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.
Posted by Simon Wallace, Autism Speaks director of scientific development for Europe
A fine mist was rolling in off the Atlantic as we made our way to the opening session of last week’s International Conference on Autism at the National University of Ireland, in Galway. Autism Speaks partnered with the university and the American Ireland Fund to put together a program that attracted not only researchers and clinicians, but also parents and policy makers. In all, more than 600 delegates attended this productive conference in the beautiful town of Galway, on Ireland’s west coast. The meeting was very much the brainchild of Autism Speaks board member Adrian Jones, a native of Ireland who now works for Goldman Sachs, in New York City. (You can view the full program here.)
We received a warm welcome from National University of Ireland President James Browne before spending two days hearing from international experts on advances in clinical practice, early intervention therapies and educational supports. As hoped, the presentations spanned the range of evidence-based practices in the United States and Europe. This included important information coming out of our own Autism Treatment Network (ATN) and other Autism Speaks programs and initiatives.
The morning presenters included Helen McConachie, of Newcastle University, who spoke about early intervention. Gillian Baird, a pediatrician from Guy’s Hospital in London, spoke as the chair of a committee that developed the United Kingdom’s clinical guidelines on referral and diagnosis of children and teenagers with autism. Also presenting was Cathy Lord, of Columbia University. Lord has been centrally involved in the upcoming revision of the Diagnostic and Statistical Manual (DSM), which physicians use to diagnose autism and related disorders. She explained that there would no longer be three separate diagnoses of autism, Asperger syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS). In the future, these will all be included under the unifying diagnosis of autism spectrum disorder (ASD). This is to avoid the persistent inconsistencies in how physicians assign children to one of the three subtypes.
Afternoon workshops included a presentation by our own Vice President for Translational Medicine Rob Ring, who spoke about the latest evidence for clinical use of medications for patients with autism. ATN Program Director Nancy Jones presented on the network’s ongoing work developing best practices and clinical guidelines.
Connie Kasari, of the University of California-Los Angeles, presented the second day’s keynote address, which focused on the large numbers of children with autism who receive services in schools—and the need for more research on the effectiveness of these services. Among the interesting research findings that Kasari described was the insight that young children with autism are more “socially connected” than we previously assumed. Around 20 percent, she explained, enjoy close friendships. Intriguingly, Kasari has observed that this social connectedness drops when schoolchildren with autism go out for recess.
For me, the highlight of the second day was a presentation by Jamie Reilly, who spoke of the challenges growing up with autism and how he went on to graduate from Ireland’s top-rated university and is now studying for a master’s degree in Belfast. Reilly spoke of the importance of his family—in particular how his “mum” taught him strategies for overcoming many of the difficulties he encountered. He also described how he occasionally continued to make mistakes—for example, saying “good riddance” rather than “goodbye” to one of his teachers at the end of a lesson. With his fantastic sense of humor, Reilly kept us laughing throughout his presentation.
We also heard from Jamie Reilly’s father—James Reilly, a physician and Ireland’s current minister of health. Minister Reilly’s emotional presentation spoke of his pride in his son’s achievements and respect for his wife’s determined efforts to ensure that Jamie had the opportunities he needed. The minister spoke of the need to provide the best evidence-based approaches to help children with autism reach their full potential. He also announced his ministry’s commitment to provide an additional $4 million over the next three years to improve diagnostic and early intervention services. Minister Reilly will also be creating a senior post to coordinate autism-related activities across Ireland’s departments of health and education.
As we wrapped up this fantastic conference, many delegates told us that this was the largest conference ever held at the university and one that stood out in the sheer number of stakeholders from the autism community. We left for our homes and workplaces with the feeling that we are on the “front foot” for the New Year, thanks to what we learned about the latest research and guidelines on evidence-based practices.
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 hope you enjoy our report on Science Department Monthly Highlights, focusing on major scientific advances and new grants funded by Autism Speaks, as well as the science staff’s media appearances and national/international meetings. Given the size and scope of our science department, we aren’t attempting a comprehensive report here. If you are interesting in knowing more about activities such as tissue donations, participation in clinical trials, and our research networks (e.g. Baby Sibs Research Consortium), please contact me and our science communications staff at email@example.com. Enjoy!
