June 2013 International Conference on Autism Spectrum Disorders at NUI Galway

Today at NUI Galway the 2^nd International Conference on Autism Spectrum Disorders will commence. The two-day conference will focus on the state of autism research in Ireland and internationally and plans will be presented to parents and professionals for the new Irish Autism Database and Repository (IADR) Project.

Autism is a neurodevelopmental disorder characterized by deficits in social behaviours and communication, and a restricted range of activities. Autism symptoms vary by person and can range from mild to severe. Some have normal intellectual and language abilities, whereas others are cognitively impaired and require life‐long care. While most countries, including Ireland, lack an official prevalence estimate, available data suggest approximately 1% of the global population is affected by autism.

The development of an autism specific database targeted at the health, educational and long-term needs of the Irish autism community is a vital resource to inform service planning and delivery and will support a range of research questions.

The IADR project, to be led by the Irish Centre for Autism and Neuordevelopmental Research, Institute for Regenerative Medicine (REMEDI) at NUI Galway, Centre for Autism and Related Disorders, Trinity College Dublin and US based science and advocacy group, Autism Speaks, will provide data to address a range of questions relating to the health, social and educational needs of individuals affected by autism and their families and carers. This will be a valuable resource illustrating the extent to which people with autism are impacted and provide valuable data to support service planning and development. This announcement marks the start of a six month consultation process with parents and is based on existing database models currently in operation in both Scandinavia and the US through Autism Speaks.

The proposed Irish Autism Database and Repository (IADR) will house comprehensive and detailed information, as well as related biomaterials for individuals living with autism in Ireland.  IADR proposes to serve as an open national resource to enhance the care and quality of life of the Irish autism community by facilitating and supporting rigorous and high impact scientific research.

Dr Geraldine Leader, Director of the Irish Centre for Autism and Neurodevelopmental Research at NUI Galway:  “Given the increasing prevalence of autism suggests that we urgently need to invest in optimising research efforts by enhancing research infrastructure and emphasizing collaborations among scientists, service providers, policy-makers and the autism community.  IADR will be transformative in accelerating the pace of autism research, by providing large datasets which can be shared among researchers and ultimately will aid the discovery of causes and the most effective treatments for autism.”

Commenting on the announcement, Dr Andy Shih, PhD, of Autism Speaks:  “Autism Speaks is delighted to collaborate with the Irish autism community, including NUI Galway and Trinity College Dublin, on the new autism database and repository initiative. We encourage individuals, parents, practitioners and all stakeholders in Ireland’s autism community to get involved with this initiative, so that the database that results will uniquely serve their needs in addition to being an incredible resource for research purposes.”

Adrian Jones, Irish-American member of the board of Autism Speaks and parent to a child with autism: “This annual conference provides a great opportunity for parents of children with autism in Ireland to come together and meet others who face the same day-to-day challenges and triumphs. The fact that both practitioners and policy-makers in Ireland are choosing to work so closely with parents on new initiatives such as IADR is a fundamental step in the right direction.”

With estimates that one in 88 children has an autism spectrum disorder in the US, the Irish Centre for Autism and Neurodevelopmental Research (ICAN) at NUI Galway, in collaboration with Autism Speaks, is making parents a particular focus of this the 2nd International Autism Conference.

The event ‘Autism Spectrum Disorders: From Research to Practice’ will feature keynote talks as well as workshops aimed at providing parents, practitioners, teachers, and researchers, with the latest evidence-based approaches to diagnosis, clinical management and adult service provision.

The conference will place special emphasis on providing practical solutions for parents struggling with autism on a daily basis. Workshops will be delivered on managing behaviour in the home, sleep, toileting, interventions for non-verbal, minimally verbal and verbal children and how to manage transitions effectively.

“Autism has become a national epidemic. This conference will bring the world’s leading experts in diagnosis, clinical management and education to NUI Galway as well as address the practical concerns and needs of parents,” said Dr Leader. “International evidence indicates an alarming rise in the prevalence of autism, as reflected in the recent data from the US-based Centers for Disease Control and Prevention which estimates that one in 88 children, including one in 54 boys, has an ASD.”

Expert speakers at the conference include: Professor Deborah Fein from the University of Connecticut, who will discuss what determines best outcomes for children on the autism spectrum, while Professor Richard Hastings from Bangor University will discuss what the research is telling us in relation to effective autism interventions. Professor Peter Gerhardt from the McCarton School, New York will speak on issues relating to employment, quality of life and inclusion for adults on the autism spectrum; and Professor Susan Swedo, of the National Institute of Mental Health in the US, will update delegates on the latest changes to the diagnostic categorisations of autism.

To view the full conference programme please see http://www.conference.ie.

ENDS