by Alycia Halladay, Ph.D, Director of Environmental Science
Research using identical and fraternal twins is typically used to identify genetic influences on the development of ASD. This year, researchers studied a large group of twins and examined the concordance of different types of symptoms (1). Using this approach, the researchers found that the concordance of severe autism between identical twins and fraternal twins was about the same, indicating a strong environmental component to ASD severity. But what are those environmental factors? Epidemiological studies are providing clues.
At this year’s IMFAR, new data was presented that focused on studying groups of people and their exposures to a number of environmental factors. Each used different designs with their own unique advantages. For example, at UC Davis, the CHARGE study (www.beincharge.ucdavis.edu) examined the risk of developing autism following exposure to a number of factors that were identified through self report or medical records. Those that showed an association were antidepressant SSRI use (2) and metabolic disorders including hypertension and diabetes (3). On the other hand, a previously identified factor, maternal infection, was not associated (4). Why not? The researchers suggested that fever, not infection per se, may be a factor. Using self-report and medical records obtained prior to study entry may not accurately capture all relevant information, and an infection or fever may be missed in some reports. However, other types of information, such as method of birth, is easier to gather accurately. An analysis revealed that non-emergency or elective c-section deliveries did not show a significant association with autism, addressing a concern that many public and community stakeholders have expressed (5).
As an alternative to retrospective reports, the Early Markers of Autism Study in California is obtaining samples of blood from pregnant women by obtaining extra blood taken during the alpha-fetal protein screen that is banked. Not all states bank these samples for research, so this is a unique resource. By examining the levels of mercury in blood taken during pregnancy together with newborn blood spots, the researchers can get a more comprehensive picture of the prenatal environment. They reported no difference in mercury levels compared to those of non-affected children during gestation, and also reported no difference in thyroid hormone levels (6,7). Examination of subgroups of autism with regression did not change the results. While these data are incredibly novel and valuable, these studies were not designed to capture information throughout the entire pregnancy nor capture factors after birth
Another way to study exposures during pregnancy is through birth certificate data. In some states, the birth certificate contains information such as the place of birth and the occupation of the mother and the father. Using this information, scientists found that occupational exposures in mothers to certain chemicals resulted in an increased risk of ASD in offspring (8).
While each approach brings unique strengths, all researchers agree that the most comprehensive way to capture all information accurately, is a prospective design. This means identifying children as soon as possible and following them from that point on to gather every piece of relevant information from medical reports to blood samples. Autism Speaks is proud to co-sponsor such a study: the Early Autism Risk Longitudinal Investigation (EARLI). This groundbreaking project will provide even more answers to what causes autism, and needs the help of the community to do so.
So how can researchers blend or expand their research if they are using only one type of design? Autism Speaks and the National Institutes for Environmental Health Sciences are sponsoring a network of projects called the Environmental Epidemiology of Autism Research Network (EEARN). The goal of this network is to improve communication among researchers in this field, identify opportunities for collaborative projects and improve research tools for both existing, and new projects. Over 20 studies from 8 countries are represented in the network. We will keep you updated on the activity of the network, and we hope you will keep checking in for updates.
1. Understanding Clinical Variability In Autism: Results From a California Twin Study. W. Froehlich*1, S.
Cleveland1, A. Torres1, J. M. Phillips1, B. Cohen2, A. Fedele3, T. Torigoe2, J. Collins4, K. S. Smith5, L. Lotspeich1, L. A. Croen4, S. Ozonoff6, C. Lajonchere7, J. K. Grether5, N. Risch8 and J. Hallmayer1, (1)Stanford University, Stanford, CA, (2)Autism Genetic ResourceExchange, Los Angeles, CA, (3)Autism Speaks, Westmont, NJ,
United States, (4)Kaiser Permanente, Division of Research, Oakland, CA, (5)California Department of Public Health, Richmond , CA, (6)UC Davis MIND Institute, Sacramento, CA, (7)Autism Speaks, Los Angeles, CA, United States, (8)University of California San Francisco, San Francisco, CA
