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.
As head of clinical programs at Autism Speaks, I oversee a number of vital resources for researchers studying the causes and treatment of autism. Today brought the publication of a new and revealing study made possible by Autism Speaks’ Autism Genetic Resource Exchange (AGRE).
Autism researchers have been studying twins for years for insights into the genetic and nongenetic factors that influence the development of autism. One of the most powerful ways to do so is to study twins (both identical and non-identical) where at least one of the pair has autism. This approach allows us to look at how often both twins receive a diagnosis of autism. Study of identical twins, who share 100 percent of their genes, then helps us determine the degree to which autism is inherited, or genetic; and comparison to fraternal twins, who share around 50 percent of their DNA, allows us to understand how environmental influences add to the risk of autism spectrum disorder (ASD).
But until now we’ve had only three, small twin studies, which together looked at just 66 twin pairs–a number too small to produce reliable conclusions. Still, these studies were the best we had, and theysuggested that when one identical twin develops an ASD, the chance of the other twin developing the disorder is as high as 90 percent. These same studies showed little to no overlap among fraternal twins – leading to the conclusion that inherited genes alone produced the risk.
Now comes the game changer. The California Autism Twins Study (CATS) is the largest ever study of twins with ASD, with scientifically reliable information on 192 twin pairs, both identical and fraternal. It was conducted by a group of renowned researchers in collaboration with the AGRE team. AGRE clinical staff collected DNA and helped perform the home-based diagnostic and cognitive testing on many of the participants, using scientifically validated research measures for diagnosing ASD.
So what were its dramatic findings?
It found that when one identical twin develops autism, the chance of the other twin developing the disorder is 70 percent. More surprisingly, it documented a whopping 35 percent overlap among fraternal twins. This is strong evidence that environmental influences are at play. Moreover, the 35 percent “both twins affected” rate is higher than the 3 percent to 14 percent overlap between different age siblings. (i.e. If one child in a family has autism, there is a 3 percent to 14 percent chance that a younger sibling will develop it.) This suggests that there are environmental influences uniquely shared by twins–for instance, in the womb and perhaps during birth.
In other words, we now have strong evidence that, on top of genetic heritability, a shared prenatal environment may have a greater than previously realized role in the development of autism in twins
This has important implications for future research. For instance, is there a particular time period during the pregnancy when a child’s brain development is particularly vulnerable to environmental influences? And what might these influences be? Already we have evidence implicating such factors as advanced parental age, maternal nutrition, maternal infections (especially flu) during pregnancy, and premature and/or underweight birth. Indeed, multiple-birth pregnancies are themselves associated with increased risk of developmental disorders such as cerebral palsy and autism.
Only by further studying these issues can we begin to provide parents and parents-to-be with the reliable guidance they seek and need. Autism Speaks is currently investing in several studies that are exploring how environmental factors increase the risk for ASD. As we go forward in these endeavors, we greatly value your input. So please write and share your comments on our blog and website. For more on the study, read The Womb as Environment.
On July 5th, NBC Nightly News came to Andy Shih, Autism Speaks’ vice president of scientific affairs, for perspective on the game-changing California Autism Twins study. To view the clip please visit here.
More national television media coverage of the ground-breaking results of the California Autism Twin study–research made possible by the Autism Speaks Autism Genetic Resource Exchange (AGRE) and Autism Speaks’ supporters such as you.
This guest post is by Andy Shih, Ph.D., the Vice President of Scientific Affairs at Autism Speaks.
When I heard about the terrible earthquake and tsunami in northeastern Japan the early morning of March 11, I immediately emailed parents and professionals I met in Tokyo and Nagoya last summer. Fortunately, they were all fine, although many said it was the strongest quake they’ve ever experienced. But other than the inconvenience of some of them having to spend the night in their offices because the trains were not running, most of them, like the rest of the country, seemed to take things in stride and tried to get back to normal.
Normal proved to be elusive in the days that followed as the scope of the devastation became more clear. And with the emerging realization of a possible nuclear crisis, the tone of emails from our colleagues and friends also changed.
On March 13, a researcher wrote: “It is not our culture to ask for help from others, but I don’t think it is the situation to worry about people’s perception.” A day later, a parent wrote: “There should be a considerable number of people with autism who are panicking with this truly unpredictable situation. They can be staying at home with fear, or at evacuation camps that are totally unfamiliar to them…”
Worried about a growing crisis for our families our staff fanned out to seek expert advice on how we can best help. The answer was to make an exception and use Autism Cares, an Autism Speaks program historically focused on helping individuals and families affected by natural disasters in the U.S., to help our families in Japan.
So as recommendations from experts started to come in, we launched our fund-raising effort on Autism Cares.
All experts we’ve contacted so far, from science advisers like Ezra Susser, Ph.D. of Columbia University School of Public Health, and a member of our Scientific Advisory Committee, to professional organizations like Direct Relief, recommend that given the many ongoing international aid efforts already in place, targeting the Japanese autism community might be the best use of Autism Speaks’ efforts and resources.
They also suggested Autism Speaks work through a leading community organization that shares our interests and goals, since they probably know the needs on the ground best. Given Autism Speaks is already in contact with several key autism/developmental disability advocacy organizations in Japan, the consensus was that we partner with them to speed relief to individuals and families in need.
However, in order to effectively target our aid as well as track and measure our impact, we still needed to better understand the needs and priorities on the ground. Fortunately, some of our researcher and parent contacts are traveling to affected areas this week as part of a government assessment/aid team, and we have requested a list of their consensus priorities based on the information they collect. Once we receive the consensus priorities, the plan is to work with our partners to establish processes and procedures to forward the resources we have raised.
In the meantime, we have asked our Autism Speaks colleague Shelley Hendrix to serve as an information resource for our Japanese contacts. Shelley is experienced in helping families after natural disasters and played a key role in our relief efforts following Hurricane Katrina several years ago, as she herself was greatly impacted by that natural disaster.
While we are still gathering information to inform the best use of our resources, the needs are undeniable and seem to grow daily. In addition to our families from communities devastated by the March 11 earthquake and tsunami, the Japanese government has recommended extending the evacuation zone around the stricken Fukushima Daiichi Nuclear Plant to 19 miles, affecting approximately 140,000 residents. This is of course more conservative than the 50-mile evacuation zone advisory issued by the U.S. Embassy.
Based on current consensus global prevalence estimate of 1%, up to 20,000 individuals and families with ASD will be uprooted and forced to navigate unfamiliar and difficult new environments. They desperately need your and our help NOW. Please visit Autism Cares to make a donation to support families in Japan.