learn about new therapeutic developments that might help you to communicate and cope better with your unique physical, sensory and behavioral challenges – all of which are important for creating meaningful engagement with school, family and friends.
To address these compelling lifelong individual and societal needs, Nancy Lurie Marks and her family foundation – The NLM Family Foundation based in Wellesley, Massachusetts – have donated $29 million to Massachusetts General Hospital (MGH) to create the Lurie Family Autism Center.
World-Class Center
“The NLM Family Foundation and Massachusetts General Hospital share a passionate commitment to establishing and developing a world-class multidisciplinary center in autism dedicated to comprehensive clinical care, cutting-edge research, advocacy and public policy analysis, as well as providing training for a new generation of clinicians and researchers – all focused on meeting the needs for autistic individuals from early childhood through adulthood,” says Dr. Clarence Schutt, Director of the NLM Family Foundation.A national search will begin for a director for the Lurie Family Autism Center. The director will occupy an endowed chair at Harvard Medical School and, through this gift and the ongoing commitment of MGH to outreach and fundraising, will be provided with the resources to create an environment promoting the discovery and testing of new treatments and the training of future leaders specializing in delivering medical care to the autistic population.
The center will build upon the clinical practice at LADDERS, a program of the MassGeneral Hospital for Children providing expertise in neurology, developmental pediatrics, gastroenterology and psychiatry/psychopharmacology for children with autism. Margaret Bauman, MD, who founded LADDERS in 1981, says that, “Many of the children we saw originally are not children anymore, but they stayed with us because they have no other place to go where their unique challenges are understood by doctors and therapists.”
She recounts the story of a 35-year-old autistic man who needed to come to the hospital for a specific procedure but when he arrived, became upset and began lashing out at staff members. The medical staff were not trained in dealing with autistic patients and did not know how to handle him. Their protocol only exacerbated the situation, and they ended up calling in pediatric staff, introducing an element of indignity for an adult.
“This kind of situation demonstrates the lack of medical resources for adults with autism, a long-neglected and growing population. We should be prepared for all autistic patients, regardless of their medical situation and their age. The Lurie Family Autism Center will allow us to address this need,” states Bauman.
Expanded Program
The new Lurie Family Autism Center will increase the core services comprising LADDERS, as well as offer families and individuals occupational, communication and physical therapies. The gift will allow expansion of the clinical program into adult internal medicine, augmentative communication, nutrition, audiology, vocational and transitional planning support, and a key element, care coordination between clinicians, therapists, educational and family counselors and researchers.The gift will also establish a two-year fellowship program for young physician-researchers in training to work actively with patients at the center, informing their work as physicians and as researchers. The center will also be a participant in a separate multi-institutional medical training program at Harvard Medical School funded by the NLM Family Foundation to educate a new generation of physicians in the modern care of patients with autism.
“Her work opened many eyes to the possibility that autism had its origins in early neurodevelopment, rather than in poor parenting, putting the nail in the coffin of the outmoded “refrigerator mother” explanation, giving new direction to autism research,” says Schutt. “Under the terms of the gift, Dr. Bauman will become the MGH Distinguished Scholar in Autism, an endowed position to be held by a pioneering physician-scientist, allowing its first occupant the freedom to pursue the potent blend of clinical observation, research and raising public awareness that has been the hallmark of her career.”
Integrated Team
Today, patients who visit the Lurie Family Autism Center will be seen by a well-integrated team of doctors attuned to their individual medical and therapeutic needs. Timothy Buie MD, a gastroenterologist who specializes in autistic patients, has found, for example, that when GI problems are addressed, patients often exhibit marked improvements in their behaviors, no longer lashing out in pain, because the root cause of their behavior can be treated with existing medications. The center will not only have specialists such as gastroenterologists on site, but will operate under a model where interdisciplinary response teams will develop strategies to deal with the highly complex set of issues facing individuals with autism.“It has been my lifelong dream to establish a center of excellence where people with autism and their families can be treated with compassion, understanding and dignity. I believe it is so important to address their many lifelong needs, from the medical care of the child or adult, to learning to find an effective way to communicate, to planning lifetime living and learning opportunities, to advocating for families,” says Mrs. Nancy Lurie Marks, Philanthropist, Founder and Chair of The NLM Family Foundation. “We are confident that this Center will profoundly help the many families and individuals dealing with autism in our communities, and hope that it will become a model for centers nationally.”
