Ms Elisha Sweeney:

I thank the Cathaoirleach for the opportunity to speak here today. I am a mother to autistic twin girls. In 2019, along with another parent, Ms Colette Heaney, we set up the Mayo Autism Camp. We are a not-for-profit voluntary group. We have Garda vetted more than 60 volunteers who support us in running activities for children with autism and their families. When we set up the group in 2019 we did it with the intention of running a small summer camp for children with autism and their siblings as there was nothing available for our children. Such was the demand, however, we are forced to extend it to two weeks and cater for 30 children each week. As a result of the first camp we have gone on to host camps during each of the holiday breaks from school. We run a learn-to-cycle and football skills programme, and music and art workshops. We organised two very successful autism resource fairs to give parents, adults with autism, and people involved in education and health, an opportunity to see what resources are on offer. During Covid, when families were completely forgotten about and abandoned by the system, we hosted webinars for parents, online fun activities for children to engage in, and a six-week summer programme with the Mayo sports partnership. We did this with no funding from the Government and only through the generosity of the people in Mayo.

The families in Mayo are very frustrated at the lack of communication, but more importantly at the lack of support and services. A recent survey carried out by ourselves shows the deficit of the services within the primary care, CAMHS, and children's disability network teams, CDNT, structures, and the lack of clarity and transparency of service provision across the services. Many of our families are waiting for more than two years for a service. One of our parents has been waiting for more than six years for support of any kind. Many children have aged out of the service and have no supports. Those children who are under CAMHS have been left in limbo. Mayo is at crisis point in this regard. This has been raised in the Dáil and yet nothing has changed for so many. Families are distraught. We are receiving calls daily from parents who feel so alone. They feel that no-one cares and they cannot afford private therapy. As a result, their children are suffering. One parent spoke of her concern when she said "I worry that this lack of services will mean that my son will end up with even more challenges and mental health issues, etc." Others with grown adult children are forced to mind them 24 hours a day, seven days per week, with no respite. They feel that as they are getting older the burden of responsibility is weighing heavily on them, affecting their physical and their mental health. They are worried about the future for their children. The time for talking and procrastinating is over. Families need services and they need to feel supported.