2. SSRI Use During Pregnancy and Risk of ASD or Developmental Delay In Children. R. A. Harrington*1,L. C. Lee1, C. K. Walker2, R. L. Hansen3, S. Ozonoff3 and I. Hertz-Picciotto4, (1)Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, (2)Department of Public Health Sciences, University of California at Davis, Davis, CA, (3)MIND Institute, University of California at Davis, Sacramento, CA, (4)Department of Public Health Sciences, University of California Davis, Davis, CA
3. The Role of Maternal Diabetes and Related Conditions In Autism and Other Developmental Delays. P. Krakowiak*1,2, A. A. Bremer3, A. S. Baker1, C. K. Walker1,4, R. L. Hansen2,3 and I. Hertz-Picciotto1,2, (1)Public Health Sciences, University of California, Davis, Davis, CA, (2)M.I.N.D. Institute, Sacramento, CA, (3)Pediatrics, University of California, Davis, Sacramento, CA, (4)Obstetrics & Gynecology, University of California, Davis, Sacramento, CA
4. Prenatal Influenza or Fever and Risk of Autism/Autism Spectrum Disorders. O. Zerbo*1, I. Hertz- Picciotto2,3, A. M. Iosif4, R. L. Hansen5,6,7 and C. K. Walker8, (1)Sacramento, CA, (2)University of California, Davis, Davis, CA, (3)Department of Public Health Sciences, University of California Davis, Davis, CA, (4)UC Davis, Davis, CA, (5)University of California, Davis, MIND Institute, Sacramento, CA, (6)MIND Institute, University of California at Davis, Sacramento, CA, (7)MIND Institute and Dept. of Pediatrics, University of California Davis, Davis, CA, (8)Department of Public Health Sciences, University of California at Davis, Davis, CA
5. Cesarean Birth and Autism Spectrum Disorder. C. K. Walker*1, P. Krakiowiak2, A. S. Baker3, R. L. Hansen4, S. Ozonoff5 and I. Hertz-Picciotto6, (1)Obstetrics & Gynecology, UC Davis, Sacramento, CA, (2)Public Health Sciences, UC Davis, Sacramento, CA, (3)Public Health Sciences, UC Davis, Davis, CA, (4)Pediatrics, M.I.N.D. Institute, UC Davis, Sacramento, CA, (5)Psychiatry and Behavioral Sciences, M.I.N.D. Institute, UC Davis, Sacramento, CA, (6)Public Health Sciences, M.I.N.D. Institute, UC Davis, Davis, CA
6. Prenatal and Neonatal Peripheral Blood Mercury Levels and Autism Spectrum Disorders. L. A. Croen*1, M. A. Lutsky1, C. Yoshida1, C. P. Alaimo2, M. Kharrazi3, J. K. Grether4 and P. Green2, (1)Kaiser Permanente Division of Research, Oakland, CA, (2)Civil and Environmental Engineering, Univ. of California Davis, Davis, CA, (3)Genetic Disease Screening Program, California Department of Public Health, Richmond, CA, (4)California Department of Public Health, Richmond, CA
7. Prenatal and Neonatal Thyroid Stimulating Hormone Levels and Autism Spectrum Disorder. M. A. Lutsky*1, C. Yoshida1, B. Lasley2, M. Kharrazi3, J. K. Grether4, G. Windham4 and L. A. Croen1, (1)Kaiser Permanente Division of Research, Oakland, CA, (2)Department of Population Health and Reproduction, UC Davis, Davis, CA, (3)Genetic Disease Screening Program, California Department of Public Health, Richmond, CA, (4)California Department of Public Health, Richmond, CA
8. Autism Spectrum Disorders In Relation to Parental Occupational Exposures During Pregnancy. G. Windham*1, J. K. Grether2, A. Sumner3, S. Li4, E. Katz5 and L. A. Croen6, (1)California Department of Public Health, Richmond, CA, (2)California Department of Public Health, Richmond, CA, (3)Vermont Department of Health, Burlington, VT, (4)Kaiser Permanente Divison of Research, Oakland, CA, (5)Occupational Health Branch, CA Department of Public Health, Richmond, CA, (6)Kaiser Permanente Division of Research, Oakland, CA
If you’ve been following autism research in recent years, you have probably read—many times—that familial, or inherited, risk is seldom the whole picture. A few inherited genes are sufficient by themselves to cause autism. But most so-called “autism genes” only increase the risk that an infant will go on to develop this developmental disorder. As is the case in many complex diseases, it appears that autism often results from a combination of genetic susceptibility and environmental triggers.
This is where epigenetics comes in. Epigenetics is the study of the factors that control gene expression, and this control is mediated by chemicals that surround a gene’s DNA. Environmental epigenetics looks at how outside influences modify these epigenetic chemicals, or “markers,” and so affect genetic activity.
It is important to remember that scientists use the term “environment” to refer to much more than pollutants and other chemical exposures. Researchers use this term to refer to pretty much any influence beyond genetic mutation. Parental age at time of conception, for example, is an environmental influence associated with increased risk of autism, as are birth complications that involve oxygen deprivation to an infant’s brain.
Because epigenetics gives us a way to look at the interaction between genes and environment, it holds great potential for identifying ways to prevent or reduce the risk of autism. It may also help us develop medicines and other interventions that can target disabling symptoms. We have written about epigenetics previously on this blog (here and here). So in this answer, I’d like to focus on the progress reported at a recent meeting hosted by Autism Speaks.
