Dr. Aoiveen Mathews:

I thank the Chairman for the opportunity to speak here today. I am a mother of a child with autism and a GP from County Louth. My five-year-old son Darragh was diagnosed with autism in September 2021. He also has sensory processing disorder. There are two areas where I have concerns about the services and supports provided by the State, namely, the access to supports for children with autism in mainstream schools and the lack of multidisciplinary services to diagnose and treat our children. When Darragh was diagnosed, the psychologist told me her recommendation was mainstream with SNA support for Darragh when he started school. Little did I know the battle that lay ahead. Ms Ford, the principal of our primary school, explained earlier how we had a huge fight on our hands to get support for our children in the school. We were told "No" on so many occasions. What I was faced with was my autistic child in a mainstream class with no SNA or learning support, where he would suffer severely, as would the rest of the children in the class by being distracted by his unmet needs.

In our school, we were not happy with that and we continued our fight. One of the most difficult things I have ever had to do as a parent was sit alone, in front of a panel sent by the Department of Education to our school in May 2022, comprising two psychologists, a representative from the NCSE, an occupational therapist and an inspector, and explain and justify why my son Darragh needed and deserved access to an SNA. It was one of the most humiliating experiences of my life. It was just wrong. I recall saying to myself that no parent should have to fight and beg for help like that. Living with autism 24-7 and doing your best for your child is difficult enough without having to fight for help. All children with autism need and deserve support. We had to justify it case by case in our school in May 2022. I came away feeling and knowing that the State and its experts and policymakers just do not get it. If they did, we would not have to grovel for support for our children. You could have a PhD in honey, but until you taste honey, you do not know it.

The good news is the fight paid off, and in June 2022, the school was advised it would have two more SNAs and a special education teacher. Now there was going to be an SNA in the junior infants when my son, Darragh, started school in December 2022. He would also have access to a learning support teacher, mainstream with support. Darragh started mainstream school with support in August 2022. I walked him into the yard to line up with his 13 new classmates. When I looked at Darragh in that line, I asked myself why we had had to fight so hard for him to have the equal right to stand in that line with the 13 other children, when it was his human right. It is not okay; it is time for change.

Many parents panic and feel that an ASD class is the best place for their autistic child because it is the only way to get the much-needed support, but that is not the case. ASD classes have a place for a certain number of children with complex needs, but international best practice shows mainstream with support is the best option for many children with autism. Mainstream classes help the autistic child's communication and social skills to develop, two key areas with which autistic children struggle. Many parents are being misinformed about ASD classes versus mainstream with support, and many parents are anxious and panicked as a result. In his report published in March 2022, the chief inspector stated that "enrolment policies for classes for pupils/students with autism should prioritise places for those with complex needs, and that pupils/students with less complex needs be included in mainstream classes with appropriate support".

Mainstream with support is working really well for Darragh in his school and he is thriving. His social skills are really coming on. He is very lucky. He attends one of the most inclusive schools in the country, one with a winning formula, namely, a small mainstream class with a well-informed teacher who knows, understands and is well trained in autism, and with access to both an SNA and a learning support teacher.

We have the winning formula in Tullydonnell. Inclusion works but, by God, we had to fight for it. Every child in this country deserves the right to access the winning formula without having to fight for it the way we did. It is now time to make changes at a national level.

The second area regarding services and support provided by the State I have concern about is the lack of speech and language therapists, SLTs, occupational therapists, OTs, and psychologists. The years-long public waiting lists for assessment of diagnosis for a condition where early intervention is key are unacceptable. If one wants to get an early diagnosis, one must go privately. At present, it is almost impossible to even access an appointment for a private assessment as the demand is so great. The incidence of autism has grown exponentially in the past number of years. The demand for assessment and treatment is much greater than the supply of services currently available. There is not enough accountability and transparency in Ireland. I draw the committee's attention to page 20 of the Autism Good Practice Guidance for Schools, published in April 2022, which states the incidence of autism in Ireland is 1.55%. This figure is from a 2015 publication that was seven years old at the time the guidance document was published. A 2022 publication in Northern Ireland stated the incidence there was 4.7%. The incidence in our school is approximately 5%. We believe this is a more realistic nationwide figure. One in 20 children is a huge figure.

The bottom line is we do not have enough SLTs, OTs and psychologists in Ireland to diagnose and treat our children. We train health professionals in Ireland for export. As a GP since 2004, I can tell the committee first-hand how soul-destroying it is working as a health professional in Ireland today, especially in the past ten years. It is getting harder every day. Multidisciplinary health professionals across the board are faced with huge workloads from the HSE. These workloads are not only unmanageable but are, quite frankly, unsafe. There are many unfilled positions on disability teams throughout the country. This does not mean health professionals do not want to work with children with additional needs. It means they do not want to take on completely unrealistic, unmanageable and unsafe workloads. These professionals want to provide good-quality service to patients. The HSE does not provide them with the opportunity to do so. It expects someone to do the work of three people. It is not good enough. The HSE does not and has never listened to health professionals, those of us on the front line who know what is going on in the real world of health. Listen to the health professionals, meet their needs and treat these people like gold. We cannot run a health service without health professionals. It is like trying to run a restaurant without food.

Our children need health professionals. We need to create more places in colleges to train SLTs, OTs and psychologists and then make Ireland a good place to work. With realistic workloads, good-quality care can then be provided. Ms Sheridan made a good point about her experience with her GP. I can empathise with that. Prior to becoming a mother of a child with autism, my knowledge of and training in autism as a GP was very minimal. We also need to train our GPs because as the mother of a child with autism, I feel I am a much better GP for patients because I now have tasted the honey. I get it.

When children with autism are supported appropriately in education and health, they can have very good outcomes. It should be remembered that most of these children are extremely gifted. What their full potential can offer the world is phenomenal. Autistic children who are not supported, however, can have very poor outcomes. A study by Trinity College Dublin published in April last year stated that these children are six times more likely to attempt suicide and twice as likely to die by suicide. These are just some of the grim statistics. Increasingly, in the past five years especially, I see teenagers coming to me who are self-harming, and with anxiety, depression and suicidal ideation. As Ms Ford can tell the committee from her work with CAMHS in a psychotherapy role, when it is peeled back, many of these teenagers with anxiety etc. have undiagnosed autism. Early diagnosis and intervention are crucial.

This is a very serious situation. The harm done to so many generations of children in this country since the foundation of the State is continuing in 2023 through many children not being supported in their education and health. This harm is on the scale of that done by the mother and baby homes. This is no exaggeration. It has to stop now. If it does not start changing today, mark my words, this Government could have blood on its hands. Is our generation no better than generations before us? Has history taught us nothing? The bottom line is twofold: mainstream education with support, with no child being refused, and more health professionals. I do not want to talk about it any more; we need to get out there to make it happen. Ms Ford and I have the drive and would like to help to make this happen. Please heed us and let us help make the change. Children are losing out and more harm is being done by the day. It stops here and stops now. Let us get on with it.