By Geri Dawson, Ph.D., Chief Science Officer, Autism Speaks, and Research Professor of Psychiatry at UNC Chapel Hill.
One out of 110 school-age children in the US is diagnosed with an autism spectrum disorder (ASD). Given these numbers, it is likely that you know someone who is affected by autism. Please join me and thousands of others around the world in shining a bright blue light on autism by wearing blue on April 1st and 2nd. This is one way you can show your support and increase awareness of autism.
People with ASD have difficulties in social interaction and communication and tend to have restricted interests and repetitive behaviors. Autism is not one condition; rather, it is many conditions with many different causes, which include both genetic and environmental risk factors. When autism is identified at an early age and appropriate early intervention is provided, children with autism can make substantial gains and learn to communicate and interact socially. With appropriate intervention, many children with autism are able to attend a regular classroom, learn to speak, and develop friendships. ASD affects each person differently. Some individuals are highly verbal and experience mostly social challenges, while others are nonverbal and unable to live independently. Some people are affected by medical conditions such as seizures or sleep disorders. Although most people think about autism as a condition affecting children, the challenges are typically life-long. A half-million adolescents with ASD will be entering adulthood over the next few years.
New research on the biology of autism is pointing toward novel treatments, including medications that could help address the core symptoms of ASD. Each year, Autism Speaks provides $25-30 million in research funding to discover autism’s causes and effective interventions (www.autismspeaks.org). In fact, several scientists at the University of North Carolina are currently conducting Autism Speaks-funded research on topics ranging from infant screening to animal models to clinical trials that are assessing new behavioral and medical treatments. This research offers hope for the many families struggling with autism in all of its forms.
The diversity of the presentation of ASD is just a part of the awareness we hope to raise this year on World Autism Awareness Day by shining a light on autism. We want more people to appreciate the lives of those living with autism, both in terms of the daily challenges and the celebrations of special abilities and milestones achieved.
Saturday, April 2nd is World Autism Awareness Day, dedicated in 2007 by the United Nations to raise awareness about autism throughout society and to encourage early diagnosis and early intervention. On Friday April 1st and Saturday April 2nd, we will light the world up blue to raise awareness and show support. Landmark buildings, hospitals and schools around the world will change their lighting to blue. Please join us at work and at your home by wearing blue, changing your porch light and hanging a sign to show your support. For more information on how you can light it up blue, please go to www.lightitupblue.org.
Autism Speaks’ Chief Science Officer, Dr. Geri Dawson, will appear on the radio show “Radio in Vivo” on Wednesday, July 14, 2010 from 11:00 a.m. – 12:00 p.m. EDT/8:00 a.m. – 9:00 p.m. PDT. To listen, go to http://wcomfm.org and click the link to the streaming signal on the home page.
The show will cover a wide range of topics including autism prevalence, genetic and environmental factors, new directions in research and treatment, and Geri’s areas of specific expertise – early detection and early intervention. The purpose of the program is to provide information and education.
We look forward to hearing your thoughts about the program!
UPDATE (7.19.10): The show is now online. You can access it at http://radioinvivo.net – click on the Schedule/Program Archive link, scroll all the way to the bottom of that page, and you’ll see the link to the podcast, as well as links to Autism Speaks, the AGP, and the PBS webinar.
Autism Speaks Chief Science Officer Geri Dawson, Ph.D., opened Friday’s IMFAR session as the first speaker of the day. Dr. Dawson spoke about Autism Speaks research portfolio and advances being made.
Over 1700 scientists, clinicians and family members are on site at the 9th Annual International Meeting for Autism Research in Philadelphia. At Wednesday’s press conference, David Mandell, Sc.D., welcomed the media to IMFAR and gave a broad overview of the research that would be presented. He explained how research into causes of autism benefits treatments. The pathways of research are growing stronger – identification of genes allows for the creation of animal models to understand the biological processes. Compounds and treatments can then be developed to correct the processes.
Some of the big stories that the media has picked up on include research by Brian Freedman, Ph.D. and the team at Kennedy Krieger debunking the myth of significantly higher divorce rates among families who have children with autism. His research showed that the percent of children with ASD living in a two-parent biological or adoptive household was close to the percent of children without ASD in such a family structure – 64 percent vs. 65 percent. That percent held even when the researchers took into account other factors that could have affected family structure, such as socioeconomic status or demographics.
Another study garnering at lot of interest was done by Susan Hyman, M.D. at the University of Rochester. Her team’s research showed that removing gluten and dairy from the diet did not improve the condition in the 22 children tested. While many families adhere to the gluten free casein free diet, Dr. Hyman’s team saw not favorable affects on attention, sleep and stool patterns.
The conference continues through Saturday. To read complete coverage from IMFAR, please visit http://www.autismspeaks.org/science/science_news/imfar_2010.php
“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.
