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 …
Autism Speaks participated in the launch of GAPH-Bangladesh and co-hosted 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). Andy Shih, Ph.D., vice president of scientific affairs for Autism Speaks, provides more background in ‘Autism Speaks Goes to Bangladesh.’
Here is the official press release, International Conference Launches Revolutionary South Asia Autism Network.
Several news outlets provided coverage of the “Autism Spectrum Disorders and Developmental Disabilities in Bangladesh and South Asia” Conference. Here are some major headlines:
Sonia Gandhi for South Asian partnership on autism (The Hindu)
Congress Party president Sonia Gandhi on Monday praised Bangladesh’s “path breaking innovations” in micro-finance, education, women’s empowerment and public health as she underlined the need for a partnership in South Asia to provide affordable services to millions of autistic children. Read more.
Meeting on autism begins in Dhaka (BBC)
A two-day international conference on autism has begun in the Bangladeshi capital, Dhaka. Experts and policy makers from around the globe will focus on promoting awareness on autism in Bangladesh and other South Asian countries. Read more.
Recognise gifted kids as persons: Sonia (bdnews24.com)
The first-ever international conference on autism in the region has kicked off amid tight security and with high hopes of generating ‘greater awareness’ on the plight of the ‘gifted’ children. Read more.
Sri Lanka’s First Lady speaks at the autism conference in Bangladesh (ColomboPage)
Sri Lanka’s First Lady Shiranthi Rajapaksa addressed the two-day international conference on autism that began today at Ruposhi Bangla Hotel in Dhaka to seek ways to enhance autism related services in Bangladesh as well as in the South Asian region. Read more.
Meet’ll promote autism cause, says Saima (bdnews24.com)
As Dhaka is ready to host the region’s first-ever international conference on autism on July 25 and 26, the child psychologist who envisaged the high-profile meet regards it as a ‘way forward for autism awareness’. Read more.
Better care for autistic children (The Financial Express)
Autism is a disease specially noted in children that afflicts sufferers with varying degrees of mental impairment. Cases of autism are not uniformly the same. Some autistic children are seen to have reasonable intelligence to produce even average results in examination. But others are seen to be performing too poorly in academics from their mental handicaps. One similarity seen among autistic children in their varying degrees of mental capacities is the inability to communicate or form relationship with others. Read more.
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.