The Autism Speaks science team traveled to Shanghai, China, last week with the goal of enhancing collaboration among Chinese and North American scientists. Despite the challenges of speaking different languages, we learned a lot from each other. Our Chinese colleagues were eager to hear about new research and treatments being developed in North America. The Americans were impressed with the technological prowess of the Chinese.
A prime example of this technological power is the Beijing Genome Institute, the largest genome sequencing institution in the world and a new Autism Speaks partner. 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. (See our related news item.)
Another example is a recently launched Chinese program that sends text messages to new mothers, alerting them to the early signs of autism. Chinese researchers are studying whether this innovative “eHealth” strategy results in better referral, assessment and intervention rates for children with early symptoms.
Although my conversations and learnings from my Chinese colleagues were enlightening and we planned many future collaborations, the most significant moment for me was talking to 200 Chinese parents of children with autism. I walked into a room filled with mothers and fathers eager to hear new information about autism. Through a translator, I described new research findings and treatments and fielded questions from the audience.
The questions were remarkably similar to those I hear from parents in the United States. One mother told me that her son had frequent tummy aches and constipation; she wondered if this could be related to his autism. Another parent asked what she should do about her daughter’s fear of fireworks, a common part of special events here. Should she keep her at home and miss the family outings? A father showed me a large bag filled with medicines he had purchased through the mail and asked if I thought they would help his child.
We talked about the association between autism and gastrointestinal problems and how treating these physical problems can relieve discomfort and, so, help children gain more from their educational programs. We talked about auditory sensitivities and discussed a range of strategies for helping children cope with loud noises. And we talked about how to evaluate whether a treatment is truly effective and safe for a child.
As our conversation continued, I was struck by the fact that, although China and the United States are very different cultures, autism is a common bond. Parents across the globe are looking for answers to help their children. My hope is that Autism Speaks Global Autism Public Health Initiative will be able to make a difference for these families. By partnering with scientists and clinicians in China, we can translate and adapt many of the tool kits and other resources we have developed here in North America—while also learning from our colleagues and families in China.
Posted by Autism Speaks staffers Simon Wallace, Ph.D., director of scientific development for Europe; Dana Marnane, vice president of awareness and events; and Daniel Lightfoot, Ph.D., director of the Autism Tissue Program
Over the last week, we visited three European countries to explore partnerships with researchers and autism organizations. In particular we’ve been discussing Autism Speaks’ efforts in the areas of awareness, communication, our Global Autism Public Health (GAPH) initiative and the Autism Tissue Program (ATP).
Pulling our suitcases behind us, our first stop was in Stockholm, Sweden, where we met with Prof. Sven Bölte, of the Karolinska Institute for Neurodevelopmental Disorders, to discuss establishing an autism brain bank in Sweden.
As highlighted in a recent Nature article, one of the best ways for scientists to understand how autism affects brain development is by looking directly at the tissue. Just as diabetes researchers must study the pancreas, scientists studying developmental neurological conditions such as autism must study brain tissue. Already, research has revealed altered cell organization in brains affected by autism. This research can continue and progress only by increasing donations of this precious resource. Autism Speaks is working with its partnering brain bank in the UK to expand collections into other European countries.
From Sweden, we traveled to London and shifted our focus from scientific research to autism awareness. In recent years, Autism Speaks has led global awareness efforts through initiatives such as our Ad Council campaigns, World Autism Awareness Day, GAPH and Light it up Blue. The measurable success of these efforts has led to expanded partnerships with European organizations. During our London visit, this crystallized in a meeting with European parent organizations and other autism advocates.
Present at the meeting were representatives of Autism Europe (which includes over 80 member associations), Autistica, Autism France, the Celtic Nations Autism Partnership, London’s Centre for Research in Autism and Education, the Hungarian Autism Society and Irish Autism Action. We spent the day learning about each other’s campaigns and brainstorming ways to increase global autism awareness. Everyone was familiar with our Light it Up Blue initiative and were actively planning their increased participation in the year ahead. The overall feeling was that, together, we can accomplish so much more. We will continue exploring this fruitful partnership in the months ahead.
Next it was a short hop to Utrecht, in the Netherlands, at the invitation of Nederlandse Vereniging voor Autisme (NVA), the country’s national autism organization. Its staff and members were eager to learn more about GAPH and our international awareness initiatives. Our team also took this opportunity to explore the development of a brain tissue bank in the Netherlands, to match our efforts in the UK and Sweden.
