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Updates from the Autism Treatment Network Registry: What Do We Know About Medical Issues in Autism?

May 24, 2010 3 comments

Guest Blogger: Nancy Jones, Autism Speaks ATN/CTN program director

Since its inception, IMFAR has been pivotal in promoting interest in autism research and disseminating findings. These have included findings from treatment studies and interdisciplinary research networks such as ACE, STAART and CPEA. The Autism Treatment Network (ATN) is a unique network that seeks to improve care for families and can serve as a platform for research. The ATN maintains a patient registry that had grown to over 2100 children who are seen for clinical care at the 14 ATN centers across the U.S. and Canada

The ATN reported new findings from its database on the use of psychotropic drugs, use of complementary and alternative medicine approaches, sleep and GI disorders. On Saturday, the ATN led an Invited Educational Symposium on medical co-morbidities. Chaired by Autism Speaks vice president of Clinical Programs, Clara Lajonchere, the panel featured presentations by George Fuchs, M.D. (GI specialist from UAMS; chair of the GI committee), Beth Malow, M.D. (sleep specialist from Vanderbilt University, chair of the sleep committee), Sarah Spence, M.D. (NIMH neurologist and external advisor to the ATN) and ATN Medical Director Dan Coury, M.D.

(View study abstracts and search “ATN” to find the four posters/presentations, learn more about the educational symposium and to see other work based on data from individual ATN sites.)

There are a number of key themes that emerged from the discussion of the findings:

  1. Rates of GI dysfunction (45%), sleep problems (65%), and psychopharm use (27%) in ASD from the ATN database are consistent with previous research and reports from clinical practice. This provides further confirmation to the need to continuing pursuing treatment and care standards for the issues.
  2. The diagnostic and treatment algorithms  (“decision trees” to guide physician diagnosis and treatment decisions) that are currently being piloted in the ATN will become the basis for guidelines that can be shared broadly amongst treating physicians, in partnership with professional medical societies. This could be a model for other developmental disorders.
  3. While not a research network, the ATN is poised to address research directly relevant to clinical care and treatment. Dr. Coury described six on-going studies including a randomized controlled trial of a sleep intervention, a large scale study of nutritional status, and recently launched studies on iron status and metabolism, bone density in children with ASD, the relation of sleep and psychiatric comorbidities, and identification of a specific metabolic disorder (creatine deficiency).
  4. In all the areas, there is still a great need for additional evidence to support the development of evidence-based standards. But findings to date help us several ways:
    • Presentations of these findings at meetings like IMFAR and at professional meetings such as NASPGHAN (GI), SLEEP, and the Pediatric Academic Society are helping raise awareness about these issues, and are informative for specialists with little knowledge or experience caring for children with ASD.
    • They also guide us towards key areas to pursue to support improvements in treatment and care: characterizing the nature of these medical disorders as they manifest in children with ASD; conducting large controlled trials of single treatments;  doing comparative effectiveness research to determine relative effectiveness of different types of treatment,  taking advantage of large datasets (such as ATN as well as genetic databases); disseminating our best evidence to the practicing physician community.

There is great hope in what can be done through the continued collaboration of clinicians, medical specialists, researchers and families. As Dr. Coury remarked, “We may face challenges, but the ATN is currently the only bi-national, multi-site care network of this type for autism. The power of this network is its members – not just the member hospitals and clinicians, but also the family and professional communities to which they are connected.” The contribution of each of our partners is essential to ensuring that top of the line care and the utmost respect is always given to ATN patients.

To read complete coverage from IMFAR, please visit http://www.autismspeaks.org/science/science_news/imfar_2010.php

Categories: Science Tags: , , ,

Autism in the News – Wednesday, 05.12.10

Recent Announcements Suggest Cellceutix Is Well Positioned With Autism Compound; Pfizer and Novartis Announcements Indicate Interest in Autism by Major Companies (Beverly, Mass.)
Cellceutix Corporation, a developer of small compounds for the treatment of cancer, autism and inflammatory diseases, believes that recent announcements by major pharmaceutical companies support its strategy of developing a novel compound to treat autism spectrum disorder. Read more.

Health care law may help families with autism costs (Plano, Texas)
The health insurance overhaul passed this spring came as a relief to parents of autistic children, many of whom spend thousands of dollars out of pocket for treatments that no one else will cover. Read more.

