ATN�s MISSION
is to create a �gold standard� of medical
treatment that will be made broadly available to physicians,
researchers, parents, policy makers and others dedicated to enhancing
the care of individuals with autism. The organization�s plan features
the creation of five regional �centers of clinical excellence� whose
physicians will provide a full spectrum of state-of-the-art care,
conduct clinical research and mentor talented young trainees.
Such a comprehensive autism treatment program already exists in Boston
at Massachusetts General Hospital (MGH), one of ATN�s founding members.
MGH�s exemplary program is serving as a model for instituting treatment
standards to be applied at other centers.
A second key element of ATN�s plan is the
development of a shared National Medical Database to record the results
of treatments and studies at the regional treatment centers�an approach
that has proven effective in enhancing care among other childhood
diseases.
Why ATN Is Needed Now
A significant segment of the
medical community continues to be reluctant
to treat autistic patients because diagnostic and treatment procedures
for associated medical conditions simply do not exist.
This is due, in part, to the fact that physicians and parents
have traditionally viewed autism as a communication and behavioral
disorder. Thus, treatment has tended to focus
on these aspects of autism, while medical conditions in patients have
not received adequate attention. As a result, too many
individuals with autism continue to suffer from untreated medical
problems.
Diagnostic and Treatment
Challenges
Providing medical care for autistic patients can be
especially challenging, even for the most informed clinicians. Some
autistic patients exhibit behaviors that make careful examination
difficult. Many do not speak and cannot state their discomfort. Those
who do speak cannot always localize pain accurately. Behavioral
disruptions�viewed frequently as conduct typical of the disorder� may in
fact be the only way that a person with autism is able to communicate
their illness.
Failure to
diagnose underlying medical disorders can exacerbate behavioral
disruptions or lead to other serious health problems. A ruptured
appendix or gastric ulcer, for example, can be fatal if undiagnosed. And
significant medical conditions which are not identified may lead to more
serious health issues later in life.
The Urgent Need for
Reliable Criteria
There is cause for hope and expectation. A
number of physicians have met with varying measures of success in
understanding and addressing the medical conditions of their patients
with autism. Further, recent clinical
experience has shown that autistic patients realize greater benefit from
their educational, therapeutic and vocational interventions if their
underlying health conditions have been addressed. Until now,
there has been no broad-based means to validate and promote these
advances, which has slowed progress and prevented exciting findings from
being shared widely.
ATN will fill this
role. The first step is to develop reliable criteria in the form of a
all-inclusive standard of care that will guide physicians in the
identification and treatment of medical conditions associated with
autism. The time for such a standard is long overdue.
How ATN
Plans to Develop New Standards of Treatment
To create the �gold standard� of medical
treatment, ATN plans to establish and support a community of engaged
physicians, clinicians, researchers and families. Working together,
these groups will create and develop effective, broadly available
treatments for individuals with autism. The platform for their work will
be five regional �centers of clinical excellence� that are designed to
provide state-of-the art care for children and teens with autism. The
centers�to be situated in prominent medical institutions now
participating in ATN�s formation�will house a group of leading
researchers and physicians who will collaborate on the development of
comprehensive medical treatment practices for autism, conduct clinical
research and prepare young physician/scientists for careers in autism
treatment and study.
At the outset, ATN will also build a shared
National Medical Database to record the results of treatments and
studies at the regional treatment centers. The database will comprise a
growing body of scientific evidence that is fundamental to developing
reliable treatment criteria. This approach has proven highly effective
in advancing care in other medical conditions such as childhood leukemia
and cystic fibrosis.
At each regional center, patients will
receive comprehensive care, including assessment, diagnosis and
treatment based on �best practice� medical and scientific standards. The
centers will be formed within three years, and their primary goals are
to:
1.
Emphasize identification and
treatment of medical conditions associated with autism;
2.
Provide collaborative
opportunities for careful evaluation of new treatment approaches for
several aspects of autism; and
3.
Develop and disseminate
state-of-the-art guidance for long-term management of autism to health
care practitioners and physicians in training.
To extend its plan nationally, ATN will form
active partnerships with parent groups, federal and state agencies,
professional societies and others to broaden knowledge and awareness of
its mission.
ATN�s Collaborative Approach
ATN began as a joint venture between the
Northwest Autism Foundation in Oregon and MassGeneral Hospital for
Children in Boston. Their initial association concentrated on several
medical issues of children with autism, and in the course of their
studies they found that medical care of people with autism was far less
than ideal. A major part of the problem was the absence of any organized
group devoted to defining a high standard of medical care for autistic
patients.
ATN was foreseen as filling this central
role, and the initial steps in its formation included the recruitment
of a group of distinguished physicians and researchers who would
define the new organization�s mission and goals. Today, ATN includes
health care practitioners from six leading medical centers:
�
Massachusetts General
Hospital - Boston, MA
�
Oregon Health and Sciences
University - Portland, OR
�
Baylor College of Medicine
- Houston, TX
�
University of Washington
Medical Center - Seattle, WA
�
Columbia University
Medical Center - New York,
NY
�
Cleveland
Clinic, Cleveland, OH
A Complement to Basic Research
ATN�s ultimate goal is to benefit the broadest base of
individuals and families possible. In addition to reviewing the best
clinical practices that exist today in the field of autism, ATN�s
leaders will pursue clinical research based on the most promising of
these practices and share this information with peers and appropriate
medical institutions. This practice-based approach will provide an
urgently needed complement to basic scientific research and promises to
have a dramatic impact on the lives of thousands of children and
individuals with autism and their families.
To realize ATN�s potential, significant
resources are needed. The centers will provide the framework for
enhanced care, innovative clinical research and advanced medical
training. Generous support is also needed from parents and other friends
who want to be sure that ATN advances its program without delay.
Exploring Medically
Treatable Conditions
Most financial resources devoted to autism,
including government funding and philanthropy, have supported research
on the underlying biological mechanisms responsible for the disorder.
Relatively little funding has been dedicated to the exploration of
associated medically treatable conditions that may affect the
developmental outcome of individuals with autism. ATN will help foster
increased support for this area of study
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