Best wishes, Geri
The dog days of August were anything but quiet for the science department. Highlights included the release of the first major report of the Autism Speaks Baby Siblings Research Consortium. The world learned that autism recurs in families at a much higher rate than previously estimated. For perspective and guidance, the national media turned to our director of research for environmental sciences, Alycia Halladay, PhD. Over the course of 24 hours, Alycia made appearances on CNN, MSNBC, and NPR’s “All Things Considered;” was interviewed by reporters for numerous major papers, news services, and magazines; and even found time to answer parents’ questions via live webchat (transcript here)—the first of an ongoing schedule of live chats to be hosted by science department leadership. Geri Dawson, PhD, our chief science officer, wrote a blog that focused on what the new findings mean for parents.
The science department also hosted a two-day Autism and Immunology Think Tank at the New York City office, with some of the nation’s leading thought-leaders in immunology and inflammatory diseases lending fresh insights to aid our planning of research exploring the immune system’s role in autism spectrum disorders. Glenn Rall, PhD, Associate Professor, Fox Chase Cancer Center and member of Autism Speaks’ Scientific Advisory Committee, and Alycia organized and led the meeting which was attended by senior science staff and experts who study the role of the immune system and inflammation in multiple sclerosis, Parkinson’s Disease, Alzheimer’s Disease, Multiple Sclerosis, inflammatory bowel diseases, and brain development.
Here, then, is the science department’s abbreviated rundown of August highlights:
Major scientific publications published this month supported with Autism Speaks funds and resources
* Recurrence Risk for Autism Spectrum Disorders: A Baby Siblings Research Consortium Study. Ozonoff S, Young GS, Carter A, et al. Pediatrics. 2011 Aug 15. [Epub ahead of print]
* Coming closer to describing the variable onset patterns in autism. Dawson G. J Am Acad Child Adolesc Psychiatry. 2011 Aug; 50(8):744-6.
* Mortality in individuals with autism, with and without epilepsy. Pickett J, Xiu E, Tuchman R, Dawson G, Lajonchere C. J Child Neurol. 2011 Aug;26(8):932-9.
Autism Speaks science staff in the national media
* Alycia gave perspective and guidance related to the results of the Baby Siblings study in The New York Times, Associated Press, USA Today, CNN Health, Time, Healthday, Huffington Post and WebMD; and made related appearances on CNN, MSNBC, and NPR’s “All Things Considered.”
* VP of Scientific Affairs Andy Shih was interviewed by the Philadelphia Inquirer, Parents Express and Education Week about Hacking Autism.
* Alycia was interviewed by Fit Pregnancy about studies on prenatal and early post natal risk factors. She was also interviewed by About.com regarding proposed changes in autism-related entries of next year’s much-anticipated DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, fifth edition).
* Andy and Michael Rosanoff, associate director of public health research, were interviewed by Newsweek for a story about the Minnesota Somali prevalence study.
* Geri was interviewed by Parents magazine for a story about early screening and early intervention.
* VP of Translational Research Robert Ring was interviewed by Discover magazine for a story on the use of mice models in autism research.
* Geri was interviewed by the prestigious journal Lancet regarding autism clusters in California.
* Andy was interviewed by CBS 60 Minutes on innovative autism technology.
* Geri and Simon were interviewed by ABC News on the use of avatars in autism treatment.
* Autism Speaks Global Autism Public Health Initiative continued to generate world headlines, including this Wall St Journal interview, around its Conference on Autism Spectrum Disorders and Developmental Disabilities in Bangladesh and South Asia, which resulted in the adoption of the “Dhaka Declaration” presented to the United Nations.
* On August 15th, the science department hosted its first live webchat, with Alycia fielding questions related to the widely covered release of the Baby Siblings Research Consortium’s findings of unexpectedly high rates of autism recurrence in families. Nearly 1,000 live viewers joined the chat and submitted 299 questions and comments. This is the first of an ongoing series of live web chats by senior science staff.
