This is by Staff blogger Rick Kolan, Program Officer with the Autism Treatment Network at Autism Speaks.
Organizations strive to please those they serve, often saying that “the customer is always right.” Striving to meet, and if possible, exceed customers’ expectations is a common business goal. To adequately meet these needs, businesses frequently solicit customer feedback on their products and services in the hope of improving performance.
As Autism Speaks’ Autism Treatment Network (ATN) sees its fourth year, we have taken that concept to the next level. We have engaged families at each of our ATN sites to constitute a Family Advisory Committee. Their role? To provide their perspective and that of their children concerning the care and service they receive at our ATN centers. We have also asked them to help map our direction into the future, providing us ongoing advice on the issues that are important to them now and as their children progress.
Since the beginning of the year ATN sites have been selecting parent representatives and alternates willing and available to attend local ATN site meetings, conference calls and the periodic national meetings of ATN leadership and clinicians. The aim is for the committee to help guide ATN policy and planning at the national level while partnering with their local ATN clinicians to enhance care and services at the individual site.
During the week of June 8-10 the Family Advisory Committee (FAC) met in Washington DC to take part in an ATN/AIR-P Steering Committee Meeting. The event marked both the kick-off of the ATN/AIR-P Quality Improvement Collaborative and the inaugural meeting of the FAC.
FAC members met for the first time on Wednesday morning. As representatives introduced themselves around the conference table, it was clear that each brings a unique array of skills and experience. Yet in spite of differences in their backgrounds they immediately found common ground. Each member has a sincere desire to improve care for people with autism, from age toddler to adult, in the belief that the ATN’s commitment to family-centered care is more than simply words.
Even at this initial meeting the FAC provided an important perspective as certain themes repeatedly emerged in the course of open discussion:
- Aging and ASD
- What will happen to my child as he/she gets older? There is plenty of support while they are young, but parents are commonly at a loss as their children get older.
- Continuity of care across the spectrum, as well as across age groups, is needed.
- Transitions – to adolescence and to adulthood—are especially difficult.
- Families need guidance in advising employers on how to support workers on the spectrum.
- Affect on family
- Autism is a family diagnosis.
- Autism affects where families choose to live.
- Transfer of information and knowledge
- Much of the information families get or give is by word-of-mouth
- Messages must be delivered in a way so that parents really understand what certain tests and screenings can and cannot do.
- How do we get information to families that are not directly part our network (families in the “dark spots”)?
- How do we make sure that needed information is available at the primary care and the well-child levels, so that clinicians and families know what to do if the child starts to change?
- The culture at the various resources, including doctors, needs to change; just because a tool kit is out there it doesn’t mean the doctor will use it.
- Care for the whole-person
- Care is fragmented with different sectors dealing with different aspects of a child’s needs: schools, PCP, speech, early intervention.
- Schools as well as doctors need to see the child as a whole being.
- Schools and doctors need to collaborate on the child’s care. It doesn’t work if the doctor says the child should have certain accommodations or support and the school doesn’t work to make that happen.
- A key Challenge
- What can we do when we develop effective therapies or other solutions but families cannot afford them and insurers won’t pay for them?
This first FAC meeting demonstrated the group’s potential for generating practical ideas that will keep the ATN focused on the family as we move forward.
Gastrointestinal (GI) problems affect many children and adolescents with autism spectrum disorders (ASD). Access to rigorously studied treatments for medical conditions such as GI is a major unmet need for families. The Autism Speaks Autism Treatment Network (ATN) provides experts in the care and management of GI problems for these children and engages in clinical research. However, the underlying nature of GI dysfunction in ASD and its relationship to etiology and ASD symptoms are still poorly understood. This information is critical to developing better and more targeted treatments, so both clinical and basic research in this area is needed.
Given the importance this issue, Autism Speaks has recently announced a major Suzanne and Bob Wright Trailblazer Award for research into the biological mechanisms of GI disorders in ASD. (Read a press release about the award). The new study brings together innovative and cutting-edge pilot projects that form a new synergistic and coordinated effort. The connections between irregular bowel movements, gut barrier function, gut bacteria, immune function, and abnormal behavior have as yet not been investigated in ASD. This Trailblazer Study will examine these potential links.