The Environmental Epigenetics of Autism Spectrum Disorders symposium, held in Washington, D.C. on Dec. 8, was the first of its kind. The meeting brought together more than 30 leaders in autism neurobiology, genetics and epidemiology with investigators in the epigenetics of other complex disorders to promote cross-disciplinary collaborations and identify opportunities for future studies.
Rob Waterland, of Baylor College of Medicine in Texas, described epidemiological studies and animal research that suggested how maternal nutrition during pregnancy can affect epigenetic markers in the brain cells of offspring.
Julie Herbstman, of Columbia University, described research that associated epigenetic changes in umbilical cord blood with a mother’s exposure to air pollutants known as polycyclic aromatic hydrocarbons (PAHs). PAHs are already infamous for their association with cancer and heart disease.
Rosanna Weksberg, of the Hospital for Sick Kids in Toronto, discussed findings that suggest how assisted reproductive technology may lead to changes in epigenetically regulated gene expression. This was of particular interest because assisted reproduction has been associated with ASD. Taking this one step further, Michael Skinner, of Washington State University, discussed “transgenerational epigenetic disease” and described research suggesting that exposures during pregnancy produce epigenetic changes that are then inherited through subsequent generations.
Arthur Beaudet, of Baylor College of Medicine, discussed a gene mutation that controls availability of the amino acid carnitine. This genetic mutation has been found to be more prevalent among children with ASD than among non-affected children, suggesting that it might be related to some subtypes of autism. Further study is needed to follow up on the suggestion that dietary supplementation of carnitine might help individuals with ASD who have this mutation. Caution is needed, however. As Laura Schaevitz, of Tufts University in Massachusetts, pointed out, studies with animal models of autism suggest that dietary supplementation may produce only temporary improvements in symptoms of neurodevelopmental disorders.
So what does this all mean for research that aims to help those currently struggling with autism? The meeting participants agreed that the role of epigenetics in ASD holds great promise but remains understudied and insufficiently understood. For clearer answers, they called for more research examining epigenetic changes in brain tissues. This type of research depends on bequeathed postmortem brain tissue, and Autism Speaks Autism Tissue Program is one of the field’s most important repositories. (Find more information on becoming an ATP family here).
The field also needs large epidemiological studies looking at epigenetic markers in blood samples taken over the course of a lifetime. One such study is the Early Autism Risk Longitudinal Investigation (EARLI). More information on participating in EARLI can be found here.
Autism Speaks remains committed to supporting and guiding environmental epigenetics as a highly important area of research. We look forward to reporting further results in the coming year and years.
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Read more autism research news and perspective on the science page.
Posted by Autism Speaks scientific advisory board member Irva Hertz-Picciotto, PhD, MPH. As an epidemiologist at the University of California-Davis MIND Institute, Hertz-Picciotto studies exposures to environmental chemicals, their interactions with nutrition and pregnancy and their effects on prenatal and early child development.
Alan Zarembo’s series on autism in the LA Times covers a great deal of territory and has brought to light a wide range of personal stories that exemplify the complexity of issues surrounding autism diagnosis, treatment choices and effectiveness, impact on families and population incidence. Zarembo should be commended for the substantial work he has done researching inequities in the delivery of services. Of notable concern, he has put a spotlight on what appear to be serious racial and ethnic disparities in the California Department of Developmental Services (DDS) system and the provision of therapies. If his figures are correct, this result should stimulate an analysis of how to right this situation and ensure that appropriate opportunities are made available to all families with affected children.
Zarembo has also highlighted adults living with an autism spectrum disorder (ASD) but diagnosed late in life. We have too long overlooked the struggles faced by adults with autism as they try to find ways to be productive, live independently and connect with others.
My remaining comments pertain to Zarembo’s conclusions about the rise in autism diagnoses and the role of environmental factors. First, he is right that there is substantial variability in rates of diagnoses in different regions, and that we should not confuse diagnoses with the actual incidence of disease. Not all persons who meet criteria have been correctly diagnosed, and the degree to which this is true has likely changed over time.
Nevertheless, impressions are not the same as a scientific analysis. Zarembo has not demonstrated that the rise is purely social and cultural. My colleague Lora Delwiche and I published the first quantitative analysis of how much of the increase in diagnosed cases in California could be explained by artifacts (changes in diagnostic criteria, earlier age at diagnosis and inclusion of milder cases).1 We used California state data that provided statistics over many years and found that the numbers simply do not add up. In other words, the actual increase has been far larger than these artifacts could have produced. Combining our results with those of another research team, it appears that about half of the increase in diagnoses in California is due to changes in diagnostic criteria or practices.2 These results left about a three-fold increase unexplained as of 2007. And autism diagnoses in California have continued to rise both in areas with low rates and in areas with high rates. Zarembo is interested in explaining the geographic variation, but the explanations for variation spatially are not necessarily the explanations for variation over time.
