In December 2010, Autism Speaks joined the Albanian Children Foundation and the Albanian Ministry of Health to develop a regional partnership that can advance autism services and research in South-East Europe. At that meeting, members of five ministries of health (Albania, Bosnia and Herzegovina, Croatia, Macedonia and Slovenia), the Albanian Children Foundation and Autism Speaks pledged to collaborate with support from the World Health Organization (WHO).
Specifically, the newly formed South-East European Autism Network (SEAN) pledged to:
- Raise public and professional awareness in the region
- Provide information resources for parents and professionals
- Collect public health data on the locations of individuals with autism
- Conduct professional training in the areas of diagnosis, clinical management and early intervention
- Provide evidence-based services for both children and adults
- Support the establishment of a regional committee to meet biannually with the goal of developing guidelines and recommendations on public health and autism
Over the last 12 months, Autism Speaks has been working with our partners in the region to ensure that the network is properly organized, identify national coordinators and grow the SEAN membership. Bulgaria, Kosovo and Montenegro recently signed the pledge; and Greece and Serbia may also soon join.
Last week, I and Andy Shih, Ph.D., Autism Speaks vice president for scientific affairs, attended the first official SEAN network meeting, held in Ljubljana, Slovenia with the support of the Slovenian Ministry of Health and the Institute of Autism Spectrum Disorder. Over 300 people attended this conference for national coordinators, local professionals, researchers and families.
Among the speakers was Antonio Persico, M.D., from Campus Bio-Medico University in Rome, who talked about the importance of multi-disciplinary approaches to help identify persons with autism. Connie Kasari, Ph.D., from University of California Los Angeles, presented on current models of early intervention and evidence for its delivery in schools. Lynn Brennan, Ph.D., an independent Applied Behavior Analysis (ABA) consultant, introduced a new video-based parent training ABA program she is developing in collaboration with Deborah Fein, Ph.D., from the University of Connecticut.
The conference was followed by a meeting for the national coordinators, the SEAN secretariat (Albanian Children Foundation) and technical advisors from WHO and Autism Speaks. Andy delivered the welcome alongside representatives from the Slovenian Ministry of Health and the Slovenian Ministry of Labour, Family and Social Affairs.
The national coordinators made short presentations on the state of autism care and research in their country. Though these countries vary greatly in the degree to which they’ve addressed autism, all face common challenges. In many cases, for example, diagnostic services are not available outside of a country’s capital city. Many countries simply lack the resources and manpower to diagnose the increasing number of children with autism who are being referred to their clinics. In addition, all the national coordinators spoke of the need to have more diagnostic, screening and awareness materials translated into their national languages. They also described a general lack of information on how many children are affected by autism within each country and a lack of public health infrastructure to identify undiagnosed children and adults.
In prioritizing SEAN’s first projects, we agreed to design a survey to assess baseline public health data from each country. This will help each country assess what it needs to improve clinical practice and measure future progress.
The network will also work together to translate Autism Speaks tool kits and other awareness materials and to increase national and regional awareness through World Autism Awareness Day and Light It Up Blue.
The network’s training priorities will revolve around diagnosis and early intervention. Autism Speaks will organize a training workshop at the Regional Centre for Autism in Albania later this year. The network also agreed to explore ways to work more closely with the WHO South-East European Health Network.
SEAN members plan to meet again in April 2013 in Sarajevo, Bosnia and Herzegovina. At that time, the national coordinators will report on the progress they have made in improving awareness and services for families within the region since these first crucial meetings.
Our efforts in South-East Europe are an important part of our Global Autism Public Health Initiative (GAPH). GAPH embodies Autism Speaks’ commitment to the global mission of improving the lives of all individuals with autism. Our international partners include families, researchers, institutes, advocacy groups and governments in over 30 countries. By working together, our partners contribute significantly and collectively to a greater understanding of autism.
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.]
