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Archive for January, 2010

In Their Own Words: Welcome to the Community

January 22, 2010 1 comment

“Is your son on the spectrum?”

The question was slightly jarring to me. My son and I had just walked into a gymnastics class for kids with autism. We had received his diagnosis only three weeks before, and we hadn’t shared our news with anyone except for close friends and family. It was the first time we had been anywhere that was just for kids like mine and I wasn’t really ready to talk to a total stranger about it.

“Yes,” I answered, trying to keep the conversation short.

“Hi, and welcome! That’s my son over there, and my name is Sandy. How old is your son? Do you live in town? How long have you known your son was on the spectrum? What was his diagnosis?”

I really didn’t want to answer her. I wasn’t even sure we belonged at this class, and all I wanted to do was pay attention to my son to see how he was responding to the class. I watched the other kids as they came in – six boys and one girl – and my first instinct was that we were in the wrong place. One little boy was crying, another was spinning in circles, and another one was running in all different directions. My son‘s not like that, I thought to myself. This isn’t us.

And then I looked at my Henry. I watched him hold tightly to his one-on-one helper’s hand as they walked on a low balance beam, but he wouldn’t look her in the eye when she talked to him. I watched him try to run away to jump into the comfort of the sensory foam blocks and become so focused on that foam pit that he couldn’t move onto anything else. I listened to him babble while he swayed back and forth on the rings, and saw the terror in his face when the noise level got up too high. The tears welled up in my eyes. We did belong here. This is the right place for him. We had found a safe place for him to exercise and develop his muscles in an environment that understood his special needs. For so long we had avoided the “regular” gym classes, music classes, and playgroups because of his behavior. No one here was giving me the usual disapproving looks we get when we’re out places and Henry starts to act up.

I took a deep breath and turned to the mom.

“Hi! My son Henry was diagnosed with PDD-NOS a few weeks ago. We do live in town. In fact, I’ve seen your son at the preschool that my son attends. How long has your son attended classes here?”

It took everything I had to have that conversation, but it was such a relief. This other mom was reaching out to make a connection – to find someone else who struggles on a daily basis like she does – something I myself had been desperate to do for weeks and months. I was instantly welcomed into a community of people who “get it.” No one batted an eye when Henry buried himself under the foam blocks at the end of class so he didn’t have to leave. I got comforting looks of understanding from all the parents and teachers when he had a major meltdown leaving the gym, and big thumbs up from everyone when we finally got our shoes on and went out the door. These were moms and dads who shared my daily difficulties of just getting out of the house. Finally we were somewhere that felt like we belonged.

“Will we see you next week?” asked the mom.

“Absolutely,” I replied.

This week’s “In Their Own Words,” is written by Alysia Butler of Hopedale, Mass.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Young Professionals Winter Gala Raises Over $33,000

January 12, 2010 Leave a comment

More than 200 guests attended the AS2YP Winter Gala. Photo by Josh Wong.

NYC celebrity hotspot SL hosted more than 200 young professionals, on the evening of January 7, for the second in the Autism Speaks to Young Professionals (AS2YP) event series, raising over $33,000. The Winter Gala, hosted by event co-chairs Amanda Niederauer and Danny Ryan, offered guests an open bar, delicious appetizers by Abe & Arthur’s chef Franklin Becker and dancing to tunes spun by DJs Caleb Loftus and Nick Russo. The hundreds of guests complemented their fashionable attire, and raised autism awareness, by sporting the Autism Speaks puzzle pin.

The inaugural summer event, held at the Stock Exchange, sold out three days before the event and raised over $40,000. Danielle Yango, who attended both events, commented, “It was so great to be at events where everyone there was inspired by and engaged in the reason for being there – to raise autism awareness and to raise funds for Autism Speaks. Despite twenty-somethings not having a lot of money to spare, the event was filled with people wanting to do and give more. Change and improvement only happen when people take action, and this event is a prime example of people actively participating!”

Another guest, committee member Hallie Elsner remarked, “Despite the frigid temperature in New York City, it was amazing to see how many people made it out to support the first event of the year for AS2YP. It was a great way to kick off 2010!” Caite Kappel, another committee member in attendance, agreed, “It was great to have so many passionate people together in one amazing venue. The event went a long way to promote awareness of the disorder and I was thrilled to hear about all the money that was raised.  I can’t wait for the next event!” 

The event, described as “fun,” “hip,” and “trendy” by the guests in attendance attracted not only people who have a loved one with autism, but people who wanted to learn more about the disorder. Throughout the evening, a presentation on the television screens reinforced the CDC’s most recent findings that 1 in 110 children has autism.

Joshua Feldman, an active supporter of Autism Speaks and an ASY2P committee member  said, “After participating in both Autism Speaks and AS2YP events, I realize the attendees to both are instrumental in the future of autism awareness and research. I think the AS2YP Winter Gala was extremely successful, because while other events may raise more money near-term, this event opened the eyes of tomorrow’s benefactors who can support Autism Speaks and its goals in the future.” 