These statements were particularly misleading:
“No study points to an environmental reason for the worldwide explosion in cases over the last two decades.
Given the slow pace of genetic change in large populations, genes can’t account for the surge either.
That suggests the explanation for the boom lies mainly in social and cultural forces, notably a broader concept of autism and greater vigilance in looking for it.”
The logic that leads from the first two sentences to the third involves huge assumptions.
How many studies have been done of environmental causes? Very few! And of these, most were extremely poor studies involving very small samples or lacking individual-level data. Is it surprising we’ve uncovered few leads? The funding for environmental factors has been paltry – somewhere around $40 to $60 million over the last 10 years, while more than $1 billion has been spent on studying autism genetics. To imply that environmental factors can be dismissed and that only social/cultural factors should be pursued is nonsensical.
It should be noted, however, that if anyone is looking for “one” environmental factor to explain the increase, they will certainly be disappointed. It doesn’t exist. Autism is far too complex. Moreover, to the extent the increase is due to diagnostic differences over time, we need to find explanations both for the increasing numbers of diagnoses and for the autism that has been around “all along.” In fact, data are emerging about quite a number of environmental factors. In 2011, major papers were published supporting contributions from maternal nutrition around the time of conception (here and here), traffic-related air pollution, and season of conception.3-6 Earlier papers indicated associations with pesticides (here and here) and air pollution.7-9
One concern raised about the increase in diagnoses is a type of ‘inflation’ from inclusion of a growing number of high-functioning persons whose diagnosis is more likely to be Asperger syndrome than classic autism. This may apply to some studies of changes over time, but in our analysis of CHARGE study data, most of the cases were low functioning.10 This would likely be true for the majority of persons with ASD served by the California Department of Developmental Services (DDS), because in order to qualify for state services, they must have “significant functional limitations” in three areas of major life activities. This requirement would exclude most of those who are higher functioning.
With regard to genetics, Zarembo’s article leaves out the most current information: the largest and most statistically robust study of twin pairs found that 38 percent of concordance is due to shared genetics with 58 percent due to shared environmental factors (most likely prenatal and perinatal).11 This result completely overturns the widespread assumption, based on a number of previous small studies, that the causes of autism are overwhelmingly heritable, or genetic. Unfortunately, most analyses of twins make the incorrect assumption that genes and environment do not interact to influence risk for disordered brain development. This interaction is real, and one study has already shown a whole class of genes that primarily affect development in children whose mothers had not taken prenatal vitamin supplements during the months preceding and immediately following conception. 3
In summary, Zarembo’s investigative journalism provides unusual depth into difficult aspects of autism occurrence and the social policies that bear on the lives of affected families. He has raised several critical challenges facing the autism community. What was lacking from his series is a more balanced view of the role environment likely plays and the need to advance the agenda of discovering modifiable causative factors.
Autism Speaks is one of a few organizations that have begun to turn in this direction. I look forward to a continued strong commitment by Autism Speaks and others willing to support and significantly expand the scientific research aimed at identifying and understanding environmental contributions to autism, factors driving increased prevalence and ways to intervene so as to eliminate or lower human exposure levels. This will be the fastest road to reducing the occurrence of ASD in the next generation.
1 Hertz-Picciotto I, Delwiche L. The rise in autism and the role of age at diagnosis. Epidemiology 2009;20: 84-90.
2 King M, Bearman P. Diagnostic change and the increased prevalence of autism. Int J Epidemiol. 2009; 38:1224-34.
3 Schmidt, R J, et al. Prenatal vitamins, one-carbon metabolism gene variants, and risk for autism. Epidemiology 2011;22:476-85.
4 Cheslack-Postava K, Liu K, Bearman PS. Closely spaced pregnancies are associated with increased odds of autism in California sibling births. Pediatrics 2011;127:246-53.
5 Volk HE, Hertz-Picciotto I, Delwiche L, Lurmann F, McConnell R. Residential proximity to freeways and autism in the CHARGE study. Environ Health Perspect 2011;119: 873-7.
6 Zerbo O, Iosif AM, Delwiche L, Walker C, Hertz-Picciotto I. Month of conception and risk of autism. Epidemiology 2011;22:469-75.
7 Roberts EM, et al. Maternal residence near agricultural pesticide applications and autism spectrum disorders among children in the California Central Valley. Environ Health Perspect. 2007;115:1482-9.
