Ms Ciara Jones:

We would like to thank the Chair, Deputies and Senators for the opportunity to speak to them today. Ms Kenny, Ms Poole and I are from the Autism Support Hub, based in Dublin 15. In the first instance, we are here today as parents of autistic children, and second as advocates trying to make a difference to help and support families. It is important to say that while today is a great privilege, we, as parents, should not have to be here, but the sad reality is circumstances necessitate this due to the blatant failures of the State to provide basic supports for our children. We, as individuals, have to constantly fight, fight, fight for the basic supports for our children to allow them to prosper and grow to reach their full potential. This should not require a battle.

Back in 2020 I decided to set up the Autism Support Hub, and with the support of three other mothers, two of whom are with me today, we set out on a journey that has been a privileged one, a journey into the private lives of many families we meet each week. The original purpose of the hub was to help and support parents of recently diagnosed autistic children, but it soon became apparent the remit of the hub was far greater than this.

At its essence, when setting up the hub, I did not want parents of recently diagnosed children to experience the same sense of loss, worry and helplessness that I experienced when my son, Gavin, was diagnosed just over ten years ago. I am sad to say that ten years later families are still experiencing the same sense of loss upon receiving their child’s diagnosis, and this is not right. Families need to be better supported from the get-go.

We open our doors to meet parents in a private capacity and safe space where we share our own knowledge and experience. Through this engagement with parents, we offer them support and information they need to navigate their own personal journey. We stay with them on this journey until they feel empowered to go it on their own. Each week since the opening of the hub, we have met families in crisis who are battling the unfair system we find ourselves in when it comes to accessing services and supports. These services are seen as a luxury, but they are the difference between our children thriving and barely surviving. This is the reality for many of us.

We see so many families struggling around school places. Either they have none or the one they have is unsuccessful due to the lack of training of teachers and, therefore, there is no understanding of the child’s needs within the school setting. As we know our children having the appropriate school setting is of the highest importance. We need principals, teachers and special needs assistants, SNAs, to have mandatory and continuous training for our children to have a positive school experience and not have parents worried sick for the day when their children are gone and often suffer the backlash when their children are home - for example, around masking. Where parents express difficulty with their school, we suggest Ms Kenny contact the principal to offer free Tusla accredited autism training under autism clubs and education umbrella, ACE, also founded and supported by Ms Kenny for teachers and SNAs.

The Autism Support Hub at its essence provides moral support to the parents who walk through our doors. Sometimes this is a chat, a hug or simply saying "we understand", but we also offer practical support. Week in, week out we support families with the many burdensome forms that exist when trying to access support, be they educational or financial, from home tuition, domiciliary care allowance, DCA, and carer's allowance to mention but a few. Parents come back on many occasions for the continued moral support and, unfortunately, for the support in appealing the many DCA applications refusals. Reform of how these forms are assessed will go a long way in supporting families.

We also offer families the opportunity to attend professional talks through the Parent Led Autism Network, PLAN, again set up voluntarily by Ms Kenny. She has rolled out PLAN in other parts of Dublin where they are a much needed support for families. PLAN offers free talks by professionals on a wide variety of autism topics. These talks are booked out month on month and again have proved an incredible support for parents trying to cope.

In Dublin 15, we have Little Seeds autism arch club, which offers a social outlet to more than 70 autistic children. Only last week Ms Kenny opened Little Seeds autism support therapy services to these 70 families. As we know, such therapies should be offered by the HSE and disability services but are not. She went about not only finding the therapists but setting up the service. The reason for these therapy services existing within this group is due to the hard work of local fundraising.

We also rely heavily on the support of AsIAm, as some situations require more professional support and advocacy which is beyond our expertise and knowledge. We direct these families to the community support team in AsIAm through their autism information line.

We would like to thank members for listening to us today and we hope going forward they agree that what we are doing in Dublin 15 can be mirrored on a national level with the support of the members and Government bodies.