Event co-chair, Amanda Niederauer, hopes to expand the success of the Young Professionals events to other cities across the country. Amanda said, “I am so happy that the event was such a huge success. With the statistics so drastically increased to 1 in 110 children, our work is even more important. I think we have a terrific thing started with the Young Professionals series, and it is such an honor to be involved in spreading awareness to the next generation of parents.”

Special thanks to our co-chairs, committee members, guests, and sponsors – Manhattan Beer Distributors, Montecastelli Selections, RBS and Alacrity Financial.

Become a fan of AS2YP on Facebook at www.facebook.com/as2yp to stay up-to-date with events and check out event photos by Josh Wong. The AS2YP event series will return to the floor of the New York Stock Exchange this August.

Check out coverage and photos from the event:

CharityHappenings.org

Guest of a Guest

Scene B Seen, llc

What is Causing Autism Prevalence to Increase? – Part 2

January 8, 2010 Leave a comment

This part 2 of a 2 part series is from Michael Rosanoff and Andy Shih, Ph.D. who both work in the Autism Speaks science department. This second post is from Andy Shih. Both guest bloggers bios are below the post.

The release of the latest prevalence data by the CDC last week was important in two ways.  One, of course, is its implication for the role of environmental risk factors in autism. The other is how the finding enhances awareness and supports our call for more money for research.

The same can be said for our international epidemiology efforts. As part of our Global Autism Public Health initiative (GAPH), we have been funding and planning prevalence studies with our international partners and colleagues for the past several years. In South Korea, for instance, we are expecting the publication of the first ever prevalence estimate in early 2010. We also have prevalence studies in various stages of development in Albania, India, Ireland and Mexico.  All these efforts involve members of our International Autism Epidemiology Network.

In addition to the contributions these studies can make to our understanding of autism, they will also help raise awareness and inform policy development in parts of the world where affected individuals and families struggle with severe stigma, and in many instances, little or no support and care.  Another way to look at it is that when you conduct a prevalence study, you are basically asking members of the autism community to stand up and be counted. When that happens, especially if the number is anywhere close to the 1 percent figure we have here in the States, their plight and needs can no longer be ignored.

Author Bios

Andy Shih

Andy Shih, Ph.D. is the Vice President of Scientific Affairs at Autism Speaks, where he oversees the etiology portfolio, which includes research in genetics, environmental sciences, and epidemiology. He was responsible for the formation and development of Autism Speaks sponsored international autism research collaborations, the Autism Genome Project and the Baby Siblings Research Consortium. Andy also leads Autism Speaks’ international scientific development efforts, such as the Global Autism Public Health Initiative (GAPH). Andy joined the National Alliance for Autism Research (NAAR) in 2002.

Prior to joining NAAR, Andy had served as an industry consultant and was a member of the faculty at Yeshiva University and New York University Medical Center. He earned his Ph.D. in cellular and molecular biology from New York University Medical Center.

Andy’s research background includes published studies in gene identification and characterization, virus-cell interaction, and cell-cycle regulation. He was instrumental in the cloning of a family of small GTPases involved in cell-cycle control and nuclear transport, and holds three patents on nucleic acids-based diagnostics and therapeutics. Andy is a resident of Queens, where he lives with his wife, daughter and son.

Michael Rosanoff

Michael Rosanoff, MPH, is a member of Autism Speaks etiology team and manages the organization’s epidemiology and public heath research grants. Since joining the organization in 2007, Michael has been the staff lead in overseeing the International Autism Epidemiology Network (IAEN) and is part of the development team for the Global Autism Public Health Initiative (GAPH). He is also a member of Autism Speaks Grants Division, helping oversee the administration of the organization’s grant-making process for research.

Prior to joining Autism Speaks, Michael conducted independent research at the Gertrude H. Sergievsky Center, a clinical, epidemiological and genetic research center at Columbia University Medical Center focused on developmental disorders of the nervous system. His research background is in genetic and psychiatric epidemiology as well as behavioral neuroscience and neuroimmunology, with publications in the fields of epilepsy and depression. Michael earned his Master of Public Health (MPH) in epidemiology from Columbia University’s Mailman School of Public Health and resides in N.J.

A Blue Christmas

January 8, 2010 Leave a comment

This past December, The Shops at Prudential Center launched  “31 Nights of Light,” a new Boston holiday tradition, partnering with 28 Boston-area organizations to light the top of the Tower a different color each night in December.

Autism Speaks, New England Chapter board members Larry Cancro (Senior Vice President - Fenway Affairs) and Sean O'Brien (President - Teamsters Local 25) were also in attendance to celebrate the lighting.

Monday, December 21 featured Autism Speaks and its signature blue awareness color.  At 5:00 p.m.,  a seven-foot switch was honorarily “flipped” by Dennis Floyd and his son, Grant, from Lynn, Mass.  Actually, five-year-old Grant muscled the huge light switch up and on, lighting the 51st floor of the Prudential Tower in Autism Speaks blue. The Floyds were one of many donors who, for a donation of $25 or more between December 9 and December 16, were entered into a drawing to win this special honor.