Police Asking For Help in Finding Missing Autistic Man (Los Angeles, Calif.)
Police are asking for help in finding a 23-year-old man affected with autism and missing for almost a week. Read more.

Constant vigilance, unconditional love (Howell, N.J.)
Fifteen-year-old Sean Walsh paces in a robotic loop around the lower level of his family’s Camelot Drive, Howell, home. He circles the table in the family’s great room, pauses by his sister Shannon, then punches her in the head. Read more.

Pittsburgh Firefighter Prepares For Deployment (Pittsburgh, Penn.)
As a captain in the Pittsburgh Fire Bureau, Jeff Morris runs a tight ship, constantly drilling his firefighters at the No. 17 engine house in Homewood to be ready for any eventuality. Read more.

Mystery Surrounds Father & Son’s Death (Phoenix, Ariz.)
New information about a father and son who were killed in a car crash has some asking — could they have been rescued? Read more.

How the Autism Treatment Network Helped My Son

May 10, 2010 27 comments

This is a guest post by Judith Ursitti. Judith is Regional Director of State Advocacy Relations at Autism Speaks and has been involved in advocacy since her son Jack’s autism diagnosis almost five years ago.

By now Jack and I had grown accustomed to the routine.

You hear of an excellent doctor. You absolutely must get in to see them. You call to make an appointment. Wait for months and months and months. Finally get there. Sit in the lobby, clipboard on your lap, writing down medical history and group i.d.’s.

Jack screams for a few moments as you wait. People stare. We follow the nurse to the back. Answer questions. Show said doctor that you are a pro at shouldering the reality of it all.

Chin up. Head home.

Empty handed…

Not quite two years ago, Jack and I had another one of what I thought would be one of those appointments. One filled with all the can’ts and doesn’ts..

But this was our first visit to an Autism Treatment Network (ATN) site.

I picked Jack up early from school that day and we made the appointment on time. We sat in the lobby of the LADDERS Clinic with the clipboard. Jack screamed for a few minutes and then bounced up on down on the chair by the window.

And then the nurse led us back.

And we met Dr. Margaret Bauman.

And Dr. B was enamored.. “This guy is different!” she declared.

She drilled me with questions, which I answered rather typically I thought. But Jack’s behavior set the tone. He loved Dr. B. He flirted with Dr. B.

We spent well over hour with Dr. B. She didn’t just focus on his deficits.  True, he was nonverbal.  True, he wasn’t pointing yet.

“His social referencing… it’s beautiful!” she declared.

She prodded him patiently from head to toe.  Took notes.  Contemplated what might be going on with him.  Why he wasn’t talking to us.  Why his autism remained so severe.

And then she gave me a plan.  (I’ve learned since then, that’s what they do at an ATN site.  They don’t just think about the brain. They think about the whole body.)

Dr. B. ordered blood work for the routine genetic testing.  But Dr. B also wanted to make sure Jack wasn’t having G.I. issues, so she referred us to the ATN gastroenterologist.  Allergies can really be an issue for kids with ASD, so she referred us to their allergist.  We discussed sensory issues.  Since he was nonverbal, we talked about different types of augmentative communication devices.  She talked to me about Jack’s occasional sleep issues and we devised a plan to address them.

I must confess that at that very moment, as we worked on Jack’s treatment plan, I allowed it to creep in. That provocative, luxurious sensation called

Hope.

I’ve always felt so connected to Jack. Engaged. Sometimes it’s hard to for others to see, but there is a sparkle there.

Normally when Jack is being evaluated or examined, we only hear words like “challenged” or “severe.”

But Dr. B didn’t use those words. To the contrary, she recognized the sparkle right away.

As I pushed the glass door open and we walked out into the parking lot, a fistful of lab-slips in-hand, I felt a new spring in my step.

Careful, I thought to myself … Remember, the Dr. B really doesn’t have any answers.

I elected to savor the moment.

Jack smiled and jumped into a puddle, giggling as we headed to the car.

Two years later, I’m happy to report that Jack remains a patient at LADDERS.  He started talking to us about six months ago.  His favorite phrase at the moment: “No way…”

The ATN (an initiative of Autism Speaks) is the nation’s first network of hospitals and physicians dedicated to developing a model of comprehensive medical care for children and adolescents with autism. The ATN offers families care from doctors highly experienced in helping individuals with autism and providing treatment for associated conditions such as gastrointestinal and sleep disorders. ATN doctors are dedicated to finding better ways to manage the health of children with autism and sharing their increasing knowledge across the wider medical community. In particular, the ATN is dedicated to developing better ways to identify, manage and treat the physical health conditions of children with autism. And as treatments for these conditions become better defined and recognized, it is the aim of the ATN to see insurers routinely recognize the autism diagnosis and cover physical health treatment.

