Autism Speaks’ Alycia Halladay, Ph.D., will be live online this afternoon (4 pm EDT, 1 pm PDT) to answer your questions on the just released study showing a high risk of autism among the younger siblings of children on the spectrum. Dr. Halladay organized and continues to help lead the High-Risk Baby Siblings Research Consortium that conducted the research and which continues to study the factors that predispose some families to autism recurrence. Please join us and bring your questions. Meanwhile, please see our news item and a special commentary from Autism Speaks’ Chief Science Officer Geri Dawson, Ph.D.
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To read the entire transcript from this chat, please visit here.
Parents of a child with autism are understandably concerned about the likelihood that their subsequent children will be affected. Autism Speaks and its legacy organization, the National Alliance for Autism Research, have been funding research on younger siblings for nearly 15 years– to help us better understand their development.
In 2003, we began organizing and co-funding a very special collaboration—the High Risk Baby Siblings Research Consortium—in partnership with Eunice Kennedy Shriver National Institute for Child Health Development.
This week, we announced the results of the consortium’s largest ever siblings study. The researchers followed younger brothers and sisters from infancy through the preschool period, when autism diagnosis becomes possible. The study revealed a markedly higher risk among younger siblings than had been previously reported.
As the autism community absorbs the news, let me give you some background on the quality and importance of this research—and what it means for parents.
Our “Baby Sibs” researchers are an international network of clinical researchers who have been pooling information from studies of affected families in 21 sites in the US, Canada, Israel and the UK. Alycia Halladay, Autism Speaks director of research for environmental sciences, and Andy Shih, vice president of scientific affairs, have led the consortium from the start and continue to coordinate its activities.
In the study making headlines this week, the consortium researchers assessed 664 infants. Each had at least one older sibling diagnosed with an autism spectrum disorder (ASD). They found that 1 in 5 babies with an older sibling on the spectrum will likewise be affected—more than double previous estimates. The rate was higher among younger brothers—1 in 4, versus 1 in 9 for younger sisters. And autism affected nearly 1 in 3 infants with more than one older sibling on the spectrum. (Previous estimates came out of much smaller and sometimes less reliably conducted studies.)
So what does this mean for parents?
If you have an older child on the spectrum and you are concerned about your infant, talk to your pediatrician about your baby’s risk and your desire for close monitoring. And if you have any concerns about your child’s development, don’t wait. Speak with your doctor about screening.
Here are links to a number of helpful resources:
* Recent research funded by Autism Speaks shows that a one-page baby-toddler checklist can be used effectively as early as 12 months as an initial screen for autism and other developmental disorders. The screener is available here.
* As a parent or caregiver, one of the most important things you can do is learn the early signs of autism and understand the developmental milestones your child should be reaching. You can see the Learn the Signs guidelines on our website, here.
* Finally, families with one or more children on the spectrum can contact their nearest “Baby Sibs” consortium researcher if they would like to participate in this important research. The list is on our website, here.
By monitoring your infant closely and promptly beginning intervention if signs of autism appear, you can ensure that your child will have the best possible outcome.
Autism risk ‘high’ for kids with older sibling with the disorder. Autism Speaks’ Alycia Halladay, Ph.D., provides perspective of NPR’s All Things Considered. To listen to the segment, visit here.
This week a reporter from Bloomberg News asked me to comment on new research showing how stimulating certain brain cells can spur autism-like symptoms–and how calming these same cells can restore normal behavior. The reporter quoted me as calling the research “revolutionary.” It’s true—for a number of reasons.
We need to study brain activity to better understand and treat social behavior disturbances such as those associated with autism. Researchers do this by seeing what happens when they change what’s happening in the brain. But until now they’ve had only crude methods such as administering chemicals that target many parts of the brain.
To better understand normal and altered brain activity, we need to pinpoint exactly where something is going wrong. It helps to think of brain cells and their connections as microcircuits. Following this analogy, researchers need to be able to test specific microcircuits within the brain.
With this in mind, Karl Deisseroth and his colleagues at Stanford University used genetic engineering to create mice that produce brain chemicals that are activated by light. When activated, these chemicals excite surrounding brain cells. The researchers then used tiny pulses of laser light to produce activity in specific parts of the brain—right down to the level of a few brain cells, or a specific brain circuit.
Using this approach, the researchers found that when they stimulated certain cells in the prefrontal cortex—a part of the brain involved in social behavior—the mice stopped socializing with each other. At the same time, the mice’s brain waves took on a pattern seen in many persons with autism. Then, the researchers used a different light that dampened the activity and calmed the overexcited cells. In response, the mice started socializing again and the autism-like brain waves began to disappear.
