OPINION:Why does the Republic of Ireland not have an autism-specific strategy or autism legislation?
ON DECEMBER 18th, 2007, the United Nations designated April 2nd as World Autism Awareness Day, to be observed every year as of 2008. Its concern arose out of the high prevalence of autism spectrum disorder in all countries of the world and the subsequent effects on children, families, communities and societies.
It is now generally accepted internationally that the prevalence of autism disorders is one in 100 children having some degree of autism. The causation of autism is still a mystery to the medical profession, and a cure is not on the horizon.
Our best approach to the disorders is early intervention and autism-specific education. This will give children with autism the best possible opportunity to live a life of quality, dignity and respect and to become contributors to their communities. Unfortunately, we are a long way from meeting these needs. In many developed countries it proved necessary to enact legislation and to ringfence funding so the consequences of autism would be lessened.
Within the Celtic nations, the Welsh Assembly government developed a strategy for autism implemented in 2008. The Scottish government launched the Scottish strategy in 2011.
The Autism Act (Northern Ireland) 2011 went on the statute book in August 2011 and stated a strategy for autism in Northern Ireland had to be developed and published not less than two years after the passing of the Act. It requires that the autism strategy must set out how the needs of persons with autism are to be addressed throughout their lives.
To put these welcome advances in perspective, this is happening 66 years after Prof Leo Kanner first described children with autism. The move to have autism-specific strategies developed is spurred on by the dramatically increasing prevalence of autism and the increasing cost of autism, particularly when resources are becoming scarcer and priorities must be identified.
The Irish Society for Autism has been active since 1963 in lobbying and creating awareness, running conferences and seminars on autism, and informing each minister for health as to the needs of people with autism disorders. The Task Force Report on Education was published in October 2001 and was the blueprint for the development for autism-specific education in Ireland.
Above all, the task force recognised the value, contribution and needs of Irish citizens with autism disorders, and acknowledged them in the hope the report would provide a framework for the future development of a comprehensive and appropriate structure for education and support for this hitherto marginalised and misunderstood population.
The National Review on Autism services published in February 2012 is a review of services as they now exist and identifies pathways on how services can be accessed and delivered. It states the Health Service Executive (HSE) should ensure all individuals with the disorders can access appropriate and timely health services seamlessly from childhood to adulthood within available resources.
It also highlights that services for children with the disorders in Ireland are unco-ordinated and poorly developed in many areas in the country: a sad situation that parents of affected children encounter far too often.
The report further stated the lack of understanding on the part of professionals and the public at large of affected people, and the need to raise awareness and understanding both in terms of what it means to have the disorders and to be a carer of someone with them.
Within the recommendations, the salient one is: “Geographically, current services can vary from robust, comprehensive and integrated to isolated, patchy and ineffective.” Moreover, different models and approaches to the provision of health services are evident across local health office areas and HSE areas.
The current model is no longer appropriate or sustainable in providing equity of access and intervention. The report, although timely, does not tell us much we didn’t already know or suspect.
It’s time to call on the Government to take appropriate action, and so I would like to ask the following questions:
Why does the Republic not have an autism-specific strategy or autism legislation when England, Wales, Scotland and Northern Ireland do?
Now the autism report has been published and has clearly stated the current model is no longer sustainable, when can we expect corrective action?
We all have a moral obligation to support and embrace those in society who are the most vulnerable.
We, the Irish people, have never shirked our duty in a crisis. I contend that our services to people with the disorders in Ireland are in crisis.
Now is the time to develop a cradle-to-grave strategy.
This should be our legacy to the next generation of affected people.
Dr Pat Matthews is executive director of the Irish Society for Autism, co-founder and former president of the World Autism Organisation, and co-author of the Charter of Rights for Persons With Autism