Science leadership at national and international meetings
* Geri, Andy, Rob, Michael, and VP of Scientific Review Anita Miller Sostek attended the treatment grant review meeting in San Francisco, Aug 1-2. 86 applications focusing on developing and evaluating new biomedical and behavioral treatments were reviewed by a panel of scientific experts and stakeholders. Ann Gibbons, executive director, National Capital Area, offered her expertise as a consumer reviewer on the panel.
* Michael attended the World Congress of Epidemiology, in Edinburgh, Scotland, Aug 7-11. This year’s theme was “Changing populations, changing diseases: Epidemiology for Tomorrow’s World,” and the International Clinical Epidemiology Network Team, which Autism Speaks co-funds, presented on an array of research efforts. In addition, Danish researchers presented data on the increased risk for autism in children with low birth weight and other birth-related conditions.
* Geri and Alycia hosted an Autism and Immunology Think Tank, Aug 22-23, in NYC (described above).
*The Autism Treatment Network leadership held its semi-annual planning meeting in the NYC offices Aug 23-24, with Geri, Clara, Rob, Dr. Dan Coury, Medical Director, ATN, Jim Perrin, MD, Director, Clinical Coordinating Center, ATN, and Nancy Jones attending.
* The science department senior leadership and Mark Roithmayr held a strategic planning meeting with members of its scientific advisory committee in the NYC offices, Aug 24. Among the advisors attending this meeting were Joe Coyle, MD, Chair, department of psychiatry, Harvard Medical School, Gary Goldstein, MD, president, Kennedy Krieger Institute, Steve Scherer, PhD, director, Centre for Applied Genomics, University of Toronto, and Roberto Tuchman, MD, associate professor of neurology, Miami Children’s Hospital.
*On Sunday, August 28th, Geri Dawson presented at the Triennial Conference of the Royal Arch Masons, a group that makes a substantial annual donation to support the work of the Toddler Treatment Network.
Back by popular demand: The “Got Questions?” feature of the Autism Speaks Science blog. Today’s answer comes from…
I can remember starting college and how anxious I felt facing the new and challenging environment. I had to meet such a range of new people, deal with academic pressures, organise my day and get to appointments on time, manage my finances (I still struggle!) and generally look after myself. Such an upheaval tests any young person—all the more so for a young adult on the autism spectrum.
So what can help? First, remember that US and international legislation supports the right to a college education for individuals with disabilities. Educational institutions are required under the Individuals with Disabilities Education Act and the Americans with Disabilities Act to provide services for students with an autism spectrum disorder (ASD). The college are required to make all reasonable adjustments to accommodate the needs of students on the autism spectrum and to avoid discrimination based on their disability. (See Ralph Savarese’s blog post on Oberlin’s acceptance of his son, DJ, possibly the first nonspeaking student with autism to live in a US college dorm and be accepted to such a highly selective US college.)
In addition, there are many steps that parents can take to help their son or daughter have a rewarding college experience. Transition planning is key. I encourage you to work with your child’s high-school and college advisors to draw up a transition plan that extends from before the freshman year to post-graduation. Consider such issues as the appropriateness of a college’s location, available facilities and course content. It helps to visit the college, meet with at least some of the teaching staff and tour classrooms and dorms with an eye for how well they accommodate your student’s needs.
As part of the transition plan, work closely with the college’s disability services. Of course, this requires that your son or daughter discloses his or her ASD and, if necessary, provides the necessary documentation of disability and needs. Armed with this information, the disability office can organize an assessment of need and provide learning supports. These can include both psychological and behavioral services, assistive technologies (e.g. a recording device for a lecture) and academic aids such as note-takers and extra time in exams. It is important to have assessments of need conducted early so that learning supports are in place when the student starts coursework. Then, once a year, ensure that college staff review the effectiveness of the support program.
Having a social mentor can be particularly useful. Autism Speaks’ college program–Autism Speaks U–promotes awareness and advocacy for students with ASD and may be one source of social mentoring during college. Sometimes just a friendly ear is needed, particularly at times of increased pressure (e.g. first week of college and exams).
Before the start of classes, see if you can get an advanced class schedule. Consider the timing and distance between classes—again from the point of view of the demands placed on your student.
