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New
Parent-Driven
Autism Research Organization
Jim
Sack,
President of the Organization for Autism Research (OAR),
and six other parents and grandparents of children and
adults with autism have created a new foundation with the
mission of using applied research as the vehicle to answer
the questions that parents, families, teachers, individuals
with autism, and caregivers ask every day. OAR will
attempt to demystify autism and provide practical information
by taking on difficult questions like: What are the components
of effective education for persons with autism? How do we
best prepare adults with autism to live and work in their
communities?
"No one in the autism community,
especially parents with loved ones on the autism spectrum,
questions the importance of biomedical research. It's
the only research that will tell us what causes autism and
then offer a whole new range of treatment possibilities"
said Sack, father of four, two with autism. "Practically
speaking, however, biomedical research doesn't address the
issues that we face at home or that our children and their
teachers encounter at school. It offers no insights into
matters of daily parental concern: socialization, social
life, and the potential to enjoy friendship. And, as federal
funding for biomedical research has risen, NIH funding for
applied research has fallen to the point that in 2001 it
failed to fund a single, new behavioral or educational project
in autism. We intend to address this collapse
of support for applied research by funding studies that
will improve the lives of people with autism at every age.
Parents, teachers, and those who treat or work with our
kids and adults face challenges daily that relate to the
social and behavioral effects of autism. They don't
need theory. They need practical answers to the questions
that begin, 'How do I·?' as it relates to teaching a child
with autism and preparing that person for life's later challenges.
The pursuit and dissemination of this practical knowledge
are the essence of OAR's mission."
OAR's research strategy will consider the total population,
as well as the social issues and societal effects of autism
across the life span. Using five areas of focus: diagnosis,
treatment, education, work, and housing, OAR's approach
is to strike a balance between the importance of early diagnosis,
intervention, and treatment for children with autism and
the recognition that autism as a life-long challenge presents
a different set of social, vocational, and educational issues
for those living with autism, their families, and the communities
in which they live.
Supported by gifts from its Board of Directors, OAR began
operating from its office in Arlington, Virginia, in January.
Its
(continued on next column)
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priorities
in the first six months of 2002 are to introduce OAR to the
autism community, establish its Scientific Council, and lay
the foundation for a long-term fundraising effort consistent
with it's mission and vision.
The Scientific Council will be a cross-disciplinary group
comprised of leading authorities in applied autism research.
The Council will assess the State of the Science in applied
research, identify gaps, and set OAR's corresponding research
priorities and direction. Dr. Peter Gerhardt, formerly at
Rutgers University and now Executive Director of the Nassau
Suffolk Services for Autism/The Martin C. Barell School in
Levittown, New York, will serve as chairman of the Scientific
Council.
OAR's first-year program goals include establishing it's Research
Information Program and funding up to two applied research
studies. The information program will include a community-oriented
web site, www.autismorg.com,
presently in the first stage of development, and the publication
of a Parent's Guide to Research later in the year.
The web site will feature articles of practical interest
written in layman's terms and a forum in which leading names
in applied autism research respond to questions from the community.
The Parent's Guide is intended as a reliable, first
source of information for parents of children just diagnosed.
The studies that OAR plans to fund will focus on life span
and life care issues identified in part through a Scientific
Roundtable drawn from individuals with autism, parents, educators,
and caregivers, in addition to scientific, health, and medical
professionals. The studies ultimately funded will be
selected through a phased solicitation and evaluation process
conducted under the auspices of the Scientific Council.
One of OAR's fundamental objectives is to provide open access
to its information programs and resources, and OAR expects
to be successful enough in raising funds to do that.
While OAR anticipates receiving support from the community,
it isn't going to be a traditional membership organization.
"Autism is a lifelong challenge for the individual and the
family. That's enough for life membership in OAR. The
same goes for those having the commitment to serve the community
as a teacher, caregiver, or other supportive manner." said
Sack. "OAR isn't going to have a dues structure, membership
cards, and annual renewals. That costs money that we
can use for programs, and we won't impose a cost barrier that
might exclude some. We will ask for support once a year, and
let our 'Life Members' place their own value on what OAR does."
For more
information about OAR, please contact Ellen Maidman-Tanner,
Director of Programs and Development at (703) 351-5031.
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