The Autism Treatment Network Brings Together Leading Physicians And Medical Centers to Improve Medical Treatment for Autism

Strategic Alliance Formed With Cure Autism Now to Accelerate ATN�s Work

SEATTLE � Jan, 2005 � Formation of the Autism Treatment Network (ATN), a national, nonprofit organization designed to support collaboration to improve treatment for autism, was announced today. ATN is the nation�s first network of hospitals and physicians that aims to bridge gaps in knowledge and understanding and improve treatment for individuals with autism.

ATN includes physicians and healthcare practitioners from five leading medical centers that have come together to evaluate the medical conditions present in autism, and provide best practices for their identification and treatment. ATN plans to create treatment guidelines that will be made broadly available to physicians, researchers, parents, policy-makers and others dedicated to enhancing the medical care of individuals with autism.�

Autism is one of the fastest growing childhood disorders in the United States, affecting as many as 1 in 166 children (source: Centers for Disease Control and Prevention). However, treatment and access to treatment for children with autism remains inconsistent across the nation.

�Because of the dramatic rise in autism rates in the United States during the past decade, we have seen increased attention to research and education; however, treatment has not received the same focus and investment,� said Richard Fade, co-founder of ATN. �There are hundreds of thousands of children and families struggling with autism. They face a tremendous challenge, as considerable gaps remain in understanding how best to treat this disorder. This is especially true with regard to medical issues. By establishing collaboration among leading hospitals, ATN will create a better standard of care for autism and help make that care broadly available.�

�ATN represents the start of a cooperative venture to study and create new treatments for autism,� said Dr. Margaret Bauman of Massachusetts General Hospital for Children. �It took focused leadership to bring together the many individual units studying children�s cancers 30 years ago and have them cooperate in studying new treatments. Today there are dramatic improvements in the survival of children with cancers. Many people and programs are doing important research on mechanisms of childhood autism � but so far none have developed a strong collaboration among centers focused on treating medical conditions in a similar way that revolutionized the care of childhood cancer.�

The Autism Treatment Network and Cure Autism Now Announce Strategic Alliance

Cure Autism Now, one of the leading funders of autism research in the United States, and ATN today announced they have entered into strategic alliance to accelerate the work of ATN. The alliance will take advantage of the research capabilities and collaborative protocols that Cure Autism Now has developed over the past 10 years.

�Our achievements over the past 10 years prove that science can be accelerated,� said Peter Bell, CEO and executive director of Cure Autism Now. �Families want more access to treatments that work, and the ATN medical protocol will provide more effective treatment options,� continued Bell, who will sit on the ATN board. �With the establishment of evidence-based treatments, our families will one day have effective treatments available to them within driving distance of their homes.�

�Cure Autism Now is the voice that will connect the treatment approach that ATN develops with the needs of families and children with autism across the country,� said David Humphrey, co-founder of ATN. �The organization has a long and successful track record of leadership in funding research, education and political advocacy. It immediately understood the potential of the collaborative model and the value of our focus on treatment. Cure Autism Now has great knowledge and experience to apply to this effort in addition to its development support. We are very excited about Cure Autism Now�s help and partnership.�

Treatment Experts Form Network

ATN will include regional �centers of excellence,� where physicians will establish state-of-the-art care, conduct clinical research and mentor trainees. The initial treatment approach is based on a comprehensive model employed at Massachusetts General Hospital in Boston (MGH), one of the nation�s most respected programs. Other founding centers in the network include Baylor College of Medicine, Houston; Cleveland Clinic Foundation, Cleveland; Columbia University Medical Center, New York; Oregon Health & Science University, Portland, Oregon; and the University of Washington Medical Center, Seattle.

ATN physicians and clinicians will work to establish common practice guidelines and a database to enable the team to better understand the nature and scope of health issues in autism. Physician conferences will be held to discuss treatment and outcomes related to various medical interventions for individuals on the autism spectrum. Ultimately, ATN hopes to produce treatment guidelines for autism based on credible research and rigorous clinical trials.

Collaborative Approach Supported by Government and Patient Advocacy Leaders

ATN�s mission and model have been well received and have earned the support of professionals, academic institutions, community and advocacy organizations in the field. �Research teams across the United States are focused on the critical work of discovering the underlying mechanisms resulting in autism; that work will be crucial in the future,� said Thomas R. Insel, M.D., director of the National Institute of Mental Health and chair of the federal government�s Interagency Autism Coordinating Committee. �Collaboration, as it is structured and supported through ATN�s model, should improve the quality of treatment and increase awareness of treatment options. We are enthusiastic about this collaborative effort, and we look forward to partnering with ATN to foster greater accessibility of new and better treatments developed through research.�

About Autism

Autism is a complex developmental disability that affects an individual in the areas of social interaction and communication. Autism is a spectrum disorder that affects each individual differently and to varying degrees of severity. Autism affects an estimated 1 in 166 births (source: Centers for Disease Control and Prevention, 2003). This means that as many as1.5 million Americans today are believed to have some form of autism.