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 …
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
Today is Thursday, day 2 of the conference and day 5 of our trip here in the Philippines. The session began with a recap of yesterday, given by one of the developmental pediatricians in attendance. By the way, in a country of almost 100 million people, there are less than 40 developmental pediatricians in all of the Philippines. Most are here at the conference.
It has been amazing to see the dedication and kindness in the parents, professionals and teachers in attendance. Everyone wants to learn from each other so that we can all better help families coping with autism. It’s also been fascinating to see a complete lack of divisiveness in the Filipino autism community. They are united in the common goal of helping families, despite organizational affiliations, personal beliefs or social status. A model for the rest of the world with similar goals.
The morning’s presentations focused on the neurobiology of autism, from genetic findings to brain structures and neuroimmunology. Young Shin Kim from Korea talked about the epidemiology of autism around the world – what we know and what we still need to learn. She began by turning the conference room of 1000 attendees into a classroom on basic epidemiology,explaining the difference between prevalence and incidence – terms that even seasoned epidemiologists can easily confuse. Simply put, prevalence measures the total number of individuals in a population with a given disorder at a single point in time. Incidence, on the other hand, describes the number of new cases in a population over a certain period of time. Dr. Kim emphasized that until we can accurately measure the incidence of autism over time, we will not be able to fully understand if we’ve seen a true rise in prevalence from 20 years ago. The talk concluded with an update of the first ever prevalence study being conducted by Dr. Kim in South Korea, supported by Autism Speaks funding. Based on preliminary findings, it is becoming ever clearer that autism truly knows no cultural or geographic boundaries.
Helen Tager-Flusberg, after delayed flights and an unexpected layover, arrived early this morning, just in time to speak this afternoon on language in autism. Tomorrow, Autism Speaks will be hosting an interactive discussion about our Global Autism Public Health Initiative and we can sense the excitement of the conference goers. Come back tomorrow to hear how it went!
By Michael Rosanoff, MPH, Assistant Director, Public Health and Scientific Review and Dana Marnane, National Director Communications and Marketing, Autism Speaks
The International Autism Conference in the Philippines officially kicked-off this morning with a bang! President of the Philippines Gloria Macapagal-Arroyo and the First Gentleman Atty. Jose Miguel Arroyo gave poignant speeches, both expressing their strong support to address the growing problem of autism that exists in the Philippines. Over 500,000 individuals living here have autism and only a small fraction of those are receiving the services they need. President Arroyo thanked all the participants for being active in the autism community and applauded the efforts of groups like the Autism Hearts Foundation and Autism Speaks. In fact, President Arroyo specifically noted the Philippines’ collaboration with Autism Speaks in launching the Global Autism Public Health Initiative to help address the needs of all Filipinos struggling with autism. It was really an honor to be a part of this touching opening ceremony that included a special performance by a gifted young boy with autism who sang a song in Tagalog about hope and love. In addition, there was a hand lighting moment that truly showed how all the groups – professionals, advocates, and government – are coming together, hand-in-hand, to address autism in the Philippines. Autism Hearts Foundation, the event organizers, provided beautiful Filipino clothing to all the speakers for the opening ceremony. Women wore Kimonas and men wore the barong.
The first day’s speakers addressed the audience of nearly one thousand teachers, parents, doctors and policy makers. The turnout was terrific, giving us an idea of just how strong the desire to learn more about autism is among the Filipino community. Lucky for them the conference speakers are some of the most experienced and well-respected researchers in the world. Their discussion topics today included the changing nature of autism diagnosis, co-morbidities seen with autism, the importance of early identification and evidenced-based treatments.
On a more personal note, we met a young mother today who was attending the conference as part of her education on autism. She is working on her earning her Master’s degree to enable her to better care for her six year-old daughter with high-functioning autism. Her daughter recently put together a 500 piece jigsaw puzzle … with the picture side down! While individuals with autism face many challenges they can often also have many gifts.
I am getting ready to head to Manila, Philippines for the first ever International Autism Conference (IAC) to be held in that country and the largest to be held in that region. It is being organized by the Autism Hearts Foundation and Autism Hearts Philippines and among the sponsors is Autism Speaks.