8 Eskenazi B, et al. Organophosphate pesticide exposure and neurodevelopment in young Mexican-American children. Environ Health Perspect 2007;115:792-8.
9 Windham G, Zhang L, Gunier R, Croen L, Grether J. Autism spectrum disorders in relation to distribution of hazardous air pollutants in the San Francisco Bay Area. Environ Health Perspect. 2006; 114(9):1438-44.
10 Hertz-Picciotto, I. et al. The CHARGE study: an epidemiologic investigation of genetic and environmental factors contributing to autism. Environ Health Perspect. 2006;114: 1119-25.
11 Hallmayer, J. et al. Genetic heritability and shared environmental factors among twin pairs with autism. Arch Gen Psychiatry. 2011(68):1095-102.
Makiko Kaga, M.D. was clearly nervous. She told me so, several times.
Dr. Kaga is the Director General of the Japanese National Institute of Mental Health at the National Center of Neurology and Psychiatry (NCNP). She is also our collaborator and the main organizer of the “Joint Academic Conference on Autism Spectrum Disorders” that Autism Speaks co-hosted December 1-3, 2011 in Tokyo, Japan.
She and her team of about a dozen junior faculty, post-docs and graduate students had been working feverishly preparing for the conference. In this first academic conference of its kind devoted to autism, Autism Speaks brought six leading autism researchers from the U.S., with expertise ranging from epidemiology to intervention, to share their work, including unpublished results, and to explore collaborative opportunities with their Japanese counterpart. Dr. Kaga’s team was charged with coming up with the right mix of presentations by Japanese and U.S. scientists that would ease productive exchange and interactions. From my own experience, this is easier said than done, especially with language and cultural differences. Plus, you never really know how well things will flow and gel until it happens.
Around the same time, Masatsugu Tsujii, Ph.D. and Teruko Ujita of Japan Developmental Disabilities Network (JDD-Net) were having similar jitters. Working together with Autism Speaks’ communications manager Danielle Yango and Alison Bradley, from our international PR firm BLJ, they were responsible for staging awareness activities throughout the three-day conference, concluding with an awareness event involving Yoko Ono. Ms. Ono is Autism Speaks’ Global Autism Awareness Ambassador and she kindly agreed to take time from her busy schedule to join many Japanese families and professionals to raise awareness about autism.
Teruko Ujita is a mom, and the Executive Director of JDD-Net. She is one of those super effective people who, no matter how chaotic things get around her, is always calm and ready to flash a big smile. Autism Speaks’ collaboration with the Japanese autism community really started about 18 months ago with a chance meeting between Dr. Tsujii and I at IMFAR 2010. So to say he was feeling the pressure to deliver is probably an understatement.
A couple of times during those tense hours, various people mentioned “Lost in Translation,” the cult Sophia Coppola film starring Bill Murray about feeling dislocated in the Japanese culture. Each time I muttered “shut up” under my breath, not wanting to be drawn into the whirlpool of anxiety around me.
In the end, we really didn’t have to worry. Or rather, maybe because all our wonderful colleagues obsessed so much over every detail, both the academic conference and the awareness event with Yoko Ono unfolded brilliantly. Both Japanese and U.S. researchers told me how much they learned at the conference, and how they plan to follow up and explore collaborative opportunities in areas like early screening to environmental sciences. I knew everything was going to be OK with the awareness event when right before Yoko Ono took the stage for an hour of inspirational remarks and TV and press interviews, she was smiling and clapping watching Salsa Gum Tape, a band comprised of individuals with disabilities, along with a packed hall of families and professionals performing a rousing interpretation of John Lennon’s “Imagine.”
Happy Thanksgiving and Happy Holidays to you and your family! This past month has been a whirlwind of activity here at Autism Speaks and we wanted take the opportunity to give thanks to the many collaborators who work with Autism Speaks in a variety of ways; from content partners to research providers to corporate sponsors and marketplace vendors – you all help us every day accomplish our vision and mission. Thank you from the bottom of our hearts and from the Autism Speaks staff and board.
Meanwhile, November was a busy month that featured global science outreach, an update to the resource guide and much more.
One of the common (and terrific!) questions we get is how does research help your child today. We recently posted a terrific blog about just that topic that we highly recommend you read!
“When it comes to helping our children and all those with autism, scientific evidence of benefit puts us on the road to affordable access to therapy. And that means better outcomes. This is what our families deserve and our mission supports.”
Have a wonderful holiday season with your family!