We were privileged to have a chat with one of the key investigators on the study, Dr. Alessio Fasano, pediatric gastroenterologist at the University of Maryland School of Medicine (UMDSOM). He is professor of Pediatrics at UMDSOM and Director of the Center for Celiac Research and for the Mucosal Biology Research Center.
Autism Speaks: How many children with ASD are affected by GI disorders, and what are the most common problems they suffer from?
Dr. Fasano: The impact of GI problems in children with ASD is difficult to quantify since some of the symptoms, like stomachache or abdominal discomfort, cannot be communicated by nonverbal or minimally verbal children. For this reason, the percentage of ASD children suffering from GI symptoms reported in the literature varies from 9% to 90%. The most common GI symptoms include chronic constipation, stomachaches with or without diarrhea, and underwear soiling. Disturbed sleep patterns and nighttime waking also have been described as possibly secondary symptoms to gastroesophageal reflux (GERD).
Autism Speaks: Why is it important to study GI disorders specifically in children with ASD? Don’t we already know how to treat GI disorders in children?
Dr. Fasano: ASD is comprised of a mixed bag of different cases that share the behavioral description typical of ASD. In other words, ASD might be the “final destination,” but the route to get there can vary from individual to individual. Some children may reach their ASD destination through the “GI route,” meaning that it is possible that their GI disorders can lead to ASD in genetically susceptible individuals. By studying GI disorders specifically in children with ASD, we are not simply trying to develop methods for a better management of GI symptoms. Rather, we have a much more ambitious goal: We are trying to understand the underlying physiology of ASD; we are trying to “walk the same route” that these children took to arrive at their ASD “final destination.” By doing so, we hope to help them turn around and walk back from that ASD destination.
Autism Speaks: Please describe the study briefly in your own words.
Dr. Fasano: We believe that a few things are key ingredients of the ASD recipe: 1) Genetic predisposition (as suggested by twin studies); 2) Environmental triggers (nutrients, metals, additives, oxidants, to name just a few); and 3) An impaired gut barrier (leaky gut). Our studies will attempt to connect the dots among these three elements by 1) establishing whether the composition of intestinal bacteria in children with irregular bowel movements is different in ASD and non-ASD children and 2) whether this difference activates specific metabolic pathways leading to an immune response causing inflammation and, consequently, behavioral changes in genetically susceptible individuals. We will integrate our clinical studies in ASD children with a mouse model of autism, not only to validate our clinical findings but also to explore the possibility of specific interventions to modify the gut bacteria in order to alleviate the ASD-related behavior.
Autism Speaks: If our ultimate goal is to find appropriate treatments for GI disorders in children with ASD, why spend so much effort on studying the biology of the GI dysfunction?
Dr. Fasano: It is my humble opinion that a better understanding of the biology of GI dysfunctions that afflict many ASD children is the key to unbundling the complicated path that brought them to ASD. By answering some of these fundamental questions, we can follow the “bread crumbs” that they left behind during the journey toward their ASD final destination.
Autism Speaks: What are the top three things that we will be able to learn from the study?
Dr. Fasano: We will be able to answer the following three fundamental questions:
- Is there a specific composition of “bad bacteria” that can lead to a leaky gut and inflammation, and consequently, to ASD in genetically predisposed children?
- If this is the case, do these bad bacteria activate specific metabolic pathways so that we can search for metabolites that can be used as biomarkers (i.e., red flags) indicating that they embarked upon a journey that led to ASD?
- Can we manipulate the bacterial composition in the gut of children with GI disorders in order to correct the leaky gut and inflammation (by monitoring the disappearance of the metabolic biomarkers) and consequently, improve their behavior?
Autism Speaks: What are some signs that families and their doctors can look for if they think a child has a GI problem?
Dr. Fasano: Besides the obvious signs and symptoms (diarrhea, constipation, and underwear soiling), specific behaviors may point toward GI problems, including vocal behaviors (screaming, frequent clearing of throat, tics, swallowing, sighing, whining, moaning, etc.), motor behaviors (unusual posture, pressure on the belly, wincing, constant eating, gritting teeth, etc.), and/or changes in the overall state (sleep disturbances, non-compliance with requests that typically elicit proper response, increased irritability, etc.).