“Rest assured, you have the attention of the President and the White House”

“Rest assured, you have the attention of the President and the White House”
My first meeting as a public member of the IACC

By Geri Dawson, Chief Science Officer

Last Friday was my first meeting as a public member of the Interagency Autism Coordinating Committee (IACC). It was a particularly momentous meeting for the IACC because, for the first time, Kathleen Sebelius, Secretary of the Department of Health and Human Services (DHHS), attended the meeting along with two colleagues from DHHS, Howard Koh, Assistant Secretary for Health, and Henry Claypool, Director, Office on Disability. In addition, two representatives from the White House, Michael Strautmanis, Chief of Staff to the Assistant to the President for Intergovernmental Relations and Public Engagement, and Kareem Dale, Special Assistant to the President for Disability Policy, attended the meeting. Moreover, Francis Collins, Director of the National Institutes of Health, addressed the IACC. It was an auspicious beginning to my experience on this committee, to be sure.

The Secretary began by welcoming five new members to the IACC, which included Gerald Fischbach from the Simons Foundation, Marjorie Solomon from the MIND Institute at UC Davis, Ari Ne’Eman from the Autism Self-Advocacy Network, Denise Resnik from the Southwest Autism Research and Resource Center, and me, representing Autism Speaks. Secretary Sebelius began by telling the committee members that we “need to leverage all of our assets” and “work together across all agencies” to address the “alarming increase in autism rates” as well the need for “top notch research and services.”  She promised that she will be taking very seriously the recommendations that come from the IACC. She told the committee, “Rest assured, you have the attention of the President and the White House.”  Kareem Dale reiterated these themes, remarking that the White House’s goal and mission are to give autism issues the “highest level of attention.” 

These encouraging remarks were followed by those of Dr. Collins, who also previously served as the Director of the NIH Genome Institute and the Human Genome Project. He began by stressing the need to understand the causes of autism and ways of preventing and treating this challenging condition. “I get the sense of urgency,” Collins remarked, a point he said was especially made clear to him during an earlier meeting he held this year with parents and members of autism advocacy groups. “Parents are never happier than their saddest child,” he remarked, “and if we can help with our resources, that’s what we want to do.”  He noted that the IACC is distinguished among other government committees by its membership and activism, a fact that reflects the passion and urgency of the autism community. Dr. Collins shared his enthusiasm for the important role of genetics in the discovery of causes and treatments for autism, noting in particular, the exciting results of the Novartis clinical trial that was featured on the front page of last Friday’s New York Times. He stated that he didn’t think that the whole story is DNA, however, and that environmental factors and their interaction with genetic factors play key roles in understanding the causes of autism. In this regard, he described the National Children’s Study, a huge NIH effort to follow 100,000 children from conception through adulthood to discover how environmental exposures are influencing children’s health outcomes. He explained that autism is one of the stronger reasons for investing in this expensive effort. He also noted that research on behavioral interventions for ASD continue to be important. The necessity to avoid conservatism in the types of grants NIH funds, especially during hard economic times, was highlighted. Collins encouraged “out of the box” ideas that can open new perspectives and directions for autism research. He ended by again expressing his awareness of the great suffering that is experienced by many people with autism spectrum disorders and their families, ending with a quote from Winston Churchill – “If you are going through hell, keep going.”  “Let’s all keep going,” he urged the IACC members, “because on the other side, there will be more understanding and more hope.” 

I had the pleasure of giving the first talk after Dr. Collins. I reported on the activities and achievements of Autism Speaks’ Autism Treatment Network (ATN). I described the goals of the ATN, which include improving access and quality of medical care for children with ASD, developing evidence-based treatment guidelines, providing clinician training in the medical treatment of ASD, and conducting research on medical treatments. I described the network of 14 academic centers that comprise the ATN, which provides care for over 5,000 children (with over 2,000 now part of the ATN patient registry). Based on data collected through the registry, I described the common kinds of medical issues that many children with ASD face, including GI problems, sleep disturbances, neurological conditions, among others. I also described the vision for the ATN, which is to increase the number of centers nationwide, improve quality of care through training and guideline development, and provide empirical support for novel and effective treatments for ASD. After my presentation, several people remarked that they were not previously aware of the extent to which medical conditions affect the quality of life for individuals with ASD. To read more about the other presentations at last Friday’s IACC meeting, click here.

