Ms Gillian Kearns:

My comments are moot now because I was going to address what Mr. Harris said about the concerns of the autistic community about a database. Much as we might like it not too be true, autism and being autistic are still very stigmatised. It is not something that we feel comfortable disclosing. I have not disclosed to work, although they will probably find out now.

Again, referencing the dossiers that Mr. Harris talked about, the trust of the autistic community has been shot to bits and we have huge ethical concerns about maintaining a database. If I put my child on a database now, he or she will have no concept of what he or she have been consented to. Do I have a right, therefore, to put my children on a database and then for that information to follow them for the rest of their lives? Will registration impact on their employment chances, college or life insurance? These issues need to be examined and clearly thought out.

I understand completely that there is a need to know about the prevalence of autism so that the Government can provide services. Mr. Harris made a good suggestion to include a question on the census. That way, we would get the information we need and it is not personalised data thus avoiding concerns about where to store the database and who would have access. The autistic community has ethical concerns about creating a database. Much as we would like not to believe it, the bulk of research and money goes into research into finding a cure for autism, which is not what the vast majority of the autistic community has an interest in and, as Mr. Harris has said, we believe that the database would be used for the purpose of eugenics. I reiterate that in general the autistic community is very concerned about the idea of having a database.

Today's meeting is about autism and intellectual disability. However, there is a need to recognise that very few autistic people do not have co-occuring other neurodivergent diagnoses such as attention deficit hyperactivity disorder, ADHD, obsessive-compulsive disorder. OCD, Tourette's syndrome or mental health difficulties. In order for services to really provide there needs to be a recognition of that. I helped organise Ireland's first Neuro Pride festival last August. Personally, I do not know another autistic person who is just autistic. Most of us have other things going on. Personally, I am autistic with ADHD and possible dyspraxia and I have definitely have dyscalculia. There needs to be a recognition of that reality. I mean that people do not just have autism and an intellectual disability or autism without intellectual disability. For services to really be tailored and rights-based then there needs to be recognition of the multiplicity of neurodivergence.