A highlight from this visit was the Netherlands National Autism meeting, the first national meeting of Dutch autism families and their research community. As special guests, we heard about Dutch research examining the relationship between genes and behavior, autism prevalence, nutrition, the elderly and autism, enabling technology and an intervention for young people with autism to help them understand sexuality. Over the next few weeks we will be inviting some of these researchers to describe their studies on our science blog.
There is much we can learn by working together with our European partners, and our visit was an important step in forging closer collaborations involving science and awareness. Goodbye for now; hejdå and dag to our Swedish and Dutch friends!
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 …
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.
There is a lot of research on autism out there. Autism Speaks and many other funding agencies have supported hundreds of millions of research dollars aimed at understanding the causes, diagnosis, and treatment of this highly prevalent disorder. While the findings and number of research publications continue to grow, new questions are arising at an even faster pace. Arguably one of the most important questions to families affected by autism is how these findings can make a difference in the life of their children today? There is an area of research that is particularly focused on answering this question, but it is surprisingly under-investigated and underfunded in autism to date. Dissemination research is designed to take relevant scientific findings and apply them to real world practice.
So how can we turn research data into meaningful and effective treatments? For the first time ever, Autism Speaks will launch a funding mechanism specifically designed to support research on disseminating empirically validated autism diagnostic and treatment approaches to families with currently limited access to these services in the US and around the world.
Among underserved populations, especially in low-resource settings, major barriers to improving the health and well-being of children and families touched by autism are the lack of trained professionals and culturally-sensitive clinical services. Perhaps not surprisingly, much autism research has been conducted in high-income countries and among populations with generally greater access to autism services. Currently very little information is available to guide service practices in the developing world as well as among underserved populations in high-income countries. So, more research in low-resource and under-served communities is needed.
Without innovative health care programs, early detection and early intervention will remain extremely limited among the poor and many ethnic minority groups. Culturally appropriate, scalable, cost-effective, and sustainable methods of service delivery are necessary but typically do not exist in these settings. For example, new and promising research is beginning to show that parents of children with autism can act as co-therapists to deliver behavioral intervention in the home and have beneficial impact on their child’s outcomes. This idea of having community health providers with less training and qualifications than specialists, including family members, deliver services can help bridge the critical gap in communities with limited access to early detection and intervention services.
Autism Speaks’ Global Autism Public Health initiative (GAPH) strives to develop and implement meaningful programs for enhancing autism awareness, research, and health services for underserved communities around the world. As part of the GAPH initiative, Autism Speaks is currently accepting research grant applications that develop and pilot test scalable, community-based, culturally-sensitive autism detection and early intervention programs among underserved communities in the United States and internationally.
For more information about this RFA, please click here.
Please note that only investigators holding full-time faculty appointments, professional affiliations or the equivalent at non-profit, accredited academic, research or educational institutions (including schools of medicine and allied health specialties) are eligible to apply.
This guest post is by Andy Shih, Ph.D., the Vice President of Scientific Affairs at Autism Speaks. He oversees the etiology portfolio, which includes research in genetics, environmental sciences, and epidemiology. He was responsible for the formation and development of Autism Speaks sponsored international autism research collaborations, the Autism Genome Project and the Baby Siblings Research Consortium.
“On the left side of that dam over there, where middle class families live, you have electricity and running water,” he gestured out the window, “but on the other side, where most of the poor families served by our clinic live, there’s still nothing.”
Shuaib is impatient and always pushing for more progress. He leads an Autism Speaks-funded prevalence study in the Valley, the first of its kind in Africa. The study aims to generate data to inform local policy and service development, future research directions, and important clues about genetic and environmental risk factors for autism.
Shuaib was also one of the many local and international advocates and experts we heard from over three busy days at the conference, “Autism and Developmental Disabilities the South African Context,” that Autism Speaks co-sponsored with the KwaZulu Natal University in Durban. Among the many experts and stakeholders who contributed to a comprehensive exploration of the needs of the South African autism community and possible collaborations were Mrs. Mathato Mosisili, First Lady of Lesotho, Mrs. Brigitte Kobenan, founder of Autism Community of Africa, and Ms. Jill Stacey, National Director of Autism South Africa.
While some of the problems discussed, like the lack of services and need for more public and professional awareness, would resonate with any family from the US, South Africa’s unique history and culture also complicate the daily challenges.
