Thomas F. Anders, M.D.
In July 2003, the UC Davis M.I.N.D. Institute opened its doors, ready for business --- a brand spanking new facility sited on the campus of the University of California Davis Medical Center in Sacramento CA. It is truly an unique and remarkable facility with a set of miraculous goals enclosed in the 30-year time capsule embedded in its foundation: “Find the causes and cures of autism by 2033”. The new M.I.N.D. Institute facility consists of 2 connected structures, totaling 102,000 square feet, on 11 acres of the UCDMC campus (cf. pictures). The research building (with space for both wet and dry laboratories) is conceptually integrated with the clinic-academic building by means of a parent/community resource center on the first floor, and the Bistro, with an indoor-outdoor café and library on the second floor. Finally, a large auditorium, available for both scientific and community events, integrates centrally. Partnerships and active collaboration between constituencies (faculty, patients, families, researchers, visiting scholars, community providers, etc.) guided the construction of the facility and provides the underlying philosophy of the M.I.N.D. Institute.
Developmental pediatrics, pediatric genetics, child neurology, child/adolescent psychiatry, and child psychology are the academic building occupants. The M.I.N.D. Institute facility, setting and philosophy are ideally suited for the training of medical students, child/adolescent psychiatry residents, pediatric residents and neurology residents in the neglected areas of autism and other neurodevelopmental disorders. Researchers from multiple disciplines occupy the research building. Research laboratories for basic genetic, immunologic and toxicology studies, neuroimaging and clinical neurophysiology are essential laboratory components. The facility is remarkably well equipped to support education and training (on-site and distance learning) with observation rooms, conference rooms, telemedicine and videoconferencing equipment and high tech computer hardware and software placed strategically throughout.
How did this remarkable dream come true? The history of the M.I.N.D. Institute, from its first inception in late 1997 as the “dream” concept of a parent of a child with autism, has been described in detail elsewhere (Anders, et al, 2003). However, in brief, five Dads, all fathers of children with autism living in Sacramento CA, ultimately joined forces with the University of California, Davis and the California State legislature to establish and fund the M.I.N.D. Institute. What does the acronym “M.I.N.D.” stand for? It is short for Medical Investigation of Neurodevelopmental Disorders. The “Institute” (part of the University of California Davis School of Medicine) is dedicated to the research, teaching and care of individuals affected with autism and other neurodevelopmental disorders. The M.I.N.D. acronym reflects two of the primary principles that have guided planning and implementation since the beginning. First, the M.I.N.D. Institute has a medical focus on investigation; and, second, the focus on neurodevelopmental disorders is broader than autism per se, although autism research and treatment are high priorities.
How did these principles come about? The founding parents had investigated clinical services and research programs across the country mostly searching for treatments for their affected children. What they concluded was that it was rare for children with autism to be evaluated by an integrated team of medical specialists (pediatricians, child neurologists and child psychiatrists) effectively working together. Moreover, they found that the few bright spots of research were being carried out in relative isolation without significant interdisciplinary collaboration or coordination. They asked individual scientists if they were aware of the work being done by other scientists. Invariably, the answer was negative. Apart from the lack of coordination between researchers, there were clinicians scattered across the country working with individual families. They were trying a variety of treatments and some were trying to develop clinical research protocols, but their trials were poorly funded and in some cases poorly designed. Some trials employed questionable ethical standards.
The parents also identified groups of educators utilizing a variety of behavioral techniques. The educators, like the scientists and clinicians, were employing multiple strategies derived from a variety of theories with little collaboration, communication or evaluation. They found opportunists making claims about untested treatments and cures by leveraging the Internet. As desperate parents, they found it daunting to understand the science, manage their difficult child, and keep the driving force of hope from steering the family to irrational, possibly dangerous treatments.
Sadly they came to realize that the basic scientists and clinicians were not communicating effectively within their respective disciplines, let alone across disciplines. Furthermore, no one was talking to the educators. Everyone was working toward a common goal but there was no coordination of effort. One parent, a contractor, noted that current efforts were equivalent to constructing a building without plans. The concrete, steel, and drywall contractors were at the building site, just building. Their dream, their passion, their Project Hope, was to establish their “solution” at UC Davis, sited in their home city, Sacramento California, the capitol of the largest state in the union.
The parent-University-community partnership in integrating the delivery of service, supporting research and advancing interdisciplinary education at all levels, from high school exposure to life long learning, both on site and afar, is what makes the M.I.N.D. Institute unique. And it is the energy, enthusiasm and commitment of all constituencies that has resulted in its success. There is no doubt that any one, or even two parties, alone could succeed. The M.I.N.D. Institute is a three-legged stool: patients and families, community agencies/providers and the University, embedded in a solid foundation of science, education and clinical care.
