Oireachtas Joint and Select Committees

Tuesday, 24 January 2023

Joint Oireachtas Committee on Autism

Autism Policy: Discussion (Resumed)

Dr. ?ine Roddy:

I have not come across that in the evidence. I am mindful, from my own research, of the hidden costs, as Ms Locke-Reilly mentioned, and the level of stress experienced by parents. These parents are sleep deprived, exhausted and extremely isolated. They may not have the support network of families who support or understand their situation. It can also be very difficult visiting other family members. There are so many different dynamics in a family in terms of the level of support that they need. To come along and say, "spend an hour each evening" may feel too much for some parents. You are, therefore, opening up to greater, maybe, health inequalities. I fully acknowledge that some parents might be more predisposed, say, to being able to do this programme than others. I am not saying that this is the ideal solution but saying that internationally this is moving more towards that. This is where autistic adults would report that they would feel this is more a respectful approach than perhaps correcting behaviours, which are actually the child communicating distress. I am not a health professional but a health economist so I am not stepping on other people's toes. I have just cited evidence and what autistic people are reporting.

It is very important that we really listen to what autistic adults say they found helpful as children and to learn from that. We must also listen to what was inclusive, in an educational setting. We must also learn what type of teachers did they feel most comfortable with and flourish, and learn what situations they found traumatic.

That applies to mental health settings and different sectors of society. A great amount of research is needed regarding the level of trauma that autistic people experience. This must inform how we develop practices in future. The naturalistic approach is being viewed more positively in respect of research, but, again, in an Irish setting, how does this work best? When I did the research on how parents would like the services to be delivered, many said they would prefer them to be in a more educational setting than in a clinical setting and having to take time off work to attend appointments. Any recommendations, therefore, must be adapted to an Irish context and what parents living in Ireland feel would work best for them. There would be positive outcomes long term longitudinally from children taking part in more parent-mediated supports.