About the ATN

Founded in 2004, the Autism Treatment Network (ATN) is a nonprofit organization dedicated to filling the gap in medical care for individuals with autism. Inspired by the success of the Children�s Cancer Network and The Cystic Fibrosis Foundation, ATN�s goal is to create the needed infrastructure so that physicians and researchers can share best practices and treatment protocols, and ultimately raise the quality and availability of proven autism treatments. The network includes the following centers: Baylor College of Medicine, Houston; Cleveland Clinic Foundation, Cleveland; Columbia University Medical Center, New York; Massachusetts General Hospital, Boston; Oregon Health & Science University, Portland, Oregon and the University of Washington Medical Center in Seattle. More information on the Autism Treatment Network is available at http://www.autismtreatmentnetwork.org.

About Cure Autism Now

Cure Autism Now is a nonprofit organization dedicated to promoting and funding autism research and accelerating the pace of scientific progress toward effective treatments and a cure for autism. The organization is one of the leading private funders of biological research in autism, providing more than $20 million for research grants, education, outreach and scientific resources, including the establishment and ongoing support of the Autism Genetic Resource Exchange (AGRE). Cure Autism Now has chapters in Los Angeles, Orange County and San Francisco, Calif., New Jersey, New York City, Chicago, Philadelphia, Houston, Seattle, Maryland/D.C. area, and Honolulu. For more information about Cure Autism Now, please visit http://www.cureautismnow.org.

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Thursday, February 3, 2005

Autism network seeks to improve level of care nationwide
Doctors often don't know how to interact with kids with disorder

By JULIE DAVIDOW
SEATTLE POST-INTELLIGENCER REPORTER

For Tammy Jarbo-Blankenship, keeping her autistic sons healthy means a battle on two fronts: with her boys and with their doctors.

Each trip to the doctor can set off a traumatic cascade of new people, restraints, needles and breathing tubes. The boys must be sedated for almost any exam or procedure.

"If your child starts to act up, the doctors leave the room," Jarbo-Blankenship said.

That's not acceptable, say members of a new national, non-profit coalition of doctors, researchers and parents announced today.

The Autism Treatment Network is the first major initiative aimed at improving medical care for autistic children, who often miss out on the benefits of behavioral therapies because they're suffering from lack of sleep or gastrointestinal pain, say experts.

The network is organized around six autism treatment centers, including the University of Washington Autism Center.

In the past decade, the number of children diagnosed with autism has swelled, but many doctors remain uncomfortable treating kids who can't communicate their symptoms and are prone to violent outbursts in their offices.

The network's goal is to make sure autistic children get the same medical care as other children by establishing guidelines doctors can follow to overcome the hurdles of examining and treating an autistic child.

"We've got a group of non-verbal kids who can't say 'my stomach hurts,' or 'my head hurts,' " said Dr. Margaret Bauman, medical chairwoman of the network and director of a program for children with developmental disabilities at Massachusetts General Hospital.

"We're just saying these kids are kids, too, and they deserve a work up."

The network will also gather data to determine if autistic children suffer disproportionately from any medical conditions. Parents and doctors who specialize in caring for autistic children say gastrointestinal distress, including constipation and diarrhea, and trouble sleeping through the night are common complaints.

An estimated one in 150 children in the United States will be diagnosed with some form of autism spectrum disorder before age 3, according to the network.

Still, the medical needs of children with autism are one of the least studied aspects of the mysterious condition, which was once considered a psychological response to cold, disengaged mothers.

Experts now agree autism is a neurological disorder, which appears to respond well to early diagnosis and behavioral therapy. But those therapies lose their effectiveness if children suffer from distracting medical conditions, said Geraldine Dawson, director of the UW Autism Center.

In frustration, a child who can't communicate pain lashes out. If doctors label the behavior a symptom of autism, they might miss the real problem.

"It could be due to some underlying gastrointestinal distress and once this is treated the child is able to calm down," Dawson said.

With funding from the network, Dawson hopes to beef up the center's medical staff, which now includes two psychiatrists and a developmental pediatrician who sees patients one day a week. She also wants to hire a gastrointestinal specialist and increase the pediatrician's hours.

Jarbo-Blankenship said she rarely encounters a doctor or nurse who knows how to interact with her sons, ages 8 and 10.

"I would have such peace of mind knowing when we walk in that door, they understand," the Kent mother said.

Pepsy Wirth's 4-year-old son, Daniel, was diagnosed with autism last year. When he started having seizures, she went online to seek advice from other parents. Her pediatrician and neurologist told her they'd never heard of a link between autism and seizures, but agreed to look into it.

"It is kind of unnerving when the parent is telling the doctor this is what you have to do and they're going, 'OK,' " Wirth said.

P-I reporter Julie Davidow can be reached at 206-448-8180 or [email protected]

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ASA Supports ATN

Dr. Margaret Bauman of Ladders and Lee Grossman Chairman of ASA

Lee Grossman, Chairman of Autism Society of America greets Dr. Margaret Bauman, Board Member of the Autism Treatment Network at the Society's 35th National Conference.  ASA has endorsed the work of ATN and supports ATN's program to establish a "best practices" medical treatment protocol for medical professionals to use to medically treat individuals with autism.

Dr. Bauman, founder of the LADDERS program at Massachusetts General Hospital for Children and ATN Chairman Richard Fade presented the ATN program to the conference noting that currently no "best practices" medical treatment protocol exists for medical professionals to treat the medical symptoms of individuals with autism.  ATN believes that the establishment of this treatment protocol will go a long way to improving the lives of individuals with the Autism Spectrum Disability.