Parent/community/university partnerships are not always easy, however. The University as a governing body can be painfully slow and methodical; the parents’ timetable is urgent. It is obvious why parents want crises resolved urgently and answers immediately. The well being of their children is at stake. It is also apparent why the University needs to be cautious. Regulatory oversight, institutional priorities and academic freedom are determinants not to be taken lightly. Community agencies often are skeptical of newcomers and resist change. In fact, the greatest area of conflict to date has been “timing” and timetables.
How successful have the first four years been? A new Institute facility has opened. Architecturally and functionally it is a masterpiece, designed especially for individuals with neurodevelopmental disorders, and for fostering interactions, communication and collaboration among a number of disciplines and constituencies. State funding in FY 2004 was continued despite serious budget deficits in California. Private contributions and federal research grant support have increased dramatically. Recruitment of highly qualified research and clinical faculty and staff has been steady. And a new class of medical students, developmental/behavioral pediatric fellows, child and adolescent psychiatry residents, neurology residents and post-doctoral trainees has moved in.
The research labs are humming. Moreover, M.I.N.D. funding has supported innovative research programs in neurodevelopmental disorders throughout the UC system, and in the nation. A competitive grants program has been in operation for 4 years and funded 52 research projects. Local community agencies and school districts have profited from M.I.N.D. Institute funding and from its telemedicine school-focused interactive videoconferencing program, TeleMIND. And children and families have benefited from a comprehensive, interdisciplinary team evaluation in the M.I.N.D. Clinic where developmental pediatricians, child neurologists, child psychiatrists, and child psychologists work in the same physical facility specially designed to meet the needs of children with neurodevelopmental disorders and their parents.
As one of the five founding Dads said, “While driving to the first meeting, a dinner at the Dean’s house, to discuss the idea of an Institute, the radio announcer noted that it was the first day of the Age of Aquarius.” The family had heard for years about the dawning of the Age of Aquarius but had always thought that it was just a line in a song. They never realized that it had an actual start date. The radio announcer went on to explain that it was a point in time when men would set aside their notions of war and begin to work together for the higher calling of the common good. Thus, on that first day of Aquarius in 1997, these separate and distinct beginnings came together and the M.I.N.D. Institute at UC Davis exists today.
REFERENCE:
Anders, T., Gardner, C., and Gardner, S. Professional-parent collaboration: The M.I.N.D. Institute Model In, S. Ozonoff, S. Rogers, and R. Hendren (Eds.) Autism Spectrum Disorders: A Research Review for Practitioners. Washington, D.C. American Psychiatric Publishing Inc. pp.227-238, 2003.
In July 2003, the UC Davis M.I.N.D. Institute opened its doors, ready for business --- a brand spanking new facility sited on the campus of the University of California Davis Medical Center in Sacramento CA. It is truly an unique and remarkable facility with a set of miraculous goals enclosed in the 30-year time capsule embedded in its foundation: “Find the causes and cures of autism by 2033”. The new M.I.N.D. Institute facility consists of 2 connected structures, totaling 102,000 square feet, on 11 acres of the UCDMC campus (cf. pictures). The research building (with space for both wet and dry laboratories) is conceptually integrated with the clinic-academic building by means of a parent/community resource center on the first floor, and the Bistro, with an indoor-outdoor café and library on the second floor. Finally, a large auditorium, available for both scientific and community events, integrates centrally. Partnerships and active collaboration between constituencies (faculty, patients, families, researchers, visiting scholars, community providers, etc.) guided the construction of the facility and provides the underlying philosophy of the M.I.N.D. Institute.
Developmental pediatrics, pediatric genetics, child neurology, child/adolescent psychiatry, and child psychology are the academic building occupants. The M.I.N.D. Institute facility, setting and philosophy are ideally suited for the training of medical students, child/adolescent psychiatry residents, pediatric residents and neurology residents in the neglected areas of autism and other neurodevelopmental disorders. Researchers from multiple disciplines occupy the research building. Research laboratories for basic genetic, immunologic and toxicology studies, neuroimaging and clinical neurophysiology are essential laboratory components. The facility is remarkably well equipped to support education and training (on-site and distance learning) with observation rooms, conference rooms, telemedicine and videoconferencing equipment and high tech computer hardware and software placed strategically throughout.
How did this remarkable dream come true? The history of the M.I.N.D. Institute, from its first inception in late 1997 as the “dream” concept of a parent of a child with autism, has been described in detail elsewhere (Anders, et al, 2003). However, in brief, five Dads, all fathers of children with autism living in Sacramento CA, ultimately joined forces with the University of California, Davis and the California State legislature to establish and fund the M.I.N.D. Institute. What does the acronym “M.I.N.D.” stand for? It is short for Medical Investigation of Neurodevelopmental Disorders. The “Institute” (part of the University of California Davis School of Medicine) is dedicated to the research, teaching and care of individuals affected with autism and other neurodevelopmental disorders. The M.I.N.D. acronym reflects two of the primary principles that have guided planning and implementation since the beginning. First, the M.I.N.D. Institute has a medical focus on investigation; and, second, the focus on neurodevelopmental disorders is broader than autism per se, although autism research and treatment are high priorities.