The idea here isn’t to control behavior or implant fiber optics in anyone’s brain! What Karl has developed is a way to help us see exactly where something might be going wrong inside a brain and decipher exactly what is happening there.
Importantly this kind of approach may allow us to use lab animals to test new medicines that can help “rebalance” certain brain circuits to ease autism symptoms–and do so with fewer or no side effects.
This is the kind of pioneering research that wins the Nobel Prize. Even more important, we at Autism Speaks want to be supporting research along this promising path toward greater understanding of autism, its prevention and its treatment.
Back by popular demand: The “Got Questions?” feature of the Autism Speaks Science blog. Today’s answer comes from…
Seizures are indeed more common in both children and adults on the autism spectrum. Independently, autism and epilepsy (seizures of unknown cause), each occur in around 1 percent of the general population. But epilepsy rates among those with autism spectrum disorders (ASD), range from 20 to 40 percent, with the highest rates among those most severely impaired by autism. Conversely, about 5 percent of children who develop epilepsy in childhood go on to develop autism.
Autism and epilepsy share many similarities. Both exist on a spectrum—that is, the severity varies widely among those affected. In addition, a number of different abnormal genes are associated with increased risk of developing one or both disorders.
Importantly to families of children affected by both autism and epilepsy, we know that the combination is often associated with overall poor health and premature death. So development of effective therapies is critically important. This goal begins with increasing our understanding of the shared brain networks, genes, and other biological mechanisms that underlie these two conditions. Autism Speaks is currently partnering with the International League against Epilepsy and Citizens United for Research in Epilepsy to further this research.
At present the treatment of epilepsy in children with autism is based on the same principles as treatment of epilepsy in any child. Should parents suspect that their child is suffering seizures, the first step is to work with a pediatric neurologist to obtain a brain study called an electroencephalogram (EEG), which can determine if these events are indeed seizures. Treatment usually involves an antiepileptic drugs, which the treating physician chooses based on the type of seizure and the associated EEG patterns—to both maximize effectiveness and minimize side effects. By themselves, anti-epileptic drugs fail to resolve seizures in around a third of patients. Such difficult-to-control cases sometimes respond to a so-called ketogenic diet (high-fat, adequate-protein, low-carbohydrate) and/or brain surgery.
Autism Speaks has more information on autism and epilepsy here. Got another question for our scientists and clinicians? Please post it in the comment section.
Post and photos by Michael Rosanoff, MPH, associate director public health research & scientific review
Through the Global Autism Public Health Initiative, our aim is to empower local communities to seek out and protect the human rights and public health of their fellow citizens with autism. This includes cultivating more compassionate societies by enhancing autism awareness, building autism health services to improve access to early diagnosis and intervention, and improving scientific understanding of the prevalence and causes of autism around the world. None of this can be accomplished without collaboration, and every part of this mission can yield benefits to communities beyond those where the efforts are taking place.
In an extraordinary demonstration of collaboration, government representatives from eleven South Asian countries participated in the Conference on Autism Spectrum Disorders and Developmental Disabilities in Bangladesh and South Asia and unanimously adopted the “Dhaka Declaration” to the United Nations.
While the Dhaka Declaration provides a roadmap for cooperative autism activities in South Asia, its implications reach far beyond the region. Whether it is written in English or Bangla, whether you are reading it here in the US or abroad, the language is universal and the message is clear–together we can change the future for all who struggle with autism and developmental disabilities.
Below are selected excerpts from the Dhaka Declaration, accompanied by some of the images I captured while visiting schools, hospitals, and centers for individuals with autism and developmental disabilities in Dhaka City and its rural outskirts. It is my hope that the following will shed new light and offer a clearer perspective on why the global work that Autism Speaks supports is critically important, not only to autism communities in Bangladesh and South Asia, but to the global autism community as a whole. It is my hope that these words and these images touch you as they touched me.
Concerned that, despite increasing evidence documenting the effectiveness of early interventions in improving the overall functioning of the child and long-term outcomes, children and families in need often have poor access to services and do not receive adequate treatment and care …
Deeply concerned at the prevalence and high rate of autism in all societies and regions and its consequent developmental challenges to long-term health care, education and training as well as its tremendous impact on communities and societies…
Recalling that children with developmental disorders and their families often face major challenges associated with stigma, isolation and discrimination as well as a lack of access to health care and education facilities…
Inspired further by a vision that all individuals with autism and developmental disorders ought to receive adequate and equal opportunities to enjoy health, achieve their optimal developmental potential and quality of life, and participate in society…
(We) Adopt this Declaration with the objective of promoting stronger and coordinated actions in the region and globally towards the improvement of access and quality of health care services for individuals with autism and developmental disorders.
