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National Alliance for Autism Research, Princeton, NJ

Research / Fellowship Program Support and Operational Support

This grant is in staged fulfillment of an ongoing five-year NLM Family Foundation pledged Challenge Grant to National Alliance for Autism Research (NAAR). NAAR's mission is to fund, promote, and accelerate biomedical research and science-based approaches that seek to determine the causes, prevention, treatments and a cure for autism spectrum disorders. NAAR provides grants to researchers for innovative, new pilot studies; mentors fellowships to recruit new researchers to focus on autism; and funds collaborative research programs that have the potential to yield scientific advances in the field of autism.

National Alliance for Autism Research


The Autism Research Foundation, Boston, MA

Principal Investigator: Margaret Bauman, M.D.

Neurobiological Investigations of the Autistic Brain

This project involves advancing neurobiological investigations of the autistic brain. Support from the Foundation is to go towards financing the modernization of The Autism Research Foundation's (TARF) tissue processing and slide preparation techniques, helping to upgrade TARF's original computerized cell counting system, and helping to provide essential personnel critical to the investigation of TARF's autistic brain material and integration of TARF's neuroanatomical projects into the collaborative research efforts of the Autism Research Consortium. Specifically, the Foundation provides support for a large magnitude cryostat microtome to prepare slide material for study. The cryostat utilizes frozen tissue which eliminates the prolonged fixation time needed in the outdated process for the processing of celloidin embedded tissue.

The Autism Research Foundation

Margaret Bauman


Center for the Study and Advancement of Disability Policy, George Washington University,
Washington, DC

Support for Establishment of the Center for the Study and Advancement of Disability Policy

The NLM Family Foundation provided seed money to support the establishment of the Center for the Study and Advancement of Disability Policy at George Washington University. With Professor Robert Silverstein serving as Director, the Center for the Study and Advancement of Disability Policy conducts research and analysis of public policy issues which directly affect individuals with various disabilities and their families. It is hoped that through their research and analysis, the Center might develop solutions to adequately meet the needs of individuals with disabilities and their families and the concerns of public and private entities. Additionally, the Center provides public education, leadership development and training, technical assistance and information dissemination to disability groups, international, national, state, local, and private sector leaders and others interested in learning about the laws and programs which affect individuals with disabilities and their families.  

Center for the Study and Advancement of Disability Policy


Heller School , Brandeis University, Waltham, MA

Principal Investigator: Marty Krauss, PhD

Feasibility study for large-scale study on family caregiving and the social lives of adults with autism

Review of the literature in 1997 revealed a lack of information on the consequences of lifelong caregiving among parents of adults with autism and a lack of information on the range of supports needed to ensure fulfilling lives for adults with autism. This study involves a comprehensive search of the literature on issues facing families of adults with autism, for an assessment of various sampling strategies necessary for the conduct of a major research study on families of adults with autism, and for the preparation of a proposal for the conduct of research on families of adults with autism. The funding will be used to finalize sample recruitment strategies, establish a Parent Advisory Group, develop and pilot-test screening procedures, finalize research design, and recruit and screen approximately 400 families. The goal of the subsequent study is to conduct the first large-scale investigation of families of adults with autism and of the social lives of adults with autism.

Heller School Brandeis University

National Alliance for Autism Research, Princeton, NJ

Support for a national voluntary health agency for autism research and public advocacy

In the mid 1990s, the NLM Family Foundation recognized the need to create a national voluntary health agency dedicated to autism research. Unlike so many other conditions at that time, autism suffered from a lack of public awareness and a coherent national agenda for autism research. The NLM Family Foundation sought out organizations which it thought might evolve into this type of national organization. Following extensive due diligence, the Foundation provided critical early seed money to support this fledgling organization to enable it to grow into a large, powerful voluntary healthy agency that raises millions of dollars for autism research and public advocacy.

National Alliance for Autism Research


Syracuse University, Facilitated Communication Institute, Syracuse , NY

Principal Investigator: Douglas Biklen, Ph.D.

The NLM Family Foundation has supported the Facilitated Communication Institute for several years.  Through the Core Funding Grant, the Strategic Planning Grant and the Lurie Scholarship Fund, the NLM Family Foundation supports the FC Institute's activities in facilitated communication training, documentation and demonstration, and reinitiates a strategic planning process to better focus the Institute for the next 5-10 years of work in the field of autism and inclusion. The Foundation also provided a grant to Dr. Biklen to support his work in collecting autobiographical accounts from people with autism who had been previously considered low functioning but now communicate fluently and some even independently with use of FC.  Dr. Biklen has written a book of autobiographical accounts of seven individuals with autism published in 2005, entitled Autism and the Myth of the Person Alone .

Doug Biklen


Lesley College Graduate School
Summer Autism Institute: Critical Issues in Facilitated Communication
Cambridge , MA

The NLM Family Foundation provided support for the Summer Autism Institute: Critical Issues in Facilitated Communication, a three-day conference designed to examine current issues and research in the education and treatment of autism, pervasive developmental disorders, and related communication and behavior disorders. The conference was coordinated by Anne Larkin, Susan Gurry, Patricia Crain de Galarce, and Diane Fitzgerald. Experts from the fields of neurology, psychology, special education, education, speech and language pathology, as well as persons who use facilitated communication gave presentations.

Lesley University


Lesley College Graduate School , Division of Educational Studies & Public Policy, Cambridge , MA

Principal Investigators: Anne Larkin, Ph.D. and Susan Gurry, Ed.D.

Facilitated Communication with Young Adults: Issues and Transitions

This study will examine the implications of Facilitated Communication with young adult men with autism living in community residential facilities. The study examines the following three questions: Can Facilitated Communication enable people with autism to demonstrate that they have high levels of understanding?; Does Facilitated Communication succeed with some people with autism and not others?; Can there by any breakthrough in expressive communication as a result of this training procedure? Following initial training in Facilitated Communication, the project directors will follow the communication attempts between three young men ages 25-29 and their group home staff for a six-month period. Notes from monthly meetings, videotaped recordings, transcripts of the actual communication sessions and exit interviews with staff and administration will be recorded and analyzed.

School of Education - Lesley University


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