Medical experts from around the world will be onsite to present the most current research and information on diagnosis, assessment and treatments of ASD, as well as to review current policies to create a baseline from which to support individuals on the spectrum and their families. I am attending to present on autism awareness along with two of my colleagues from the science team – Andy Shih, Ph.D. and Michael Rosanoff, MPH.
The conference will also launch the Global Autism Public Health initiative in the Philippines (GAPH Philippines), a partnership between the Autism Hearts Foundation and Autism Speaks. The GAPH focuses on increasing public and professional awareness of ASD; increasing research expertise and international collaboration through training of autism researchers, with a focus on epidemiology, screening and early diagnosis, and treatment, and enhancing service delivery by providing training and expertise to service providers in early diagnosis and intervention.
Stay tuned later on next week for an update. The conference runs Feb. 3-5 and I hope to be able to post at least one or two recaps. I will also be tweeting if anyone wants to follow me at twitter.com/dmarnane!
By Dana Marnane, National Director Communications and Marketing, Autism Speaks
This part 2 of a 2 part series is from Michael Rosanoff and Andy Shih, Ph.D. who both work in the Autism Speaks science department. This second post is from Andy Shih. Both guest bloggers bios are below the post.
The release of the latest prevalence data by the CDC last week was important in two ways. One, of course, is its implication for the role of environmental risk factors in autism. The other is how the finding enhances awareness and supports our call for more money for research.
The same can be said for our international epidemiology efforts. As part of our Global Autism Public Health initiative (GAPH), we have been funding and planning prevalence studies with our international partners and colleagues for the past several years. In South Korea, for instance, we are expecting the publication of the first ever prevalence estimate in early 2010. We also have prevalence studies in various stages of development in Albania, India, Ireland and Mexico. All these efforts involve members of our International Autism Epidemiology Network.
In addition to the contributions these studies can make to our understanding of autism, they will also help raise awareness and inform policy development in parts of the world where affected individuals and families struggle with severe stigma, and in many instances, little or no support and care. Another way to look at it is that when you conduct a prevalence study, you are basically asking members of the autism community to stand up and be counted. When that happens, especially if the number is anywhere close to the 1 percent figure we have here in the States, their plight and needs can no longer be ignored.
Andy Shih, Ph.D. is the Vice President of Scientific Affairs at Autism Speaks, where 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. Andy also leads Autism Speaks’ international scientific development efforts, such as the Global Autism Public Health Initiative (GAPH). Andy joined the National Alliance for Autism Research (NAAR) in 2002.
Prior to joining NAAR, Andy had served as an industry consultant and was a member of the faculty at Yeshiva University and New York University Medical Center. He earned his Ph.D. in cellular and molecular biology from New York University Medical Center.
Andy’s research background includes published studies in gene identification and characterization, virus-cell interaction, and cell-cycle regulation. He was instrumental in the cloning of a family of small GTPases involved in cell-cycle control and nuclear transport, and holds three patents on nucleic acids-based diagnostics and therapeutics. Andy is a resident of Queens, where he lives with his wife, daughter and son.
Michael Rosanoff, MPH, is a member of Autism Speaks etiology team and manages the organization’s epidemiology and public heath research grants. Since joining the organization in 2007, Michael has been the staff lead in overseeing the International Autism Epidemiology Network (IAEN) and is part of the development team for the Global Autism Public Health Initiative (GAPH). He is also a member of Autism Speaks Grants Division, helping oversee the administration of the organization’s grant-making process for research.
Prior to joining Autism Speaks, Michael conducted independent research at the Gertrude H. Sergievsky Center, a clinical, epidemiological and genetic research center at Columbia University Medical Center focused on developmental disorders of the nervous system. His research background is in genetic and psychiatric epidemiology as well as behavioral neuroscience and neuroimmunology, with publications in the fields of epilepsy and depression. Michael earned his Master of Public Health (MPH) in epidemiology from Columbia University’s Mailman School of Public Health and resides in N.J.