I thought you might enjoy seeing a few highlights from Andy Shih and Michael Rosanoff’s recent efforts in Bangladesh. This is a country where resources are very low, and there is a great need to protect the rights and improve the treatment of people with autism. Yet despite few resources, this country is stepping up to improve services for all people with autism in their country. Saima Wazed Hossain from Bangladesh remarked at a recent United Nations meeting that, if Bangladesh can tackle the challenges of autism, any country can. Indeed, it was Bangladesh that co-sponsored the UN conference that brought together leaders from many countries, the WHO, and key White House staff to focus on the needs of people with autism.
Andy and Michael, with the help of several experts from the US, are providing technical assistance and helping galvanize the Bangladesh government and other leaders to improve the lives of people with ASD. What is noteworthy is that this effort requires very little in terms of money from Autism Speaks but can have a transformational effect on an entire country.
Geri Dawson, Chief Science Officer
Autism Conference Ends with High Hopes
The landmark autism conference ended in the city yesterday as its chief architect, Saima Wazed Hossain, hoped that the two-day meet would generate new hopes among the families in and outside the country. Read more …
Call for quality healthcare for persons with autism
An international conference on Autism Spectrum Disorders and Development Disabilities in Bangladesh and South Asia adopted the “7-point Dhaka Declaration,” with a call for promoting stronger coordinated actions in the region and globally. Read more …
Autism Meeting Ends with ‘Great Response’
The two-day international conference on autism concluded on Tuesday with pledges from the World Health Organization to support Bangladesh in autism care. Read more …
The first major study on runaway behavior among children with autism confirms that it is both common and extremely stressful for families. Yet relatively few families are receiving professional help or guidance. These insights are among the preliminary results of the IAN Research Report: Elopement and Wandering, a project of the Kennedy Krieger Institute’s Interactive Autism Network (IAN) funded by Autism Speaks, the Autism Science Foundation, and the Autism Research Institute. For more, see our news report on the Autism Speaks Science page. And please leave us a comment about your experience.
Saima Hossain almost always has a smile on her face. It’s there when she juggles the demands of her four adorable children. It was there when she confessed to being nervous before her speech at the United Nations. She even smiled when she asked me, half seriously, “What have you gotten me into?”
It seems the only time Saima doesn’t smile is when she is talking about autism. A licensed school psychologist, Saima knows that the daily struggle of those touched by autism is no laughing matter. When she talks about autism, she is thoughtful and knowledgeable, and her passion to make a difference is palpable. “I see this as my life’s work,” she told me.
Saima Hossain addresses UN diplomats and guests on World Autism Awareness Day 2011
I first met Saima, the daughter of the Prime Minister of Bangladesh, two years ago at a World Autism Awareness Day event that Autism Speaks hosted here in New York. I was impressed with her poise and passion even then. But I didn’t get a chance to speak with her at length until last September when Autism Speaks hosted its annual “World Focus on Autism” event to raise awareness among world leaders converging for the UN General Assembly.
We talked about the challenges that individuals and families affected by autism face in Bangladesh, a poor country of over 162 million people in Southeast Asia. Saima conveyed her deep desire to make a difference in the lives of Bangladeshi children as well as all children who struggle with autism. At the end of our long conversation, we agreed to explore bringing our Global Autism Public Health (GAPH) initiative to Southeast Asia.
I can tell you that our collaboration with Saima has already reaped great rewards for Autism Speaks and the families we serve. For example, with Saima’s help, Autism Speaks and Bangladesh’s Permanent Mission recently co-hosted a UN celebration of World Autism Awareness Day. The many world diplomats attending included UN Secretary-General Ban Ki-Moon. He and other influential guests expressed their solidarity with our cause and listened to a panel of experts and advocates (including Saima) who eloquently explained how international collaboration will speed the answers we need to help all who struggle with autism—including families here in North America.