On April 27, Autism Speaks partnered with PBS’ This Emotional Life to present a webinar called “Growing Up With Autism.” The webinar featured a panel of scientists, parents, and individuals with an autism spectrum disorder (ASD) explaining what it is like “Growing Up with Autism.” Dr. Geraldine Dawson, Ph.D, the Chief Science Officer at Autism Speaks and Research Professor at UNC Chapel Hill led a discussion with Connie Kasari, Ph.D. (UCLA), Holly Robinson Peete, and John Elder Robison, addressing the challenges that face individuals with an ASD and their families as they are initially diagnosed, navigate peer interactions and age out of services as they enter adulthood.
If you missed the webinar, we encourage you to watch it online and share your thoughts.
Autism Speaks recently awarded 16 new autism research grants, totaling over five million dollars. You can learn more about them here.
TUNE IN - “Growing Up with Autism” webinar
Tuesday, April 27, 1-2 p.m. EDT
Join a panel of scientists, parents, and individuals with an autism spectrum disorder (ASD) to learn what it is like “Growing Up with Autism.” Dr. Geraldine Dawson, Ph.D, the Chief Science Officer at Autism Speaks and Research Professor at UNC Chapel Hill will lead a discussion with Connie Kasari, Ph.D. (UCLA), Holly Robinson Peete, and John Elder Robison, to address the challenges that face individuals with an ASD and their families as they are initially diagnosed, navigate peer interactions and age out of services as they enter adulthood.
The panelists will also focus on the different needs and abilities individuals with an ASD have in the hope of generating acceptance and support in the community. This poignant webinar will combine professional experts with personal experience to offer unique insights and perspectives that will be valuable to all who are touched by this increasingly common spectrum of neurodevelopmental disorders.
To register for the free webinar, please visit https://www1.gotomeeting.com/register/563407008.
Stay informed about “This Emotional Life’s” on-going webcasting events with thought leaders in the fields of mental health and wellness by signing up for their bi-monthly newsletters.
If you miss the webinar, we will have information soon about how you can view it. Please stay tuned!
By Geri Dawson, Chief Science Officer, Autism Speaks
This week, an unprecedented gathering of the autism advocacy community was held at the National Institutes of Health. Francis Collins, director of the nation’s largest agency focused on science and public health, met with members of diverse factions of the autism community to listen to their priorities and perspectives. As Collins noted early on in the meeting, the strife among the members of the autism community is “legendary,” sometimes scaring members of the scientific community who often will instead choose to study less controversial conditions. Not surprisingly, opinions expressed at the table were indeed diverse, ranging from those who believe that autism is caused by toxins in our environment and advocate that NIH’s efforts should be targeted on prevention to those who believe that autism shouldn’t even be considered a disorder and efforts should be directed instead at improving the quality of life of persons with autism spectrum disorder. Remarkably, however, finding common ground among the autism community became the theme of the meeting.
As different members of the community passionately spoke about the suffering of people with autism and their families and the urgency with which the NIH needs to respond to the autism public health crisis, it became clear that a large part of the divisiveness among the autism community is the result of the tremendous heterogeneity in the condition. Some who spoke were parents of children with autism who are nonverbal and suffer from debilitating medical conditions, such as GI problems and seizures, whereas others who spoke were persons with autism spectrum disorder themselves, who were able to eloquently describe the need for greater acceptance of persons on the autism spectrum. And while there remained significant differences of opinion regarding where NIH should direct its resources – whether on prevention, causes, more effective treatments, or services – the common sentiment emerged that our unified goal is to relieve the burden of autism in all of its forms and manifestations. Furthermore, there was a shared sense of urgency and recognition that the NIH needs to be more aggressive, coordinated, and directive in its pursuit of scientific discoveries that will have real impact on the lives of persons with autism spectrum disorder and their families.
The meeting ended with a few words of advice from the director of NIH. He suggested that the autism advocacy community will be more effective the more we find common ground. He noted that while there are real differences of opinion, we are all on the same team and we should remember to “respect the person while challenging the idea.” He urged the autism community to hold the NIH accountable. And finally, he talked about the importance of bringing together the basic scientists with people suffering from autism, noting that this personal connection made a difference in his own career and can be highly motivating for scientists, many of whom are trying to make a real difference in the world.
I personally left the meeting feeling more hopeful that the autism community can indeed work more respectfully and productively together by finding common ground. I believe that a unified voice will be critical for holding NIH accountable. Because of the scale of the public health crisis we face, we urgently need more scientific resources devoted to our cause. Together, we can make it happen.
Geraldine Dawson became Autism Speaks’ first chief science officer in January of 2008. In this role, Dawson serves as the scientific leader of Autism Speaks, working with the scientific community, stakeholders, and science staff, to shape, expand, and communicate the foundation’s scientific vision and strategy. Dawson is also Research Professor of Psychiatry at the University of North Carolina at Chapel Hill.