Europe Comes Together for Autism
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.