It is an honor to serve people with autism and their families on the IACC. I will do my best to represent all those who are suffering because of autism. My first charge will be to do everything I can to persuade our government to keep the promises made at Friday’s meeting of the IACC.

What Does Genetics Have to Do with Treatment?

March 15, 2010 1 comment

Finding appropriate treatments for autism is a challenge for families and clinicians alike. While behavioral treatments are an effective mainstay of therapeutic approaches, many individuals with autism benefit from the addition of medicinal interventions, particularly for problem behaviors, severe self-injury, and disruptive repetitive behaviors. A major impediment to finding effective treatment regimens is the fact that individual responses to the same medicine can vary greatly due to genetic background. Finding the most effective dose with the fewest side effects means slowly trying various doses, and possibly having to switch medicines. This is not only a challenge for the physician, but is also a confounding factor in large-scale clinical trials that aim to determine the overall effectiveness of a medication.

5|25: Celebrating Five Years of Autism Science Day 23: Gastroenterology consensus recommendations provide recognition of the need for specialized approaches to GI problems in children with autism

February 23, 2010 1 comment

In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our 23rd item, Gastroenterology consensus recommendations provide recognition of the need for specialized approaches to GI problems in children with autism, is adapted from a 2009 press release. 

Gastrointestinal (GI) problems are a commonly expressed concern of parents of children with autism spectrum disorders (ASD), but families have often found it difficult to find appropriate care for these issues. In December 2009, a consensus statement and recommendations for the evaluation, diagnosis, and treatment of gastrointestinal disorders in children with ASD were published in Pediatrics. These recommendations are an important step in advancing physician awareness of the unique challenges in the medical management of children with autism and will be a prelude towards the development of evidence-based guidelines that will standardize care for all children with ASD. The reports highlighted the crucial need for information to guide care, and emphasized the critical importance of fostering more research in this area, including genetic research, to support the development of these guidelines.

“The Pediatrics paper represents long-sought recognition by the mainstream medical community that treatment of GI problems in children with autism requires specific and specialized approaches,” reacted Dr. Dawson. “Autism Speaks has been actively engaged in the study of GI problems associated with children with autism, working toward enhanced medical community awareness for over five years through its research agenda and the Autism Speaks’ Autism Treatment Network (ATN). Dan Coury, M.D., ATN medical director, commented, “We are delighted to see the publication of important information that can support clinicians and caregivers in providing better care for children with autism, particularly with GI concerns, as parents unfortunately very often find it difficult to identify physicians who have an understanding of these issues and are able to provide appropriate medical care for their children. GI and pediatric specialists from six of the ATN sites participated in the forum and in the development of these recommendations, which shows the power of interaction among the communities and individuals dedicated to this problem. Autism Speaks is already engaged in the crucial next step which is to move beyond these consensus-based recommendations to develop evidence-based clinical guidelines.” In addition to development of evidence-based clinical guidelines for GI issues, the ATN is also currently working on evidence based clinical guidelines for medical management of sleep, and neurologic disorders associated with autism. “Delivery of evidence-based clinical guidelines will serve as excellent opportunities for future training and education of physicians,” added Dr. Dawson.

The consensus statement highlights several important themes, the first emphasizing that GI problems are a genuine concern in the ASD population and that these disorders exacerbate or contribute to problem behaviors. The need for awareness of how GI problems manifest in children with autism and the potential for accompanying nutritional complications and impaired quality of life were also emphasized.

In the second paper, the authors make consensus recommendations providing guidance on how current general pediatric standards of care that can and should be applied for children with ASD. George Fuchs, M.D., a co-author on the two papers and chair of the ATN GI Committee remarked, “The recommendations provide important guidance for the clinician to adapt the current practices of care (for abdominal pain, chronic constipation and gastroesophageal reflux) for the child with autism. The recommendations from the Autism Forum meeting complement the ATN’s on-going work to develop evidence-based, ASD-specific guidelines. The ATN is currently piloting newly created guidelines and monitoring their effectiveness. We anticipate this data will contribute to an evidence-based foundation to support best practices for GI problems in ASD.”

