Autism Speaks’ Autism Treatment Network (ATN) has competed successfully for another round of federal funding—$12 million—to continue to serve as the Autism Intervention Research Network on Physical Health (AIR-P). Read more in science news at autismspeaks.org…
The American Academy of Pediatrics Pediatric Care Online is hosting a FREE webinar on autism spectrum disorders (ASD). This webinar will be presented by Autism Speaks Autism Treatment Network (ATN) clinician Patricia Manning-Courtney, MD, FAAP, associate professor of clinical pediatrics, pediatric developmental specialist, and medical director of The Kelly O’Leary Center for Autism Spectrum Disorders, our ATN site at the Cincinnati Children’s Hospital Medical Center.
Children with ASD are being recognized and diagnosed in increasing numbers. Early identification and treatment is key to maximizing outcome. Parents of children with ASD benefit tremendously from an informed and supportive Primary Care Provider. This webinar will focus on:
- Screening and diagnosis recommendations
- Overview of treatment approaches, including medication
- Review of current controversies
To view the webinar on Monday, September 19, please use the following URL and password:
- Webinar URL: www.talkpoint.com/viewer/starthere.asp?Pres=136861
- Password: pco0919
Additional information and resources related to autism can be found on the Autism Information page of the National Center for Medical Home Implementation Web site.
I hope you enjoy our report on Science Department Monthly Highlights, focusing on major scientific advances and new grants funded by Autism Speaks, as well as the science staff’s media appearances and national/international meetings. Given the size and scope of our science department, we aren’t attempting a comprehensive report here. If you are interesting in knowing more about activities such as tissue donations, participation in clinical trials, and our research networks (e.g. Baby Sibs Research Consortium), please contact me and our science communications staff at firstname.lastname@example.org. Enjoy!
Best wishes, Geri
The dog days of August were anything but quiet for the science department. Highlights included the release of the first major report of the Autism Speaks Baby Siblings Research Consortium. The world learned that autism recurs in families at a much higher rate than previously estimated. For perspective and guidance, the national media turned to our director of research for environmental sciences, Alycia Halladay, PhD. Over the course of 24 hours, Alycia made appearances on CNN, MSNBC, and NPR’s “All Things Considered;” was interviewed by reporters for numerous major papers, news services, and magazines; and even found time to answer parents’ questions via live webchat (transcript here)—the first of an ongoing schedule of live chats to be hosted by science department leadership. Geri Dawson, PhD, our chief science officer, wrote a blog that focused on what the new findings mean for parents.
The science department also hosted a two-day Autism and Immunology Think Tank at the New York City office, with some of the nation’s leading thought-leaders in immunology and inflammatory diseases lending fresh insights to aid our planning of research exploring the immune system’s role in autism spectrum disorders. Glenn Rall, PhD, Associate Professor, Fox Chase Cancer Center and member of Autism Speaks’ Scientific Advisory Committee, and Alycia organized and led the meeting which was attended by senior science staff and experts who study the role of the immune system and inflammation in multiple sclerosis, Parkinson’s Disease, Alzheimer’s Disease, Multiple Sclerosis, inflammatory bowel diseases, and brain development.
Here, then, is the science department’s abbreviated rundown of August highlights:
Major scientific publications published this month supported with Autism Speaks funds and resources
* Recurrence Risk for Autism Spectrum Disorders: A Baby Siblings Research Consortium Study. Ozonoff S, Young GS, Carter A, et al. Pediatrics. 2011 Aug 15. [Epub ahead of print]
* Coming closer to describing the variable onset patterns in autism. Dawson G. J Am Acad Child Adolesc Psychiatry. 2011 Aug; 50(8):744-6.
* Mortality in individuals with autism, with and without epilepsy. Pickett J, Xiu E, Tuchman R, Dawson G, Lajonchere C. J Child Neurol. 2011 Aug;26(8):932-9.
Autism Speaks science staff in the national media
* Alycia gave perspective and guidance related to the results of the Baby Siblings study in The New York Times, Associated Press, USA Today, CNN Health, Time, Healthday, Huffington Post and WebMD; and made related appearances on CNN, MSNBC, and NPR’s “All Things Considered.”
* VP of Scientific Affairs Andy Shih was interviewed by the Philadelphia Inquirer, Parents Express and Education Week about Hacking Autism.
* Alycia was interviewed by Fit Pregnancy about studies on prenatal and early post natal risk factors. She was also interviewed by About.com regarding proposed changes in autism-related entries of next year’s much-anticipated DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, fifth edition).
* Andy and Michael Rosanoff, associate director of public health research, were interviewed by Newsweek for a story about the Minnesota Somali prevalence study.
* Geri was interviewed by Parents magazine for a story about early screening and early intervention.
* VP of Translational Research Robert Ring was interviewed by Discover magazine for a story on the use of mice models in autism research.
* Geri was interviewed by the prestigious journal Lancet regarding autism clusters in California.
* Andy was interviewed by CBS 60 Minutes on innovative autism technology.
* Geri and Simon were interviewed by ABC News on the use of avatars in autism treatment.
* Autism Speaks Global Autism Public Health Initiative continued to generate world headlines, including this Wall St Journal interview, around its Conference on Autism Spectrum Disorders and Developmental Disabilities in Bangladesh and South Asia, which resulted in the adoption of the “Dhaka Declaration” presented to the United Nations.
* On August 15th, the science department hosted its first live webchat, with Alycia fielding questions related to the widely covered release of the Baby Siblings Research Consortium’s findings of unexpectedly high rates of autism recurrence in families. Nearly 1,000 live viewers joined the chat and submitted 299 questions and comments. This is the first of an ongoing series of live web chats by senior science staff.
Science leadership at national and international meetings
* Geri, Andy, Rob, Michael, and VP of Scientific Review Anita Miller Sostek attended the treatment grant review meeting in San Francisco, Aug 1-2. 86 applications focusing on developing and evaluating new biomedical and behavioral treatments were reviewed by a panel of scientific experts and stakeholders. Ann Gibbons, executive director, National Capital Area, offered her expertise as a consumer reviewer on the panel.
* Michael attended the World Congress of Epidemiology, in Edinburgh, Scotland, Aug 7-11. This year’s theme was “Changing populations, changing diseases: Epidemiology for Tomorrow’s World,” and the International Clinical Epidemiology Network Team, which Autism Speaks co-funds, presented on an array of research efforts. In addition, Danish researchers presented data on the increased risk for autism in children with low birth weight and other birth-related conditions.
* Geri and Alycia hosted an Autism and Immunology Think Tank, Aug 22-23, in NYC (described above).
*The Autism Treatment Network leadership held its semi-annual planning meeting in the NYC offices Aug 23-24, with Geri, Clara, Rob, Dr. Dan Coury, Medical Director, ATN, Jim Perrin, MD, Director, Clinical Coordinating Center, ATN, and Nancy Jones attending.
* The science department senior leadership and Mark Roithmayr held a strategic planning meeting with members of its scientific advisory committee in the NYC offices, Aug 24. Among the advisors attending this meeting were Joe Coyle, MD, Chair, department of psychiatry, Harvard Medical School, Gary Goldstein, MD, president, Kennedy Krieger Institute, Steve Scherer, PhD, director, Centre for Applied Genomics, University of Toronto, and Roberto Tuchman, MD, associate professor of neurology, Miami Children’s Hospital.
*On Sunday, August 28th, Geri Dawson presented at the Triennial Conference of the Royal Arch Masons, a group that makes a substantial annual donation to support the work of the Toddler Treatment Network.
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.