Autism Speaks: What can families do now if they think their child has a GI problem?
Dr. Fasano: If GI problems are suspected, families should be referred to a pediatric GI specialist familiar with ASD-related GI disorders. One thing to avoid is undertaking any conventional or unconventional remedy to solve their child’s GI issues without medical advice. Any intervention will complicate the interpretation of the underlying GI problems and, therefore, complicate the proper management needed to alleviate the child’s discomfort.
How much are behavioral and medical treatments costing your family? These costs, and the fact that many therapies used to help individuals with ASD do not have strong scientific support of their effectiveness, are the subjects of a six-page feature article in the October issue of Scientific American.
In the article, author Nancy Shute reviews the myriad therapies that are frequently used by families in search of help for autism’s challenging symptoms. One therapy with consistent evidence-based support through randomized controlled clinical trials is early intensive behavioral therapy therapy. As the article noted, a study published in Pediatrics in November 2009 and led by Autism Speaks’ Chief Scientific Officer, Geraldine Dawson, Ph.D. underscores the benefit for intensive early behavioral intervention in improving the outcomes of young children on the spectrum. Unfortunately this type of intervention can cost families over $33,000 per year and that is not quite half the total costs incurred by families. A Harvard School of Public Health report places the average total medical and non-medical costs of autism at approximately $72,000 per year.
Autism Speaks was highlighted several times in the article. First, the substantial contribution of private foundations to funding autism research was noted– $79 million in 2007. Second, an analysis of Autism Speaks’ research investments showed that about 27% of our research funding went to investigating treatments. The search for causes received 29% and basic biology received 24%, with the remaining 9% of funding going to research to improve diagnosis.
Finally, two clinical programs of Autism Speaks were featured. The Autism Treatment Network (ATN) was highlighted for its one-of-a kind registry of children on the autism spectrum and the various medical conditions that accompany autism such as sleep disturbances and gastrointestinal disorders. The ATN enables network clinicians to identify best practices in medical care for autism. These practices are released as published guidelines for used by practitioners everywhere. The Autism Genetic Resource Exchange (AGRE) was also featured along with one of the founding scientists and ongoing advisors, Daniel Geschwind, M.D., Ph.D. As we learn more about the genetic risk for ASD, this registry of families with at least two affected children, becomes an increasingly important resource for scientists and clinicians. AGRE families participate in multiple surveys, provide samples for genetic analysis and creation of cell lines that can be shared with other researchers seeking to understand the biology of autism and evaluate new treatment possibilities.
Now, back to the $72,000 question. Autism Speaks is in a unique position with its focus on science and research in conjunction with a strong government relations team. Easing the financial impact of autism requires insurance reform, which is underway in many states. However, we need treatments that have withstood the rigors of scientific testing to put forth for insurance coverage. The successful interplay between scientifically-validated treatments and insurance policy is a long and arduous road but one that Autism Speaks is uniquely poised to travel.
A boy and his dog: After being kept out of Columbia school, Carter and Corbin are thriving in Fairview (Fairview Heights, Ill.)
There have been no outbreaks of allergic reactions, no wild, uncontrollable children disturbed by a dog at school and no issues with the dog going to the bathroom in the school hallways. Read more.
Autism law a personal victory for L’Italien (Andover, Mass.)
Rudy Hall was reading at a level several grades higher than his public elementary school classmates but struggling to adjust socially. By the second grade, his parents made the difficult decision to send him to a private school. Read more.
FDA warns maker of product used as alternative autism treatment (Chicago Tribune)
A product promoted to parents of children with autism is not a harmless dietary supplement, as claimed, but a toxic unapproved drug that lacks adequate warnings about potential side effects, including hair loss and abnormalities of the pancreas, the U.S. Food and Drug Administration has warned in a letter to its maker. Read more.
Business community receptive to autism center fundraising effort (Naperville, Ill.)
For Kim and Randy Wolf, founders of the Turning Pointe Autism Foundation, battling autism is more than just a way to give back to the community. It’s personal. Read more.
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:
- 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.
- 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.
- 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).
- 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
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.
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.
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
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”
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.
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
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.