During September, Autism Speaks worked with Irish Autism Action, the European Autism Public Health Agency, Autism Europe and the European Commission on two conferences: one focused on Eastern Europe and the other on Western Europe. At these meetings researchers, clinicians, policy makers, and advocates from European countries discussed the landscape of autism and public health in their country. Attendees provided information on autism awareness; detection and diagnosis; prevalence figures; services and treatments; national policies/legislation. Despite the enormous diversity among countries and between Eastern and Western Europe, the need for greater scientific knowledge, training, and evidence based services was universal.
The Hungarian Autism Society was the generous host at the Budapest meeting on September 13-14 and attendees were impressed by the professionalism and progressive attitude of this growing national autism society. It was surprising that some countries in Eastern Europe have only begun diagnosing autism in the last five years and one country with a population of 4 million have so far identified only 150 children on the autism spectrum (where if we take the 1% prevalence figure there should be 40,000 individuals on the autism spectrum). Many individuals on the autism spectrum are institutionalized therefore the process of identifying people with autism and ensuring they are being correctly treated is extremely hard. There is little research being conducted in Eastern Europe and although some efforts have been made to increase this capacity there still remains a lack of expertise and appropriate structures of research governance (e.g. ethics committees) to safely conduct research. Participants highlighted a lack of professional knowledge and training as a key need. A significant achievement was that some countries have made advances with developing their own legislation specifically for autism but there are limited structures in place for proper screening, diagnosis and early intervention to support these policy guidelines.
The following week was the meeting for Western Europe (September 23-24) and once again attendees were hosted by a wonderful autism society that has made such a difference for families in the Balearic Islands. Autism awareness has been increasing gradually over the past decade in Western Europe but many individuals and families still struggle with high levels of stigma associated with these disorders. Increased awareness has led to a rise in the number of children diagnosed with autism and although most countries lacked prevalence data, the trend from surveillance of official figures showed a significant increase in the number of children requiring services. The great diversity in the reported prevalence of autism from countries that have figures was surprising, highlighting the need for more epidemiological studies and the development of an accepted European autism prevalence figure.
Autism research has always been strong in Western Europe, particularly around genetics, and Professor Antonio Persico, M.D. from the University of Rome gave an excellent summary of how advances in our understanding of genetics may lead to these findings being used in clinical diagnosis and to inform treatment studies. Some Northwestern European countries have developed excellent strategies for identifying children early, surveying them through development and providing evidence-based services through regional centers of excellence. There was a consistent theme though that most countries need better regulation of services for families. Western Europe has a longer history of autism than Eastern Europe and so for many attendees there was a stronger focus on the need to provide services for adults and the elderly with autism, particularly through the social and economic benefits of finding employment.
The information from these two meetings will inform the writing of a report to be published at a conference in Dublin on November 29, 2010 to provide a strategic plan for the European community on autism and public health. There is still a long way to go in our attempts to improve the opportunities for individuals on the autism spectrum and their families in Europe, but the process begun in Hungary and Spain is evidence of how, by working collectively, we can provide sustainable solutions.
Soon after these regional meetings there were conferences in London, Paris, Brussels and Croatia that focused on the development of autism research partnerships focused on early detection and genetics, as well as the need to increase research funding for autism in European countries. This wave of activity culminated in the Autism Europe conference in Catania, Italy, titled “A Future for Autism.” The conference program was held in the presence of Mount Etna, the largest active volcano in Europe, which added a sense of urgency to the proceedings. All of the presentations at the conference were filmed and will be available to download in a week or two through the Autism Europe website.
There were many highlights from the meeting.
Professor Rutger van der Gaag, M.D., University Nijmegen in the Netherlands, presented on his group's research of girls with autism. Their studies show that compared to boys, younger girls with autism tend to have lower IQs, score higher on measures of autism symptoms, have fewer communication skills but have better pretend play and are more sociable. In school-age children, girls on the autism spectrum are more likely than boys to receive a diagnosis of Pervasive Developmental Disorder, Not Otherwise Specified than of autism, they have lower performance IQs than boys and are more likely to have emotional difficulties in adolescence.
Professor Herbert Roeyers, Ph.D., University of Ghent in Belgium, presented his early intervention program that focuses specifically on joint attention and imitation, important components of typical social and communication development. His randomised control trial of 36 children (aged 3-6yrs) showed significant improvements in children's spontaneous use of joint attention and imitation, and Roeyers and colleagues are now piloting a parent-mediated delivery of the intervention.
Professor Thomas Bourgeron, Ph.D., Pasteur Institute in Paris, highlighted five questions parents and researchers should be asking when they read the latest genetic findings: Is there an animal model? What is the frequency and impact of these findings? What is the specificity (e.g. are they just for individuals with autism and intellectual disability)? Have the findings been replicated? Is there functional evidence? Dr.Bourgeron related these key questions to his own findings with NLGN and SHANK genes to show that we should be more rigorous in how we assess genetic studies and improve our communication of findings to families.
Professor Ami Kiln Ph.D., Yale Child Study Center, gave an energetic presentation about using eye tracking and fixations to faces as well as to naturalistic social stimuli (films of children interacting). Dr. Klin suggested that in the same way we have growth charts to track the early physical development of children, we may eventually have social development charts to track the early social milestones infants and children should be reaching.
The meeting's special address was delivered by Professor Sir Michael Rutter, M.D., the Institute of Psychiatry in London. Dr. Rutter gave an elegant summary of the advances that have been made in autism research over the last three years. He commented that there remains a lack of research into key features of autism, such as developmental regression, epilepsy and savant skills, and that although advances have been made in genetics research with the identification of copy number variations, it still remains unclear how these directly relate to underlying autism symptoms. Rutter concluded that “significant gains and knowledge have been made in the last three years and hopefully the next three years will see even greater gains.”
This collection of meetings over the last few weeks has been a real stimulus to the European autism community. It is clear that there remains a lack of funding for autism science projects in Europe but there are still pockets of excellence in autism research across the continent. The findings of these researchers are extremely valuable to our understanding of what causes autism through to identifying treatment approaches. It has certainly been an active month for autism in Europe and to paraphrase Professor Rutter, there is real hope that some answers are on the way.