Finally at least a year before your son or daughter graduates, begin planning an “exit strategy” in consultation with the school’s careers office and other college staff familiar with your now-adult child.
With the right planning and support, college can be a great environment for young adults on the autism spectrum. I hope your son or daughter has as much fun as I did.
Here are some additional resources:
1. The Autism Speaks’ Transition Toolkit, particularly the section on Post-Secondary Educational Opportunities.
2. The TEACCH Autism Program of the University of North Carolina-Chapel Hill.
3. Preparing Students with Autism for College, and Preparing Colleges for Students with Autism, Hurewitz and Berger (2008).
4. Supporting More Able Students on the Autism Spectrum: College and Beyond Journal of Autism and Developmental Disorders VanBergeijk, Klin and Volkmar (2008).
5. The [UK] National Autism Society’s Guidelines for Student Mentors.
Got more Questions? Please email us at firstname.lastname@example.org.
This guest post is by Simon Wallace, Ph.D., Autism Speaks’ Director of Scientific Development – Europe.
The European autism community recently came together in Luxembourg to discuss how to improve knowledge, awareness and care for individuals with autism spectrum disorders (ASD) and their families. The meeting was grandly titled “An Expert Panel on Autism” and was supported by the European Union’s Department for Health (DG SANCO), with many of the practical arrangements being made by Autism Speaks and Dr Alvaro Ramirez from the European Autism Information System project.
There was a broad representation from the European community, with stakeholders from as far east as Greece and Romania, as far west as Ireland, as north as Norway and as south as Italy. The main focus was on developing a strategic direction for the continent on public health and ASD, and so the delegates were selected to represent expertise in research, clinical services, advocacy/awareness, policy and surveillance/data collection. It is striking how diverse Europe is in terms of its social and economic levels and needs, meaning that some recommendations can be broad but they must also be tailored to the various European “contexts.”
On the first day, the group heard presentations from DG SANCO who set out their commitments to ASD and a roadmap of how that should be met. Of particular resonance was the statement that, especially in economically difficult times, there is not a need for necessarily more but for better and that partnerships are the key for the European community to make progress. There is a plan for ASD to be kept as a priority in the upcoming EU health program (running from 2013-2020), which would provide greater welfare to individuals with ASD and their families in Europe, but it was made clear that autism advocates should begin a lobbying program to ensure such a commitment.
The remainder of day one included a series of presentations and discussions to “set the context” on the current landscape of ASD across Europe; to identify where there are particular challenges and where there is an opportunity for the European community to work to its unique strengths. Some of the highlights included the need to develop platforms for research and services for adults with ASD and to consider the benefits of parent-mediated approaches to intervention for children. Also discussed was that some services available to families in Europe were neither evidence-based nor properly scrutinized.
On day two, the Expert Panel divided into small groups to discuss a European strategic plan on the areas of research, clinical services, advocacy/awareness, policy and surveillance/data collection. There were a number of recommendations from these sessions, including the need to: use special European populations in research (e.g. genetically isolated or migrant populations); train professionals using standardized protocols; write national standards in treatment and diagnosis; conduct more prevalence research to calculate a European accepted figure; produce a pan-European awareness campaign.
Autism in Europe is steeped in history with many of the parental organizations looking to soon celebrate their 40th or 50th anniversaries. One of the main challenges for the European community is how to manage the complexities surrounding the very different paths each country has taken in the way they define, manage and advocate for individuals with ASD and their families. A clear message from the meeting was that improvements can be made if the goals for the European community are set out (through a summary document of the Expert Panel being published), we are able to raise autism awareness and reduce stigma, and we can disseminate information on models of best practice. Successes are being made, with national strategies recently being published in the UK and Hungary, but our autism community in Europe has still much work to do in terms of understanding how we can play to our strengths and find solutions through partnership and information sharing.
Most attendees left the meeting feeling that they’d taken part in beginning to set a vision for autism in Europe. We will draw on the momentum and enthusiasm from Luxembourg and take that into further meetings planned in Budapest and Mallorca, with the final strategic document on autism in Europe to be presented to the EU in November.