How did these principles come about? The founding parents had investigated clinical services and research programs across the country mostly searching for treatments for their affected children. What they concluded was that it was rare for children with autism to be evaluated by an integrated team of medical specialists (pediatricians, child neurologists and child psychiatrists) effectively working together. Moreover, they found that the few bright spots of research were being carried out in relative isolation without significant interdisciplinary collaboration or coordination. They asked individual scientists if they were aware of the work being done by other scientists. Invariably, the answer was negative. Apart from the lack of coordination between researchers, there were clinicians scattered across the country working with individual families. They were trying a variety of treatments and some were trying to develop clinical research protocols, but their trials were poorly funded and in some cases poorly designed. Some trials employed questionable ethical standards.
The parents also identified groups of educators utilizing a variety of behavioral techniques. The educators, like the scientists and clinicians, were employing multiple strategies derived from a variety of theories with little collaboration, communication or evaluation. They found opportunists making claims about untested treatments and cures by leveraging the Internet. As desperate parents, they found it daunting to understand the science, manage their difficult child, and keep the driving force of hope from steering the family to irrational, possibly dangerous treatments.
Sadly they came to realize that the basic scientists and clinicians were not communicating effectively within their respective disciplines, let alone across disciplines. Furthermore, no one was talking to the educators. Everyone was working toward a common goal but there was no coordination of effort. One parent, a contractor, noted that current efforts were equivalent to constructing a building without plans. The concrete, steel, and drywall contractors were at the building site, just building. Their dream, their passion, their Project Hope, was to establish their “solution” at UC Davis, sited in their home city, Sacramento California, the capitol of the largest state in the union.
The parent-University-community partnership in integrating the delivery of service, supporting research and advancing interdisciplinary education at all levels, from high school exposure to life long learning, both on site and afar, is what makes the M.I.N.D. Institute unique. And it is the energy, enthusiasm and commitment of all constituencies that has resulted in its success. There is no doubt that any one, or even two parties, alone could succeed. The M.I.N.D. Institute is a three-legged stool: patients and families, community agencies/providers and the University, embedded in a solid foundation of science, education and clinical care.
Parent/community/university partnerships are not always easy, however. The University as a governing body can be painfully slow and methodical; the parents’ timetable is urgent. It is obvious why parents want crises resolved urgently and answers immediately. The well being of their children is at stake. It is also apparent why the University needs to be cautious. Regulatory oversight, institutional priorities and academic freedom are determinants not to be taken lightly. Community agencies often are skeptical of newcomers and resist change. In fact, the greatest area of conflict to date has been “timing” and timetables.
How successful have the first four years been? A new Institute facility has opened. Architecturally and functionally it is a masterpiece, designed especially for individuals with neurodevelopmental disorders, and for fostering interactions, communication and collaboration among a number of disciplines and constituencies. State funding in FY 2004 was continued despite serious budget deficits in California. Private contributions and federal research grant support have increased dramatically. Recruitment of highly qualified research and clinical faculty and staff has been steady. And a new class of medical students, developmental/behavioral pediatric fellows, child and adolescent psychiatry residents, neurology residents and post-doctoral trainees has moved in.
The research labs are humming. Moreover, M.I.N.D. funding has supported innovative research programs in neurodevelopmental disorders throughout the UC system, and in the nation. A competitive grants program has been in operation for 4 years and funded 52 research projects. Local community agencies and school districts have profited from M.I.N.D. Institute funding and from its telemedicine school-focused interactive videoconferencing program, TeleMIND. And children and families have benefited from a comprehensive, interdisciplinary team evaluation in the M.I.N.D. Clinic where developmental pediatricians, child neurologists, child psychiatrists, and child psychologists work in the same physical facility specially designed to meet the needs of children with neurodevelopmental disorders and their parents.
As one of the five founding Dads said, “While driving to the first meeting, a dinner at the Dean’s house, to discuss the idea of an Institute, the radio announcer noted that it was the first day of the Age of Aquarius.” The family had heard for years about the dawning of the Age of Aquarius but had always thought that it was just a line in a song. They never realized that it had an actual start date. The radio announcer went on to explain that it was a point in time when men would set aside their notions of war and begin to work together for the higher calling of the common good. Thus, on that first day of Aquarius in 1997, these separate and distinct beginnings came together and the M.I.N.D. Institute at UC Davis exists today.
REFERENCE:
Anders, T., Gardner, C., and Gardner, S. Professional-parent collaboration: The M.I.N.D. Institute Model In, S. Ozonoff, S. Rogers, and R. Hendren (Eds.) Autism Spectrum Disorders: A Research Review for Practitioners. Washington, D.C. American Psychiatric Publishing Inc. pp.227-238, 2003.