- To China, and Beyond! The science department’s highlights for November begin with the science leadership’s historic trip to Shanghai, China. Our colleagues there were eager to hear about new research and treatments being developed in North America. We were impressed with their technological prowess. In the coming year, the Beijing Genome Institute will be sequencing the DNA of families participating in our Autism Genome Resource Exchange (AGRE) program, allowing us to create the world’s largest whole genome sequence library for autism research.
- Neuroscience Conference Update Our VP of Translational Research, Rob Ring, Ph.D., and Assistant VP Head of Medical Research Joe Horrigan, M.D., attended the annual conference of the Society for Neuroscience, which began with a special three-day satellite symposium on Autism Spectrum Disorders—from Mechanisms to Therapies. As part of the this symposium on translational research, Autism Speaks co-sponsored the publication of two watershed documents: SnapShot: Autism and the Synapse richly illustrates how 16 autism risk genes interact within and between cells that convey vital brain messages; SnapShot: Genetics of Autism summarizes knowledge on scores of autism-risk genes—both their normal functions and how their mutations increase the risk of certain autism sub-types and syndromes. Both documents are now available for free download from our science page.
- Research Results A number of our research grants came to fruition this month with high-profile papers in major publications. Among them were Eric Courchesne’s findings on altered prenatal brain development in children with autism (Journal of the American Medical Association) and Schahram Akbarian’s association of “epigenetic” changes with autism (Archives of General Psychiatry). Both studies were made possible by a combination of donor dollars and family participation in our Autism Tissue Program.
- Awards We are pleased to share the news that the American Public Health Association has bestowed the Rema Lapouse Award for exemplary work in psychiatric epidemiology to longtime scientific advisory committee member Ezra Susser. Ezra is also one of the powerhouses behind our initiative for Global Autism Public Health (GAPH). Congratulations Ezra!
- Updated… Autism Speaks Resource Guide This month, Autism Speaks launched the updated version of the Resource Guide, one of the most popular and valuable tools on our website that makes it easier for families to search for resources in their areas from early intervention services, to employment programs, to social skills groups, and much, much more!
- The new version contains better URLs, updated resources, a bigger map, and the ability for families to share resources on Facebook and Google+.
- Do you provide or are you aware of services in your area for individuals with autism? Let us know! The new Submit A Service form allows service providers to add their information to the Resource Guide, and gives families the opportunity to input information about resources they have found helpful in a simple and organized way.
- Autism Speaks Live! Announced here for the very first time, we’re “re-branding” our live chats as “Autism Speaks Live” and developing even more exciting programming in 2012 for you to get educated, be entertained and to join the conversation. This past month we had several live chats including some new topics.
- Office Hours: Family Services style Each Wednesday at 3PM EST, the Family Services team is available for Office Hours sessions to answer all questions from the Autism Speaks community. Join the conversation!
Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.
The Autism Response Team continues to answer hundreds of emails and phone calls each month from families and individuals with autism. If you have any questions or need assistance or information, please feel free to call us at 888-AUTISM2 or email us at email@example.com.
- A Better Life Parents saving for their child’s college education can take advantage of tax-free “529” accounts to prepare for the future. Parents raising children with autism or other disabilities could soon take advantage of the same tax-free mechanism if newly introduced bipartisan legislation is enacted by Congress. The Achieving a Better Life Experience (ABLE) Act was introduced in the U.S. Senate and U.S. House of Representatives with the support of Autism Speaks, The Arc, the National Down Syndrome Society and other leading disability advocacy groups. Under current federal law, individuals with autism risk losing all of their benefits if they have more than $2,000 in assets in their name.
- Washington Watch The U.S. Department of Health and Human Services has begun the process of implementing the sweeping federal health care reform law enacted in 2010, a process that could have profound consequences on how autism treatments are covered through insurance. The HHS is determining what services should be included in the “essential benefits” that health plans will be required to cover. Meanwhile, the Congressional “Super Committee” that was to recommend federal budget cuts collapsed without an agreement, placing in jeopardy significant future funding for autism research and services. Autism Speaks is closely monitoring these developments. You can too at our Federal Initiatives page.
- And they’re off! The candidates vying for the presidency in 2012 have begun debating and preparing for the primaries. Autism Speaks has made available its four-part Blueprint for an Appropriate Federal Response to Autism to interested candidates. In addition, we are tracking notable statements and campaign developments as they relate to autism.
Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.
- New PSAs features Tommy Hilfiger and Jamie McMurray In early November, we launched our latest “Odds” PSAs with the Ad Council. Created pro bono by BBDO, the PSAs feature fashion icon Tommy Hilfiger and NASCAR driver Jamie McMurray, who both generously donated their time to help further the cause of autism awareness. Viewers are taken on voyages through Hilfiger and McMurray’s lives that highlight the extraordinary statistical odds they each overcame on the road to success compared to the startling one in 110 odds of having a child diagnosed with autism. The PSAs end by encouraging parents to visit autismspeaks.org/signs to learn the signs of autism and to seek early intervention if a delay is suspected.
