Mr. Adam Harris:

The question on data relating to autism is interesting because, even leaving aside the issue of where there are autistic people and how we can plan for services, a big problem we have in Ireland is the dearth of data relating to autism. Much of the time, even the statistics and research on which we rely come from Britain. That is unfortunate and problematic. A logical place to start is with the census. There is no question on the current census that an autistic person can naturally tick or fit into. The categories are not necessarily relevant to autism. There are questions relating to mental health conditions, which some autistic people might tick, and there are questions relating to intellectual disability that some autistic people might tick, but there is no neurodevelopmental or autism option. That is unfortunate because the statistics that come from the census are often what is cited in the context of disability. There is no question about the fact that there are thousands of autistic people missing from those data. I would like to see a new census question in that regard.

It should be possible to plan services based on prevalence rates. For example, we know that one in 65 children in school in Ireland has a diagnosis of autism and we know that in many countries around the world that the number is somewhere between 1.5% and 2%. That holds true in every community so it should be possible for the State to plan accordingly.

With regard to an autism database, we should be mindful that trust has been severely damaged in light of recent events, particularly around the "RTÉ Investigates" programme. In addition, internationally there has been lots of problems where autism databases have been used for research that would not have been in compliance with the wishes of the autism community and perhaps would have been closer to eugenics research. If there was to be an autism register, it would be very important that participation was voluntary, the data was anonymised and the governance of the database directly involved autistic people.