Mr. Deas?n Kelly:

Good afternoon, everyone. I thank the members for inviting me to the meeting of this joint committee.

My main concern regarding State supports and services for those on the spectrum pertains to the provision, availability and consistency of mental health services, as well as the lack of education on autism available in schools. Autism is a complex condition that necessitates intensive support from psychologists, occupational therapists, speech therapists, resource teachers and SNAs to be provided consistently in order for everyone in the spectrum to thrive. In my experience, State provision of such services has not met the need.

I received my diagnosis of autism at the age of seven, when I was attending first class in Longford. I was diagnosed by a single psychologist operating in the county's medical centre. This same psychologist was assigned to the hundreds of other children with or suspected of having autism. Following my diagnosis, appointments were few, with months or even years between them. The psychologist was overworked, with their time spread thin between the many children to whom they were assigned. As a result, they were unable to provide the consistent support clients needed.

Seven years later, when I was in my fourth year of secondary school, this same psychologist urged me to write about my experience of living with autism so that in lieu of receiving all the support they need, some children may at least be able to take comfort in knowing there are others who have gone through what they are going through now. It was, and continues to be, a similar story with many other members of the multidisciplinary team in County Longford.

I am sharing this story as I think it highlights the necessity for an expansion of the mental health and occupational therapy, OT, services provided in Ireland. We on the spectrum require stability and consistency in both the people providing our supports and the regularity with which we see them. The current infrastructure simply cannot provide the stability and I see this as a failure on the part of the State. Similarly, throughout my time in primary school, I was sent to a different resource teacher each year, many of whom were not trained in dealing with children on the spectrum. The school, like the medical centre, was understaffed and unable to cater to the needs of its pupils on the spectrum, necessitating the principal and other teachers not trained to help children with autism to undertake the duties of a resource teacher. For me, resource hours were inconsistent, with no predictable routine or recourse for my time, which caused me great anxiety, especially during my early years of school.

It is also worth mentioning that none of the three schools I attended had a sensory room during my time there. While more and more schools are now creating sensory rooms and facilities, I believe it should be mandatory for every school to have at least one sensory room and a separate area for children to run off their energy when over-stimulated and that is covered in case of rain.

The fact is that the number of children diagnosed with autism per 100 children is increasing and government services need to expand to meet this increased demand for them. I believe the focus should be on diagnosing children as early as possible so that supports can be put in place both at home and at school from a very young age. I was lucky to have had a mother who was a resource teacher by profession and was able to support me even before I was diagnosed. However, this is not the reality for the majority of young children on the spectrum whose parents may be unaware of their autistic characteristics or more commonly, who exist as a name on a waiting list not to be diagnosed for years while they remain misunderstood and frustrated.

I am not sure whether I should read out all my concerns at this point.