- Quotes for Autism Thanks to Allstate, you can get a no obligation, FREE quote on any insurance product Autism Speaks gets $10!
- Light It Up Blue in November! On November 29th San Francisco 49er Running Back Frank Gore and recording artists Pia Toscano & Andy Grammer participated in a holiday tree lighting at San Francisco’s famed 555 California Street. The free event was open to the public and benefited Autism Speaks.
- Google+ Already a fan on Facebook, and a follower on Twitter? Circle us up on Google+ to complete the trilogy! We’re just getting started on Google+ and love how it even further connects us to you, our community!
Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!
To date, relatively few scientists are studying autism in China. Clearly the need there is great, for with its population of over a billion, we may be looking at millions of persons affected by autism. With this in mind, Autism Speaks partnered with China’s Fudan University to convene a meeting of leading international experts in autism and children’s health in Shanghai last week.
As part of this visit, I and development psychologist Alice Kau, Ph.D., of the National Institute for Child Health & Human Development, visited Xin Hua Hospital and its recently completed Shanghai Key Lab of Children’s Environmental Health. Both are affiliated Shanghai’s Jiao Tong University School of Medicine.
There we met the lab’s executive director, Jun Jim Zhang, MD, Ph.D., and his colleagues. In recent years, they have been studying how exposure to heavy metals such as mercury and lead affects child development. Environmental lead contamination, a problem largely minimized in the United States, remains a widespread problem in China, owing to unsafe disposal of lead products including waste from lead battery plants.
The Shanghai Key Lab’s affiliation with Xin Hua Hospital allows its scientists to collect blood samples at birth and throughout a child’s development. Their lab is also collecting information on intellectual function and other developmental behaviors. Among their projects is the Shanghai Birth Cohort, which will recruit 100,000 pregnant women from hospitals throughout Shanghai and follow their children throughout adolescence.
To date, the researchers at Shanghai’s Key Lab have been focusing their research on potential environmental causes of childhood asthma, sleep disorders and leukemia. Looking forward, they are keenly interested in expanding their research to include neurodevelopmental issues such as autism.
Thanks to our new collaboration, they will be participating in Autism Speaks Environmental Epidemiology of Autism Research Network. In doing so, they will be sharing their information with autism researchers in North America and elsewhere, even as they receive guidance on screening for autism spectrum disorder (ASD).
Given the unique physical, chemical and psychosocial environment in China, we believe that this collaboration can greatly advance our understanding of the environmental and genetic risk factors that contribute to the development of ASD. We look forward to working with this wonderful research team to help solve the autism puzzle in China, North America, and around the world.
On our return from South Africa, we’d like to share with you–our community–the inspiration we drew from the Second Summit of the Movement for Global Mental Health, of which Autism Speaks is a proud member.
The summit convened in Cape Town on October 17th to continue the work of delivering mental health services to the 90 percent of the world population who have no access to such care. Many of these persons—including tens of millions of children and adults with autism—suffer tremendous social stigma and human rights abuse. To see a photo of a child chained to a tree is heart-breaking, but it galvanizes us to this cause.
The movement’s first summit, hosted in Athens in 2009, highlighted the global crisis in mental health services. During that first meeting, it became clear that the tremendous treatment gap between rich and poor communities was not due to lack of effective therapies. Rather, it stemmed from social, economic and policy barriers to delivering services.
Since then, the Movement for Global Mental Health has grown into an international coalition of 95 institutions and more than 1,700 individuals in over 100 countries—all dedicated to improving access to mental health care and promoting the human rights of people affected by neurodevelopmental disorders or mental illness.
Autism Speaks has taken an active role in this mission with our Global Autism Public Health initiative (GAPH), which has already helped create and support culturally and economically appropriate, sustainable programs for autism awareness, services and research in countries such as Albania, Bangladesh and South Africa.
This year’s Movement for Global Mental Health Summit emphasized the need for both scientific research and action on the ground to determine the best ways to deliver and enhance services in underserved communities. Though the need for such models is particularly dire in low- and middle-income nations, they are also desperately needed in many of our own disadvantaged communities.
Here in North America, we’ve learned the humbling lesson that autism intervention programs that deliver wonderful results in sophisticated, academic settings don’t necessarily work in the hands of overburdened teachers, healthcare professionals and social workers, many of whom lack expertise or professional support in autism spectrum disorders (ASDs). As economies continue to stagnate and more families slip into poverty, challenges such as lack of awareness and access to care will only worsen.