Autism Speaks is committed to the sustained support of efforts that address co-morbid medical conditions in the ASD population. In recognizing that there’s not enough evidence in any GI area and more research is needed, the Pediatric papers reaffirm the importance of the recent November 2009, Autism Speaks sponsored symposium and workshop on Gastrointestinal Disorders in Autism Spectrum Disorders. The symposium and workshop represented an important partnership with the American Academy of Pediatrics, and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) – the largest professional society for GI and nutritional specialists, and a professional authority for the development and implementation of pediatric GI guidelines. The symposium raised awareness and provided the latest scientific information to an audience of 168 researchers, clinicians, and pediatric GI and nutrition specialists, most of whom had limited expertise in autism. The symposium was followed by a workshop that brought together a diverse group of experts in GI, nutrition, pediatrics, pain, ASD, and biological research. Recommendations were developed for an expanded and targeted research agenda for the field that will address current gaps in the knowledge base and aim to advance evaluation and treatment of ASD-GI disorders. Proceedings from the meeting are scheduled to be published in 2010. A unique and important element in both the Symposium and Workshop was the inclusion of parents of children with ASD.

Did you know?:  Autism Speaks’ Autism Treatment Network (ATN) is developing  evidence-based guidelines that will provide specific guidance to physicians on how to address a number of medical issues of concern for children with ASD.  The ATN is currently piloting a GI guideline algorithm (decision flow charts) for the assessment and treatment of constipation, and a sleep guideline algorithm for insomnia. The ATN is also working on guidelines in the areas of psychopharmacology and neurology. For more information on ATN guideline activities, please see www.autismspeaks.org/airp. 

On the Release of the GI Consensus Statement and Recommendations in Pediatrics: The ATN’s role in Moving from Consensus to Evidence

January 6, 2010 Leave a comment

By George J. Fuchs, M.D.

The release today of the consensus statements and recommendations for the evaluation, diagnosis and treatment of gastrointestinal (GI) disorders in Pediatrics provides much needed guidance to clinicians and practitioners involved in the care of children with autism spectrum disorders (ASD) in the recognition, evaluation, and management of abdominal pain, chronic diarrhea, chronic constipation and gastroesophageal reflux disease. Given the difficulties some children with ASD experience in communicating pain or discomfort, these recommendations mark an important step to understand and characterize the manifestation of gastrointestinal complaints in these children. They also serve to bring order to the diagnostic and treatment procedures for parents and physicians. While the expert recommendations break new ground, we anticipate that they are a prelude towards the development of evidence-based guidelines that will standardize care for all children with ASD.

Several of the authors on these two papers, including myself, are pediatric gastroenterologists as well as active members of the GI Committee of Autism Speaks’ Autism Treatment Network (ATN). Through the ATN GI Committee and the federally-sponsored Autism Intervention Research Network on Physical Health (AIR-P), the ATN is turning consensus-based recommendations into ASD-specific clinical evaluation and treatment algorithms. These will be based on data (where it exists) and guidelines for pediatric GI conditions for neurotypical children that we modify for children with ASD, supplemented by expert opinion that supports the effectiveness of the recommended procedures.

The ATN is working closely with the National Initiative for Children’s Healthcare Quality (NICHQ) (http://www.nichq.org/), an organization recognized as expert in pediatric guideline development. Together, we are in progress of piloting of the first developed algorithm which is for the evaluation and treatment of constipation at several ATN member sites. The data we collect from this pilot work and subsequent broad implementation across ATN sites will eventually contribute to the development of evidence-based guidelines. The ATN is a highly unique resource in this effort, in part because of the ATN Registry which collects and analyzes data on over 1700 ATN children with ASD.

The eventual development of ASD-specific evaluation and treatment algorithms for GI disorders and other conditions that trouble children with ASD means that physicians and other care providers who use these algorithms will have greater clarity on the diagnosis, evaluation and treatment of these conditions. For families, these algorithms will provide confidence that a chosen course of action is based on careful testing in clinical practice and greatly increase the likelihood of successful identification and management of their children.

For the time being and until the availability of the ATN evaluation and treatment algorithms, parents are urged to let their children’s doctors know about the release of the important consensus statements and recommendations on-line in Pediatrics so that that they might be applied to their child’s care.

George J. Fuchs, M.D.Dr Fuchs is Professor of Pediatrics, University of Arkansas for Medical Sciences and Medical Director, Gastroenterology, Arkansas Children’s Hospital. He is a member of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition, (NASPGHAN), and is the Chair of the Gastroenterology Committee of the Autism Treatment Network.

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