Enhancing Research on Early Autism
2 April 2012 marked the fifth annual World Autism Awareness Day. Every year, autism organisations around the world celebrate the day with unique events and initiatives.
Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterised by difficulties in social interaction, verbal and non-verbal communication and repetitive behaviours. Autism appears to have its roots in very early brain development. However, the most obvious signs and symptoms of autism tend to emerge between two and three years of age.
The United Nations (UN) promotes the rights and well-being of people with disabilities, including children with developmental disabilities. In 2008 the UN General Assembly declared 2 April as World Autism Awareness Day to highlight the need to help improve the lives of children and adults who have the disorder so they can lead full and meaningful lives. For the past five years, World Autism Awareness Day has been celebrated worldwide.
A COST Action on Early Autism
COST is at forefront of autism research with its COST Action BM1004 'Enhancing the scientific study of early autism: A network to improve research, services and outcomes' (ESSEA). ESSEA is an interdisciplinary network of researchers working to accelerate discovery of the earliest signs of autism, combine techniques from cognitive neuroscience with those from the clinical sciences and, ultimately, to establish European practice guidelines on early identification and intervention.
Increased and earlier recognition can greatly benefit and have a high impact on the demand for diagnostic services and interventions across Europe. Healthcare systems are currently very variable in terms of expertise and capacity to support families with young children affected by autism, often leading to marginalisation. This COST Action is creating a network to enable developments in both clinical practice and science-based policy to significantly improve quality of life for individuals affected by autism, their families and the broader European society.
ESSEA’s goal is to develop European capacity in early autism science through networking, lab exchanges (Short-term Scientific Missions, STSM), working group meetings, summer schools for Early Stage Researchers (ESRs) and conferences. Started in 2010, ESSEA currently involves over 50 scientists from 20 European countries.
Working groups within ESSEA are focused on:
- The study of genetically 'at risk' younger siblings of an older child with a diagnosis;
- The application of novel methods for studying young children and infants;
- Testing how well screening instruments work in prospectively identifying cases;
- Testing early intervention approaches through rigorous controlled trials.
Maximising resources and widening the scope
As it is often the case with participating in a COST Action, the networking benefit expands beyond the boundary of the COST project and enables researchers to tie long-lasting contacts and collaborations within the broader European scientific community.
Scientists involved in ESSEA are also part of the consortium who have secured one of the largest ever collaboration projects between researchers, academia and industry to find new methods for the development of drugs for ASD. 'European Autism Interventions – A Multicentre Study for Developing New Medications' (EU-AIMS) is the largest single grant for autism research in the world and the largest for the study of any mental health disorder in Europe.
EU-AIMS is funded by the Innovative Medicines Initiative (IMI) – a joint undertaking between the EU (Seventh Framework Programme) and the European Federation of Pharmaceutical Industry Associations (EFPIA) – and by Autism Speaks. The kick-off meeting of the consortium will take place in April 2012 in Zurich, Switzerland. EU-AIMS will focus on three areas:
- The development and validation of translational research approaches for the advancement of novel therapies for ASD;
- The identification, alignment, and development of expert clinical sites across Europe to run clinical trials;
- The creation of an interactive platform for ASD professionals and patients.
Light It Up Blue
A major global initiative organised and promoted by Autism Speaks, the 'Light It Up Blue' campaign celebrated World Autism Awareness Day on 2 April to raise awareness about the growing public health concern that is autism. Iconic landmarks around the world, such as the Empire State Building in New York (USA) and others, were flood-lit in blue to show their support. In 2011, over 2000 iconic landmarks in more than 800 cities and 48 countries across six continents were lit up in blue to celebrate World Autism Awareness Day. More information about the campaign can be found on the Light It Up Blue campaign webpage.
Centre for Research in Autism and Education (CRAE)
Department of Psychology and Human Development, Institute of Education
Senior Science Officer, Biomedicine and Molecular Biosciences