Members of the public are being asked to get involved in the planning of autism services in this country.

The Irish Centre for Autism and Neurodevelopment Research (ICAN) at NUI Galway is working to develop an Irish autism neurodevelopmental registry and biobank, in partnership with Trinity College Dublin and US advocacy group, Autism Speaks.

Registries and biobanks have already had success here in relation to other conditions, such as cancer. The development of an autism registry will inform research and policy decisions and will move to answer questions such as:
-What is the true scale of autism here?
-What are the health needs of those affected?
-What factors influence successful school placement?
-How can quality of life be improved for teenagers and adults with the condition?

Autism, also known as autism spectrum disorder (ASD), is a biological disorder of the brain that impairs communication and social skills. Signs can include an absence of eye contact, apparent aloofness, avoidance of physical contact even with family, difficulty dealing with interruptions to routine and a lack of interest in other children and what they are doing. It is a lifelong condition.

"There is an urgent need to establish a registry and biobank to inform the development of clinical practice, services and future research in Ireland. Given the potential implication of this initiative for the Irish community, we are currently conducting a national consultation process. The aim of this is to provide detailed information about the specific needs of the community and what kind of information should be included in a registry and biobank," said ICAN director, Dr Geraldine Leader.

As part of this, an online survey was launched in mid-January and ICAN is calling on affected individuals, their families and relevant professionals to take part.

The survey can be completed here

ICAN made its appeal to people to get involved on World Autism Day (April 2).