“For a mom who wakes up every morning worrying about finding a way to feed her family, a child who doesn’t interact is not necessarily a problem,” explained Shuaib. “She is probably going to see it as a blessing that gives more time for her other problems, not a cause for concern.” Eventually, though, this mother will likely begin to worry as she sees other children beginning to interact and talk while her child falls behind.
Indeed, one of the recurring themes at the conference was how best to prioritize autism and developmental disabilities when so many life-threatening diseases or conditions, such as AIDS, malaria, and malnutrition, compete for limited public health resources.
To someone like Shuaib, however, who because of his own rural upbringing without electricity or running water is probably more attuned to life in the country, such public health policy-making is overly simplistic. As we walked around a small community clinic that anchors our study and staffed mostly by lay community workers trained by the researchers, he drew diagrams in the palm of his hand to explain how autism and developmental disabilities should be a national public health priority for developing countries like South Africa.
He argues that as child mortality decreases, simple math predicts an increase in number of children with developmental disabilities. So instead of seeing mortality and developmental disorders like autism as two distinct public health challenges, they should be tackled as parts of the same problem. Shuaib and his colleagues believe that by addressing autism and related disorders now, South Africa’s public health system can get ahead of the curve, help maximize outcomes for affected individuals and families, and minimize long term costs to society.
During our brief stay, we came to appreciate words like “ironic” as shorthand for the frustration over slow rate of progress almost two decades after the end of Apartheid. I’ve heard more than once how incongruent it seems for a country that hosted a hugely successful World Cup to not even be able to meet the basic healthcare needs of many of its people.
However, the impatience shared by Shuaib and other stakeholders we met in Durban seemed rooted more in optimism than despair. “South Africa is a country in transition,” Shuaib offered, “we are becoming a developed country, and there is so much we can do improve the life of our people if we only have the foresight and will to act.”
Yesterday was the final day of the conference and they saved the best for last (and not just because Autism Speaks was presenting). Dr. Peter Mundy spoke about one of the reasons that children with autism don’t spontaneously share joint attention may be because they find objects to be more interesting than the social world. Dr. Laura Schriebman discussed about how behavior is not random. When a child with autism acts out or tantrums, parents and therapists really need to determine what the antecedent was and how to remove or change it. No behavior occurs “for no reason” – there is always something that has triggered it, it’s just a matter of determining what it is. Dr. Nirit Bauminger spoke about social interaction among adolescents and ways to facilitate friendship. Her research found that individuals with autism can develop great friendships, and that friendships with their neurotypical peers can be very similar to typical peer friendships.
The last session of the day was Autism Speaks. Considering that it was the last session of a long three-day conference, we were surprised and overjoyed by the turnout for out talk. The room was packed, which told us that there was strong interest among the Filipino community about Autism Speaks and how we can help. The three of us – Andy, Michael and Dana – spoke about the Global Autism Public Health (GAPH) Initiative and our experiences around the world. We each explained a different part of the three-pronged process which aims to enhance research, services and awareness in the country through collaboration. The most important part of GAPH is community support – the families, teachers, therapists and doctors. Autism Speaks role is to act as a catalyst to help the community achieve lasting change for families coping with autism. We then concluded our talk by turning the microphone on the audience and posing the question, “what are the greatest needs of the Filipino autism community?” The response from the attendees was terrific and the development of a successful GAPH program looks very promising.
The closing ceremonies included a beautiful performance by Autism Angels – a trio of young women with autism from Autism Society of Philippines families. They sung beautifully. Their performance was followed by the niece of the Borromeos, our conference organizers, who sang an incredibly touching poem written by Charlie Borromeo for his grandson Julien. Julien was the inspiration for the development of the Autism Hearts Foundation, and the International Autism Conference would never have been possible without their leadership. We concluded the way we began with a hand print ceremony where all the speakers and dignitaries dipped their hands in paint to create a mural as a lasting testimony to the coming together for the cause of autism Philippines.
We just want to take this opportunity to again thank the Autism Hearts Foundation, the Autism Society of the Philippines, The First Gentleman’s Foundation, and the UC Davis MIND Institute for their instrumental roles in making the IAC a reality. This conference is a monumental achievement and Autism Speaks is honored to have been a co-sponsor and participating speakers. It has been an educational, touching, and truly unforgettable experience. We thank them for hosting us in their beautiful country and look forward to long-lasting partnerships and friendships.
By Dana Marnane, National Director Communications and Marketing and Michael Rosanoff, MPH, Assistant Director, Public Health and Scientific Review, Autism Speaks