This year’s summit also coincided with the publication of The Lancet’s second special issue on global mental health. We take special pride in the commentary “A Renewed Agenda for Global Mental Health,” written by Vikram Patel, one of our funded scientists and a professor of epidemiology and population health at the London School of Hygiene and Tropical Medicine. (The Lancet offers open access to Prof Patel’s and other articles in this series with free registration.)
Today, we have cause to celebrate the emerging global recognition that “there is no health without mental health.” In moving forward, we and the other members of the Movement for Global Mental Health see tremendous potential in achieving resolution in three major areas:
1) In striking a balance between global and local priorities in research and service development—with the recognition that each is needed to inform and advance the other
2) In balancing the need to develop new and more effective treatments with the need to understand and address the social barriers that exist to delivering such care to all who need it
3) In continuing to pursue cutting edge research to benefit tomorrow’s children without neglecting the needs of the children and adults who are suffering today
For us, these resolutions embody the mission of Autism Speaks science: To improve the lives of all who struggle with ASDs by funding research and developing resources that will accelerate the discovery, development and dissemination of methods for effective prevention, diagnosis and treatment.
[As always, we’d love to hear your thoughts. In addition to leaving a comment, you can email the science team at firstname.lastname@example.org.]
A large Norwegian study provides strong evidence that women who take prenatal vitamins containing folic acid, in the weeks before and after conception, reduce the risk that a future child will develop severe language delays—defined as speaking one word or less at age 3. The study, published Oct. 12 in the Journal of the American Medical Association, comes on the heels of a recent American study that found a significantly reduced risk of autism among children born to mothers who took prenatal vitamins before conceiving.
The senior author of the study was Ezra Susser, M.D., Dr.PH., professor of psychiatry and epidemiology at Columbia University’s Mailman School of Public Health and a member of Autism Speaks’ scientific advisory committee. The lead author was Christine Roth, M.Sc., Clin.Psy.D., of the Norwegian Institute of Public Health.
The investigators analyzed pregnancy questionnaires completed by nearly 109,000 pregnant women enrolled in the Norwegian Mother and Child Cohort Study. They compared the prevalence of severe language delay among 3-year-olds according to whether or not their mothers took supplements containing folic acid during the 4 weeks before and 8 weeks after conception. They found that a mother’s use of folic acid during this crucial period reduced her child’s risk of severe language delay from just under one percent (0.9%) to less than a half percent (0.4%). Unlike the United States, Norway does not require folic acid fortification of grain products.
For years, physicians have encouraged women to take prenatal vitamins with folic acid because its use during early pregnancy reduces the risk that a baby will be born with neural tube defects, another disorder of brain development, comments Dr. Susser. “It’s important not to make blanket recommendations based on this one study,” he adds. “At the same time, we’re seeing converging lines of evidence that the effect of folic acid deficiency may be a real clue to the underlying biology that leads to autism and related problems in language development.”
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 email@example.com. 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.
Prenatal Vitamins May Lower Autism Risk (WebMD)
Taking prenatal vitamins may reduce the risk of having a child with autism, new research shows. It appears that women who reported taking prenatal vitamins starting three months prior to conception and through the first month after conception seem to have a reduced chance their child will develop autism,” says study researcher Irva Hertz-Picciotto, PhD, professor of epidemiology and environmental health at the MIND Institute and Department of Public Health, University of California, Davis. Read more.
Family of girl with autism: ‘She radiated light’ (Arvada, Colo.)
Serguei and Liliya Vlassenko moved across the ocean for the love of their child five years ago. From a comfortable life in Bryansk, Russia, about 235 miles from Moscow, to America, so their daughter Kristina, who had autism and was nonverbal, could have a better life. Read more.
Autistic teenager wins silver medals at Special Olympics (UK)
A teenager who has severe autism has won two silver medals at his first Special Olympics cycling event. Daniel Weston, 18, from Newport, Barnstaple, who has been cycling for five years, won the medals at the national event in Manchester. He came second in the 10K time trial and in the 15K road race. Read more.
Many parents attend Jax Hts. autism meet (Queens Campaigner)
About 80 people, most of them parents of children with autism, gathered at the Jewish Center of Jackson Heights last week to speak to New York autism advocates about how to navigate the educational and medical systems as well as hear about services available to them and their children. Read more.
Light It Up Blue Rockland Donates $15,000 to Autism Speaks (Pearl River, N.Y.)
Light It Up Blue Rockland wrapped up its 2011 campaign with the promise of more to come. “This will be an ongoing yearly event,” said Kevin Joyce of Prudential Joyce Realty, one of the campaign organizers. “We will have time to plan and time to make us grow and truly make Rockland County Blue.” Read more.