Next week, I will travel to Dhaka, Bangladesh, with Dana Marnane, Autism Speaks’ vice president of awareness and events, and Michael Rosanoff, associate director of public health research. There we will participate in the launch of GAPH-Bangladesh and co-host a conference — “Autism Spectrum Disorders and Developmental Disabilities in Bangladesh and South Asia” — together with the Bangladesh government, the Centre for Neurodevelopment & Autism in Children (Bangabandhu Sheikh Mujib Medical University), the World Health Organization (WHO), and WHO’s South East Asian Regional Office (SEARO).
Our goal is to boost regional awareness and advocacy for individuals and families touched by autism. We will be joined in this effort by Bangladesh Prime Minister Sheikh Hasina Wazed and her ministers as well as regional dignitaries including Indian National Congress President Sonia Gandhi, the First Lady of Sri Lanka Madam Shiranthi Rajapaksa, and the Second Lady of the Maldives Madam Ilham Hussain — all of whom have expressed their desire to learn more about autism and explore how they can collaborate with each other and Autism Speaks.
Michael and I have been in daily contact with Saima in the past two weeks, and her team in Dhaka has been amazing. We’re awed to see this tremendous endeavor take shape, gain momentum, and become one of the region’s most anticipated events. We know this is the beginning of much hard work, even as it is giving us and the autism community of Bangladesh and South Asia a sense of pride and hope for tomorrow.
For news coverage of the ‘Autism Spectrum Disorders and Developmental Disabilities in Bangladesh and South Asia’ Conference, visit here.
This month has been a tremendously exciting time in autism research, as our blog posts make clear. Naively, I’ve been waiting for a pause in the torrent of news to introduce myself. That’s not looking likely, so allow me to shoehorn a quick intro—and a couple questions for you.
Three weeks ago, I stepped into the newly created position of Autism Speaks’ director of science communications. It’s now my privilege to suds and squeegee your window onto the science that donor dollars are funding. I’ll also be enlisting our science staff to answer your questions and generally provide perspective on some of the splashy—and sometimes confusing—headlines in the national news.
By background, I’m a science journalist and medical writer. For the last 20 years, I’ve been a regular contributor to national magazines such as Discover, Popular Science, Parents, Parenting, and Prevention. I’ve also written a few science books for the general reader, the most recent being Good Germs, Bad Germs.
The science staff at Autism Speaks has always been passionate about communicating with families affected by autism and with everyone who cares about enhancing the lives of the remarkable individuals on the spectrum. I’m here to facilitate their conversation with you—in both directions.
Perhaps you’re a volunteer and want resources that can help you explain the nature and importance of the research we fund. Perhaps you have a child affected by autism and would consider participating in research. Perhaps you are a parent who is looking forward to answers and new treatment approaches that will help your child. Or perhaps you are a high-functioning teenager, college student, or other adult on the spectrum and want to know more about studies that relate to you (the link goes to just one example).
In whatever way you’re comfortable, we want to involve you in our scientific mission: To improve the lives of all who struggle with autism. To that end, I’d love your input on some of the new avenues of communication we’re considering. Would you please take a moment to answer our two-question survey? Please feel free to provide additional feedback in the comments section. Thanks!
Translational research in autism converts complex scientific discoveries into real life benefits for those living with autism spectrum disorders (ASDs). Earlier this year, I had the privilege of organizing and moderating a translational research symposium we called “Autism Spectrum Disorders: From Genes to Targets to Treatments” at the New York Academy of Sciences. The symposium was made possible through funding from Autism Speaks. Indeed, sponsorship of meetings like this is an essential part of Autism Speaks’ commitment to advancing innovative autism research.
The New York Academy symposium brought together respected experts working on translational autism research from the proverbial bench to the bedside. The day was filled with stimulating scientific discussion that helped those of us involved in this research to align our research priorities.
In this week’s “Science in the City” podcast from the New York Academy (click the image below to access the podcast), you can listen in as two of the symposium’s speakers offer a behind-the-scenes look at the new technologies and treatments that could redefine how we understand autism. Eric Hollander, of the Albert Einstein College of Medicine, talks about using oxytocin, a brain chemical that fosters social bonding, as a potentially treatment for aspects of autism. And Timothy Roberts, of the Children’s Hospital of Philadelphia, discusses his use of brain imaging to identify early markers of autism—such as a tell-tale delay in how a child responds to voices and other sounds.
For more information about the translational research Autism Speaks funds, please visit our Grant Search portal, where you can learn more about specific studies on technology development, biomedical interventions, and more.
We’d love your feedback. So please leave a comment and respond to our polldaddy question of the day below the podcast link. Thanks.
Click the image to hear the podcast.