Oireachtas Joint and Select Committees

Tuesday, 25 October 2022

Joint Oireachtas Committee on Autism

Autism Policy: Discussion (Resumed)

Ms Eleanor McSherry:

This is what we are doing at ACE where we are looking at the gaps. We have the expertise because a lot of our staff, 70% of them, are autistic themselves. The majority are women and a lot have had late diagnosis. My son is 24 years. He was the perfect example of early education and intervention. He was diagnosed at four years old and he got every single resource that he needed going into school. It was before the cuts of 2006, which was my first time addressing a joint committee here. I was here in 2006 saying exactly what these parents are saying today. I do not know if that is a good or bad thing. But once you went to second level, it was as if no one remembered. I had the same reports. Every transition you have to have the same reports and the same conversations. That has never changed in the 24 years. I have been doing this for 20 years. Like Dr. Crawford, I have been here a lot. We are changing the narrative whether people like it or not. Whether or not there is change at government level, we are out there and we are making those changes ourselves because we see the detrimental effect it has on our children. But we have to think about what we have already put in. It is like parking on footpaths and people ask why there is not zero tolerance? Why do we not apply the laws that we already have? Why do we not use the information we already have? We had it in the EPSEN Act and the 2001 task force report. That is 21 years old. The same conversation that we are having today was happening then. Why was nothing really implemented? We have the knowledge, expertise and hopefully we now have the will to do it; why are we not doing it? We are waiting for the politicians. As Dr. Crawford and I have said we are not going to wait. We will just go out there and do it and we will change minds. I have had conversations with the European Broadcasting Union to be its keynote speaker: an Irish person, mammy and carer. Ten years ago I would never have expected to be in that place but I am going to spread what I have learned. We need to have that. We need to have more of these conversations but also need action. These conversations have happened since 2001. We need action.