Ms Eleanor McSherry:

I thank the committee for the invitation to speak this morning. It has taken 20 years to get here so I am very happy to be here. I am a lecturer and programme co-ordinator/designer with adult continuing education at University College Cork, ACE at UCC, and I am adjunct faculty at Hibernia College Dublin. I am currently also doing my PhD at Maynooth University on autism representation. As we heard from Dr. Crawford, autism is not just our children being born; it affects all of our lives and we become experts in this area. I am also a parent of a 24-year-old autistic son. I co-founded the Special Needs Parents Association of Ireland in 2010. We had to close because we were all burned out by 2020. We supported 57,000 families across Ireland. I have been a national and local advocate for parents, their children, for myself and for my son. I also found out recently that I am also autistic. I spent many years preparing my son for the world and decided that I was not going to wait any longer for the Oireachtas or the Government to make changes. I was going to make changes myself and be proactive. Even though my journey has been very difficult with my son, I am here today to talk briefly about autism policy and then about the groundbreaking work we are doing at ACE at UCC that illustrates what can be achieved when we have the will to change.

I will begin with autism policy. As I always say to my students in autism studies, here is where things start getting very dark and cold. I will be very blunt and brief. It is a long, sad story. Irish legislation and policy tends to be reactive rather than proactive. It is put in place after something bad has happened, usually a court case. We have currently no legislation that even mentions autism. We have no accurate figures for autism in Ireland. What we currently have is a mishmash of different figures that do not even consider adult diagnosis. We have four working definitions of disability which do not mention autism and do not adequately describe it either. We have had two defunct Autism Bills, an Autism Plan 2019, and one attempt at a strategy in 2021. We have a number of autism reports going out across different Departments. The one I really want the committee to reconsider, even though it is 21 years old, is the autism strategy of 2001. I have included a link to it in my submission.

The autism task force report is so important because it had contributions from a number of experts from Ireland and from other jurisdictions comprised of parents, education and health professionals, advocates and researchers. There was oversight from the head of the policy research unit in the faculty of law at the University of Galway. Its remit was to provide a framework for the future development of a comprehensive and appropriate structure for education and support for this hitherto marginalised and misunderstood population.

It covered everything the committee has been discussing but it is 21 years old. It is like the Education for Persons with Special Educational Needs, EPSEN Act; it promised an awful lot and delivered very little. Other jurisdictions have taken from our task force’s work from 21 years ago. That is very sad. The language in Irish policy is used to both give and take away services and resources. For example, terms like “care needs” and “access to" are usually misinterpreted.

However, the second part of my submission is a bit more positive. I do not want to be negative because a lot of what the committee has heard about what is happening in Ireland is negative and that is not the complete story. I want to be positive and share the great work that we are doing at ACE in UCC where we create bespoke courses, from eight weeks to two years, to educate, empower, train and meet the needs of the autistic community and their families, as well as of industry to create employment for adults with autism.

Our approach is interdisciplinary and our key philosophy is to provide opportunities in lifelong learning for all adults irrespective of age and previous educational achievements. Our ethos is of equality, diversity and inclusion for all. These underpin our philosophy, our learning objectives and outcomes. Our courses are built for diverse adult learners. Our staff adopt the correct approach needed to enhance adults’ learning so that all students may have a rewarding educational experience.

Most of our programmes have buy-in from the communities that we work with. For instance our diploma in autism studies was created by autistic adults in conjunction with academics who were either also autistic themselves or were the parents of children or adults with autism. Some of the relevant part-time courses are the diploma in autism studies, the first autism studies course in Ireland, which is level 6-7. Parents, SNAs, lecturers, disability resource and access officers were all in the same classroom working and learning together. It is one of the first and only courses that does this in the country. It awards a university qualification at the end. The certificate in professional development in neurodiversity in the screen industry with Screen Ireland is first of its kind anywhere. I have been invited all over the world to speak about this course. That is how innovative it is. We are the leaders in this area. There is a certificate in professional development in advocacy, a pilot in neurodiversity in human resources, which is the first of its kind in Ireland, and pilot in well-being co-ordinator with Screen Ireland, the first of its kind in Ireland, also incorporates everything we have learned from our autism courses. These courses are designed to create a culture in which everyone has the opportunity to thrive and participate in life, industry and leadership. We are leaders. We are at the forefront of this. People ask me why we are doing this in Ireland but why should we not do this in Ireland? Why should we not be proactive? Why should we not be the leaders in this area? I am sick, as a parent, of hearing about best international practice. We have a very different culture to the rest of Europe. The rest of Europe was out colonising the rest of the world and the Irish were getting colonised. Why should we not be the leaders in this area?

One last thing that I would like the committee to consider is the conversation that I have seen across so many times across everything the committee has been listening to, which is that getting funding for our students is our biggest issue and the biggest barrier our students face. We are a self-funding department in UCC. We are not like the rest of the university. Many students do not fit under the social welfare models of grants as many can be carers who are not in receipt of social welfare or are freelance workers whose finance is not stable or both. Our courses do not fit the Springboard model because we are teaching people to be better leaders in their communities and not to advance their employment opportunities. There is no fund if you want to improve your knowledge to help others. If we want more training on autism, we need to fund it and be innovative in how we do that. This is the biggest barrier for the people that I represent. As a parent, I want to see better educated workers and I would like to be part of that solution.