The Prudential Tower in downtown Boston was lit in blue for autism awareness on Dec. 21!

 

 

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.

What is Causing Autism Prevalence to Increase? – Part 1

January 6, 2010 Leave a comment

This part 1 of a 2 part series is from Michael Rosanoff and Andy Shih who both work in the Autism Speaks science department. The first post is from Michael Rosanoff. Both guest bloggers bios are below the post.

It’s been just over a week but by now most of us have heard that the new autism statistics are out and no less frightening – 1 percent. So the question on everyone’s mind is what is causing this astounding increase in prevalence? Fortunately, in addition to measuring how prevalent autism is in a population, epidemiology can help piece together the rest of the puzzle by examining what is causing autism to be so prevalent. Part of the approach is to tease out some of the “non-casual” factors contributing to the increase over time such as changes in how autism is diagnosed and increasing awareness. While we can’t yet see the full picture, recent research from the U.S. and around the world is showing us that while these factors are clearly playing a role in the rise in autism prevalence, they cannot account for the dramatic increase alone. Epidemiology research can shed light on some of the genetic and environmental factors driving this rise in prevalence, and once we uncover the causes or risk-factors, we can more effectively develop ways to manage this growing problem.

Currently, Autism Speaks is supporting and advising on a number of large-scale epidemiology studies in the U.S. that look at environmental factors potentially contributing to the rise in autism prevalence. These include the EARLI Study, CHARGE, and the National Children’s Study.  In addition, international epidemiology research has been an area of major focus for Autism Speaks. In 2004, Autism Speaks and the CDC (in fact, the authors of the latest prevalence study) co-developed the International Autism Epidemiology Network to promote collaboration and facilitate research among autism epidemiologists worldwide. Today, the network includes over 100 scientists from more than 30 countries.

International research presents unique opportunities to understand the etiology, or causes, of autism by studying different ethnic groups in countries with different environmental conditions than found in the U.S. alone. Epidemiologists can make comparisons of autism prevalence across nations as a means of generating clues about the involvement of genes or environmental exposures. Additionally, some nations have special resources, such as health registries and surveillance systems that can generate large datasets and make previously impossible studies on autism possible. Autism Speaks is currently supporting the iCARE project which combines data from Norway, Sweden, Denmark, Finland, Israel, and Australia to investigate pre- and peri-natal risk factors for autism.

So what we have now is mounting evidence that autism is a major public health issue and epidemiologists have the tools to investigate why autism is more prevalent now than ever before.  The question remaining is what are we going to do about it?  How are we going to enable the necessary research? Autism Speaks is answering the call through our supported research efforts, but our efforts alone are simply not enough to help the 1 percent of the U.S. and possibly global population affected by autism. We need answers and with more support, research will provide the answers families need.

Author Bios

Andy Shih, Ph.D., Vice President of Scientific Affairs at Autism Speaks

Andy Shih, Ph.D. is the Vice President of Scientific Affairs at Autism Speaks, where he oversees the etiology portfolio, which includes research in genetics, environmental sciences, and epidemiology. He was responsible for the formation and development of Autism Speaks sponsored international autism research collaborations, the Autism Genome Project and the Baby Siblings Research Consortium. Andy also leads Autism Speaks’ international scientific development efforts, such as the Global Autism Public Health Initiative (GAPH). Andy joined the National Alliance for Autism Research (NAAR) in 2002.

Prior to joining NAAR, Andy had served as an industry consultant and was a member of the faculty at Yeshiva University and New York University Medical Center. He earned his Ph.D. in cellular and molecular biology from New York University Medical Center.

Andy’s research background includes published studies in gene identification and characterization, virus-cell interaction, and cell-cycle regulation. He was instrumental in the cloning of a family of small GTPases involved in cell-cycle control and nuclear transport, and holds three patents on nucleic acids-based diagnostics and therapeutics. Andy is a resident of Queens, where he lives with his wife, daughter and son.

Michael Rosanoff, Assistant Director of Public Health Research and Scientific Review

Michael Rosanoff, MPH, is a member of Autism Speaks etiology team and manages the organization’s epidemiology and public heath research grants.  Since joining the organization in 2007, Michael has been the staff lead in overseeing the International Autism Epidemiology Network (IAEN) and is part of the development team for the Global Autism Public Health Initiative (GAPH). He is also a member of Autism Speaks Grants Division, helping oversee the administration of the organization’s grant-making process for research.

Prior to joining Autism Speaks, Michael conducted independent research at the Gertrude H. Sergievsky Center, a clinical, epidemiological and genetic research center at Columbia University Medical Center focused on developmental disorders of the nervous system. His research background is in genetic and psychiatric epidemiology as well as behavioral neuroscience, with publications in the fields of epilepsy and depression. Michael earned his Master of Public Health (M.P.H.) in epidemiology from Columbia University’s Mailman School of Public Health and currently resides in Jersey City, N.J.

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